Hospice & Palliative Medicine

Bruce “BJ” Miller Jr., a 19-year-old Princeton (N.J.) University sophomore, was horsing around with friends near a train track in 1990 when they spotted a parked commuter train. They decided to climb over the train, and Mr. Miller was first up the ladder.

Courtesy BJ Miller

Waking up to a new body

Mr. Miller doesn’t remember much about the accident, but he recalls waking up a few days later in the ICU and feeling the need to use the bathroom. Disoriented, Mr. Miller pulled off his ventilator, climbed out of bed, and tried to walk forward, unaware of his injuries. His feet and legs had not yet been amputated. When the catheter line ran out of slack, he collapsed.

“Eventually, a nurse came rushing in, responding to the ventilator alarm bells going off,” Mr. Miller said. “My dad wasn’t far behind. It became clear to me then that this was not a dream and [I realized] what had happened and why I was in the hospital.” 

For months, Mr. Miller lived in the burn unit, undergoing countless skin grafts and surgeries. Because viable and nonviable tissue take time to be revealed after burns, surgeons take the minimum amount of tissue during each operation to give damaged tissue a chance to heal, he explained. In Mr. Miller’s case, his feet were amputated first, and later, his legs.

“In those early days from the hospital bed, my mind turned to issues related to identity,” he said. “What do I do with myself? What is the meaning of my life now? I was challenged in those ways. I had to think through who I was, and who I wanted to become.”

Mr. Miller eventually moved to the Rehabilitation Institute of Chicago (now called The Shirley Ryan AbilityLab), where he started the grueling process of rebuilding his strength and learning to walk on prosthetic legs.

“Any one day was filled with a mix of optimism and good fight and 5 minutes later, exasperation, frustration, tons of pain, and insecurity about my body,” he said. “My family and friends held the gate for me in a way, but a lot of the work was up to me. I had to believe that I deserved this love, that I wanted to be alive, and that there was still something here for me.”

Courtesy BJ Miller

Mr. Miller didn’t have to look far for inspiration. His mom had lived with polio for most of her life and acquired post-polio syndrome as she grew older, he said. When he was a child, his mom walked with crutches, and she became wheelchair-dependent by the time he was a teenager. 

After the first surgery to amputate his feet, Mr. Miller and his mom shared a deep discussion about his joining the ranks of “the disabled,” and how their connection was now even stronger.

“In this way, the injuries unlocked even more experiences to share between us, and more love to feel, and therefore some early sense of gain to complement all the losses happening,” he said. “She had taught me so much about living with disability and had given me all the tools I needed to refashion my sense of self.”
 

From burn patient to medical student

After returning to Princeton University and finishing his undergraduate degree, Mr. Miller decided to go into medicine. He wanted to use his experience to help patients and find ways to improve weaknesses in the health care system, he said. But he made a deal with himself that he wouldn’t become a doctor for the sake of becoming one; he would enter the vocation only if he could do the work and enjoy the job.

“I wasn’t sure if I could do it,” he said. “There weren’t a lot of triple amputees to point to, to say whether this was even mechanically possible, to get through the training. The medical institutions I spoke with knew they had some obligation by law to protect me, but there’s also an obligation that I need to be able to fulfill the competencies. This was uncharted water.”

Because his greatest physical challenge was standing for long periods, instructors at the University of California, San Francisco, made accommodations to alleviate the strain. His clinical rotations for example, were organized near his home to limit the need for travel. On surgical rotations, he was allowed to sit on a stool.

Medical training progressed smoothly until Mr. Miller completed a rotation in his chosen specialty, rehabilitation medicine. He didn’t enjoy it. The passion and meaning he hoped to find was missing. Disillusioned, and with his final year in medical school coming to an end, Mr. Miller dropped out of the Match program. Around the same time, his sister, Lisa, died by suicide.

“My whole family life was in shambles,” he said. “I felt like, ‘I can’t even help my sister, how am I going to help other people?’ ”

Mr. Miller earned his MD and moved to his parents’ home in Milwaukee after his sister’s death. He was close to giving up on medicine, but his deans convinced him to do a post-doc internship. It was as an intern at the Medical College of Wisconsin, Milwaukee, that he completed an elective in palliative care. 

“I fell immediately in love with it the first day,” he said. “This was a field devoted to working with things you can’t change and dealing with a lack of control, what it’s like to live with these diagnoses. This was a place where I could dig into my experience and share that with patients and families. This was a place where my life story had something to offer.”
 

Creating a new form of palliative care

Dr. Miller went on to complete a fellowship at Harvard Medical School, Boston, in hospice and palliative medicine. He became a palliative care physician at UCSF Health, and later directed the Zen Hospice Project, a nonprofit dedicated to teaching mindfulness-based caregiving for professionals, family members, and caregivers.

Courtesy BJ Miller

Gayle Kojimoto, a program manager who worked with Dr. Miller at UCSF’s outpatient palliative care clinic for cancer patients, said Miller was a favorite among patients because of his authenticity and his ability to make them feel understood.

“Patients love him because he is 100% present with them,” said Ms. Kojimoto. “They feel like he can understand their suffering better than other docs. He’s open to hearing about their suffering, when others may not be, and he doesn’t judge them. Many patients have said that seeing him is better than seeing a therapist.”

In 2020, Dr. Miller cofounded Mettle Health, a first-of-its-kind company that aims to reframe the way people think about their well-being as it relates to chronic and serious illness. Mettle Health’s care team provides consultations on a range of topics, including practical, emotional, and existential issues. No physician referrals are needed.

When the pandemic started, Dr. Miller said he and his colleagues felt the moment was ripe for bringing palliative care online to increase access, while decreasing caregiver and clinician burnout.

“We set up Mettle Health as an online palliative care counseling and coaching business and we pulled it out of the healthcare system so that whether you’re a patient or a caregiver you don’t need to satisfy some insurance need to get this kind of care,” he said. “We also realized there are enough people writing prescriptions. The medical piece is relatively well tended to; it’s the psychosocial and spiritual issues, and the existential issues, that are so underdeveloped. We are a social service, not a medical service, and this allows us to complement existing structures of care rather than compete with them.”

Having Dr. Miller as a leader for Mettle Health is a huge driver for why people seek out the company, said Sonya Dolan, director of operations and cofounder of Mettle Health.

“His approach to working with patients, caregivers, and clinicians is something I think sets us apart and makes us special,” she said. “His way of thinking about serious illness and death and dying is incredibly unique and he has a way of talking about and humanizing something that’s scary for a lot of us.”
 

‘Surprised by how much I can still do’

Since the accident, Dr. Miller has come a long way in navigating his physical limitations. In the early years, Dr. Miller said he was determined to do as many activities as he still could. He skied, biked, and pushed himself to stand for long periods on his prosthetic legs.  

“For years, I would force myself to do these things just to prove I could, but not really enjoy them,” he said. “I’d get out on the dance floor or put myself out in vulnerable social situations where I might fall. It was kind of brutal and difficult. But at about year 5 or so, I became much more at ease with myself and more at peace with myself.”

Today, Dr. Miller’s prosthetics make nearly all ambulatory activities possible, but he concentrates on the activities that bring him joy.

“Probably the thing I can still do that surprises people most, including myself, is riding a motorcycle,” he said. “As for my upper body, I’m thoroughly used to living with only one hand and I continue to be surprised at how much I can still do. With enough time and experimentation, I can usually find a way to do what I need/want to do. It took me awhile to figure out how to clap! Now I just pound my chest for the same effect!”

Dr. Miller is an animal-lover and said his pets and nature are a large part of his self-care. His dog Maysie travels nearly everywhere with him and his cats, the Muffin Man and Darkness, enjoy making guest appearances on his Zoom calls. The physician frequently visits the desert in southern Utah and said he loves the arts, architecture, and design.

Dr. Miller’s advice for others who are disabled and want to go into medicine? Live out loud with your truths and be open about your disabilities. Too often, disabled individuals hide their disabilities, lie about them, or shield the world from their story, he said. 

“These are rich, ripe experiences that are incredibly valuable to someone who wants to go out and be of service in the world,” he said. “We should be proud of our experiences as disabled people. The creativity we’ve had to exercise, the workarounds we’ve had to employ, these should not be points of embarrassment, but points of pride. Anyone who wants to pursue clinical training of any kind should use these experiences explicitly. These are sources of strength, not something to be forgiven or tolerated or accommodated.” 

The same goes for physicians who do not have disabilities but who have lived through hardship, pain, struggle, or adversity, he emphasized.

“Find a way to learn from them, find a way to own them,” he said. “Use them as a source of strength and the rest of the world will respond to you differently.”

A version of this article first appeared on Medscape.com.

Bruce “BJ” Miller Jr., a 19-year-old Princeton (N.J.) University sophomore, was horsing around with friends near a train track in 1990 when they spotted a parked commuter train. They decided to climb over the train, and Mr. Miller was first up the ladder.

Courtesy BJ Miller

Waking up to a new body

Mr. Miller doesn’t remember much about the accident, but he recalls waking up a few days later in the ICU and feeling the need to use the bathroom. Disoriented, Mr. Miller pulled off his ventilator, climbed out of bed, and tried to walk forward, unaware of his injuries. His feet and legs had not yet been amputated. When the catheter line ran out of slack, he collapsed.

“Eventually, a nurse came rushing in, responding to the ventilator alarm bells going off,” Mr. Miller said. “My dad wasn’t far behind. It became clear to me then that this was not a dream and [I realized] what had happened and why I was in the hospital.” 

For months, Mr. Miller lived in the burn unit, undergoing countless skin grafts and surgeries. Because viable and nonviable tissue take time to be revealed after burns, surgeons take the minimum amount of tissue during each operation to give damaged tissue a chance to heal, he explained. In Mr. Miller’s case, his feet were amputated first, and later, his legs.

“In those early days from the hospital bed, my mind turned to issues related to identity,” he said. “What do I do with myself? What is the meaning of my life now? I was challenged in those ways. I had to think through who I was, and who I wanted to become.”

Mr. Miller eventually moved to the Rehabilitation Institute of Chicago (now called The Shirley Ryan AbilityLab), where he started the grueling process of rebuilding his strength and learning to walk on prosthetic legs.

“Any one day was filled with a mix of optimism and good fight and 5 minutes later, exasperation, frustration, tons of pain, and insecurity about my body,” he said. “My family and friends held the gate for me in a way, but a lot of the work was up to me. I had to believe that I deserved this love, that I wanted to be alive, and that there was still something here for me.”

Courtesy BJ Miller

Mr. Miller didn’t have to look far for inspiration. His mom had lived with polio for most of her life and acquired post-polio syndrome as she grew older, he said. When he was a child, his mom walked with crutches, and she became wheelchair-dependent by the time he was a teenager. 

After the first surgery to amputate his feet, Mr. Miller and his mom shared a deep discussion about his joining the ranks of “the disabled,” and how their connection was now even stronger.

“In this way, the injuries unlocked even more experiences to share between us, and more love to feel, and therefore some early sense of gain to complement all the losses happening,” he said. “She had taught me so much about living with disability and had given me all the tools I needed to refashion my sense of self.”
 

From burn patient to medical student

After returning to Princeton University and finishing his undergraduate degree, Mr. Miller decided to go into medicine. He wanted to use his experience to help patients and find ways to improve weaknesses in the health care system, he said. But he made a deal with himself that he wouldn’t become a doctor for the sake of becoming one; he would enter the vocation only if he could do the work and enjoy the job.

“I wasn’t sure if I could do it,” he said. “There weren’t a lot of triple amputees to point to, to say whether this was even mechanically possible, to get through the training. The medical institutions I spoke with knew they had some obligation by law to protect me, but there’s also an obligation that I need to be able to fulfill the competencies. This was uncharted water.”

Because his greatest physical challenge was standing for long periods, instructors at the University of California, San Francisco, made accommodations to alleviate the strain. His clinical rotations for example, were organized near his home to limit the need for travel. On surgical rotations, he was allowed to sit on a stool.

Medical training progressed smoothly until Mr. Miller completed a rotation in his chosen specialty, rehabilitation medicine. He didn’t enjoy it. The passion and meaning he hoped to find was missing. Disillusioned, and with his final year in medical school coming to an end, Mr. Miller dropped out of the Match program. Around the same time, his sister, Lisa, died by suicide.

“My whole family life was in shambles,” he said. “I felt like, ‘I can’t even help my sister, how am I going to help other people?’ ”

Mr. Miller earned his MD and moved to his parents’ home in Milwaukee after his sister’s death. He was close to giving up on medicine, but his deans convinced him to do a post-doc internship. It was as an intern at the Medical College of Wisconsin, Milwaukee, that he completed an elective in palliative care. 

“I fell immediately in love with it the first day,” he said. “This was a field devoted to working with things you can’t change and dealing with a lack of control, what it’s like to live with these diagnoses. This was a place where I could dig into my experience and share that with patients and families. This was a place where my life story had something to offer.”
 

Creating a new form of palliative care

Dr. Miller went on to complete a fellowship at Harvard Medical School, Boston, in hospice and palliative medicine. He became a palliative care physician at UCSF Health, and later directed the Zen Hospice Project, a nonprofit dedicated to teaching mindfulness-based caregiving for professionals, family members, and caregivers.

Courtesy BJ Miller

Gayle Kojimoto, a program manager who worked with Dr. Miller at UCSF’s outpatient palliative care clinic for cancer patients, said Miller was a favorite among patients because of his authenticity and his ability to make them feel understood.

“Patients love him because he is 100% present with them,” said Ms. Kojimoto. “They feel like he can understand their suffering better than other docs. He’s open to hearing about their suffering, when others may not be, and he doesn’t judge them. Many patients have said that seeing him is better than seeing a therapist.”

In 2020, Dr. Miller cofounded Mettle Health, a first-of-its-kind company that aims to reframe the way people think about their well-being as it relates to chronic and serious illness. Mettle Health’s care team provides consultations on a range of topics, including practical, emotional, and existential issues. No physician referrals are needed.

When the pandemic started, Dr. Miller said he and his colleagues felt the moment was ripe for bringing palliative care online to increase access, while decreasing caregiver and clinician burnout.

“We set up Mettle Health as an online palliative care counseling and coaching business and we pulled it out of the healthcare system so that whether you’re a patient or a caregiver you don’t need to satisfy some insurance need to get this kind of care,” he said. “We also realized there are enough people writing prescriptions. The medical piece is relatively well tended to; it’s the psychosocial and spiritual issues, and the existential issues, that are so underdeveloped. We are a social service, not a medical service, and this allows us to complement existing structures of care rather than compete with them.”

Having Dr. Miller as a leader for Mettle Health is a huge driver for why people seek out the company, said Sonya Dolan, director of operations and cofounder of Mettle Health.

“His approach to working with patients, caregivers, and clinicians is something I think sets us apart and makes us special,” she said. “His way of thinking about serious illness and death and dying is incredibly unique and he has a way of talking about and humanizing something that’s scary for a lot of us.”
 

‘Surprised by how much I can still do’

Since the accident, Dr. Miller has come a long way in navigating his physical limitations. In the early years, Dr. Miller said he was determined to do as many activities as he still could. He skied, biked, and pushed himself to stand for long periods on his prosthetic legs.  

“For years, I would force myself to do these things just to prove I could, but not really enjoy them,” he said. “I’d get out on the dance floor or put myself out in vulnerable social situations where I might fall. It was kind of brutal and difficult. But at about year 5 or so, I became much more at ease with myself and more at peace with myself.”

Today, Dr. Miller’s prosthetics make nearly all ambulatory activities possible, but he concentrates on the activities that bring him joy.

“Probably the thing I can still do that surprises people most, including myself, is riding a motorcycle,” he said. “As for my upper body, I’m thoroughly used to living with only one hand and I continue to be surprised at how much I can still do. With enough time and experimentation, I can usually find a way to do what I need/want to do. It took me awhile to figure out how to clap! Now I just pound my chest for the same effect!”

Dr. Miller is an animal-lover and said his pets and nature are a large part of his self-care. His dog Maysie travels nearly everywhere with him and his cats, the Muffin Man and Darkness, enjoy making guest appearances on his Zoom calls. The physician frequently visits the desert in southern Utah and said he loves the arts, architecture, and design.

Dr. Miller’s advice for others who are disabled and want to go into medicine? Live out loud with your truths and be open about your disabilities. Too often, disabled individuals hide their disabilities, lie about them, or shield the world from their story, he said. 

“These are rich, ripe experiences that are incredibly valuable to someone who wants to go out and be of service in the world,” he said. “We should be proud of our experiences as disabled people. The creativity we’ve had to exercise, the workarounds we’ve had to employ, these should not be points of embarrassment, but points of pride. Anyone who wants to pursue clinical training of any kind should use these experiences explicitly. These are sources of strength, not something to be forgiven or tolerated or accommodated.” 

The same goes for physicians who do not have disabilities but who have lived through hardship, pain, struggle, or adversity, he emphasized.

“Find a way to learn from them, find a way to own them,” he said. “Use them as a source of strength and the rest of the world will respond to you differently.”

A version of this article first appeared on Medscape.com.

Bruce “BJ” Miller Jr., a 19-year-old Princeton (N.J.) University sophomore, was horsing around with friends near a train track in 1990 when they spotted a parked commuter train. They decided to climb over the train, and Mr. Miller was first up the ladder.

Courtesy BJ Miller

Waking up to a new body

Mr. Miller doesn’t remember much about the accident, but he recalls waking up a few days later in the ICU and feeling the need to use the bathroom. Disoriented, Mr. Miller pulled off his ventilator, climbed out of bed, and tried to walk forward, unaware of his injuries. His feet and legs had not yet been amputated. When the catheter line ran out of slack, he collapsed.

“Eventually, a nurse came rushing in, responding to the ventilator alarm bells going off,” Mr. Miller said. “My dad wasn’t far behind. It became clear to me then that this was not a dream and [I realized] what had happened and why I was in the hospital.” 

For months, Mr. Miller lived in the burn unit, undergoing countless skin grafts and surgeries. Because viable and nonviable tissue take time to be revealed after burns, surgeons take the minimum amount of tissue during each operation to give damaged tissue a chance to heal, he explained. In Mr. Miller’s case, his feet were amputated first, and later, his legs.

“In those early days from the hospital bed, my mind turned to issues related to identity,” he said. “What do I do with myself? What is the meaning of my life now? I was challenged in those ways. I had to think through who I was, and who I wanted to become.”

Mr. Miller eventually moved to the Rehabilitation Institute of Chicago (now called The Shirley Ryan AbilityLab), where he started the grueling process of rebuilding his strength and learning to walk on prosthetic legs.

“Any one day was filled with a mix of optimism and good fight and 5 minutes later, exasperation, frustration, tons of pain, and insecurity about my body,” he said. “My family and friends held the gate for me in a way, but a lot of the work was up to me. I had to believe that I deserved this love, that I wanted to be alive, and that there was still something here for me.”

Courtesy BJ Miller

Mr. Miller didn’t have to look far for inspiration. His mom had lived with polio for most of her life and acquired post-polio syndrome as she grew older, he said. When he was a child, his mom walked with crutches, and she became wheelchair-dependent by the time he was a teenager. 

After the first surgery to amputate his feet, Mr. Miller and his mom shared a deep discussion about his joining the ranks of “the disabled,” and how their connection was now even stronger.

“In this way, the injuries unlocked even more experiences to share between us, and more love to feel, and therefore some early sense of gain to complement all the losses happening,” he said. “She had taught me so much about living with disability and had given me all the tools I needed to refashion my sense of self.”
 

From burn patient to medical student

After returning to Princeton University and finishing his undergraduate degree, Mr. Miller decided to go into medicine. He wanted to use his experience to help patients and find ways to improve weaknesses in the health care system, he said. But he made a deal with himself that he wouldn’t become a doctor for the sake of becoming one; he would enter the vocation only if he could do the work and enjoy the job.

“I wasn’t sure if I could do it,” he said. “There weren’t a lot of triple amputees to point to, to say whether this was even mechanically possible, to get through the training. The medical institutions I spoke with knew they had some obligation by law to protect me, but there’s also an obligation that I need to be able to fulfill the competencies. This was uncharted water.”

Because his greatest physical challenge was standing for long periods, instructors at the University of California, San Francisco, made accommodations to alleviate the strain. His clinical rotations for example, were organized near his home to limit the need for travel. On surgical rotations, he was allowed to sit on a stool.

Medical training progressed smoothly until Mr. Miller completed a rotation in his chosen specialty, rehabilitation medicine. He didn’t enjoy it. The passion and meaning he hoped to find was missing. Disillusioned, and with his final year in medical school coming to an end, Mr. Miller dropped out of the Match program. Around the same time, his sister, Lisa, died by suicide.

“My whole family life was in shambles,” he said. “I felt like, ‘I can’t even help my sister, how am I going to help other people?’ ”

Mr. Miller earned his MD and moved to his parents’ home in Milwaukee after his sister’s death. He was close to giving up on medicine, but his deans convinced him to do a post-doc internship. It was as an intern at the Medical College of Wisconsin, Milwaukee, that he completed an elective in palliative care. 

“I fell immediately in love with it the first day,” he said. “This was a field devoted to working with things you can’t change and dealing with a lack of control, what it’s like to live with these diagnoses. This was a place where I could dig into my experience and share that with patients and families. This was a place where my life story had something to offer.”
 

Creating a new form of palliative care

Dr. Miller went on to complete a fellowship at Harvard Medical School, Boston, in hospice and palliative medicine. He became a palliative care physician at UCSF Health, and later directed the Zen Hospice Project, a nonprofit dedicated to teaching mindfulness-based caregiving for professionals, family members, and caregivers.

Courtesy BJ Miller

Gayle Kojimoto, a program manager who worked with Dr. Miller at UCSF’s outpatient palliative care clinic for cancer patients, said Miller was a favorite among patients because of his authenticity and his ability to make them feel understood.

“Patients love him because he is 100% present with them,” said Ms. Kojimoto. “They feel like he can understand their suffering better than other docs. He’s open to hearing about their suffering, when others may not be, and he doesn’t judge them. Many patients have said that seeing him is better than seeing a therapist.”

In 2020, Dr. Miller cofounded Mettle Health, a first-of-its-kind company that aims to reframe the way people think about their well-being as it relates to chronic and serious illness. Mettle Health’s care team provides consultations on a range of topics, including practical, emotional, and existential issues. No physician referrals are needed.

When the pandemic started, Dr. Miller said he and his colleagues felt the moment was ripe for bringing palliative care online to increase access, while decreasing caregiver and clinician burnout.

“We set up Mettle Health as an online palliative care counseling and coaching business and we pulled it out of the healthcare system so that whether you’re a patient or a caregiver you don’t need to satisfy some insurance need to get this kind of care,” he said. “We also realized there are enough people writing prescriptions. The medical piece is relatively well tended to; it’s the psychosocial and spiritual issues, and the existential issues, that are so underdeveloped. We are a social service, not a medical service, and this allows us to complement existing structures of care rather than compete with them.”

Having Dr. Miller as a leader for Mettle Health is a huge driver for why people seek out the company, said Sonya Dolan, director of operations and cofounder of Mettle Health.

“His approach to working with patients, caregivers, and clinicians is something I think sets us apart and makes us special,” she said. “His way of thinking about serious illness and death and dying is incredibly unique and he has a way of talking about and humanizing something that’s scary for a lot of us.”
 

‘Surprised by how much I can still do’

Since the accident, Dr. Miller has come a long way in navigating his physical limitations. In the early years, Dr. Miller said he was determined to do as many activities as he still could. He skied, biked, and pushed himself to stand for long periods on his prosthetic legs.  

“For years, I would force myself to do these things just to prove I could, but not really enjoy them,” he said. “I’d get out on the dance floor or put myself out in vulnerable social situations where I might fall. It was kind of brutal and difficult. But at about year 5 or so, I became much more at ease with myself and more at peace with myself.”

Today, Dr. Miller’s prosthetics make nearly all ambulatory activities possible, but he concentrates on the activities that bring him joy.

“Probably the thing I can still do that surprises people most, including myself, is riding a motorcycle,” he said. “As for my upper body, I’m thoroughly used to living with only one hand and I continue to be surprised at how much I can still do. With enough time and experimentation, I can usually find a way to do what I need/want to do. It took me awhile to figure out how to clap! Now I just pound my chest for the same effect!”

Dr. Miller is an animal-lover and said his pets and nature are a large part of his self-care. His dog Maysie travels nearly everywhere with him and his cats, the Muffin Man and Darkness, enjoy making guest appearances on his Zoom calls. The physician frequently visits the desert in southern Utah and said he loves the arts, architecture, and design.

Dr. Miller’s advice for others who are disabled and want to go into medicine? Live out loud with your truths and be open about your disabilities. Too often, disabled individuals hide their disabilities, lie about them, or shield the world from their story, he said. 

“These are rich, ripe experiences that are incredibly valuable to someone who wants to go out and be of service in the world,” he said. “We should be proud of our experiences as disabled people. The creativity we’ve had to exercise, the workarounds we’ve had to employ, these should not be points of embarrassment, but points of pride. Anyone who wants to pursue clinical training of any kind should use these experiences explicitly. These are sources of strength, not something to be forgiven or tolerated or accommodated.” 

The same goes for physicians who do not have disabilities but who have lived through hardship, pain, struggle, or adversity, he emphasized.

“Find a way to learn from them, find a way to own them,” he said. “Use them as a source of strength and the rest of the world will respond to you differently.”

A version of this article first appeared on Medscape.com.

Study Overview

Objective. To examine differences in care, specifically hospitalization towards the end of life, among nursing home residents with dementia who were Black compared with those who were White.

Design. Population based cohort study in the US. The study included all decedents with Alzheimer’s disease or related dementia (ADRD) who resided in a nursing home from 2014 to 2017. Decedents from nursing homes were identified by death within 1 day of an identified nursing home stay or within 8 days of a hospital transfer from nursing home. Data were obtained from Minimum Data Set 3.0 (MDS) which contains clinical data from all Medicaid or Medicare certified nursing homes, and from the Medicare Beneficiary Summary File (MBSF) and Medicare Provider and Analysis and Review (MedPAR) which contains hospitalization events for all Medicare Beneficiaries. These files were linked to identify nursing home residents with ADRD who were hospitalized at the end of life. ADRD diagnosis was identified from the chronic condition list from the MBSF and from MDS diagnosis list.

Setting and participants. The study included 665 033 residents from 14 595 nursing homes who died during the study period. Resident race was categorized as White or Black based on the MBSF. Severe cognitive impairment was identified using the MDS that categorized residents as severe or not using the Brief Interview for Mental Status and the Cognitive Performance Scale. The mean (SD) age of the study population was 86.7 (9.2) years for White residents and 82.6 (11.1) years for Black residents. Of the participants, 68.8% and 61.2% were female for Black and White residents, respectively. Approximately 23.4% of White and 32.5% of Black residents had severe cognitive impairment. For nursing home characteristics, 71.5% of the 14 595 nursing homes represented were for profit; average bedside was 109.5 (57.0) and occupancy rate was on average 81.2% (14.3%).

Main outcome measures. The study outcome measure was any hospitalization within 30 days prior to death. The outcome was selected as an indicator of quality of care because as older adults living with ADRD experience progressive worsening of cognitive symptoms, at the end of life when dementia is severe, advance care planning and communication with health care proxies and surrogates often result in coordinated care that avoids acute hospitalizations, which are often burdensome to both patient and family and may yield poorer quality of life.

Main results. The study found that approximately 29.5% of White decedents and 40.7% of Black decedents were hospitalized towards the end of life. Nursing homes with a higher proportion of Black residents were more likely to have residents hospitalized towards the end of life with 35% of residents hospitalized in the highest quartile (27% Black) compared with 17% hospitalized for nursing homes in the lowest quartile (0% Black).After adjusting for covariates, Black residents were 7.9% more likely to be hospitalized in the last 30 days of life compared with White residents. Blacks with severe cognitive impairment has elevated risk of hospitalization by 4.9% when compared with White residents. After accounting for nursing home facility–level characteristics, nursing homes with a low proportion of Black residents had a 5.2% higher risk of hospitalizations compared with nursing homes with no Black residents, and nursing homes with a higher percentage of Black residents had a 13.3% higher risk of hospitalization compared with nursing homes with no Black residents.

Conclusion. Race is associated with care disparities in older nursing home residents with dementia. This study suggests that hospitalization towards the end of life as a quality of care marker differs across nursing homes, and nursing homes with a higher proportion of Black residents were more likely to be hospitalized. This suggests that these nursing homes may have fewer resources and delivered poorer quality of care, and that disparities in health systems or institutions contribute to differences in quality of care for this vulnerable group.

Commentary

Disparities of health status, health care, and affordability across race and ethnicity have persisted throughout the past 20 years.¹ There is further evidence to support systemic differences that can contribute to differences in health outcomes.² Although changes in health care policy such as the Affordable Care Act have expanded health care coverage, and instituted changes that aims to improve health care quality and reduce disparities, it is clear that factors contributing to disparities in care are structural and perhaps systemic. The latest evidence comes in this study that examines racial disparities in health care quality in one of the most vulnerable populations—older adults with Alzheimer’s disease and dementia. The finding that Black nursing home residents, when compared with White residents, often has higher risk of hospitalization at the end of life, even among those with severe dementia where better coordinated care, clear goals of care and perhaps instituting palliative care would result in lower rate of hospitalization. The disparities were observed across nursing homes as well, where nursing homes with higher proportion of Black residents appear to have lower quality of care.

These findings are consistent with prior work that has examined differences in Black and White population on uptake of palliative care, discussion, and the documentation of advance care planning.³ Factors that may contribute to these differences include mistrust of the health care system among minorities, and not being connected to adequate health care resources. Family members and surrogate health care decision makers may consider receiving more aggressive care as advocating for better health care for their family members.⁴ These differences may contribute to the differences in hospitalization rates among residents within the same nursing home; however, the differences between nursing homes even after accounting for individual differences may indicate more widespread systemic differences that is associated with race. Policy changes that will address these differences are needed to level these differences so that quality care can be delivered regardless of race.⁵ For this vulnerable population with a terminal illness, approaches to enhance uptake of palliative approaches and care delivery for dementia patients at terminal stage are needed and understanding and targeting factors that contribute to low uptake of these approaches will enhance end of life care. Understanding the differences in resources and systems of care in nursing homes and perhaps how palliative care is integrated in these settings will be important to address care disparities that occurs across nursing homes.

Applications for Clinical Practice

Clinicians who take care of this population of older adults with advanced dementia should be aware of the potential for racial disparities that may lead to differences in the quality of care. The underlying reasons for these differences could be targeted so that older adults in all racial groups may have equal access to quality care including palliative approaches that avoid aggressive care for terminal illnesses across settings that may yield better care and quality of life. Policy makers and health systems leaders need to consider the current realities with racial disparities that policies need to address these differences so that they may not continue to persist in our systems of care.

Financial disclosures: None.

Study Overview

Objective. To examine differences in care, specifically hospitalization towards the end of life, among nursing home residents with dementia who were Black compared with those who were White.

Design. Population based cohort study in the US. The study included all decedents with Alzheimer’s disease or related dementia (ADRD) who resided in a nursing home from 2014 to 2017. Decedents from nursing homes were identified by death within 1 day of an identified nursing home stay or within 8 days of a hospital transfer from nursing home. Data were obtained from Minimum Data Set 3.0 (MDS) which contains clinical data from all Medicaid or Medicare certified nursing homes, and from the Medicare Beneficiary Summary File (MBSF) and Medicare Provider and Analysis and Review (MedPAR) which contains hospitalization events for all Medicare Beneficiaries. These files were linked to identify nursing home residents with ADRD who were hospitalized at the end of life. ADRD diagnosis was identified from the chronic condition list from the MBSF and from MDS diagnosis list.

Setting and participants. The study included 665 033 residents from 14 595 nursing homes who died during the study period. Resident race was categorized as White or Black based on the MBSF. Severe cognitive impairment was identified using the MDS that categorized residents as severe or not using the Brief Interview for Mental Status and the Cognitive Performance Scale. The mean (SD) age of the study population was 86.7 (9.2) years for White residents and 82.6 (11.1) years for Black residents. Of the participants, 68.8% and 61.2% were female for Black and White residents, respectively. Approximately 23.4% of White and 32.5% of Black residents had severe cognitive impairment. For nursing home characteristics, 71.5% of the 14 595 nursing homes represented were for profit; average bedside was 109.5 (57.0) and occupancy rate was on average 81.2% (14.3%).

Main outcome measures. The study outcome measure was any hospitalization within 30 days prior to death. The outcome was selected as an indicator of quality of care because as older adults living with ADRD experience progressive worsening of cognitive symptoms, at the end of life when dementia is severe, advance care planning and communication with health care proxies and surrogates often result in coordinated care that avoids acute hospitalizations, which are often burdensome to both patient and family and may yield poorer quality of life.

Main results. The study found that approximately 29.5% of White decedents and 40.7% of Black decedents were hospitalized towards the end of life. Nursing homes with a higher proportion of Black residents were more likely to have residents hospitalized towards the end of life with 35% of residents hospitalized in the highest quartile (27% Black) compared with 17% hospitalized for nursing homes in the lowest quartile (0% Black).After adjusting for covariates, Black residents were 7.9% more likely to be hospitalized in the last 30 days of life compared with White residents. Blacks with severe cognitive impairment has elevated risk of hospitalization by 4.9% when compared with White residents. After accounting for nursing home facility–level characteristics, nursing homes with a low proportion of Black residents had a 5.2% higher risk of hospitalizations compared with nursing homes with no Black residents, and nursing homes with a higher percentage of Black residents had a 13.3% higher risk of hospitalization compared with nursing homes with no Black residents.

Conclusion. Race is associated with care disparities in older nursing home residents with dementia. This study suggests that hospitalization towards the end of life as a quality of care marker differs across nursing homes, and nursing homes with a higher proportion of Black residents were more likely to be hospitalized. This suggests that these nursing homes may have fewer resources and delivered poorer quality of care, and that disparities in health systems or institutions contribute to differences in quality of care for this vulnerable group.

Commentary

Disparities of health status, health care, and affordability across race and ethnicity have persisted throughout the past 20 years.¹ There is further evidence to support systemic differences that can contribute to differences in health outcomes.² Although changes in health care policy such as the Affordable Care Act have expanded health care coverage, and instituted changes that aims to improve health care quality and reduce disparities, it is clear that factors contributing to disparities in care are structural and perhaps systemic. The latest evidence comes in this study that examines racial disparities in health care quality in one of the most vulnerable populations—older adults with Alzheimer’s disease and dementia. The finding that Black nursing home residents, when compared with White residents, often has higher risk of hospitalization at the end of life, even among those with severe dementia where better coordinated care, clear goals of care and perhaps instituting palliative care would result in lower rate of hospitalization. The disparities were observed across nursing homes as well, where nursing homes with higher proportion of Black residents appear to have lower quality of care.

These findings are consistent with prior work that has examined differences in Black and White population on uptake of palliative care, discussion, and the documentation of advance care planning.³ Factors that may contribute to these differences include mistrust of the health care system among minorities, and not being connected to adequate health care resources. Family members and surrogate health care decision makers may consider receiving more aggressive care as advocating for better health care for their family members.⁴ These differences may contribute to the differences in hospitalization rates among residents within the same nursing home; however, the differences between nursing homes even after accounting for individual differences may indicate more widespread systemic differences that is associated with race. Policy changes that will address these differences are needed to level these differences so that quality care can be delivered regardless of race.⁵ For this vulnerable population with a terminal illness, approaches to enhance uptake of palliative approaches and care delivery for dementia patients at terminal stage are needed and understanding and targeting factors that contribute to low uptake of these approaches will enhance end of life care. Understanding the differences in resources and systems of care in nursing homes and perhaps how palliative care is integrated in these settings will be important to address care disparities that occurs across nursing homes.

Applications for Clinical Practice

Clinicians who take care of this population of older adults with advanced dementia should be aware of the potential for racial disparities that may lead to differences in the quality of care. The underlying reasons for these differences could be targeted so that older adults in all racial groups may have equal access to quality care including palliative approaches that avoid aggressive care for terminal illnesses across settings that may yield better care and quality of life. Policy makers and health systems leaders need to consider the current realities with racial disparities that policies need to address these differences so that they may not continue to persist in our systems of care.

Financial disclosures: None.

Study Overview

Objective. To examine differences in care, specifically hospitalization towards the end of life, among nursing home residents with dementia who were Black compared with those who were White.

Design. Population based cohort study in the US. The study included all decedents with Alzheimer’s disease or related dementia (ADRD) who resided in a nursing home from 2014 to 2017. Decedents from nursing homes were identified by death within 1 day of an identified nursing home stay or within 8 days of a hospital transfer from nursing home. Data were obtained from Minimum Data Set 3.0 (MDS) which contains clinical data from all Medicaid or Medicare certified nursing homes, and from the Medicare Beneficiary Summary File (MBSF) and Medicare Provider and Analysis and Review (MedPAR) which contains hospitalization events for all Medicare Beneficiaries. These files were linked to identify nursing home residents with ADRD who were hospitalized at the end of life. ADRD diagnosis was identified from the chronic condition list from the MBSF and from MDS diagnosis list.

Setting and participants. The study included 665 033 residents from 14 595 nursing homes who died during the study period. Resident race was categorized as White or Black based on the MBSF. Severe cognitive impairment was identified using the MDS that categorized residents as severe or not using the Brief Interview for Mental Status and the Cognitive Performance Scale. The mean (SD) age of the study population was 86.7 (9.2) years for White residents and 82.6 (11.1) years for Black residents. Of the participants, 68.8% and 61.2% were female for Black and White residents, respectively. Approximately 23.4% of White and 32.5% of Black residents had severe cognitive impairment. For nursing home characteristics, 71.5% of the 14 595 nursing homes represented were for profit; average bedside was 109.5 (57.0) and occupancy rate was on average 81.2% (14.3%).

Main outcome measures. The study outcome measure was any hospitalization within 30 days prior to death. The outcome was selected as an indicator of quality of care because as older adults living with ADRD experience progressive worsening of cognitive symptoms, at the end of life when dementia is severe, advance care planning and communication with health care proxies and surrogates often result in coordinated care that avoids acute hospitalizations, which are often burdensome to both patient and family and may yield poorer quality of life.

Main results. The study found that approximately 29.5% of White decedents and 40.7% of Black decedents were hospitalized towards the end of life. Nursing homes with a higher proportion of Black residents were more likely to have residents hospitalized towards the end of life with 35% of residents hospitalized in the highest quartile (27% Black) compared with 17% hospitalized for nursing homes in the lowest quartile (0% Black).After adjusting for covariates, Black residents were 7.9% more likely to be hospitalized in the last 30 days of life compared with White residents. Blacks with severe cognitive impairment has elevated risk of hospitalization by 4.9% when compared with White residents. After accounting for nursing home facility–level characteristics, nursing homes with a low proportion of Black residents had a 5.2% higher risk of hospitalizations compared with nursing homes with no Black residents, and nursing homes with a higher percentage of Black residents had a 13.3% higher risk of hospitalization compared with nursing homes with no Black residents.

Conclusion. Race is associated with care disparities in older nursing home residents with dementia. This study suggests that hospitalization towards the end of life as a quality of care marker differs across nursing homes, and nursing homes with a higher proportion of Black residents were more likely to be hospitalized. This suggests that these nursing homes may have fewer resources and delivered poorer quality of care, and that disparities in health systems or institutions contribute to differences in quality of care for this vulnerable group.

Commentary

Disparities of health status, health care, and affordability across race and ethnicity have persisted throughout the past 20 years.¹ There is further evidence to support systemic differences that can contribute to differences in health outcomes.² Although changes in health care policy such as the Affordable Care Act have expanded health care coverage, and instituted changes that aims to improve health care quality and reduce disparities, it is clear that factors contributing to disparities in care are structural and perhaps systemic. The latest evidence comes in this study that examines racial disparities in health care quality in one of the most vulnerable populations—older adults with Alzheimer’s disease and dementia. The finding that Black nursing home residents, when compared with White residents, often has higher risk of hospitalization at the end of life, even among those with severe dementia where better coordinated care, clear goals of care and perhaps instituting palliative care would result in lower rate of hospitalization. The disparities were observed across nursing homes as well, where nursing homes with higher proportion of Black residents appear to have lower quality of care.

These findings are consistent with prior work that has examined differences in Black and White population on uptake of palliative care, discussion, and the documentation of advance care planning.³ Factors that may contribute to these differences include mistrust of the health care system among minorities, and not being connected to adequate health care resources. Family members and surrogate health care decision makers may consider receiving more aggressive care as advocating for better health care for their family members.⁴ These differences may contribute to the differences in hospitalization rates among residents within the same nursing home; however, the differences between nursing homes even after accounting for individual differences may indicate more widespread systemic differences that is associated with race. Policy changes that will address these differences are needed to level these differences so that quality care can be delivered regardless of race.⁵ For this vulnerable population with a terminal illness, approaches to enhance uptake of palliative approaches and care delivery for dementia patients at terminal stage are needed and understanding and targeting factors that contribute to low uptake of these approaches will enhance end of life care. Understanding the differences in resources and systems of care in nursing homes and perhaps how palliative care is integrated in these settings will be important to address care disparities that occurs across nursing homes.

Applications for Clinical Practice

Clinicians who take care of this population of older adults with advanced dementia should be aware of the potential for racial disparities that may lead to differences in the quality of care. The underlying reasons for these differences could be targeted so that older adults in all racial groups may have equal access to quality care including palliative approaches that avoid aggressive care for terminal illnesses across settings that may yield better care and quality of life. Policy makers and health systems leaders need to consider the current realities with racial disparities that policies need to address these differences so that they may not continue to persist in our systems of care.

Financial disclosures: None.

Veterans living with cancer need comprehensive assessment that includes supportive psychosocial care. The National Comprehensive Cancer Network (NCCN) and American College of Surgeons Commission on Cancer require accredited cancer centers to evaluate psychosocial distress and provide appropriate triage and treatment for all patients.^1-3 Implementing psychosocial distress screening can be difficult because of procedural barriers and time constraints, clinic and supportive care resources, and lack of knowledge about how to access supportive services.

Distress screening protocols must be designed to address the specific needs of each population. To improve screening for cancer-related distress, deliver effective supportive services, and gain agreement on distress screening standards of care, the Coleman Foundation supported development of the Coleman Supportive Oncology Collaborative (CSOC), a project of 135 interdisciplinary health care professionals from 25 Chicago-area cancer care institutions.⁴

The Jesse Brown US Department of Veterans Affairs (VA) Medical Center (JBVAMC) was chosen to assess cancer-related concerns among veterans using the CSOC screening tool and to improve access to supportive oncology. JBVAMC provides care to approximately 49,000 veterans in Chicago, Illinois, and northwestern Indiana. The JBVAMC patient population includes a large number of veterans with dual diagnoses (co-occurring substance use and mental health disorders) and veterans experiencing homelessness.

Delivering integrated screening and oncologic care that is culture and age appropriate is particularly important for veterans given their unique risk factors. The veteran population is considered vulnerable in terms of health status, psychological functioning, and social context. Veterans who use the VA health system as a principal source of care have poorer health, greater comorbid medical conditions, and an increased risk of mortality and suicide compared with the general population.^5,6 Poorer health status in veterans also may relate to old age, low income, poor education, psychological health, and minority race.^7-9

Past studies point to unique risk factors for cancer and poor cancer adjustment among veterans, which may complicate cancer treatment and end-of-life/survivorship care. Veteran-specific risk factors include military-related exposures, particularly Agent Orange and morbidity/mortality secondary to comorbid medical and psychiatric conditions (eg, chronic obstructive pulmonary disease, diabetes mellitus, and posttraumatic stress disorder [PTSD]).^10-12 Moreover, the geriatric veteran population continues to grow,with increasing rates of cancer that require unique considerations for effective cancer care.^13,14 Despite this, there are minimal data to inform best practices and supportive care approaches for veterans with cancer. Lack of guidelines specific to veterans and other populations with increased psychosocial challenges may impede successful cancer care, making distress screening procedures particularly important. This is especially the case for the JBVAMC, which serves primarily African American urban-dwelling veterans who experience high rates of cancer disparities, including increased rates of mortality and increased levels of psychosocial distress.^15,16

The goals of this program were to (1) examine levels of psychological, physical, financial, and treatment-related distress in a large sample of urban-dwelling veterans; (2) create a streamlined, sustainable process to screen a large number of veterans receiving cancer care in the outpatient setting and connect them with available supportive services; and (3) educate oncology physicians, nurses, and other staff about cancer-related distress and concerns using in-service trainings and interpersonal interactions to improve patient care. Our program was based on a Primary Care Mental Health Integration (PCMHI) model that embeds health psychologists in general medical clinics to better reach veterans dealing with mental health issues. We tailored for palliative care involvement.

Studies of this model have shown that mental health integration improves access to mental health services and mental health treatment outcomes and has higher patient and provider satisfaction.¹⁷ We were also influenced by the construct of the patient aligned care team (PACT) social worker who, in this veteran-centered approach, often functions as a care coordinator. Social work responsibilities include assessment of patients’ stressors including adjusting to the medical conditions, identifying untreated or undertreated mental health or substance abuse issues, economic instability, legal problems, and inadequate housing and transportation, which can often be exacerbated during cancer treatment.¹⁸

Methods

This institutional review board at JBVAMC reviewed and exempted this quality improvement program using the SQUIRE framework.¹⁹ It was led by a group of palliative care clinicians, psychologists, and administrators who have worked with the oncology service for many years, primarily in the care of hospitalized patients. Common palliative care services include providing care for patients with serious illness diagnosis through the illness trajectory.

Setting

At the start of this program, we assessed the current clinic workflow to determine how to best screen and assist veterans experiencing distress. We met with team members individually to identify the best method of clinic integration, including attending medical oncologists, medical oncology fellows, psychology interns, oncology nursing staff, the oncology nurse coordinator, and clinic clerks.

The JBVAMC provides cancer care through 4 half-day medical hematology-oncology clinics that serve about 50 patients per half-day clinic. The clinics are staffed by hematology-oncology fellows supervised by hematology-oncology attending physicians, who are affiliated with 2 academic medical centers. These clinics are staffed by 3 registered nurses (RNs) and a licensed practical nurse (LPN) and are adjacent to a chemotherapy infusion clinic with unique nursing staff. The JBVAMC also provides a variety of supportive care services, including extensive mental health and substance use treatment, physical and occupational therapy, acupuncture, nutrition, social work, and housing services. Following our assessment, it was evident that there were a low number of referrals from oncology clinics to supportive care services, mostly due to lack of knowledge of resources and unclear referral procedures.

Based on clinical volume, we determined that our screening program could best be implemented through a stepped approach beginning in one clinic and expanding thereafter. We began by having a palliative care physician and health psychology intern embedded in 1 weekly half-day clinic and a health psychology intern embedded in a second weekly half-day clinic. Our program included 2 health psychology interns (for each academic year of the program) who were supervised by a JBVA health psychologist.

About 15 months after successful integration within the first 2 half-day clinics, we expanded the screening program to staff an additional half-day medical oncology clinic with a palliative care APRN. This allowed us to expand the screening tool distribution and collection to 3 of 4 of the weekly half-day oncology clinics as well as to meet individually with veterans experiencing high levels of distress. Veterans were flagged as having high distress levels by either the results of their completed screening tool or by referral from a medical oncology physician. We initially established screening in clinics that were sufficiently staffed to ensure that screens were appropriately distributed and reviewed. Patients seen in nonparticipating clinics were referred to outpatient social work, mental health and/or outpatient palliative care according to oncology fellows’ clinical assessments of the patient. All oncology fellows received education about distress screening and methods for referring to supportive care. Our clinic screening program extended from February 2017 through January 2020.

Screening

Program staff screened patients with new cancer diagnoses, then identified patients for follow-up screens. This tracking allowed staff to identify patients with oncology appointments that day and cross-reference patients needing a follow-up screen.

Following feedback from the clinic nurses, we determined that nurses would provide the distress tool to patients in paper form after they completed their assessment of vitals and waited to be seen by their medical oncologist. The patient would then deliver their completed form to the nurse who would combine it with the patient’s clinic notes for the oncologist to review. Veterans who reported elevated 4-question Patient Health Questionnaire (PHQ-4) scores ≥ 6 were seen immediately by program staff. Veterans were referred to social work or psychiatry services for a same day visit if they endorsed a high level of psychological distress during clinical examination. They were referred for other supportive care services if they were determined to have practical, family, or nutrition unmet distress needs by either the program staff or oncology fellows. Program staff provided guidance to medical oncology fellows for needed referrals including social work, mental health, and palliative care follow ups (eAppendix A available at doi:10.12788/fp.0158).

Veterans referred for supportive care services were contacted by the relevant clinical administrator by phone to schedule an intake; for social work referrals, patients were either seen in a walk-in office located in a colocated building or contacted by a social worker by phone.

Our screening tool was the Coleman Foundation Supportive Oncology Collaborative Screening Tool, compiled from validated instruments. Patients completed this screening tool, which includes the PHQ-4, NCCN problem list concerns, adapted Mini Nutrition Assessment and PROMIS Pain and Fatigue measure (eAppendix B available at doi:10.12788/fp.0158).^20-22

We also worked with the VA Computerized Patient Record System (CPRS) to create an electronic template for the screening tool. Completed screening tools were manually entered by the physician, psychologists, or APRN into the CPRS chart.

We analyzed the different supportive care services available at the JBVAMC and noticed that many supportive services were available, yet these services were often separated. Therefore, we created a consult flowsheet to assist oncologists in placing referrals. These supportive care services include mental health services, a cancer support group, home health care, social services, nutrition, physical medicine and rehabilitation, and other specialty services.

Patient Education

The psychology and nursing staff created a patient information bulletin board where patients could access information about supportive services available at JBVAMC. This board required frequent replenishment of handouts because patients consulted the board regularly. Handouts and folders about common clinical issues also were placed in the clinic treatment rooms. We partnered with 2 local cancer support centers, Gilda’s Club and the Cancer Support Center, to make referrals for family members and/or caregivers who would benefit from additional support.

We provided in-service trainings for oncology fellows, including trainings on PTSD and substance abuse and their relationship to cancer care at the VA. These topics were chosen based on the feedback program staff received about perceived knowledge gaps from the oncology fellows. This program allowed for multiple informal conversations between that program staff and oncology fellows about overall patient care. We held trainings with the cancer coordinator and clinical nursing staff on strategies to identify and follow-up on cancer-related distress, and with oncology fellows to review the importance of distress screening and to instruct fellows on instructions for the consult flowsheet.

Funding

This program was funded by the Chicago-based Coleman Foundation as part of the CSOC. Funding was used to support a portion of time for administrative and clinical work of program staff, as well as data collection and analysis.

Results

We established 3 half-day integrated clinics where patients were screened and referred for services based on supportive oncology needs. In addition to our primary activities to screen and refer veterans, we held multiple educational sessions for colleagues, developed a workflow template, and integrated patient education materials into the clinics.

Screening

Veterans completed 1010 distress screens in 3 of 4 half-day oncology clinics over the 2.5-year project period. Veterans were screened at initial diagnosis and every 3 months, or during changes in their clinical care or disease status. As a result, 579 patients completed screening, with some patients doing several follow-up screens during their care. Integration of palliative care providers and health psychologists was instrumental in facilitating screening in these busy general medical oncology clinics. Most veterans were receptive to completing surveys with few refusing to fill out the survey.²³ Medical oncology fellows often used the completed screener to inform their review of systems (by reviewing the Coleman screener Physical and Other Concerns section) and connect with the supportive care staff present in clinic for patient’s identifying severe needs (ie, mental health distress or complex psychosocial needs). Veterans’ rates of distress needs and successfuloutcomes of integration with mental health and social work services have been reported elsewhere.²³

The mean (SD) age for veterans in this cohort was 72 (9.5) years. Participants were primarily African American veterans (70%), with mostly advanced disease (Table 1). Participants endorsed elevated distress needs compared with other patient populations screened in Chicago through the CSOC for depressed mood, pain, housing, transportation, and physical, nutrition, and treatment concerns.²³ Elevated presence of needs was especially prominent for food, housing and insurance/medical needs; physical concerns; nutrition, and treatment- or care-related concerns. Veterans in this cohort reported extensive financial and housing concerns: 10.4% reported food and housing concerns, 18.6% reported transportation concerns, and 9.0% reported issues paying for medical care or medications (Table 2).²⁰ Anecdotally, many experienced job loss or strain with their cancer diagnosis or were living at the poverty level before their diagnosis.

Discussion

This project created a successful program to screen veterans for psychosocial distress and triage them to appropriate services. During the project, patients in VA-outpatient oncology clinics reported significant cancer-related distress due to baseline psychosocial needs, changes in emotional and physical functioning, logistical and financial challenges of receiving cancer care, and lack of instrumental support.²³

Staff education supported successful buy-in, development and implementation of supportive oncology programs. We used a combination of in-service trainings, online trainings, and handouts to provide evidence for distress screening.²⁴ Highlighting the evidence-base that demonstrates how cancer-related distress screening improves cancer and quality of life outcomes helped to address physician reluctance to accept the additional requirements needed to address veterans’ psychosocial needs and care concerns. To increase buy-in and collaboration among team members and foster heightened understanding between providers and patients, we recommend creating accessible education for all staff levels.

One specific area of education we focused on was primary palliative care, which includes the core competencies of communication and symptom management recommended for generalists and specialists of all disciplines.²⁵ Program staff supported oncology fellows in developing their primary palliative care skills by being available to discuss basic symptom management and communication issues. VA cancer care programs could benefit from ongoing palliative care education of oncology staff to facilitate primary palliative care as well as earlier integration of secondary palliative care when needed.²⁶ Secondary palliative care or care provided directly by the palliative care team assists with complex symptom management or communication issues. For these needs, oncology fellows were encouraged to refer to either the palliative care staff available in one of the half-day clinics or to the outpatient palliative care clinic. As a unique strength, the VA allows veterans to receive concurrent cancer-directed therapy and hospice care, which enables earlier referrals to hospice care and higher quality end-of-life care and emphasizes the need for primary palliative care in oncology.^27,28

Integrating supportive oncology team members, such as licensed clinical social worker and psychology interns, was successful. This was modeled on the VA PACT, which focuses on prevention, health promotion, coordination and chronic disease management.²⁹ Social determinants of health have a major impact on health outcomes especially in veteran-specific and African American populations, making screening for distress critical.^30-32 The VA Office of Health Equity actively addresses health inequities by supporting initiation of screening programs for social determinants of health, including education, employment, exposure to abuse and violence, food insecurity, housing instability, legal needs, social isolation, transportation needs, and utility needs. This is especially needed for African-American individuals who are not only more likely to experience cancer, but also more likely to be negatively impacted by the consequences of cancer diagnosis/treatment, such as complications related to one’s job security, access to care, adverse effects, and other highly distressing needs.^33,34

Our program found that veterans with cancer often had concerns associated with food and housing insecurity, transportation and paying for medication or medical care, and screening allowed health care providers to detect and address these social determinants of health through referrals to VA and community-specific programs. Social workers integrated into VA cancer clinics are uniquely equipped to coordinate distress screening and support continuity of care by virtue of their training, connections to preexisting VA supportive services, and knowledge of community resources. This model could be used in other VA specialty clinics serving veterans with chronic illness and those with high levels of physical frailty.³⁵

Our ability to roll out distress screening was scaffolded by technological integration into existing VA systems (eg, screening results in CPRS and electronic referrals). Screening procedures could have been even more efficient with improved technology (Table 3). For example, technological limitations made it challenging to easily identify patients due for screening, requiring a cumbersome process of tracking, collecting and entering patients’ paper forms. Health care providers seeking to develop a distress screening program should consider investing in technology that allows for identification of patients requiring screening at a predetermined interval, completion of screening via tablet or personal device, integration of screening responses into the electronic health record, and automatic generation of notifications to the treating physician and appropriate support services.

Conclusions

Veterans with cancer benefited from enhanced screening and psychosocial service availability, similar to a PCMHI model. Robust screening programs helped advocate for veterans dealing with the effects of poverty through identification of need and referral to existing VA programs and services quickly and efficiently. Providing comprehensive care within ambulatory cancer clinics can address cancer-related distress and any potential barriers to care in real time. VA hospitals typically offer an array of supportive services to address veterans’ psychosocial needs, yet these services tend to be siloed. Integrated referrals can help to resolve such access barriers. Since many veterans with burdensome cancers are not able to see their VA primary care physician regularly, offering comprehensive care within medical oncology ensures complete and integrated care that includes psychosocial screening.

We believe that this program is an example of a mechanism for oncologists and palliative care clinicians to integrate their care in a way that identifies needs and triages services for vulnerable veterans. As colleagues have written, “it is fundamental to our commitment to veterans that we ensure comparable, high quality care regardless of a veteran’s gender, race, or where they live.^”34 Health care providers may underestimate the extensive change a cancer diagnosis can have on a patient’s quality of life. Cancer diagnosis and treatment have a large impact on all individuals, but this impact may be greater for individuals in poverty due to inability to work from home, inflexible work hours, and limited support structures. By creating screening programs with psychosocial integration in oncology clinics such as we have described, we hope to improve access to more equitable care for vulnerable veterans.

Veterans living with cancer need comprehensive assessment that includes supportive psychosocial care. The National Comprehensive Cancer Network (NCCN) and American College of Surgeons Commission on Cancer require accredited cancer centers to evaluate psychosocial distress and provide appropriate triage and treatment for all patients.^1-3 Implementing psychosocial distress screening can be difficult because of procedural barriers and time constraints, clinic and supportive care resources, and lack of knowledge about how to access supportive services.

Distress screening protocols must be designed to address the specific needs of each population. To improve screening for cancer-related distress, deliver effective supportive services, and gain agreement on distress screening standards of care, the Coleman Foundation supported development of the Coleman Supportive Oncology Collaborative (CSOC), a project of 135 interdisciplinary health care professionals from 25 Chicago-area cancer care institutions.⁴

The Jesse Brown US Department of Veterans Affairs (VA) Medical Center (JBVAMC) was chosen to assess cancer-related concerns among veterans using the CSOC screening tool and to improve access to supportive oncology. JBVAMC provides care to approximately 49,000 veterans in Chicago, Illinois, and northwestern Indiana. The JBVAMC patient population includes a large number of veterans with dual diagnoses (co-occurring substance use and mental health disorders) and veterans experiencing homelessness.

Delivering integrated screening and oncologic care that is culture and age appropriate is particularly important for veterans given their unique risk factors. The veteran population is considered vulnerable in terms of health status, psychological functioning, and social context. Veterans who use the VA health system as a principal source of care have poorer health, greater comorbid medical conditions, and an increased risk of mortality and suicide compared with the general population.^5,6 Poorer health status in veterans also may relate to old age, low income, poor education, psychological health, and minority race.^7-9

Past studies point to unique risk factors for cancer and poor cancer adjustment among veterans, which may complicate cancer treatment and end-of-life/survivorship care. Veteran-specific risk factors include military-related exposures, particularly Agent Orange and morbidity/mortality secondary to comorbid medical and psychiatric conditions (eg, chronic obstructive pulmonary disease, diabetes mellitus, and posttraumatic stress disorder [PTSD]).^10-12 Moreover, the geriatric veteran population continues to grow,with increasing rates of cancer that require unique considerations for effective cancer care.^13,14 Despite this, there are minimal data to inform best practices and supportive care approaches for veterans with cancer. Lack of guidelines specific to veterans and other populations with increased psychosocial challenges may impede successful cancer care, making distress screening procedures particularly important. This is especially the case for the JBVAMC, which serves primarily African American urban-dwelling veterans who experience high rates of cancer disparities, including increased rates of mortality and increased levels of psychosocial distress.^15,16

The goals of this program were to (1) examine levels of psychological, physical, financial, and treatment-related distress in a large sample of urban-dwelling veterans; (2) create a streamlined, sustainable process to screen a large number of veterans receiving cancer care in the outpatient setting and connect them with available supportive services; and (3) educate oncology physicians, nurses, and other staff about cancer-related distress and concerns using in-service trainings and interpersonal interactions to improve patient care. Our program was based on a Primary Care Mental Health Integration (PCMHI) model that embeds health psychologists in general medical clinics to better reach veterans dealing with mental health issues. We tailored for palliative care involvement.

Studies of this model have shown that mental health integration improves access to mental health services and mental health treatment outcomes and has higher patient and provider satisfaction.¹⁷ We were also influenced by the construct of the patient aligned care team (PACT) social worker who, in this veteran-centered approach, often functions as a care coordinator. Social work responsibilities include assessment of patients’ stressors including adjusting to the medical conditions, identifying untreated or undertreated mental health or substance abuse issues, economic instability, legal problems, and inadequate housing and transportation, which can often be exacerbated during cancer treatment.¹⁸

Methods

This institutional review board at JBVAMC reviewed and exempted this quality improvement program using the SQUIRE framework.¹⁹ It was led by a group of palliative care clinicians, psychologists, and administrators who have worked with the oncology service for many years, primarily in the care of hospitalized patients. Common palliative care services include providing care for patients with serious illness diagnosis through the illness trajectory.

Setting

At the start of this program, we assessed the current clinic workflow to determine how to best screen and assist veterans experiencing distress. We met with team members individually to identify the best method of clinic integration, including attending medical oncologists, medical oncology fellows, psychology interns, oncology nursing staff, the oncology nurse coordinator, and clinic clerks.

The JBVAMC provides cancer care through 4 half-day medical hematology-oncology clinics that serve about 50 patients per half-day clinic. The clinics are staffed by hematology-oncology fellows supervised by hematology-oncology attending physicians, who are affiliated with 2 academic medical centers. These clinics are staffed by 3 registered nurses (RNs) and a licensed practical nurse (LPN) and are adjacent to a chemotherapy infusion clinic with unique nursing staff. The JBVAMC also provides a variety of supportive care services, including extensive mental health and substance use treatment, physical and occupational therapy, acupuncture, nutrition, social work, and housing services. Following our assessment, it was evident that there were a low number of referrals from oncology clinics to supportive care services, mostly due to lack of knowledge of resources and unclear referral procedures.

Based on clinical volume, we determined that our screening program could best be implemented through a stepped approach beginning in one clinic and expanding thereafter. We began by having a palliative care physician and health psychology intern embedded in 1 weekly half-day clinic and a health psychology intern embedded in a second weekly half-day clinic. Our program included 2 health psychology interns (for each academic year of the program) who were supervised by a JBVA health psychologist.

About 15 months after successful integration within the first 2 half-day clinics, we expanded the screening program to staff an additional half-day medical oncology clinic with a palliative care APRN. This allowed us to expand the screening tool distribution and collection to 3 of 4 of the weekly half-day oncology clinics as well as to meet individually with veterans experiencing high levels of distress. Veterans were flagged as having high distress levels by either the results of their completed screening tool or by referral from a medical oncology physician. We initially established screening in clinics that were sufficiently staffed to ensure that screens were appropriately distributed and reviewed. Patients seen in nonparticipating clinics were referred to outpatient social work, mental health and/or outpatient palliative care according to oncology fellows’ clinical assessments of the patient. All oncology fellows received education about distress screening and methods for referring to supportive care. Our clinic screening program extended from February 2017 through January 2020.

Screening

Program staff screened patients with new cancer diagnoses, then identified patients for follow-up screens. This tracking allowed staff to identify patients with oncology appointments that day and cross-reference patients needing a follow-up screen.

Following feedback from the clinic nurses, we determined that nurses would provide the distress tool to patients in paper form after they completed their assessment of vitals and waited to be seen by their medical oncologist. The patient would then deliver their completed form to the nurse who would combine it with the patient’s clinic notes for the oncologist to review. Veterans who reported elevated 4-question Patient Health Questionnaire (PHQ-4) scores ≥ 6 were seen immediately by program staff. Veterans were referred to social work or psychiatry services for a same day visit if they endorsed a high level of psychological distress during clinical examination. They were referred for other supportive care services if they were determined to have practical, family, or nutrition unmet distress needs by either the program staff or oncology fellows. Program staff provided guidance to medical oncology fellows for needed referrals including social work, mental health, and palliative care follow ups (eAppendix A available at doi:10.12788/fp.0158).

Veterans referred for supportive care services were contacted by the relevant clinical administrator by phone to schedule an intake; for social work referrals, patients were either seen in a walk-in office located in a colocated building or contacted by a social worker by phone.

Our screening tool was the Coleman Foundation Supportive Oncology Collaborative Screening Tool, compiled from validated instruments. Patients completed this screening tool, which includes the PHQ-4, NCCN problem list concerns, adapted Mini Nutrition Assessment and PROMIS Pain and Fatigue measure (eAppendix B available at doi:10.12788/fp.0158).^20-22

We also worked with the VA Computerized Patient Record System (CPRS) to create an electronic template for the screening tool. Completed screening tools were manually entered by the physician, psychologists, or APRN into the CPRS chart.

We analyzed the different supportive care services available at the JBVAMC and noticed that many supportive services were available, yet these services were often separated. Therefore, we created a consult flowsheet to assist oncologists in placing referrals. These supportive care services include mental health services, a cancer support group, home health care, social services, nutrition, physical medicine and rehabilitation, and other specialty services.

Patient Education

The psychology and nursing staff created a patient information bulletin board where patients could access information about supportive services available at JBVAMC. This board required frequent replenishment of handouts because patients consulted the board regularly. Handouts and folders about common clinical issues also were placed in the clinic treatment rooms. We partnered with 2 local cancer support centers, Gilda’s Club and the Cancer Support Center, to make referrals for family members and/or caregivers who would benefit from additional support.

We provided in-service trainings for oncology fellows, including trainings on PTSD and substance abuse and their relationship to cancer care at the VA. These topics were chosen based on the feedback program staff received about perceived knowledge gaps from the oncology fellows. This program allowed for multiple informal conversations between that program staff and oncology fellows about overall patient care. We held trainings with the cancer coordinator and clinical nursing staff on strategies to identify and follow-up on cancer-related distress, and with oncology fellows to review the importance of distress screening and to instruct fellows on instructions for the consult flowsheet.

Funding

This program was funded by the Chicago-based Coleman Foundation as part of the CSOC. Funding was used to support a portion of time for administrative and clinical work of program staff, as well as data collection and analysis.

Results

We established 3 half-day integrated clinics where patients were screened and referred for services based on supportive oncology needs. In addition to our primary activities to screen and refer veterans, we held multiple educational sessions for colleagues, developed a workflow template, and integrated patient education materials into the clinics.

Screening

Veterans completed 1010 distress screens in 3 of 4 half-day oncology clinics over the 2.5-year project period. Veterans were screened at initial diagnosis and every 3 months, or during changes in their clinical care or disease status. As a result, 579 patients completed screening, with some patients doing several follow-up screens during their care. Integration of palliative care providers and health psychologists was instrumental in facilitating screening in these busy general medical oncology clinics. Most veterans were receptive to completing surveys with few refusing to fill out the survey.²³ Medical oncology fellows often used the completed screener to inform their review of systems (by reviewing the Coleman screener Physical and Other Concerns section) and connect with the supportive care staff present in clinic for patient’s identifying severe needs (ie, mental health distress or complex psychosocial needs). Veterans’ rates of distress needs and successfuloutcomes of integration with mental health and social work services have been reported elsewhere.²³

The mean (SD) age for veterans in this cohort was 72 (9.5) years. Participants were primarily African American veterans (70%), with mostly advanced disease (Table 1). Participants endorsed elevated distress needs compared with other patient populations screened in Chicago through the CSOC for depressed mood, pain, housing, transportation, and physical, nutrition, and treatment concerns.²³ Elevated presence of needs was especially prominent for food, housing and insurance/medical needs; physical concerns; nutrition, and treatment- or care-related concerns. Veterans in this cohort reported extensive financial and housing concerns: 10.4% reported food and housing concerns, 18.6% reported transportation concerns, and 9.0% reported issues paying for medical care or medications (Table 2).²⁰ Anecdotally, many experienced job loss or strain with their cancer diagnosis or were living at the poverty level before their diagnosis.

Discussion

This project created a successful program to screen veterans for psychosocial distress and triage them to appropriate services. During the project, patients in VA-outpatient oncology clinics reported significant cancer-related distress due to baseline psychosocial needs, changes in emotional and physical functioning, logistical and financial challenges of receiving cancer care, and lack of instrumental support.²³

Staff education supported successful buy-in, development and implementation of supportive oncology programs. We used a combination of in-service trainings, online trainings, and handouts to provide evidence for distress screening.²⁴ Highlighting the evidence-base that demonstrates how cancer-related distress screening improves cancer and quality of life outcomes helped to address physician reluctance to accept the additional requirements needed to address veterans’ psychosocial needs and care concerns. To increase buy-in and collaboration among team members and foster heightened understanding between providers and patients, we recommend creating accessible education for all staff levels.

One specific area of education we focused on was primary palliative care, which includes the core competencies of communication and symptom management recommended for generalists and specialists of all disciplines.²⁵ Program staff supported oncology fellows in developing their primary palliative care skills by being available to discuss basic symptom management and communication issues. VA cancer care programs could benefit from ongoing palliative care education of oncology staff to facilitate primary palliative care as well as earlier integration of secondary palliative care when needed.²⁶ Secondary palliative care or care provided directly by the palliative care team assists with complex symptom management or communication issues. For these needs, oncology fellows were encouraged to refer to either the palliative care staff available in one of the half-day clinics or to the outpatient palliative care clinic. As a unique strength, the VA allows veterans to receive concurrent cancer-directed therapy and hospice care, which enables earlier referrals to hospice care and higher quality end-of-life care and emphasizes the need for primary palliative care in oncology.^27,28

Integrating supportive oncology team members, such as licensed clinical social worker and psychology interns, was successful. This was modeled on the VA PACT, which focuses on prevention, health promotion, coordination and chronic disease management.²⁹ Social determinants of health have a major impact on health outcomes especially in veteran-specific and African American populations, making screening for distress critical.^30-32 The VA Office of Health Equity actively addresses health inequities by supporting initiation of screening programs for social determinants of health, including education, employment, exposure to abuse and violence, food insecurity, housing instability, legal needs, social isolation, transportation needs, and utility needs. This is especially needed for African-American individuals who are not only more likely to experience cancer, but also more likely to be negatively impacted by the consequences of cancer diagnosis/treatment, such as complications related to one’s job security, access to care, adverse effects, and other highly distressing needs.^33,34

Our program found that veterans with cancer often had concerns associated with food and housing insecurity, transportation and paying for medication or medical care, and screening allowed health care providers to detect and address these social determinants of health through referrals to VA and community-specific programs. Social workers integrated into VA cancer clinics are uniquely equipped to coordinate distress screening and support continuity of care by virtue of their training, connections to preexisting VA supportive services, and knowledge of community resources. This model could be used in other VA specialty clinics serving veterans with chronic illness and those with high levels of physical frailty.³⁵

Our ability to roll out distress screening was scaffolded by technological integration into existing VA systems (eg, screening results in CPRS and electronic referrals). Screening procedures could have been even more efficient with improved technology (Table 3). For example, technological limitations made it challenging to easily identify patients due for screening, requiring a cumbersome process of tracking, collecting and entering patients’ paper forms. Health care providers seeking to develop a distress screening program should consider investing in technology that allows for identification of patients requiring screening at a predetermined interval, completion of screening via tablet or personal device, integration of screening responses into the electronic health record, and automatic generation of notifications to the treating physician and appropriate support services.

Conclusions

Veterans with cancer benefited from enhanced screening and psychosocial service availability, similar to a PCMHI model. Robust screening programs helped advocate for veterans dealing with the effects of poverty through identification of need and referral to existing VA programs and services quickly and efficiently. Providing comprehensive care within ambulatory cancer clinics can address cancer-related distress and any potential barriers to care in real time. VA hospitals typically offer an array of supportive services to address veterans’ psychosocial needs, yet these services tend to be siloed. Integrated referrals can help to resolve such access barriers. Since many veterans with burdensome cancers are not able to see their VA primary care physician regularly, offering comprehensive care within medical oncology ensures complete and integrated care that includes psychosocial screening.

We believe that this program is an example of a mechanism for oncologists and palliative care clinicians to integrate their care in a way that identifies needs and triages services for vulnerable veterans. As colleagues have written, “it is fundamental to our commitment to veterans that we ensure comparable, high quality care regardless of a veteran’s gender, race, or where they live.^”34 Health care providers may underestimate the extensive change a cancer diagnosis can have on a patient’s quality of life. Cancer diagnosis and treatment have a large impact on all individuals, but this impact may be greater for individuals in poverty due to inability to work from home, inflexible work hours, and limited support structures. By creating screening programs with psychosocial integration in oncology clinics such as we have described, we hope to improve access to more equitable care for vulnerable veterans.

Veterans living with cancer need comprehensive assessment that includes supportive psychosocial care. The National Comprehensive Cancer Network (NCCN) and American College of Surgeons Commission on Cancer require accredited cancer centers to evaluate psychosocial distress and provide appropriate triage and treatment for all patients.^1-3 Implementing psychosocial distress screening can be difficult because of procedural barriers and time constraints, clinic and supportive care resources, and lack of knowledge about how to access supportive services.

Distress screening protocols must be designed to address the specific needs of each population. To improve screening for cancer-related distress, deliver effective supportive services, and gain agreement on distress screening standards of care, the Coleman Foundation supported development of the Coleman Supportive Oncology Collaborative (CSOC), a project of 135 interdisciplinary health care professionals from 25 Chicago-area cancer care institutions.⁴

The Jesse Brown US Department of Veterans Affairs (VA) Medical Center (JBVAMC) was chosen to assess cancer-related concerns among veterans using the CSOC screening tool and to improve access to supportive oncology. JBVAMC provides care to approximately 49,000 veterans in Chicago, Illinois, and northwestern Indiana. The JBVAMC patient population includes a large number of veterans with dual diagnoses (co-occurring substance use and mental health disorders) and veterans experiencing homelessness.

Delivering integrated screening and oncologic care that is culture and age appropriate is particularly important for veterans given their unique risk factors. The veteran population is considered vulnerable in terms of health status, psychological functioning, and social context. Veterans who use the VA health system as a principal source of care have poorer health, greater comorbid medical conditions, and an increased risk of mortality and suicide compared with the general population.^5,6 Poorer health status in veterans also may relate to old age, low income, poor education, psychological health, and minority race.^7-9

Past studies point to unique risk factors for cancer and poor cancer adjustment among veterans, which may complicate cancer treatment and end-of-life/survivorship care. Veteran-specific risk factors include military-related exposures, particularly Agent Orange and morbidity/mortality secondary to comorbid medical and psychiatric conditions (eg, chronic obstructive pulmonary disease, diabetes mellitus, and posttraumatic stress disorder [PTSD]).^10-12 Moreover, the geriatric veteran population continues to grow,with increasing rates of cancer that require unique considerations for effective cancer care.^13,14 Despite this, there are minimal data to inform best practices and supportive care approaches for veterans with cancer. Lack of guidelines specific to veterans and other populations with increased psychosocial challenges may impede successful cancer care, making distress screening procedures particularly important. This is especially the case for the JBVAMC, which serves primarily African American urban-dwelling veterans who experience high rates of cancer disparities, including increased rates of mortality and increased levels of psychosocial distress.^15,16

The goals of this program were to (1) examine levels of psychological, physical, financial, and treatment-related distress in a large sample of urban-dwelling veterans; (2) create a streamlined, sustainable process to screen a large number of veterans receiving cancer care in the outpatient setting and connect them with available supportive services; and (3) educate oncology physicians, nurses, and other staff about cancer-related distress and concerns using in-service trainings and interpersonal interactions to improve patient care. Our program was based on a Primary Care Mental Health Integration (PCMHI) model that embeds health psychologists in general medical clinics to better reach veterans dealing with mental health issues. We tailored for palliative care involvement.

Studies of this model have shown that mental health integration improves access to mental health services and mental health treatment outcomes and has higher patient and provider satisfaction.¹⁷ We were also influenced by the construct of the patient aligned care team (PACT) social worker who, in this veteran-centered approach, often functions as a care coordinator. Social work responsibilities include assessment of patients’ stressors including adjusting to the medical conditions, identifying untreated or undertreated mental health or substance abuse issues, economic instability, legal problems, and inadequate housing and transportation, which can often be exacerbated during cancer treatment.¹⁸

Methods

This institutional review board at JBVAMC reviewed and exempted this quality improvement program using the SQUIRE framework.¹⁹ It was led by a group of palliative care clinicians, psychologists, and administrators who have worked with the oncology service for many years, primarily in the care of hospitalized patients. Common palliative care services include providing care for patients with serious illness diagnosis through the illness trajectory.

Setting

At the start of this program, we assessed the current clinic workflow to determine how to best screen and assist veterans experiencing distress. We met with team members individually to identify the best method of clinic integration, including attending medical oncologists, medical oncology fellows, psychology interns, oncology nursing staff, the oncology nurse coordinator, and clinic clerks.

The JBVAMC provides cancer care through 4 half-day medical hematology-oncology clinics that serve about 50 patients per half-day clinic. The clinics are staffed by hematology-oncology fellows supervised by hematology-oncology attending physicians, who are affiliated with 2 academic medical centers. These clinics are staffed by 3 registered nurses (RNs) and a licensed practical nurse (LPN) and are adjacent to a chemotherapy infusion clinic with unique nursing staff. The JBVAMC also provides a variety of supportive care services, including extensive mental health and substance use treatment, physical and occupational therapy, acupuncture, nutrition, social work, and housing services. Following our assessment, it was evident that there were a low number of referrals from oncology clinics to supportive care services, mostly due to lack of knowledge of resources and unclear referral procedures.

Based on clinical volume, we determined that our screening program could best be implemented through a stepped approach beginning in one clinic and expanding thereafter. We began by having a palliative care physician and health psychology intern embedded in 1 weekly half-day clinic and a health psychology intern embedded in a second weekly half-day clinic. Our program included 2 health psychology interns (for each academic year of the program) who were supervised by a JBVA health psychologist.

About 15 months after successful integration within the first 2 half-day clinics, we expanded the screening program to staff an additional half-day medical oncology clinic with a palliative care APRN. This allowed us to expand the screening tool distribution and collection to 3 of 4 of the weekly half-day oncology clinics as well as to meet individually with veterans experiencing high levels of distress. Veterans were flagged as having high distress levels by either the results of their completed screening tool or by referral from a medical oncology physician. We initially established screening in clinics that were sufficiently staffed to ensure that screens were appropriately distributed and reviewed. Patients seen in nonparticipating clinics were referred to outpatient social work, mental health and/or outpatient palliative care according to oncology fellows’ clinical assessments of the patient. All oncology fellows received education about distress screening and methods for referring to supportive care. Our clinic screening program extended from February 2017 through January 2020.

Screening

Program staff screened patients with new cancer diagnoses, then identified patients for follow-up screens. This tracking allowed staff to identify patients with oncology appointments that day and cross-reference patients needing a follow-up screen.

Following feedback from the clinic nurses, we determined that nurses would provide the distress tool to patients in paper form after they completed their assessment of vitals and waited to be seen by their medical oncologist. The patient would then deliver their completed form to the nurse who would combine it with the patient’s clinic notes for the oncologist to review. Veterans who reported elevated 4-question Patient Health Questionnaire (PHQ-4) scores ≥ 6 were seen immediately by program staff. Veterans were referred to social work or psychiatry services for a same day visit if they endorsed a high level of psychological distress during clinical examination. They were referred for other supportive care services if they were determined to have practical, family, or nutrition unmet distress needs by either the program staff or oncology fellows. Program staff provided guidance to medical oncology fellows for needed referrals including social work, mental health, and palliative care follow ups (eAppendix A available at doi:10.12788/fp.0158).

Veterans referred for supportive care services were contacted by the relevant clinical administrator by phone to schedule an intake; for social work referrals, patients were either seen in a walk-in office located in a colocated building or contacted by a social worker by phone.

Our screening tool was the Coleman Foundation Supportive Oncology Collaborative Screening Tool, compiled from validated instruments. Patients completed this screening tool, which includes the PHQ-4, NCCN problem list concerns, adapted Mini Nutrition Assessment and PROMIS Pain and Fatigue measure (eAppendix B available at doi:10.12788/fp.0158).^20-22

We also worked with the VA Computerized Patient Record System (CPRS) to create an electronic template for the screening tool. Completed screening tools were manually entered by the physician, psychologists, or APRN into the CPRS chart.

We analyzed the different supportive care services available at the JBVAMC and noticed that many supportive services were available, yet these services were often separated. Therefore, we created a consult flowsheet to assist oncologists in placing referrals. These supportive care services include mental health services, a cancer support group, home health care, social services, nutrition, physical medicine and rehabilitation, and other specialty services.

Patient Education

The psychology and nursing staff created a patient information bulletin board where patients could access information about supportive services available at JBVAMC. This board required frequent replenishment of handouts because patients consulted the board regularly. Handouts and folders about common clinical issues also were placed in the clinic treatment rooms. We partnered with 2 local cancer support centers, Gilda’s Club and the Cancer Support Center, to make referrals for family members and/or caregivers who would benefit from additional support.

We provided in-service trainings for oncology fellows, including trainings on PTSD and substance abuse and their relationship to cancer care at the VA. These topics were chosen based on the feedback program staff received about perceived knowledge gaps from the oncology fellows. This program allowed for multiple informal conversations between that program staff and oncology fellows about overall patient care. We held trainings with the cancer coordinator and clinical nursing staff on strategies to identify and follow-up on cancer-related distress, and with oncology fellows to review the importance of distress screening and to instruct fellows on instructions for the consult flowsheet.

Funding

This program was funded by the Chicago-based Coleman Foundation as part of the CSOC. Funding was used to support a portion of time for administrative and clinical work of program staff, as well as data collection and analysis.

Results

We established 3 half-day integrated clinics where patients were screened and referred for services based on supportive oncology needs. In addition to our primary activities to screen and refer veterans, we held multiple educational sessions for colleagues, developed a workflow template, and integrated patient education materials into the clinics.

Screening

Veterans completed 1010 distress screens in 3 of 4 half-day oncology clinics over the 2.5-year project period. Veterans were screened at initial diagnosis and every 3 months, or during changes in their clinical care or disease status. As a result, 579 patients completed screening, with some patients doing several follow-up screens during their care. Integration of palliative care providers and health psychologists was instrumental in facilitating screening in these busy general medical oncology clinics. Most veterans were receptive to completing surveys with few refusing to fill out the survey.²³ Medical oncology fellows often used the completed screener to inform their review of systems (by reviewing the Coleman screener Physical and Other Concerns section) and connect with the supportive care staff present in clinic for patient’s identifying severe needs (ie, mental health distress or complex psychosocial needs). Veterans’ rates of distress needs and successfuloutcomes of integration with mental health and social work services have been reported elsewhere.²³

The mean (SD) age for veterans in this cohort was 72 (9.5) years. Participants were primarily African American veterans (70%), with mostly advanced disease (Table 1). Participants endorsed elevated distress needs compared with other patient populations screened in Chicago through the CSOC for depressed mood, pain, housing, transportation, and physical, nutrition, and treatment concerns.²³ Elevated presence of needs was especially prominent for food, housing and insurance/medical needs; physical concerns; nutrition, and treatment- or care-related concerns. Veterans in this cohort reported extensive financial and housing concerns: 10.4% reported food and housing concerns, 18.6% reported transportation concerns, and 9.0% reported issues paying for medical care or medications (Table 2).²⁰ Anecdotally, many experienced job loss or strain with their cancer diagnosis or were living at the poverty level before their diagnosis.

Discussion

This project created a successful program to screen veterans for psychosocial distress and triage them to appropriate services. During the project, patients in VA-outpatient oncology clinics reported significant cancer-related distress due to baseline psychosocial needs, changes in emotional and physical functioning, logistical and financial challenges of receiving cancer care, and lack of instrumental support.²³

Staff education supported successful buy-in, development and implementation of supportive oncology programs. We used a combination of in-service trainings, online trainings, and handouts to provide evidence for distress screening.²⁴ Highlighting the evidence-base that demonstrates how cancer-related distress screening improves cancer and quality of life outcomes helped to address physician reluctance to accept the additional requirements needed to address veterans’ psychosocial needs and care concerns. To increase buy-in and collaboration among team members and foster heightened understanding between providers and patients, we recommend creating accessible education for all staff levels.

One specific area of education we focused on was primary palliative care, which includes the core competencies of communication and symptom management recommended for generalists and specialists of all disciplines.²⁵ Program staff supported oncology fellows in developing their primary palliative care skills by being available to discuss basic symptom management and communication issues. VA cancer care programs could benefit from ongoing palliative care education of oncology staff to facilitate primary palliative care as well as earlier integration of secondary palliative care when needed.²⁶ Secondary palliative care or care provided directly by the palliative care team assists with complex symptom management or communication issues. For these needs, oncology fellows were encouraged to refer to either the palliative care staff available in one of the half-day clinics or to the outpatient palliative care clinic. As a unique strength, the VA allows veterans to receive concurrent cancer-directed therapy and hospice care, which enables earlier referrals to hospice care and higher quality end-of-life care and emphasizes the need for primary palliative care in oncology.^27,28

Integrating supportive oncology team members, such as licensed clinical social worker and psychology interns, was successful. This was modeled on the VA PACT, which focuses on prevention, health promotion, coordination and chronic disease management.²⁹ Social determinants of health have a major impact on health outcomes especially in veteran-specific and African American populations, making screening for distress critical.^30-32 The VA Office of Health Equity actively addresses health inequities by supporting initiation of screening programs for social determinants of health, including education, employment, exposure to abuse and violence, food insecurity, housing instability, legal needs, social isolation, transportation needs, and utility needs. This is especially needed for African-American individuals who are not only more likely to experience cancer, but also more likely to be negatively impacted by the consequences of cancer diagnosis/treatment, such as complications related to one’s job security, access to care, adverse effects, and other highly distressing needs.^33,34

Our program found that veterans with cancer often had concerns associated with food and housing insecurity, transportation and paying for medication or medical care, and screening allowed health care providers to detect and address these social determinants of health through referrals to VA and community-specific programs. Social workers integrated into VA cancer clinics are uniquely equipped to coordinate distress screening and support continuity of care by virtue of their training, connections to preexisting VA supportive services, and knowledge of community resources. This model could be used in other VA specialty clinics serving veterans with chronic illness and those with high levels of physical frailty.³⁵

Our ability to roll out distress screening was scaffolded by technological integration into existing VA systems (eg, screening results in CPRS and electronic referrals). Screening procedures could have been even more efficient with improved technology (Table 3). For example, technological limitations made it challenging to easily identify patients due for screening, requiring a cumbersome process of tracking, collecting and entering patients’ paper forms. Health care providers seeking to develop a distress screening program should consider investing in technology that allows for identification of patients requiring screening at a predetermined interval, completion of screening via tablet or personal device, integration of screening responses into the electronic health record, and automatic generation of notifications to the treating physician and appropriate support services.

Conclusions

Veterans with cancer benefited from enhanced screening and psychosocial service availability, similar to a PCMHI model. Robust screening programs helped advocate for veterans dealing with the effects of poverty through identification of need and referral to existing VA programs and services quickly and efficiently. Providing comprehensive care within ambulatory cancer clinics can address cancer-related distress and any potential barriers to care in real time. VA hospitals typically offer an array of supportive services to address veterans’ psychosocial needs, yet these services tend to be siloed. Integrated referrals can help to resolve such access barriers. Since many veterans with burdensome cancers are not able to see their VA primary care physician regularly, offering comprehensive care within medical oncology ensures complete and integrated care that includes psychosocial screening.

We believe that this program is an example of a mechanism for oncologists and palliative care clinicians to integrate their care in a way that identifies needs and triages services for vulnerable veterans. As colleagues have written, “it is fundamental to our commitment to veterans that we ensure comparable, high quality care regardless of a veteran’s gender, race, or where they live.^”34 Health care providers may underestimate the extensive change a cancer diagnosis can have on a patient’s quality of life. Cancer diagnosis and treatment have a large impact on all individuals, but this impact may be greater for individuals in poverty due to inability to work from home, inflexible work hours, and limited support structures. By creating screening programs with psychosocial integration in oncology clinics such as we have described, we hope to improve access to more equitable care for vulnerable veterans.

Terminally ill patients with advanced cancer may not be receiving adequate pain management, according to new findings.

There has been a sharp decrease in access to opioids during the past decade, and many patients are going to emergency departments for pain treatment.

Overall, during the study period (2007-2017), there was a 34% reduction in the number of opioid prescriptions filled per patient and a 38% reduction in the total dose of opioids filled near the end of life.

There was a dramatic drop in the use of long-acting opioids, which can provide patients with more consistent pain relief and are important for managing severe cancer pain. The investigators’ results show that during the study period, the number of long-acting opioid prescriptions filled per patient fell by 50%.

“We do believe that the decline in cancer patients’ access to opioids near the end of life is likely attributable to the efforts to curtail opioid misuse,” commented lead author Andrea Enzinger, MD, a medical oncologist at Dana-Farber Cancer Institute, Boston.

The study was published online July 22 in the Journal of Clinical Oncology.

“The study provides fascinating data that support our clinical observations,” said Marcin Chwistek, MD, FAAHPM, director of the supportive oncology and palliative care program at Fox Chase Cancer Center, Philadelphia, who was asked for comment. “Primarily, we have noticed a heightened reluctance on the parts of patients with cancer, including those with advanced cancer, to take opioids in general.”
 

Many factors involved

The crisis of opioid misuse and abuse led to the implementation of regulations to curb inappropriate prescribing. But these restrictions on opioid prescribing may have unintended consequences for patients with advanced, incurable malignancies who are experiencing pain.

“Many but not all opioid regulations specifically exclude cancer patients,” said Dr. Enzinger. “However, the cumulative effect of these regulations may have had a chilling effect on providers’ comfort or willingness to prescribe opioids, even for cancer pain.”

She said in an interview that the prescribing of opioids has become much more difficult. Prescribers are often required to sign an opioid agreement with patients prior to providing them with opioids. Health care professionals may need to use a two-factor authentication to prescribe, and prescribers in 49 of 50 U.S. states are required to check electronic prescription drug monitoring programs prior to providing the prescription.

“After the medications are prescribed, insurance companies require prior-authorization paperwork before filling the medications, particularly for long-acting opioids or high-dose opioids,” Dr. Enzinger said. “These barriers pile up and make the whole process onerous and time consuming.”

Patient factors may also have contributed to the decline in use.

“Cancer patients are often very hesitant to use opioids to treat their pain, as they worry about becoming addicted or being labeled a ‘pill seeker,’” she explained. “Also, the added regulations, such as requirements for prior authorization paperwork, signing opioid agreements, and so on, may add to the stigma of opioid therapy and send a message to patients that these medications are inherently dangerous.”

Dr. Enzinger added that there are legitimate reasons why patients may not want to use opioids and that these should be respected. “But addiction risk should really not weigh into the decisions about pain management for patients who are dying from cancer,” she said.
 

Decline in opioid dose and prescriptions

Dr. Enzinger and colleagues used administrative data from the Centers for Medicare & Medicaid Services to identify 270,632 Medicare fee-for-service patients who had cancers that were associated with poor prognoses and who died from 2007 to 2017. During this period, the opioid crisis was first recognized. There followed legislative reforms and subsequent declines in population-based opioid prescribing.

Among the patients in the study, the most common cancers were lung, colorectal, pancreatic, prostate, and breast cancers; 166,962 patients (61.7%) were enrolled in hospice before death. This percentage increased from 57.1% in 2007 to 66.2% in 2017 (P for trend < .001).

From 2007 to 2017, the proportion of patients filling greater than or equal to 1 opioid prescriptions declined from 42.0% to 35.5%. The proportion declined faster from 2012-2017 than from 2007-2011.

The proportion of patients who filled prescriptions for long-acting opioids dropped from 18.1% to 11.5%. Here again, the decline was faster from 2012-2017 than from 2007-2011. Prescriptions for strong short-acting opioids declined from 31.7% to 28.5%. Prescribing was initially stable from 2007-2011 and began to decline in 2012. Conversely, prescriptions for weak short-acting opioids dropped from 8.4% to 6.5% from 2007-2011 and then stabilized after 2012.

The mean daily dose fell 24.5%, from 85.6 morphine milligram equivalents per day (MMED) to 64.6 MMED. Overall, the total amount of opioids prescribed per decedent fell 38.0%, from 1,075 MMEs per person to 666 MMEs.

At the same time, the proportion of patients who visited EDs increased 50.8%, from 13.2% to 19.9%.
 

Experts weigh in

Approached for an independent comment, Amit Barochia, MD, a hematologist/oncologist with Health First Medical Group, Titusville, Fla., commented that the decline could be due, in part, to greater vigilance and awareness by physicians in light of more stringent requirements and of federal and state regulations. “Some physicians are avoiding prescribing opioids due to more regulations and requirements as well, which is routing patients to the ER for pain relief,” he said.

Dr. Barochia agreed that some of the decline could be due to patient factors. “I do think that some of the patients are hesitant about considering opioid use for better pain relief, in part due to fear of addiction as well as complications arising from their use,” he said. “This is likely resulting from more awareness in the community about their adverse effects.

“That awareness could come from aggressive media coverage as well as social media,” he continued. “It is also true that there is a difficulty in getting authorization for certain opioid products, which is delaying the onset of a proper pain regimen that would help to provide adequate pain relief early on.”

For patients with advanced cancer, earlier referral to palliative care would be beneficial, Dr. Barochia pointed out, because this would allow for a more in-depth discussion about pain in addition to addressing the physical and mental symptoms associated with cancer.

Fox Chase Cancer Center’s Dr. Chwistek noted that patients and their caregivers are often apprehensive about the potential adverse effects of opioids, because they often hear about community-based opioid overdoses and are fearful of taking the medications. “Additionally, it has become increasingly challenging to fill opioid prescriptions at local pharmacies, due to quantity limitations, ubiquitous need for prior authorizations, and stigma,” he said.

The fear of addiction is often brought up by the patients during clinic visits, and insurers and pharmacies have imposed many limits on opioid prescribing. “Most of these can be overcome with prior authorizations, but not always, and prior authorizations are time consuming, confusing, and very frustrating for patients,” he said in an interview.

These findings suggest that not enough patients are getting optimal palliative care. “One of the primary tenets of palliative care is optimal symptom control, including pain,” said Dr. Chwistek. “Palliative care teams have the experience and insight needed to help patients overcome the barriers to appropriate pain control. Education, support, and advocacy are critical to ensure that patients’ pain is appropriately addressed.”

The study was funded by a grant from the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.

A version of this article first appeared on Medscape.com.

Terminally ill patients with advanced cancer may not be receiving adequate pain management, according to new findings.

There has been a sharp decrease in access to opioids during the past decade, and many patients are going to emergency departments for pain treatment.

Overall, during the study period (2007-2017), there was a 34% reduction in the number of opioid prescriptions filled per patient and a 38% reduction in the total dose of opioids filled near the end of life.

There was a dramatic drop in the use of long-acting opioids, which can provide patients with more consistent pain relief and are important for managing severe cancer pain. The investigators’ results show that during the study period, the number of long-acting opioid prescriptions filled per patient fell by 50%.

“We do believe that the decline in cancer patients’ access to opioids near the end of life is likely attributable to the efforts to curtail opioid misuse,” commented lead author Andrea Enzinger, MD, a medical oncologist at Dana-Farber Cancer Institute, Boston.

The study was published online July 22 in the Journal of Clinical Oncology.

“The study provides fascinating data that support our clinical observations,” said Marcin Chwistek, MD, FAAHPM, director of the supportive oncology and palliative care program at Fox Chase Cancer Center, Philadelphia, who was asked for comment. “Primarily, we have noticed a heightened reluctance on the parts of patients with cancer, including those with advanced cancer, to take opioids in general.”
 

Many factors involved

The crisis of opioid misuse and abuse led to the implementation of regulations to curb inappropriate prescribing. But these restrictions on opioid prescribing may have unintended consequences for patients with advanced, incurable malignancies who are experiencing pain.

“Many but not all opioid regulations specifically exclude cancer patients,” said Dr. Enzinger. “However, the cumulative effect of these regulations may have had a chilling effect on providers’ comfort or willingness to prescribe opioids, even for cancer pain.”

She said in an interview that the prescribing of opioids has become much more difficult. Prescribers are often required to sign an opioid agreement with patients prior to providing them with opioids. Health care professionals may need to use a two-factor authentication to prescribe, and prescribers in 49 of 50 U.S. states are required to check electronic prescription drug monitoring programs prior to providing the prescription.

“After the medications are prescribed, insurance companies require prior-authorization paperwork before filling the medications, particularly for long-acting opioids or high-dose opioids,” Dr. Enzinger said. “These barriers pile up and make the whole process onerous and time consuming.”

Patient factors may also have contributed to the decline in use.

“Cancer patients are often very hesitant to use opioids to treat their pain, as they worry about becoming addicted or being labeled a ‘pill seeker,’” she explained. “Also, the added regulations, such as requirements for prior authorization paperwork, signing opioid agreements, and so on, may add to the stigma of opioid therapy and send a message to patients that these medications are inherently dangerous.”

Dr. Enzinger added that there are legitimate reasons why patients may not want to use opioids and that these should be respected. “But addiction risk should really not weigh into the decisions about pain management for patients who are dying from cancer,” she said.
 

Decline in opioid dose and prescriptions

Dr. Enzinger and colleagues used administrative data from the Centers for Medicare & Medicaid Services to identify 270,632 Medicare fee-for-service patients who had cancers that were associated with poor prognoses and who died from 2007 to 2017. During this period, the opioid crisis was first recognized. There followed legislative reforms and subsequent declines in population-based opioid prescribing.

Among the patients in the study, the most common cancers were lung, colorectal, pancreatic, prostate, and breast cancers; 166,962 patients (61.7%) were enrolled in hospice before death. This percentage increased from 57.1% in 2007 to 66.2% in 2017 (P for trend < .001).

From 2007 to 2017, the proportion of patients filling greater than or equal to 1 opioid prescriptions declined from 42.0% to 35.5%. The proportion declined faster from 2012-2017 than from 2007-2011.

The proportion of patients who filled prescriptions for long-acting opioids dropped from 18.1% to 11.5%. Here again, the decline was faster from 2012-2017 than from 2007-2011. Prescriptions for strong short-acting opioids declined from 31.7% to 28.5%. Prescribing was initially stable from 2007-2011 and began to decline in 2012. Conversely, prescriptions for weak short-acting opioids dropped from 8.4% to 6.5% from 2007-2011 and then stabilized after 2012.

The mean daily dose fell 24.5%, from 85.6 morphine milligram equivalents per day (MMED) to 64.6 MMED. Overall, the total amount of opioids prescribed per decedent fell 38.0%, from 1,075 MMEs per person to 666 MMEs.

At the same time, the proportion of patients who visited EDs increased 50.8%, from 13.2% to 19.9%.
 

Experts weigh in

Approached for an independent comment, Amit Barochia, MD, a hematologist/oncologist with Health First Medical Group, Titusville, Fla., commented that the decline could be due, in part, to greater vigilance and awareness by physicians in light of more stringent requirements and of federal and state regulations. “Some physicians are avoiding prescribing opioids due to more regulations and requirements as well, which is routing patients to the ER for pain relief,” he said.

Dr. Barochia agreed that some of the decline could be due to patient factors. “I do think that some of the patients are hesitant about considering opioid use for better pain relief, in part due to fear of addiction as well as complications arising from their use,” he said. “This is likely resulting from more awareness in the community about their adverse effects.

“That awareness could come from aggressive media coverage as well as social media,” he continued. “It is also true that there is a difficulty in getting authorization for certain opioid products, which is delaying the onset of a proper pain regimen that would help to provide adequate pain relief early on.”

For patients with advanced cancer, earlier referral to palliative care would be beneficial, Dr. Barochia pointed out, because this would allow for a more in-depth discussion about pain in addition to addressing the physical and mental symptoms associated with cancer.

Fox Chase Cancer Center’s Dr. Chwistek noted that patients and their caregivers are often apprehensive about the potential adverse effects of opioids, because they often hear about community-based opioid overdoses and are fearful of taking the medications. “Additionally, it has become increasingly challenging to fill opioid prescriptions at local pharmacies, due to quantity limitations, ubiquitous need for prior authorizations, and stigma,” he said.

The fear of addiction is often brought up by the patients during clinic visits, and insurers and pharmacies have imposed many limits on opioid prescribing. “Most of these can be overcome with prior authorizations, but not always, and prior authorizations are time consuming, confusing, and very frustrating for patients,” he said in an interview.

These findings suggest that not enough patients are getting optimal palliative care. “One of the primary tenets of palliative care is optimal symptom control, including pain,” said Dr. Chwistek. “Palliative care teams have the experience and insight needed to help patients overcome the barriers to appropriate pain control. Education, support, and advocacy are critical to ensure that patients’ pain is appropriately addressed.”

The study was funded by a grant from the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.

A version of this article first appeared on Medscape.com.

Terminally ill patients with advanced cancer may not be receiving adequate pain management, according to new findings.

There has been a sharp decrease in access to opioids during the past decade, and many patients are going to emergency departments for pain treatment.

Overall, during the study period (2007-2017), there was a 34% reduction in the number of opioid prescriptions filled per patient and a 38% reduction in the total dose of opioids filled near the end of life.

There was a dramatic drop in the use of long-acting opioids, which can provide patients with more consistent pain relief and are important for managing severe cancer pain. The investigators’ results show that during the study period, the number of long-acting opioid prescriptions filled per patient fell by 50%.

“We do believe that the decline in cancer patients’ access to opioids near the end of life is likely attributable to the efforts to curtail opioid misuse,” commented lead author Andrea Enzinger, MD, a medical oncologist at Dana-Farber Cancer Institute, Boston.

The study was published online July 22 in the Journal of Clinical Oncology.

“The study provides fascinating data that support our clinical observations,” said Marcin Chwistek, MD, FAAHPM, director of the supportive oncology and palliative care program at Fox Chase Cancer Center, Philadelphia, who was asked for comment. “Primarily, we have noticed a heightened reluctance on the parts of patients with cancer, including those with advanced cancer, to take opioids in general.”
 

Many factors involved

The crisis of opioid misuse and abuse led to the implementation of regulations to curb inappropriate prescribing. But these restrictions on opioid prescribing may have unintended consequences for patients with advanced, incurable malignancies who are experiencing pain.

“Many but not all opioid regulations specifically exclude cancer patients,” said Dr. Enzinger. “However, the cumulative effect of these regulations may have had a chilling effect on providers’ comfort or willingness to prescribe opioids, even for cancer pain.”

She said in an interview that the prescribing of opioids has become much more difficult. Prescribers are often required to sign an opioid agreement with patients prior to providing them with opioids. Health care professionals may need to use a two-factor authentication to prescribe, and prescribers in 49 of 50 U.S. states are required to check electronic prescription drug monitoring programs prior to providing the prescription.

“After the medications are prescribed, insurance companies require prior-authorization paperwork before filling the medications, particularly for long-acting opioids or high-dose opioids,” Dr. Enzinger said. “These barriers pile up and make the whole process onerous and time consuming.”

Patient factors may also have contributed to the decline in use.

“Cancer patients are often very hesitant to use opioids to treat their pain, as they worry about becoming addicted or being labeled a ‘pill seeker,’” she explained. “Also, the added regulations, such as requirements for prior authorization paperwork, signing opioid agreements, and so on, may add to the stigma of opioid therapy and send a message to patients that these medications are inherently dangerous.”

Dr. Enzinger added that there are legitimate reasons why patients may not want to use opioids and that these should be respected. “But addiction risk should really not weigh into the decisions about pain management for patients who are dying from cancer,” she said.
 

Decline in opioid dose and prescriptions

Dr. Enzinger and colleagues used administrative data from the Centers for Medicare & Medicaid Services to identify 270,632 Medicare fee-for-service patients who had cancers that were associated with poor prognoses and who died from 2007 to 2017. During this period, the opioid crisis was first recognized. There followed legislative reforms and subsequent declines in population-based opioid prescribing.

Among the patients in the study, the most common cancers were lung, colorectal, pancreatic, prostate, and breast cancers; 166,962 patients (61.7%) were enrolled in hospice before death. This percentage increased from 57.1% in 2007 to 66.2% in 2017 (P for trend < .001).

From 2007 to 2017, the proportion of patients filling greater than or equal to 1 opioid prescriptions declined from 42.0% to 35.5%. The proportion declined faster from 2012-2017 than from 2007-2011.

The proportion of patients who filled prescriptions for long-acting opioids dropped from 18.1% to 11.5%. Here again, the decline was faster from 2012-2017 than from 2007-2011. Prescriptions for strong short-acting opioids declined from 31.7% to 28.5%. Prescribing was initially stable from 2007-2011 and began to decline in 2012. Conversely, prescriptions for weak short-acting opioids dropped from 8.4% to 6.5% from 2007-2011 and then stabilized after 2012.

The mean daily dose fell 24.5%, from 85.6 morphine milligram equivalents per day (MMED) to 64.6 MMED. Overall, the total amount of opioids prescribed per decedent fell 38.0%, from 1,075 MMEs per person to 666 MMEs.

At the same time, the proportion of patients who visited EDs increased 50.8%, from 13.2% to 19.9%.
 

Experts weigh in

Approached for an independent comment, Amit Barochia, MD, a hematologist/oncologist with Health First Medical Group, Titusville, Fla., commented that the decline could be due, in part, to greater vigilance and awareness by physicians in light of more stringent requirements and of federal and state regulations. “Some physicians are avoiding prescribing opioids due to more regulations and requirements as well, which is routing patients to the ER for pain relief,” he said.

Dr. Barochia agreed that some of the decline could be due to patient factors. “I do think that some of the patients are hesitant about considering opioid use for better pain relief, in part due to fear of addiction as well as complications arising from their use,” he said. “This is likely resulting from more awareness in the community about their adverse effects.

“That awareness could come from aggressive media coverage as well as social media,” he continued. “It is also true that there is a difficulty in getting authorization for certain opioid products, which is delaying the onset of a proper pain regimen that would help to provide adequate pain relief early on.”

For patients with advanced cancer, earlier referral to palliative care would be beneficial, Dr. Barochia pointed out, because this would allow for a more in-depth discussion about pain in addition to addressing the physical and mental symptoms associated with cancer.

Fox Chase Cancer Center’s Dr. Chwistek noted that patients and their caregivers are often apprehensive about the potential adverse effects of opioids, because they often hear about community-based opioid overdoses and are fearful of taking the medications. “Additionally, it has become increasingly challenging to fill opioid prescriptions at local pharmacies, due to quantity limitations, ubiquitous need for prior authorizations, and stigma,” he said.

The fear of addiction is often brought up by the patients during clinic visits, and insurers and pharmacies have imposed many limits on opioid prescribing. “Most of these can be overcome with prior authorizations, but not always, and prior authorizations are time consuming, confusing, and very frustrating for patients,” he said in an interview.

These findings suggest that not enough patients are getting optimal palliative care. “One of the primary tenets of palliative care is optimal symptom control, including pain,” said Dr. Chwistek. “Palliative care teams have the experience and insight needed to help patients overcome the barriers to appropriate pain control. Education, support, and advocacy are critical to ensure that patients’ pain is appropriately addressed.”

The study was funded by a grant from the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.

A version of this article first appeared on Medscape.com.

Background: In order to reduce the mismatch between patients’ desired and actual end-of-life care, the Physician Orders for Life-Sustaining Treatment (POLST) was created. POLST is a portable document delineating medical orders for emergency care treatment at the end of life including whether to attempt resuscitation and general level of medical interventions. For nursing home residents, an association between POLST creation and reduction of unwanted CPR has been substantiated. Outside of this population, the association is unknown.

Study design: Retrospective cohort study.

Setting: Two academic hospitals in Washington.

Synopsis: Patients older than age 18 years who had one of nine chronic health conditions associated with 90% of deaths among Medicare beneficiaries were identified using Washington state death certificates. Additional inclusion criteria included hospital admission in the last 6 months of life and creation of a POLST prior to this admission. This led to identification of 1,818 patients. Patients with full-treatment POLST orders were significantly more likely to be admitted to the ICU as well as receive life-sustaining treatments such as mechanical ventilation, vasoactive infusions, or CPR, compared with patients with limited interventions or comfort-only POLST orders (P < .001 for both). 38% of patients with treatment-limiting POLSTs received aggressive end-of-life care that was discordant with their previously documented wishes.

Bottom line: Completion of POLST was associated with a greater likelihood of receiving end-of-life care that was in line with patients’ previously documented wishes regarding admission to ICU and life-sustaining treatment. Washington was one of the first states to adopt POLST in 2005 and therefore these results may not be broadly applicable.

Citation: Lee RY et al. Association of physician orders for life-sustaining treatment with ICU admission among patients hospitalized hear the end of life. JAMA. 2020 Feb 16;323(10):950-60.

Dr. Dreicer is assistant professor of medicine, section of hospital medicine, at the University of Virginia School of Medicine, Charlottesville.

Background: In order to reduce the mismatch between patients’ desired and actual end-of-life care, the Physician Orders for Life-Sustaining Treatment (POLST) was created. POLST is a portable document delineating medical orders for emergency care treatment at the end of life including whether to attempt resuscitation and general level of medical interventions. For nursing home residents, an association between POLST creation and reduction of unwanted CPR has been substantiated. Outside of this population, the association is unknown.

Study design: Retrospective cohort study.

Setting: Two academic hospitals in Washington.

Synopsis: Patients older than age 18 years who had one of nine chronic health conditions associated with 90% of deaths among Medicare beneficiaries were identified using Washington state death certificates. Additional inclusion criteria included hospital admission in the last 6 months of life and creation of a POLST prior to this admission. This led to identification of 1,818 patients. Patients with full-treatment POLST orders were significantly more likely to be admitted to the ICU as well as receive life-sustaining treatments such as mechanical ventilation, vasoactive infusions, or CPR, compared with patients with limited interventions or comfort-only POLST orders (P < .001 for both). 38% of patients with treatment-limiting POLSTs received aggressive end-of-life care that was discordant with their previously documented wishes.

Bottom line: Completion of POLST was associated with a greater likelihood of receiving end-of-life care that was in line with patients’ previously documented wishes regarding admission to ICU and life-sustaining treatment. Washington was one of the first states to adopt POLST in 2005 and therefore these results may not be broadly applicable.

Citation: Lee RY et al. Association of physician orders for life-sustaining treatment with ICU admission among patients hospitalized hear the end of life. JAMA. 2020 Feb 16;323(10):950-60.

Dr. Dreicer is assistant professor of medicine, section of hospital medicine, at the University of Virginia School of Medicine, Charlottesville.

Background: In order to reduce the mismatch between patients’ desired and actual end-of-life care, the Physician Orders for Life-Sustaining Treatment (POLST) was created. POLST is a portable document delineating medical orders for emergency care treatment at the end of life including whether to attempt resuscitation and general level of medical interventions. For nursing home residents, an association between POLST creation and reduction of unwanted CPR has been substantiated. Outside of this population, the association is unknown.

Study design: Retrospective cohort study.

Setting: Two academic hospitals in Washington.

Synopsis: Patients older than age 18 years who had one of nine chronic health conditions associated with 90% of deaths among Medicare beneficiaries were identified using Washington state death certificates. Additional inclusion criteria included hospital admission in the last 6 months of life and creation of a POLST prior to this admission. This led to identification of 1,818 patients. Patients with full-treatment POLST orders were significantly more likely to be admitted to the ICU as well as receive life-sustaining treatments such as mechanical ventilation, vasoactive infusions, or CPR, compared with patients with limited interventions or comfort-only POLST orders (P < .001 for both). 38% of patients with treatment-limiting POLSTs received aggressive end-of-life care that was discordant with their previously documented wishes.

Bottom line: Completion of POLST was associated with a greater likelihood of receiving end-of-life care that was in line with patients’ previously documented wishes regarding admission to ICU and life-sustaining treatment. Washington was one of the first states to adopt POLST in 2005 and therefore these results may not be broadly applicable.

Citation: Lee RY et al. Association of physician orders for life-sustaining treatment with ICU admission among patients hospitalized hear the end of life. JAMA. 2020 Feb 16;323(10):950-60.

Dr. Dreicer is assistant professor of medicine, section of hospital medicine, at the University of Virginia School of Medicine, Charlottesville.

The opioid prescription rates have significantly decreased for children, teens, and younger adults between 2006 and 2018, according to new research.

“What’s important about this new study is that it documented that these improvements were also occurring for children and young adults specifically,” said Kao-Ping Chua, MD, PhD, primary care physician and assistant professor of pediatrics at the University of Michigan, Ann Arbor, who was not involved in the study. “The reason that’s important is that changes in medical practice for adults aren’t always reflected in pediatrics.”

The study, published in JAMA Pediatrics, found that dispensed opioid prescriptions for this population have decreased by 15% annually since 2013. However, the study also examined specific prescribing variables, such as duration of opioid prescription and high-dosage prescriptions. Researchers found reduced rates of high-dosage and long-duration prescriptions for adolescents and younger adults. However, these types of prescription practices increased in children aged 0-5 years.

“I think [the findings are] promising, suggesting that opiate prescribing practices may be improving,” study author Madeline Renny, MD, pediatric emergency medicine doctor at New York University Langone Health, said in an interview. “But we did find that there were increases in the young children for the practice variables, which we didn’t expect. I think that was kind of one of the findings that we were a bit surprised about and want to explore further.”

Previous studies have linked prescription opioid use in children and teens to an increased risk of future opioid misuse. A 2015 study published in Pediatrics found that using prescribed opioids before the 12th grade is associated with a 33% increase in the risk of future opioid misuse by the age of 23. The study also found that for those with a low predicted risk of future opioid misuse, an opioid prescription increases the risk for misuse after high school threefold.

Furthermore, a 2018 study published in JAMA Network Open found that, between 1999 and 2016, the annual estimated mortality rate for all children and adolescents from prescription and illicit opioid use rose 268.2%.

In the new study, Dr. Renny and colleagues examined data from 2006 to 2018 from IQVIA Longitudinal Prescription Data, which captured 74%-92% of U.S. retail outpatient opioid prescriptions dispensed to people up to the age of 24. Researchers also examined prescribing practice variables, which included opioid dispensing rates, average amount of opioid dispensed per prescription, duration of opioid prescription, high-dosage opioid prescription for individuals, and the rate in which extended-release or long-acting opioids are prescribed.

Researchers found that between 2006 and 2018, the total U.S. annual opioid prescriptions dispensed to patients younger than 25 years was highest in 2007 at 15,689,779 prescriptions, and since 2012 has steadily decreased to 6,705,478 in 2018.

“Our study did show that there were declines, but opioids remain readily dispensed,” Dr. Renny said. “And I think it’s good that rates have gone down, but I think opioids are still commonly dispensed to children and adolescents and young adults and all of our age groups.”

Dr. Chua said that the study was important, but when it came to younger children, it didn’t account for the fact that “the underlying population of patients who were getting opioids changed because it’s not the same group of children.”

“Maybe at the beginning there were more surgical patients who are getting shorter duration, lower dosage opioids,” he added. “Now some of those surgical exceptions kind of went away and who’s left in the population of people who get opioids is a sicker population.”

“Who are the 0 to 5-year-olds who are getting opioids now?” Dr. Chua asked. “Well, some of them are going to be cancer or surgical patients. If you think about it, over time their surgeons may be more judicious and they stop prescribing opioids for some things like circumcision or something like that. So that means that who’s left in the population of children who get opiate prescriptions are the cancer patients. Cancer patients’ opioid dosages are going to be higher because they have chronic pain.”

Dr. Chua said it is important to remember that the number of children who are affected by those high-risk prescriptions are lower because the overall number of opioid prescriptions has gone down. He added that the key piece of missing information is the absolute number of prescriptions that were high risk.

Researchers of the current study suggested that, because of the differences between pediatric and adult pain and indications for opioid prescribing, there should be national guidelines on general opioid prescribing for children and adolescents.

Experts did not disclose relevant financial relationships.

The opioid prescription rates have significantly decreased for children, teens, and younger adults between 2006 and 2018, according to new research.

“What’s important about this new study is that it documented that these improvements were also occurring for children and young adults specifically,” said Kao-Ping Chua, MD, PhD, primary care physician and assistant professor of pediatrics at the University of Michigan, Ann Arbor, who was not involved in the study. “The reason that’s important is that changes in medical practice for adults aren’t always reflected in pediatrics.”

The study, published in JAMA Pediatrics, found that dispensed opioid prescriptions for this population have decreased by 15% annually since 2013. However, the study also examined specific prescribing variables, such as duration of opioid prescription and high-dosage prescriptions. Researchers found reduced rates of high-dosage and long-duration prescriptions for adolescents and younger adults. However, these types of prescription practices increased in children aged 0-5 years.

“I think [the findings are] promising, suggesting that opiate prescribing practices may be improving,” study author Madeline Renny, MD, pediatric emergency medicine doctor at New York University Langone Health, said in an interview. “But we did find that there were increases in the young children for the practice variables, which we didn’t expect. I think that was kind of one of the findings that we were a bit surprised about and want to explore further.”

Previous studies have linked prescription opioid use in children and teens to an increased risk of future opioid misuse. A 2015 study published in Pediatrics found that using prescribed opioids before the 12th grade is associated with a 33% increase in the risk of future opioid misuse by the age of 23. The study also found that for those with a low predicted risk of future opioid misuse, an opioid prescription increases the risk for misuse after high school threefold.

Furthermore, a 2018 study published in JAMA Network Open found that, between 1999 and 2016, the annual estimated mortality rate for all children and adolescents from prescription and illicit opioid use rose 268.2%.

In the new study, Dr. Renny and colleagues examined data from 2006 to 2018 from IQVIA Longitudinal Prescription Data, which captured 74%-92% of U.S. retail outpatient opioid prescriptions dispensed to people up to the age of 24. Researchers also examined prescribing practice variables, which included opioid dispensing rates, average amount of opioid dispensed per prescription, duration of opioid prescription, high-dosage opioid prescription for individuals, and the rate in which extended-release or long-acting opioids are prescribed.

Researchers found that between 2006 and 2018, the total U.S. annual opioid prescriptions dispensed to patients younger than 25 years was highest in 2007 at 15,689,779 prescriptions, and since 2012 has steadily decreased to 6,705,478 in 2018.

“Our study did show that there were declines, but opioids remain readily dispensed,” Dr. Renny said. “And I think it’s good that rates have gone down, but I think opioids are still commonly dispensed to children and adolescents and young adults and all of our age groups.”

Dr. Chua said that the study was important, but when it came to younger children, it didn’t account for the fact that “the underlying population of patients who were getting opioids changed because it’s not the same group of children.”

“Maybe at the beginning there were more surgical patients who are getting shorter duration, lower dosage opioids,” he added. “Now some of those surgical exceptions kind of went away and who’s left in the population of people who get opioids is a sicker population.”

“Who are the 0 to 5-year-olds who are getting opioids now?” Dr. Chua asked. “Well, some of them are going to be cancer or surgical patients. If you think about it, over time their surgeons may be more judicious and they stop prescribing opioids for some things like circumcision or something like that. So that means that who’s left in the population of children who get opiate prescriptions are the cancer patients. Cancer patients’ opioid dosages are going to be higher because they have chronic pain.”

Dr. Chua said it is important to remember that the number of children who are affected by those high-risk prescriptions are lower because the overall number of opioid prescriptions has gone down. He added that the key piece of missing information is the absolute number of prescriptions that were high risk.

Researchers of the current study suggested that, because of the differences between pediatric and adult pain and indications for opioid prescribing, there should be national guidelines on general opioid prescribing for children and adolescents.

Experts did not disclose relevant financial relationships.

The opioid prescription rates have significantly decreased for children, teens, and younger adults between 2006 and 2018, according to new research.

“What’s important about this new study is that it documented that these improvements were also occurring for children and young adults specifically,” said Kao-Ping Chua, MD, PhD, primary care physician and assistant professor of pediatrics at the University of Michigan, Ann Arbor, who was not involved in the study. “The reason that’s important is that changes in medical practice for adults aren’t always reflected in pediatrics.”

The study, published in JAMA Pediatrics, found that dispensed opioid prescriptions for this population have decreased by 15% annually since 2013. However, the study also examined specific prescribing variables, such as duration of opioid prescription and high-dosage prescriptions. Researchers found reduced rates of high-dosage and long-duration prescriptions for adolescents and younger adults. However, these types of prescription practices increased in children aged 0-5 years.

“I think [the findings are] promising, suggesting that opiate prescribing practices may be improving,” study author Madeline Renny, MD, pediatric emergency medicine doctor at New York University Langone Health, said in an interview. “But we did find that there were increases in the young children for the practice variables, which we didn’t expect. I think that was kind of one of the findings that we were a bit surprised about and want to explore further.”

Previous studies have linked prescription opioid use in children and teens to an increased risk of future opioid misuse. A 2015 study published in Pediatrics found that using prescribed opioids before the 12th grade is associated with a 33% increase in the risk of future opioid misuse by the age of 23. The study also found that for those with a low predicted risk of future opioid misuse, an opioid prescription increases the risk for misuse after high school threefold.

Furthermore, a 2018 study published in JAMA Network Open found that, between 1999 and 2016, the annual estimated mortality rate for all children and adolescents from prescription and illicit opioid use rose 268.2%.

In the new study, Dr. Renny and colleagues examined data from 2006 to 2018 from IQVIA Longitudinal Prescription Data, which captured 74%-92% of U.S. retail outpatient opioid prescriptions dispensed to people up to the age of 24. Researchers also examined prescribing practice variables, which included opioid dispensing rates, average amount of opioid dispensed per prescription, duration of opioid prescription, high-dosage opioid prescription for individuals, and the rate in which extended-release or long-acting opioids are prescribed.

Researchers found that between 2006 and 2018, the total U.S. annual opioid prescriptions dispensed to patients younger than 25 years was highest in 2007 at 15,689,779 prescriptions, and since 2012 has steadily decreased to 6,705,478 in 2018.

“Our study did show that there were declines, but opioids remain readily dispensed,” Dr. Renny said. “And I think it’s good that rates have gone down, but I think opioids are still commonly dispensed to children and adolescents and young adults and all of our age groups.”

Dr. Chua said that the study was important, but when it came to younger children, it didn’t account for the fact that “the underlying population of patients who were getting opioids changed because it’s not the same group of children.”

“Maybe at the beginning there were more surgical patients who are getting shorter duration, lower dosage opioids,” he added. “Now some of those surgical exceptions kind of went away and who’s left in the population of people who get opioids is a sicker population.”

“Who are the 0 to 5-year-olds who are getting opioids now?” Dr. Chua asked. “Well, some of them are going to be cancer or surgical patients. If you think about it, over time their surgeons may be more judicious and they stop prescribing opioids for some things like circumcision or something like that. So that means that who’s left in the population of children who get opiate prescriptions are the cancer patients. Cancer patients’ opioid dosages are going to be higher because they have chronic pain.”

Dr. Chua said it is important to remember that the number of children who are affected by those high-risk prescriptions are lower because the overall number of opioid prescriptions has gone down. He added that the key piece of missing information is the absolute number of prescriptions that were high risk.

Researchers of the current study suggested that, because of the differences between pediatric and adult pain and indications for opioid prescribing, there should be national guidelines on general opioid prescribing for children and adolescents.

Experts did not disclose relevant financial relationships.

Background: In the final year before death, surgery is common for many patients. Prior studies have shown that fewer than 38% of surgical patients receive palliative care services before death. Palliative care involvement has been shown to improve quality of life and coordination of care in surgical patients.

Dr. Halford is a hospitalist at Beth Israel Deaconess Medical Center, and instructor in medicine, Harvard Medical School, both in Boston.

Background: In the final year before death, surgery is common for many patients. Prior studies have shown that fewer than 38% of surgical patients receive palliative care services before death. Palliative care involvement has been shown to improve quality of life and coordination of care in surgical patients.

Dr. Halford is a hospitalist at Beth Israel Deaconess Medical Center, and instructor in medicine, Harvard Medical School, both in Boston.

Background: In the final year before death, surgery is common for many patients. Prior studies have shown that fewer than 38% of surgical patients receive palliative care services before death. Palliative care involvement has been shown to improve quality of life and coordination of care in surgical patients.

Dr. Halford is a hospitalist at Beth Israel Deaconess Medical Center, and instructor in medicine, Harvard Medical School, both in Boston.

Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences for future medical care, according to Meredith A. MacMartin, MD, director of inpatient palliative care at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H.

ACP “is really about planning for care in advance,” and in many ways, the inpatient setting is uniquely suited to this process, Dr. MacMartin said in a presentation at SHM Converge 2021, the annual conference of the Society of Hospital Medicine. “The key part is the advance part. You want conversations to happen before the care is actually needed,” she said.

Dr. MacMartin emphasized the importance of distinguishing between ACP and advance directives (ADs). ACP is a process, whereas ADs are documentation, “ideally of the content of advance care planning discussions,” she explained. ACP involves discussion about what is important to the patients, their goals, what information is helpful for them, and whether their current care is aligned with their goals, Dr. MacMartin said. ADs might involve a designated power of attorney for health care, a living will, and, in some states, specific clinician-signed orders regarding resuscitation or transport to hospital.

ACP is “more than whether a patient wants CPR [cardiopulmonary resuscitation] or not,” said Dr. MacMartin. ACP matters because it helps ensure that the care a patient receives aligns with the patient’s wishes and values, she said. ACP increases the likelihood that patients will die in their preferred locations, it allows them to discuss their wishes and prepare for decline, and it relieves family members of the burden of decision making, she said. From a hospital perspective, data show that use of an ACP can decrease intensive care unit (ICU) utilization and overall health care costs. “Often, when people are given the opportunity to express their wishes, they get less unnecessary care,” Dr. MacMartin noted.

Although ACP often takes place in an outpatient setting, hospitalists are in a unique position to conduct some ACP conversations with their patients, Dr. MacMartin said. “Hospitalists are available” and are physically present at least once a day, so there is a pragmatic advantage. Also, some data suggest that patients may feel more comfortable having ACP conversations with a hospitalist than with a primary care provider with whom they have a long-standing relationship, Dr. MacMartin added.

Another important advantage of ACP in the hospital setting is that, “as hospitalists, you are the expert on inpatient illness; you know what sick looks like, and you have a unique perspective on prognostication that may be harder to recreate in the outpatient setting,” Dr. MacMartin said.
 

Barriers to ACP include patient identification, logistics, attitudes

Settings in which ACP is appropriate include those in which a patient is undergoing “sentinel hospitalization,” meaning that the patient is at a transition point in the disease course. Examples are a patient newly diagnosed with metastatic solid cancer, a patient with progressive chronic kidney disease who is considering hemodialysis, or a patient who receives treatment in the ICU for longer than 7 days, Dr. MacMartin said.

Guidelines for identifying patients who might benefit from ACP include the use of the “surprise question” (“would you be surprised if this patient dies in the next year?”) as well as functional status assessments using tools such as the Australia-modified Karnofsky Performance Status or the Eastern Cooperative Oncology Group score, said Dr. MacMartin. Some studies suggest that any hospitalized patient older than 65 years should have an ACP discussion, she added.

Time pressure remains a significant barrier to ACP conversations. Some strategies to overcome this problem include enlisting help from other specialists, particularly social workers, Dr. MacMartin said. Social workers report a higher comfort level for talking to patients about death than any other medical specialty; “this is something they want to be doing,” she said. Also, the possibility of reimbursement may act as a buffer to create more time to have ACP conversations with patients, she noted.

Addressing clinicians’ discomfort with ACP conversations can be “a tougher nut to crack,” Dr. MacMartin acknowledged. Clinicians report that they don’t want to cause their patients distress, and some report that having conversations about end-of-life care is distressing for them as well. Some of these barriers can be overcome with skills training, including use of a prepared guideline or framework to help increase the comfort level for both clinicians and patients, said Dr. MacMartin.
 

A look ahead: Training strategies and COVID-19 impact

“For hospitalists interested in developing their ACP skills, I highly recommend two resources,” Dr. MacMartin said in an interview. “The Serious Illness Conversation Guide, from Ariadne Labs, is an excellent tool for any clinician to guide discussion about a patient’s goals and values,” she said.

“For clinicians wanting to build or improve their communication, including advance care planning discussions but also topics like responding to patient’s emotions, VitalTalk training offers a deeper dive into core communications skills,” she added.

“If your hospital has a palliative care team, they may also have more local resources available to you. To learn more about billing for ACP discussions, I recommend starting with your institutional billing and coding group, as these practices vary some between practices, and they will be able to provide the best guidance for clinicians. These are new codes that aren’t yet being very widely used so it’s a chance to innovate,” Dr. MacMartin noted.

“The hospital setting is an opportunity for patients to reflect on their health, both present and in the future, with a physician who has expertise in acute illness and prognostication and who is available for discussion on a daily basis during the hospitalization,” Dr. MacMartin emphasized.

As for whether the COVID-19 pandemic has affected ACP in the inpatient setting, the data are limited, but more information is forthcoming, Dr. MacMartin said. “In my personal experience and in talking to colleagues elsewhere, the pandemic has highlighted the need for ACP in some ways, as we have tried to ensure that people who wouldn’t want things like intensive care are identified early,” she said. “I hope that some of the workflows developed to identify patients who should get ACP in the hospital stay in practice and are strengthened over time,” she added.

Dr. MacMartin has disclosed no relevant financial relationships.
 

A version of this article first appeared on Medscape.com.

Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences for future medical care, according to Meredith A. MacMartin, MD, director of inpatient palliative care at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H.

ACP “is really about planning for care in advance,” and in many ways, the inpatient setting is uniquely suited to this process, Dr. MacMartin said in a presentation at SHM Converge 2021, the annual conference of the Society of Hospital Medicine. “The key part is the advance part. You want conversations to happen before the care is actually needed,” she said.

Dr. MacMartin emphasized the importance of distinguishing between ACP and advance directives (ADs). ACP is a process, whereas ADs are documentation, “ideally of the content of advance care planning discussions,” she explained. ACP involves discussion about what is important to the patients, their goals, what information is helpful for them, and whether their current care is aligned with their goals, Dr. MacMartin said. ADs might involve a designated power of attorney for health care, a living will, and, in some states, specific clinician-signed orders regarding resuscitation or transport to hospital.

ACP is “more than whether a patient wants CPR [cardiopulmonary resuscitation] or not,” said Dr. MacMartin. ACP matters because it helps ensure that the care a patient receives aligns with the patient’s wishes and values, she said. ACP increases the likelihood that patients will die in their preferred locations, it allows them to discuss their wishes and prepare for decline, and it relieves family members of the burden of decision making, she said. From a hospital perspective, data show that use of an ACP can decrease intensive care unit (ICU) utilization and overall health care costs. “Often, when people are given the opportunity to express their wishes, they get less unnecessary care,” Dr. MacMartin noted.

Although ACP often takes place in an outpatient setting, hospitalists are in a unique position to conduct some ACP conversations with their patients, Dr. MacMartin said. “Hospitalists are available” and are physically present at least once a day, so there is a pragmatic advantage. Also, some data suggest that patients may feel more comfortable having ACP conversations with a hospitalist than with a primary care provider with whom they have a long-standing relationship, Dr. MacMartin added.

Another important advantage of ACP in the hospital setting is that, “as hospitalists, you are the expert on inpatient illness; you know what sick looks like, and you have a unique perspective on prognostication that may be harder to recreate in the outpatient setting,” Dr. MacMartin said.
 

Barriers to ACP include patient identification, logistics, attitudes

Settings in which ACP is appropriate include those in which a patient is undergoing “sentinel hospitalization,” meaning that the patient is at a transition point in the disease course. Examples are a patient newly diagnosed with metastatic solid cancer, a patient with progressive chronic kidney disease who is considering hemodialysis, or a patient who receives treatment in the ICU for longer than 7 days, Dr. MacMartin said.

Guidelines for identifying patients who might benefit from ACP include the use of the “surprise question” (“would you be surprised if this patient dies in the next year?”) as well as functional status assessments using tools such as the Australia-modified Karnofsky Performance Status or the Eastern Cooperative Oncology Group score, said Dr. MacMartin. Some studies suggest that any hospitalized patient older than 65 years should have an ACP discussion, she added.

Time pressure remains a significant barrier to ACP conversations. Some strategies to overcome this problem include enlisting help from other specialists, particularly social workers, Dr. MacMartin said. Social workers report a higher comfort level for talking to patients about death than any other medical specialty; “this is something they want to be doing,” she said. Also, the possibility of reimbursement may act as a buffer to create more time to have ACP conversations with patients, she noted.

Addressing clinicians’ discomfort with ACP conversations can be “a tougher nut to crack,” Dr. MacMartin acknowledged. Clinicians report that they don’t want to cause their patients distress, and some report that having conversations about end-of-life care is distressing for them as well. Some of these barriers can be overcome with skills training, including use of a prepared guideline or framework to help increase the comfort level for both clinicians and patients, said Dr. MacMartin.
 

A look ahead: Training strategies and COVID-19 impact

“For hospitalists interested in developing their ACP skills, I highly recommend two resources,” Dr. MacMartin said in an interview. “The Serious Illness Conversation Guide, from Ariadne Labs, is an excellent tool for any clinician to guide discussion about a patient’s goals and values,” she said.

“For clinicians wanting to build or improve their communication, including advance care planning discussions but also topics like responding to patient’s emotions, VitalTalk training offers a deeper dive into core communications skills,” she added.

“If your hospital has a palliative care team, they may also have more local resources available to you. To learn more about billing for ACP discussions, I recommend starting with your institutional billing and coding group, as these practices vary some between practices, and they will be able to provide the best guidance for clinicians. These are new codes that aren’t yet being very widely used so it’s a chance to innovate,” Dr. MacMartin noted.

“The hospital setting is an opportunity for patients to reflect on their health, both present and in the future, with a physician who has expertise in acute illness and prognostication and who is available for discussion on a daily basis during the hospitalization,” Dr. MacMartin emphasized.

As for whether the COVID-19 pandemic has affected ACP in the inpatient setting, the data are limited, but more information is forthcoming, Dr. MacMartin said. “In my personal experience and in talking to colleagues elsewhere, the pandemic has highlighted the need for ACP in some ways, as we have tried to ensure that people who wouldn’t want things like intensive care are identified early,” she said. “I hope that some of the workflows developed to identify patients who should get ACP in the hospital stay in practice and are strengthened over time,” she added.

Dr. MacMartin has disclosed no relevant financial relationships.
 

A version of this article first appeared on Medscape.com.

Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences for future medical care, according to Meredith A. MacMartin, MD, director of inpatient palliative care at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H.

ACP “is really about planning for care in advance,” and in many ways, the inpatient setting is uniquely suited to this process, Dr. MacMartin said in a presentation at SHM Converge 2021, the annual conference of the Society of Hospital Medicine. “The key part is the advance part. You want conversations to happen before the care is actually needed,” she said.

Dr. MacMartin emphasized the importance of distinguishing between ACP and advance directives (ADs). ACP is a process, whereas ADs are documentation, “ideally of the content of advance care planning discussions,” she explained. ACP involves discussion about what is important to the patients, their goals, what information is helpful for them, and whether their current care is aligned with their goals, Dr. MacMartin said. ADs might involve a designated power of attorney for health care, a living will, and, in some states, specific clinician-signed orders regarding resuscitation or transport to hospital.

ACP is “more than whether a patient wants CPR [cardiopulmonary resuscitation] or not,” said Dr. MacMartin. ACP matters because it helps ensure that the care a patient receives aligns with the patient’s wishes and values, she said. ACP increases the likelihood that patients will die in their preferred locations, it allows them to discuss their wishes and prepare for decline, and it relieves family members of the burden of decision making, she said. From a hospital perspective, data show that use of an ACP can decrease intensive care unit (ICU) utilization and overall health care costs. “Often, when people are given the opportunity to express their wishes, they get less unnecessary care,” Dr. MacMartin noted.

Although ACP often takes place in an outpatient setting, hospitalists are in a unique position to conduct some ACP conversations with their patients, Dr. MacMartin said. “Hospitalists are available” and are physically present at least once a day, so there is a pragmatic advantage. Also, some data suggest that patients may feel more comfortable having ACP conversations with a hospitalist than with a primary care provider with whom they have a long-standing relationship, Dr. MacMartin added.

Another important advantage of ACP in the hospital setting is that, “as hospitalists, you are the expert on inpatient illness; you know what sick looks like, and you have a unique perspective on prognostication that may be harder to recreate in the outpatient setting,” Dr. MacMartin said.
 

Barriers to ACP include patient identification, logistics, attitudes

Settings in which ACP is appropriate include those in which a patient is undergoing “sentinel hospitalization,” meaning that the patient is at a transition point in the disease course. Examples are a patient newly diagnosed with metastatic solid cancer, a patient with progressive chronic kidney disease who is considering hemodialysis, or a patient who receives treatment in the ICU for longer than 7 days, Dr. MacMartin said.

Guidelines for identifying patients who might benefit from ACP include the use of the “surprise question” (“would you be surprised if this patient dies in the next year?”) as well as functional status assessments using tools such as the Australia-modified Karnofsky Performance Status or the Eastern Cooperative Oncology Group score, said Dr. MacMartin. Some studies suggest that any hospitalized patient older than 65 years should have an ACP discussion, she added.

Time pressure remains a significant barrier to ACP conversations. Some strategies to overcome this problem include enlisting help from other specialists, particularly social workers, Dr. MacMartin said. Social workers report a higher comfort level for talking to patients about death than any other medical specialty; “this is something they want to be doing,” she said. Also, the possibility of reimbursement may act as a buffer to create more time to have ACP conversations with patients, she noted.

Addressing clinicians’ discomfort with ACP conversations can be “a tougher nut to crack,” Dr. MacMartin acknowledged. Clinicians report that they don’t want to cause their patients distress, and some report that having conversations about end-of-life care is distressing for them as well. Some of these barriers can be overcome with skills training, including use of a prepared guideline or framework to help increase the comfort level for both clinicians and patients, said Dr. MacMartin.
 

A look ahead: Training strategies and COVID-19 impact

“For hospitalists interested in developing their ACP skills, I highly recommend two resources,” Dr. MacMartin said in an interview. “The Serious Illness Conversation Guide, from Ariadne Labs, is an excellent tool for any clinician to guide discussion about a patient’s goals and values,” she said.

“For clinicians wanting to build or improve their communication, including advance care planning discussions but also topics like responding to patient’s emotions, VitalTalk training offers a deeper dive into core communications skills,” she added.

“If your hospital has a palliative care team, they may also have more local resources available to you. To learn more about billing for ACP discussions, I recommend starting with your institutional billing and coding group, as these practices vary some between practices, and they will be able to provide the best guidance for clinicians. These are new codes that aren’t yet being very widely used so it’s a chance to innovate,” Dr. MacMartin noted.

“The hospital setting is an opportunity for patients to reflect on their health, both present and in the future, with a physician who has expertise in acute illness and prognostication and who is available for discussion on a daily basis during the hospitalization,” Dr. MacMartin emphasized.

As for whether the COVID-19 pandemic has affected ACP in the inpatient setting, the data are limited, but more information is forthcoming, Dr. MacMartin said. “In my personal experience and in talking to colleagues elsewhere, the pandemic has highlighted the need for ACP in some ways, as we have tried to ensure that people who wouldn’t want things like intensive care are identified early,” she said. “I hope that some of the workflows developed to identify patients who should get ACP in the hospital stay in practice and are strengthened over time,” she added.

Dr. MacMartin has disclosed no relevant financial relationships.
 

A version of this article first appeared on Medscape.com.

Background: For patients receiving palliative care who develop respiratory distress, conventional oxygen therapy may not adequately relieve symptoms of dyspnea, and noninvasive ventilation may not promote comfort. Few randomized controlled trials have investigated the use of high-flow nasal cannula (HFNC) for treatment of palliative care patients who present to the hospital with respiratory distress.

Dr. Halford is a hospitalist at Beth Israel Deaconess Medical Center, and instructor in medicine, Harvard Medical School, both in Boston.

Background: For patients receiving palliative care who develop respiratory distress, conventional oxygen therapy may not adequately relieve symptoms of dyspnea, and noninvasive ventilation may not promote comfort. Few randomized controlled trials have investigated the use of high-flow nasal cannula (HFNC) for treatment of palliative care patients who present to the hospital with respiratory distress.

Dr. Halford is a hospitalist at Beth Israel Deaconess Medical Center, and instructor in medicine, Harvard Medical School, both in Boston.

Background: For patients receiving palliative care who develop respiratory distress, conventional oxygen therapy may not adequately relieve symptoms of dyspnea, and noninvasive ventilation may not promote comfort. Few randomized controlled trials have investigated the use of high-flow nasal cannula (HFNC) for treatment of palliative care patients who present to the hospital with respiratory distress.

Dr. Halford is a hospitalist at Beth Israel Deaconess Medical Center, and instructor in medicine, Harvard Medical School, both in Boston.

With intensive care units stretched to their limits – and beyond – during the COVID-19 pandemic, hospitalists became more central than ever in orchestrating the response.

At SHM Converge, the annual conference of the Society of Hospital Medicine, two hospitalists shared how their teams helped to develop new critical care units and strategies for best managing and allocating care to COVID patients in the ICU.

“The pandemic has been a selective pressure on us as a specialty,” said Jason Stein, MD, SFHM, a full-time clinical hospitalist at Roper Hospital, a 332-bed facility in Charleston, S.C.

Dr. Stein explained how hospitalists at Roper helped create the Progressive Care Unit – a negative-pressure unit with 12 high-flow oxygen beds overseen by a hospital medicine team, with the help of a respiratory therapist, pharmacist, and nurses. Patients in this unit had escalating acuity – quickly increasing oxygen needs – or deescalating acuity, such as ICU transfers, Dr. Stein said. Cardiac catheterization space was converted for the unit, which was intended to preserve beds in the hospital ICU for patients needing mechanical ventilation or vasoactive medication.

Interdisciplinary rounds – to assess oxygen and inflammatory marker trends, and run through a COVID care checklist – took place every day at 10 a.m.

“Consistency was the key,” Dr. Stein said.

At Weill Cornell Medical Center in New York, hospitalists helped build the COVID Recovery Unit, which was dedicated to the care of patients coming out of the ICU, said Vishwas Anand Singh, MD, MS, FHM, cochief of hospital medicine at New York Presbyterian–Lower Manhattan Hospital.

“The pandemic created an unprecedented need for critical care, and post-ICU care,” Dr. Singh said. “After extubation, patients remain very complicated and they have unique needs.”

The 30-bed COVID Recovery Unit – converted from a behavioral health unit – was designed to meet those needs. It was staffed by one lead hospitalist, 3 hospitalist physicians, 3 advanced practitioners, about 12 nurses and a neurologist, psychiatrist, and neuropsychologist.

The idea was to integrate medical care with careful attention to rehab and neuropsychological needs, Dr. Singh said. To be in the unit, patients had to be medically stable but with ongoing medical and rehabilitation needs and able to tolerate about half an hour of physical or occupational therapy each day.

The space was set up so that patients could interact with each other as well as staff, and this ability to share their experiences of trauma and recovery “led to an improved sense of psychological well-being and to healing,” according to Dr. Singh. Group therapy and meditation were also held several times a week.

“All this together, we thought we were really meeting the need for a lot of these patients from medical to psychosocial,” he said.

New York Presbyterian––Lower Manhattan Hospital also established a program called ICU Outreach to give hospitalists a “bird’s eye view” of the ICU in order to help move patients from unit to unit for optimized care. One hospitalist acted as a bridge between the ICU, the floors, and the emergency room.

The hospitalist on duty touched based with the ICU each day at 10 a.m., assessed the available beds, compiled a list of patients being discharged, met with all of the hospitalists and individual teams in inpatient and emergency services, and compiled a list of “watchers” – the sickest patients who needed help being managed.

The broad perspective was important, Dr. Singh said.

“We quickly found that each individual team or provider only knew the patients they were caring for, and the ICU Outreach person knew the whole big picture and could put the pieces together,” he said. “They could answer who was next in line for a bed, who benefited from a goals of care discussion, who could be managed on the floor with assistance. And this bridge, having this person fill this role, allowed the intensivists to focus on the patients they had in the unit.”
 

Palliative care and patient flow

Dr. Singh also described how hospitalists played an important role in palliative care for COVID patients. The hospital medicine team offered hospitalist palliative care services, which included COVIDtalk, a course on communicating about end of life, which helped to expand the pool of palliative care providers. Those trained were taught that these difficult conversations had to be honest and clear, with the goals of care addressed very early in the admission, should a patient decompensate soon after arrival.

A palliative “rapid response team” included a virtual hospitalist, a palliative care nurse practitioner, and a virtual psychiatrist – a team available 24 hours a day to have longer conversations so that clinicians could better tend to their patients when the in-person palliative care service was stretched thin, or at off hours like the middle of the night.

These innovations not only helped serve patients and families better, but also gave hospitalists training and experience in palliative care.

At Roper Hospital, Dr. Stein explained how hospitalists helped improve management of COVID patient flow. Depending on the time of day and the staffing on duty, there could be considerable confusion about where patients should go after the ED, or the COVID progressive unit, or the floor.

Hospitalists helped develop hospitalwide algorithms for escalating and deescalating acuity, Dr. Stein said, providing a “shared mental model for where a patient should go.”

“There are many ways hospitalists can and did rise to meet the unique demands of COVID,” Dr. Singh said, “whether it was innovating a new unit or service or work flow or leading a multidisciplinary team to extend or support other services that may have been strained.”
 

With intensive care units stretched to their limits – and beyond – during the COVID-19 pandemic, hospitalists became more central than ever in orchestrating the response.

At SHM Converge, the annual conference of the Society of Hospital Medicine, two hospitalists shared how their teams helped to develop new critical care units and strategies for best managing and allocating care to COVID patients in the ICU.

“The pandemic has been a selective pressure on us as a specialty,” said Jason Stein, MD, SFHM, a full-time clinical hospitalist at Roper Hospital, a 332-bed facility in Charleston, S.C.

Dr. Stein explained how hospitalists at Roper helped create the Progressive Care Unit – a negative-pressure unit with 12 high-flow oxygen beds overseen by a hospital medicine team, with the help of a respiratory therapist, pharmacist, and nurses. Patients in this unit had escalating acuity – quickly increasing oxygen needs – or deescalating acuity, such as ICU transfers, Dr. Stein said. Cardiac catheterization space was converted for the unit, which was intended to preserve beds in the hospital ICU for patients needing mechanical ventilation or vasoactive medication.

Interdisciplinary rounds – to assess oxygen and inflammatory marker trends, and run through a COVID care checklist – took place every day at 10 a.m.

“Consistency was the key,” Dr. Stein said.

At Weill Cornell Medical Center in New York, hospitalists helped build the COVID Recovery Unit, which was dedicated to the care of patients coming out of the ICU, said Vishwas Anand Singh, MD, MS, FHM, cochief of hospital medicine at New York Presbyterian–Lower Manhattan Hospital.

“The pandemic created an unprecedented need for critical care, and post-ICU care,” Dr. Singh said. “After extubation, patients remain very complicated and they have unique needs.”

The 30-bed COVID Recovery Unit – converted from a behavioral health unit – was designed to meet those needs. It was staffed by one lead hospitalist, 3 hospitalist physicians, 3 advanced practitioners, about 12 nurses and a neurologist, psychiatrist, and neuropsychologist.

The idea was to integrate medical care with careful attention to rehab and neuropsychological needs, Dr. Singh said. To be in the unit, patients had to be medically stable but with ongoing medical and rehabilitation needs and able to tolerate about half an hour of physical or occupational therapy each day.

The space was set up so that patients could interact with each other as well as staff, and this ability to share their experiences of trauma and recovery “led to an improved sense of psychological well-being and to healing,” according to Dr. Singh. Group therapy and meditation were also held several times a week.

“All this together, we thought we were really meeting the need for a lot of these patients from medical to psychosocial,” he said.

New York Presbyterian––Lower Manhattan Hospital also established a program called ICU Outreach to give hospitalists a “bird’s eye view” of the ICU in order to help move patients from unit to unit for optimized care. One hospitalist acted as a bridge between the ICU, the floors, and the emergency room.

The hospitalist on duty touched based with the ICU each day at 10 a.m., assessed the available beds, compiled a list of patients being discharged, met with all of the hospitalists and individual teams in inpatient and emergency services, and compiled a list of “watchers” – the sickest patients who needed help being managed.

The broad perspective was important, Dr. Singh said.

“We quickly found that each individual team or provider only knew the patients they were caring for, and the ICU Outreach person knew the whole big picture and could put the pieces together,” he said. “They could answer who was next in line for a bed, who benefited from a goals of care discussion, who could be managed on the floor with assistance. And this bridge, having this person fill this role, allowed the intensivists to focus on the patients they had in the unit.”
 

Palliative care and patient flow

Dr. Singh also described how hospitalists played an important role in palliative care for COVID patients. The hospital medicine team offered hospitalist palliative care services, which included COVIDtalk, a course on communicating about end of life, which helped to expand the pool of palliative care providers. Those trained were taught that these difficult conversations had to be honest and clear, with the goals of care addressed very early in the admission, should a patient decompensate soon after arrival.

A palliative “rapid response team” included a virtual hospitalist, a palliative care nurse practitioner, and a virtual psychiatrist – a team available 24 hours a day to have longer conversations so that clinicians could better tend to their patients when the in-person palliative care service was stretched thin, or at off hours like the middle of the night.

These innovations not only helped serve patients and families better, but also gave hospitalists training and experience in palliative care.

At Roper Hospital, Dr. Stein explained how hospitalists helped improve management of COVID patient flow. Depending on the time of day and the staffing on duty, there could be considerable confusion about where patients should go after the ED, or the COVID progressive unit, or the floor.

Hospitalists helped develop hospitalwide algorithms for escalating and deescalating acuity, Dr. Stein said, providing a “shared mental model for where a patient should go.”

“There are many ways hospitalists can and did rise to meet the unique demands of COVID,” Dr. Singh said, “whether it was innovating a new unit or service or work flow or leading a multidisciplinary team to extend or support other services that may have been strained.”
 

With intensive care units stretched to their limits – and beyond – during the COVID-19 pandemic, hospitalists became more central than ever in orchestrating the response.

At SHM Converge, the annual conference of the Society of Hospital Medicine, two hospitalists shared how their teams helped to develop new critical care units and strategies for best managing and allocating care to COVID patients in the ICU.

“The pandemic has been a selective pressure on us as a specialty,” said Jason Stein, MD, SFHM, a full-time clinical hospitalist at Roper Hospital, a 332-bed facility in Charleston, S.C.

Dr. Stein explained how hospitalists at Roper helped create the Progressive Care Unit – a negative-pressure unit with 12 high-flow oxygen beds overseen by a hospital medicine team, with the help of a respiratory therapist, pharmacist, and nurses. Patients in this unit had escalating acuity – quickly increasing oxygen needs – or deescalating acuity, such as ICU transfers, Dr. Stein said. Cardiac catheterization space was converted for the unit, which was intended to preserve beds in the hospital ICU for patients needing mechanical ventilation or vasoactive medication.

Interdisciplinary rounds – to assess oxygen and inflammatory marker trends, and run through a COVID care checklist – took place every day at 10 a.m.

“Consistency was the key,” Dr. Stein said.

At Weill Cornell Medical Center in New York, hospitalists helped build the COVID Recovery Unit, which was dedicated to the care of patients coming out of the ICU, said Vishwas Anand Singh, MD, MS, FHM, cochief of hospital medicine at New York Presbyterian–Lower Manhattan Hospital.

“The pandemic created an unprecedented need for critical care, and post-ICU care,” Dr. Singh said. “After extubation, patients remain very complicated and they have unique needs.”

The 30-bed COVID Recovery Unit – converted from a behavioral health unit – was designed to meet those needs. It was staffed by one lead hospitalist, 3 hospitalist physicians, 3 advanced practitioners, about 12 nurses and a neurologist, psychiatrist, and neuropsychologist.

The idea was to integrate medical care with careful attention to rehab and neuropsychological needs, Dr. Singh said. To be in the unit, patients had to be medically stable but with ongoing medical and rehabilitation needs and able to tolerate about half an hour of physical or occupational therapy each day.

The space was set up so that patients could interact with each other as well as staff, and this ability to share their experiences of trauma and recovery “led to an improved sense of psychological well-being and to healing,” according to Dr. Singh. Group therapy and meditation were also held several times a week.

“All this together, we thought we were really meeting the need for a lot of these patients from medical to psychosocial,” he said.

New York Presbyterian––Lower Manhattan Hospital also established a program called ICU Outreach to give hospitalists a “bird’s eye view” of the ICU in order to help move patients from unit to unit for optimized care. One hospitalist acted as a bridge between the ICU, the floors, and the emergency room.

The hospitalist on duty touched based with the ICU each day at 10 a.m., assessed the available beds, compiled a list of patients being discharged, met with all of the hospitalists and individual teams in inpatient and emergency services, and compiled a list of “watchers” – the sickest patients who needed help being managed.

The broad perspective was important, Dr. Singh said.

“We quickly found that each individual team or provider only knew the patients they were caring for, and the ICU Outreach person knew the whole big picture and could put the pieces together,” he said. “They could answer who was next in line for a bed, who benefited from a goals of care discussion, who could be managed on the floor with assistance. And this bridge, having this person fill this role, allowed the intensivists to focus on the patients they had in the unit.”
 

Palliative care and patient flow

Dr. Singh also described how hospitalists played an important role in palliative care for COVID patients. The hospital medicine team offered hospitalist palliative care services, which included COVIDtalk, a course on communicating about end of life, which helped to expand the pool of palliative care providers. Those trained were taught that these difficult conversations had to be honest and clear, with the goals of care addressed very early in the admission, should a patient decompensate soon after arrival.

A palliative “rapid response team” included a virtual hospitalist, a palliative care nurse practitioner, and a virtual psychiatrist – a team available 24 hours a day to have longer conversations so that clinicians could better tend to their patients when the in-person palliative care service was stretched thin, or at off hours like the middle of the night.

These innovations not only helped serve patients and families better, but also gave hospitalists training and experience in palliative care.

At Roper Hospital, Dr. Stein explained how hospitalists helped improve management of COVID patient flow. Depending on the time of day and the staffing on duty, there could be considerable confusion about where patients should go after the ED, or the COVID progressive unit, or the floor.

Hospitalists helped develop hospitalwide algorithms for escalating and deescalating acuity, Dr. Stein said, providing a “shared mental model for where a patient should go.”

“There are many ways hospitalists can and did rise to meet the unique demands of COVID,” Dr. Singh said, “whether it was innovating a new unit or service or work flow or leading a multidisciplinary team to extend or support other services that may have been strained.”