Hospice & Palliative Medicine

When Donna Sweet, MD, sees patients for routine exams, death and dying are often the furthest thing from their minds. Regardless of age or health status, however, Dr. Sweet regularly asks patients about end-of-life care and whether they’ve considered their options.

In the past, physicians had to be creative in how they coded for such conversations, but Medicare’s newish advance care planning benefit is changing that.

Challenges deter conversations

During a recent visit with a 72-year-old cancer patient, Bridget Fahy, MD, a surgical oncologist at the University of New Mexico, Albuquerque, spent time discussing advance directives and the importance of naming a surrogate decision maker. Dr. Fahy had treated the patient for two different cancers over the course of 4 years, and he was now diagnosed with a third, she recalled during an interview. Figuring out an advance care plan, though, proved complicated: The man was not married, had no children, and had no family members who lived in the state.

Although Dr. Fahy was aware of the Medicare advance care planning codes, she did not bill the session as such.

“Even in the course of having that conversation, I’m more apt to bill on time than I am specifically to meet the Medicare requirements for the documentation for [the benefit],” she said.

Overcoming hurdles through experience

Using the advance care planning benefit has been easier said than done in his practice, according to Carl R. Olden, MD, a family physician in Yakima, Wash. The logistics of scheduling and patient reluctance are contributing to low usage of the new codes, said Dr. Olden, a member of the American Academy of Family Physicians board of directors.

Between Sept. 1, 2016, and Aug. 31, 2017, the family medicine, primary care, internal medicine, and pulmonary medicine members of Dr. Olden’s network who provide end-of-life counseling submitted billing for a total of 106,160 Medicare visits. Of those visits, the 99497 code was submitted only 32 times, according to data provided by Dr. Olden.

At Dr. Olden’s 16-physician practice, there are no registered nurses to help set up and start Medicare wellness visits, which the advance care planning session benefit is designed to fit within, he said.

“Most of those Medicare wellness visits are driven by having a registered nurse do most of the work,” he said. “[For us] to schedule a wellness visit, it’s mostly physician work and to do a 30-minute wellness visit, most of us can see three patients in that 30-minute slot, so it ends up not being very cost effective.”

[email protected]

On Twitter @legal_med

When Donna Sweet, MD, sees patients for routine exams, death and dying are often the furthest thing from their minds. Regardless of age or health status, however, Dr. Sweet regularly asks patients about end-of-life care and whether they’ve considered their options.

In the past, physicians had to be creative in how they coded for such conversations, but Medicare’s newish advance care planning benefit is changing that.

Challenges deter conversations

During a recent visit with a 72-year-old cancer patient, Bridget Fahy, MD, a surgical oncologist at the University of New Mexico, Albuquerque, spent time discussing advance directives and the importance of naming a surrogate decision maker. Dr. Fahy had treated the patient for two different cancers over the course of 4 years, and he was now diagnosed with a third, she recalled during an interview. Figuring out an advance care plan, though, proved complicated: The man was not married, had no children, and had no family members who lived in the state.

Although Dr. Fahy was aware of the Medicare advance care planning codes, she did not bill the session as such.

“Even in the course of having that conversation, I’m more apt to bill on time than I am specifically to meet the Medicare requirements for the documentation for [the benefit],” she said.

Overcoming hurdles through experience

Using the advance care planning benefit has been easier said than done in his practice, according to Carl R. Olden, MD, a family physician in Yakima, Wash. The logistics of scheduling and patient reluctance are contributing to low usage of the new codes, said Dr. Olden, a member of the American Academy of Family Physicians board of directors.

Between Sept. 1, 2016, and Aug. 31, 2017, the family medicine, primary care, internal medicine, and pulmonary medicine members of Dr. Olden’s network who provide end-of-life counseling submitted billing for a total of 106,160 Medicare visits. Of those visits, the 99497 code was submitted only 32 times, according to data provided by Dr. Olden.

At Dr. Olden’s 16-physician practice, there are no registered nurses to help set up and start Medicare wellness visits, which the advance care planning session benefit is designed to fit within, he said.

“Most of those Medicare wellness visits are driven by having a registered nurse do most of the work,” he said. “[For us] to schedule a wellness visit, it’s mostly physician work and to do a 30-minute wellness visit, most of us can see three patients in that 30-minute slot, so it ends up not being very cost effective.”

[email protected]

On Twitter @legal_med

When Donna Sweet, MD, sees patients for routine exams, death and dying are often the furthest thing from their minds. Regardless of age or health status, however, Dr. Sweet regularly asks patients about end-of-life care and whether they’ve considered their options.

In the past, physicians had to be creative in how they coded for such conversations, but Medicare’s newish advance care planning benefit is changing that.

Challenges deter conversations

During a recent visit with a 72-year-old cancer patient, Bridget Fahy, MD, a surgical oncologist at the University of New Mexico, Albuquerque, spent time discussing advance directives and the importance of naming a surrogate decision maker. Dr. Fahy had treated the patient for two different cancers over the course of 4 years, and he was now diagnosed with a third, she recalled during an interview. Figuring out an advance care plan, though, proved complicated: The man was not married, had no children, and had no family members who lived in the state.

Although Dr. Fahy was aware of the Medicare advance care planning codes, she did not bill the session as such.

“Even in the course of having that conversation, I’m more apt to bill on time than I am specifically to meet the Medicare requirements for the documentation for [the benefit],” she said.

Overcoming hurdles through experience

Using the advance care planning benefit has been easier said than done in his practice, according to Carl R. Olden, MD, a family physician in Yakima, Wash. The logistics of scheduling and patient reluctance are contributing to low usage of the new codes, said Dr. Olden, a member of the American Academy of Family Physicians board of directors.

Between Sept. 1, 2016, and Aug. 31, 2017, the family medicine, primary care, internal medicine, and pulmonary medicine members of Dr. Olden’s network who provide end-of-life counseling submitted billing for a total of 106,160 Medicare visits. Of those visits, the 99497 code was submitted only 32 times, according to data provided by Dr. Olden.

At Dr. Olden’s 16-physician practice, there are no registered nurses to help set up and start Medicare wellness visits, which the advance care planning session benefit is designed to fit within, he said.

“Most of those Medicare wellness visits are driven by having a registered nurse do most of the work,” he said. “[For us] to schedule a wellness visit, it’s mostly physician work and to do a 30-minute wellness visit, most of us can see three patients in that 30-minute slot, so it ends up not being very cost effective.”

[email protected]

On Twitter @legal_med

Wrongful Life

There have been recent discussions in the lay media about a growing trend of litigation cases focused not on the “right to live,” but rather on the “right to die.” These cases have involved patients who received aggressive treatment, despite having documentation of their wishes not to receive such aggressive treatment. Although unsettling, it is not surprising that this issue has arisen, given the national conversations about the exorbitant cost of care at the end of life in the United States, and the frequency with which patients do not receive end-of-life care that is concordant with their wishes.

These conversations have spurred providers and patients to discuss and document their wishes, via advanced care directives and/or POLST orders (Physicians Orders for Life Sustaining Treatment). There is now even a national day devoted to advanced care decision making (National Healthcare Decisions Day).

Also on The Hospital Leader…

Follow You, Follow Me by Tracy Cardin, ACNP-BC, SFHM

SHM Movers & Shakers, Hospital Silos & JHM Research in HM News by Felicia Steele
 

Wrongful Life

There have been recent discussions in the lay media about a growing trend of litigation cases focused not on the “right to live,” but rather on the “right to die.” These cases have involved patients who received aggressive treatment, despite having documentation of their wishes not to receive such aggressive treatment. Although unsettling, it is not surprising that this issue has arisen, given the national conversations about the exorbitant cost of care at the end of life in the United States, and the frequency with which patients do not receive end-of-life care that is concordant with their wishes.

These conversations have spurred providers and patients to discuss and document their wishes, via advanced care directives and/or POLST orders (Physicians Orders for Life Sustaining Treatment). There is now even a national day devoted to advanced care decision making (National Healthcare Decisions Day).

Also on The Hospital Leader…

Follow You, Follow Me by Tracy Cardin, ACNP-BC, SFHM

SHM Movers & Shakers, Hospital Silos & JHM Research in HM News by Felicia Steele
 

Wrongful Life

There have been recent discussions in the lay media about a growing trend of litigation cases focused not on the “right to live,” but rather on the “right to die.” These cases have involved patients who received aggressive treatment, despite having documentation of their wishes not to receive such aggressive treatment. Although unsettling, it is not surprising that this issue has arisen, given the national conversations about the exorbitant cost of care at the end of life in the United States, and the frequency with which patients do not receive end-of-life care that is concordant with their wishes.

These conversations have spurred providers and patients to discuss and document their wishes, via advanced care directives and/or POLST orders (Physicians Orders for Life Sustaining Treatment). There is now even a national day devoted to advanced care decision making (National Healthcare Decisions Day).

Also on The Hospital Leader…

Follow You, Follow Me by Tracy Cardin, ACNP-BC, SFHM

SHM Movers & Shakers, Hospital Silos & JHM Research in HM News by Felicia Steele
 

With the number of aging Americans projected to grow dramatically in the next several years, the need for primary palliative care and advance care planning (ACP) is more important than ever. Patients and their families want and expect palliative care when needed, but initial conversations about ACP can be difficult for them. Appropriate timing in raising this subject and clear communication can give patients the opportunity, while they are still independent, to set their goals for medical care.

For the past several decades, political decisions and judicial cases have shaped palliative care as we know it today. And its shape is still evolving. In support of ACP, advocacy groups at a national level are developing models that practitioners can use to engage patients in setting goals. And Medicare is now reimbursing primary care providers for this work that they have been doing for years (although many still may not be billing for the service).

Finally, the busy primary care office may have its own set of challenges in addressing ACP. Our aim in this review is to identify the barriers we face and the solutions we can implement to make a difference in our patients’ end-of-life care planning.

LANDMARK EVENTS HAVE DEFINED ACP TODAY

In 1969, Luis Kutner, an Illinois attorney, proposed the idea of a “living will,” envisioned as a document specifying the types of treatment a person would be willing to receive were he or she unable at a later time to participate in making a decision.¹ In 1976, California became the first state to give living wills the power of the law through the Natural Death Act.²

Throughout the 1970s and ‘80s, several high-profile court cases brought this idea into the national spotlight. In 1975, the New Jersey Supreme Court granted the parents of 21-year-old Karen Ann Quinlan the right to discontinue the treatment sustaining her in a persistent vegetative state. Ms. Quinlan was removed from the ventilator and lived nine more months before dying in a nursing home.

In 1983, age 25, Nancy Cruzan was involved in a motor vehicle accident that left her in a persistent vegetative state. She remained so until 1988, when her parents asked that her feeding tube be removed. The hospital refused, indicating that it would lead to her death. The family sued, and the case eventually went to the US Supreme Court in 1989.

In a 5-to-4 decision, the Supreme Court ruled that a state was legally able to require “clear and convincing evidence” of a patient’s wish for removal of life-sustaining therapies. Cruzan’s family was able to provide such evidence, and her artificial nutrition was withheld. She died 12 days later.

The Cruzan case was instrumental in furthering ACP, leading to the passage of the Patient Self Determination Act by ­Congress in 1990. All federally funded health care facilities were now required to educate ­patients of their rights in determining their medical care and to ask about advance directives.³ The ACP movement gained ad­ditional momentum from the landmark SUPPORT study that documented short­comings in communication between phys­icians and patients/families about treat­ment preferences and end-of-life care in US hospitals.⁴

In the Terri Schiavo case, the patient’s husband disagreed with the life-sustaining decisions of his wife’s parents, given her persistent vegetative state and the fact that she had no chance of meaningful recovery. After a prolonged national debate, it was ultimately decided that the husband could elect to withhold artificial nutrition. (She died in 2005.) The Schiavo case, as well as the Institute of Medicine’s report on Dying in America, influenced Congress in 2016 to pass legislation funding ACP conversations.⁵

THE DEMONSTRATED BENEFITS OF ACP

When done comprehensively, ACP yields many benefits for patients and families and for the health care system. A systematic review demonstrated that, despite the few studies examining the economic cost of ACP, the process may lead to decreased health care costs in certain populations (nursing home residents, community-dwelling adults with dementia, and those living in high health care–spending regions) and at the very least does not increase health care costs.⁶ ACP has increased the number of do-not-resuscitate orders and has decreased hospitalizations, admissions to intensive care units, and rates of cardiopulmonary resuscitation, mechanical ventilation, and use of tube feeding.^6-8

More noteworthy than the decrease in resource utilization and potential cost savings is the impact that ACP can have on a patient’s quality of life. Patients who receive aggressive care at the end of life tend to experience decreased quality of life compared with those receiving hospice care.⁷ Quality-of-life scores for patients in hospice improved with the length of enrollment in that care.⁷ When ACP discussions have taken place, the care patients receive at the end of life tends to conform more closely to their wishes and to increase family satis­faction.^9-11

One reason that practitioners often give for not completing ACP is the fear of increasing patient or family anxiety or post-traumatic stress disorder (PTSD). However, studies have shown this concern to be unfounded.^7,12 While ACP studies have not shown a decrease in rates of anxiety or PTSD, no study has shown an increase in these psychologic morbidities.⁸

Caveats to keep in mind. Not all studies have shown unambiguous benefits related to ACP. Among the systematic reviews previously noted, there was significant variability in quality of data. Additionally, some experts argue that the traditional view of ACP (ie, completion of a single advance directive/living will) is outdated and should be replaced with a method that prepares patients and families to anticipate “in-the-moment decision making.”¹³ While we still believe that completion of an advance directive is useful, the experts’ point is well taken, especially since many patients change their preferences over time (and typically toward more aggressive care).^14,15 While the advance directive serves a role, it is more important to help patients recognize their goals and preferences and to facilitate ongoing discussions between the patient and his or her family/surrogate decision-maker and providers.

A SNAPSHOT OF PARTICIPATION IN ACP

Despite the ACP movement and the likely benefits associated with it, most individuals have not participated. Rates of completion do seem to be rising, but there is still room for improvement. Among all individuals older than 18, only 26.3% have an advance directive.¹⁶ In a cohort of older patients seen in an emergency department, only 40% had a living will, while nearly 54% had a designated health care power of attorney.¹⁷ Perhaps more alarming is the lack of ACP for those patients almost all providers would agree need it: the long-term care population. The National Center for Health Statistics has reported that only 28% of home health care patients, 65% of nursing home residents, and 88% of hospice patients have an advance directive on file.¹⁸

PROVIDER AND PATIENT BARRIERS TO ACP

If ACP can decrease resource utilization and improve caregiver compliance with a patient’s wishes for end of life, the obvious question is: Why isn’t it done more often? A longstanding barrier for providers has been that these types of discussions are time intensive and have not been billable. However, since January 1, 2016, we are now able to bill for these discussions. (More on this in a bit.) Providers do cite other barriers, though.

A recent systematic review showed that ACP is hindered by time constraints imposed by other clinical and administrative tasks that are heavily monitored.¹⁹ Barriers to engaging in ACP reported by patients include a reluctance to think about dying, a belief that family or providers will know what to do, difficulty understanding ACP forms, and the absence of a person who can serve as a surrogate decision-maker.^20,21

NATIONAL MODELS TO HELP WITH IMPLEMENTATION

The percentage of individuals with an advance directive in the US has not increased significantly over the past decade.²² The lack of traction in completion and use of advance directives has led several authors to question the utility of this older model of ACP.²² Several experts in the field believe that more robust, ongoing goals-of-care conversations between patients, families, and providers are equally, or even more, important than the completion of actual advance directive documents.^23,24

National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (www.polst.org). Intended for those with estimated life expectancy of less than one year, POLST is not an advance directive but a physician order for these seriously ill patients. Emergency medical service workers are legally able to follow a POLST document but not a living will or advance directive—a significant reason for those with end-stage illness to consider completing a POLST document with their health care provider. Programs such as “Respecting Choices” have incorporated POLST documentation as part of ongoing goals-of-care conversations between patients and health care providers (www.gundersenhealth.org/respecting-choices).

Many groups have developed products to encourage patients and their families to initiate conversations at home. An example is the Conversation Project, a free online resource available in multiple languages that can help break the ice for patients and get them talking about their wishes for end-of-life care (www.theconversationproject.org). It poses simple stimulating questions such as “What kind of role do you want to have in the decision-making process?” and “What are your concerns about treatment?”

HOW-TO TIPS FOR ACP IN OUTPATIENT SETTINGS

When approaching the topic of ACP with patients, it’s important to do so over time, starting as soon as possible with older patients and those with chronic illness that confers a high risk for significant morbidity or mortality. Assess each patient’s understanding of ACP and readiness to discuss the topic. Many patients think of ACP in the context of a document (eg, living will), so asking about the existence of a living will may help to start the conversation. Alternatively, consider inquiring about whether the patient has had experience with family or friends at the end of life or during a difficult medical situation, and whether the patient has thought about making personal plans for such a situation.²⁵

When a patient is ready to have this conversation, your goal should be three-fold:²⁶

1. Help the patient articulate personal values, goals, and preferences.
2. Ask the patient to formally assign health care power of attorney (POA) to a trusted individual or to name a surrogate decision-maker. Document this decision in the medical record.
3. Help the patient translate expressed values into specific medical care plans, if applicable.

Because ACP conversations are often time consuming, it’s a good idea to schedule separate appointments to focus on this alone. If, however, a patient is unable to return for a dedicated ACP visit, a first step that can be completed in a reasonably short period would be choosing a surrogate decision-maker.

Helping a patient articulate personal values may be eased by asking such questions as, “Have you ever thought about what kind of care you would want if the time came when you could not make your own decisions?” or “What worries you the most about possibly not being able to make your own decisions?”²⁷ If the patient is able to identify a surrogate decision-maker before the ACP appointment, ask that this person attend. A family member or close friend may remember instances in which the patient expressed health care preferences, and their presence can help to minimize gaps in communication.

Once the patient’s preferences are clear, document them in the medical record. Some preferences may be suitable for translation into POLST orders or an advance directive, but this is less important than the overall discussion. ACP should be an ongoing conversation, since a patient’s goals may change over time. And encourage the patient to share any desired change in plans with their surrogate decision-maker or update the POA document.

BE SURE TO BILL FOR ACP SERVICES

To encourage office-based providers to conduct ACP, the Centers for Medicare and Medicaid Services (CMS) implemented payment for CPT codes 99497 and 99498.

CPT code 99497 covers the first 30 minutes of face-to-face time with patients or their family members or medical decision-makers. This time can be used to discuss living wills or advance directives.

CPT code 99498 can be applied to each additional 30 minutes of ACP services. Typically, this billing code would be used as an add-on for a particular diagnosis, such as heart failure, chronic obstructive pulmonary disease, or pancreatic cancer.

CPT Code 99497 equates to 2.40 relative-value units (RVU) with an estimated payment of $85.99, while CPT code 99498 equates to 2.09 RVU with an estimated payment of $74.88.²⁸

According to CMS, there is no annual limit to the number of times the ACP codes can be billed for a particular patient. And there are no restrictions regarding location of service, meaning a provider could perform this in an outpatient setting, an inpatient setting, or a long-term care facility. All health care providers are allowed to bill with this code. Also worth noting: You don’t need to complete any particular documentation for a visit to be billed as an ACP service. CMS provides a helpful Q & A at www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf.

With the number of aging Americans projected to grow dramatically in the next several years, the need for primary palliative care and advance care planning (ACP) is more important than ever. Patients and their families want and expect palliative care when needed, but initial conversations about ACP can be difficult for them. Appropriate timing in raising this subject and clear communication can give patients the opportunity, while they are still independent, to set their goals for medical care.

For the past several decades, political decisions and judicial cases have shaped palliative care as we know it today. And its shape is still evolving. In support of ACP, advocacy groups at a national level are developing models that practitioners can use to engage patients in setting goals. And Medicare is now reimbursing primary care providers for this work that they have been doing for years (although many still may not be billing for the service).

Finally, the busy primary care office may have its own set of challenges in addressing ACP. Our aim in this review is to identify the barriers we face and the solutions we can implement to make a difference in our patients’ end-of-life care planning.

LANDMARK EVENTS HAVE DEFINED ACP TODAY

In 1969, Luis Kutner, an Illinois attorney, proposed the idea of a “living will,” envisioned as a document specifying the types of treatment a person would be willing to receive were he or she unable at a later time to participate in making a decision.¹ In 1976, California became the first state to give living wills the power of the law through the Natural Death Act.²

Throughout the 1970s and ‘80s, several high-profile court cases brought this idea into the national spotlight. In 1975, the New Jersey Supreme Court granted the parents of 21-year-old Karen Ann Quinlan the right to discontinue the treatment sustaining her in a persistent vegetative state. Ms. Quinlan was removed from the ventilator and lived nine more months before dying in a nursing home.

In 1983, age 25, Nancy Cruzan was involved in a motor vehicle accident that left her in a persistent vegetative state. She remained so until 1988, when her parents asked that her feeding tube be removed. The hospital refused, indicating that it would lead to her death. The family sued, and the case eventually went to the US Supreme Court in 1989.

In a 5-to-4 decision, the Supreme Court ruled that a state was legally able to require “clear and convincing evidence” of a patient’s wish for removal of life-sustaining therapies. Cruzan’s family was able to provide such evidence, and her artificial nutrition was withheld. She died 12 days later.

The Cruzan case was instrumental in furthering ACP, leading to the passage of the Patient Self Determination Act by ­Congress in 1990. All federally funded health care facilities were now required to educate ­patients of their rights in determining their medical care and to ask about advance directives.³ The ACP movement gained ad­ditional momentum from the landmark SUPPORT study that documented short­comings in communication between phys­icians and patients/families about treat­ment preferences and end-of-life care in US hospitals.⁴

In the Terri Schiavo case, the patient’s husband disagreed with the life-sustaining decisions of his wife’s parents, given her persistent vegetative state and the fact that she had no chance of meaningful recovery. After a prolonged national debate, it was ultimately decided that the husband could elect to withhold artificial nutrition. (She died in 2005.) The Schiavo case, as well as the Institute of Medicine’s report on Dying in America, influenced Congress in 2016 to pass legislation funding ACP conversations.⁵

THE DEMONSTRATED BENEFITS OF ACP

When done comprehensively, ACP yields many benefits for patients and families and for the health care system. A systematic review demonstrated that, despite the few studies examining the economic cost of ACP, the process may lead to decreased health care costs in certain populations (nursing home residents, community-dwelling adults with dementia, and those living in high health care–spending regions) and at the very least does not increase health care costs.⁶ ACP has increased the number of do-not-resuscitate orders and has decreased hospitalizations, admissions to intensive care units, and rates of cardiopulmonary resuscitation, mechanical ventilation, and use of tube feeding.^6-8

More noteworthy than the decrease in resource utilization and potential cost savings is the impact that ACP can have on a patient’s quality of life. Patients who receive aggressive care at the end of life tend to experience decreased quality of life compared with those receiving hospice care.⁷ Quality-of-life scores for patients in hospice improved with the length of enrollment in that care.⁷ When ACP discussions have taken place, the care patients receive at the end of life tends to conform more closely to their wishes and to increase family satis­faction.^9-11

One reason that practitioners often give for not completing ACP is the fear of increasing patient or family anxiety or post-traumatic stress disorder (PTSD). However, studies have shown this concern to be unfounded.^7,12 While ACP studies have not shown a decrease in rates of anxiety or PTSD, no study has shown an increase in these psychologic morbidities.⁸

Caveats to keep in mind. Not all studies have shown unambiguous benefits related to ACP. Among the systematic reviews previously noted, there was significant variability in quality of data. Additionally, some experts argue that the traditional view of ACP (ie, completion of a single advance directive/living will) is outdated and should be replaced with a method that prepares patients and families to anticipate “in-the-moment decision making.”¹³ While we still believe that completion of an advance directive is useful, the experts’ point is well taken, especially since many patients change their preferences over time (and typically toward more aggressive care).^14,15 While the advance directive serves a role, it is more important to help patients recognize their goals and preferences and to facilitate ongoing discussions between the patient and his or her family/surrogate decision-maker and providers.

A SNAPSHOT OF PARTICIPATION IN ACP

Despite the ACP movement and the likely benefits associated with it, most individuals have not participated. Rates of completion do seem to be rising, but there is still room for improvement. Among all individuals older than 18, only 26.3% have an advance directive.¹⁶ In a cohort of older patients seen in an emergency department, only 40% had a living will, while nearly 54% had a designated health care power of attorney.¹⁷ Perhaps more alarming is the lack of ACP for those patients almost all providers would agree need it: the long-term care population. The National Center for Health Statistics has reported that only 28% of home health care patients, 65% of nursing home residents, and 88% of hospice patients have an advance directive on file.¹⁸

PROVIDER AND PATIENT BARRIERS TO ACP

If ACP can decrease resource utilization and improve caregiver compliance with a patient’s wishes for end of life, the obvious question is: Why isn’t it done more often? A longstanding barrier for providers has been that these types of discussions are time intensive and have not been billable. However, since January 1, 2016, we are now able to bill for these discussions. (More on this in a bit.) Providers do cite other barriers, though.

A recent systematic review showed that ACP is hindered by time constraints imposed by other clinical and administrative tasks that are heavily monitored.¹⁹ Barriers to engaging in ACP reported by patients include a reluctance to think about dying, a belief that family or providers will know what to do, difficulty understanding ACP forms, and the absence of a person who can serve as a surrogate decision-maker.^20,21

NATIONAL MODELS TO HELP WITH IMPLEMENTATION

The percentage of individuals with an advance directive in the US has not increased significantly over the past decade.²² The lack of traction in completion and use of advance directives has led several authors to question the utility of this older model of ACP.²² Several experts in the field believe that more robust, ongoing goals-of-care conversations between patients, families, and providers are equally, or even more, important than the completion of actual advance directive documents.^23,24

National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (www.polst.org). Intended for those with estimated life expectancy of less than one year, POLST is not an advance directive but a physician order for these seriously ill patients. Emergency medical service workers are legally able to follow a POLST document but not a living will or advance directive—a significant reason for those with end-stage illness to consider completing a POLST document with their health care provider. Programs such as “Respecting Choices” have incorporated POLST documentation as part of ongoing goals-of-care conversations between patients and health care providers (www.gundersenhealth.org/respecting-choices).

Many groups have developed products to encourage patients and their families to initiate conversations at home. An example is the Conversation Project, a free online resource available in multiple languages that can help break the ice for patients and get them talking about their wishes for end-of-life care (www.theconversationproject.org). It poses simple stimulating questions such as “What kind of role do you want to have in the decision-making process?” and “What are your concerns about treatment?”

HOW-TO TIPS FOR ACP IN OUTPATIENT SETTINGS

When approaching the topic of ACP with patients, it’s important to do so over time, starting as soon as possible with older patients and those with chronic illness that confers a high risk for significant morbidity or mortality. Assess each patient’s understanding of ACP and readiness to discuss the topic. Many patients think of ACP in the context of a document (eg, living will), so asking about the existence of a living will may help to start the conversation. Alternatively, consider inquiring about whether the patient has had experience with family or friends at the end of life or during a difficult medical situation, and whether the patient has thought about making personal plans for such a situation.²⁵

When a patient is ready to have this conversation, your goal should be three-fold:²⁶

1. Help the patient articulate personal values, goals, and preferences.
2. Ask the patient to formally assign health care power of attorney (POA) to a trusted individual or to name a surrogate decision-maker. Document this decision in the medical record.
3. Help the patient translate expressed values into specific medical care plans, if applicable.

Because ACP conversations are often time consuming, it’s a good idea to schedule separate appointments to focus on this alone. If, however, a patient is unable to return for a dedicated ACP visit, a first step that can be completed in a reasonably short period would be choosing a surrogate decision-maker.

Helping a patient articulate personal values may be eased by asking such questions as, “Have you ever thought about what kind of care you would want if the time came when you could not make your own decisions?” or “What worries you the most about possibly not being able to make your own decisions?”²⁷ If the patient is able to identify a surrogate decision-maker before the ACP appointment, ask that this person attend. A family member or close friend may remember instances in which the patient expressed health care preferences, and their presence can help to minimize gaps in communication.

Once the patient’s preferences are clear, document them in the medical record. Some preferences may be suitable for translation into POLST orders or an advance directive, but this is less important than the overall discussion. ACP should be an ongoing conversation, since a patient’s goals may change over time. And encourage the patient to share any desired change in plans with their surrogate decision-maker or update the POA document.

BE SURE TO BILL FOR ACP SERVICES

To encourage office-based providers to conduct ACP, the Centers for Medicare and Medicaid Services (CMS) implemented payment for CPT codes 99497 and 99498.

CPT code 99497 covers the first 30 minutes of face-to-face time with patients or their family members or medical decision-makers. This time can be used to discuss living wills or advance directives.

CPT code 99498 can be applied to each additional 30 minutes of ACP services. Typically, this billing code would be used as an add-on for a particular diagnosis, such as heart failure, chronic obstructive pulmonary disease, or pancreatic cancer.

CPT Code 99497 equates to 2.40 relative-value units (RVU) with an estimated payment of $85.99, while CPT code 99498 equates to 2.09 RVU with an estimated payment of $74.88.²⁸

According to CMS, there is no annual limit to the number of times the ACP codes can be billed for a particular patient. And there are no restrictions regarding location of service, meaning a provider could perform this in an outpatient setting, an inpatient setting, or a long-term care facility. All health care providers are allowed to bill with this code. Also worth noting: You don’t need to complete any particular documentation for a visit to be billed as an ACP service. CMS provides a helpful Q & A at www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf.

With the number of aging Americans projected to grow dramatically in the next several years, the need for primary palliative care and advance care planning (ACP) is more important than ever. Patients and their families want and expect palliative care when needed, but initial conversations about ACP can be difficult for them. Appropriate timing in raising this subject and clear communication can give patients the opportunity, while they are still independent, to set their goals for medical care.

For the past several decades, political decisions and judicial cases have shaped palliative care as we know it today. And its shape is still evolving. In support of ACP, advocacy groups at a national level are developing models that practitioners can use to engage patients in setting goals. And Medicare is now reimbursing primary care providers for this work that they have been doing for years (although many still may not be billing for the service).

Finally, the busy primary care office may have its own set of challenges in addressing ACP. Our aim in this review is to identify the barriers we face and the solutions we can implement to make a difference in our patients’ end-of-life care planning.

LANDMARK EVENTS HAVE DEFINED ACP TODAY

In 1969, Luis Kutner, an Illinois attorney, proposed the idea of a “living will,” envisioned as a document specifying the types of treatment a person would be willing to receive were he or she unable at a later time to participate in making a decision.¹ In 1976, California became the first state to give living wills the power of the law through the Natural Death Act.²

Throughout the 1970s and ‘80s, several high-profile court cases brought this idea into the national spotlight. In 1975, the New Jersey Supreme Court granted the parents of 21-year-old Karen Ann Quinlan the right to discontinue the treatment sustaining her in a persistent vegetative state. Ms. Quinlan was removed from the ventilator and lived nine more months before dying in a nursing home.

In 1983, age 25, Nancy Cruzan was involved in a motor vehicle accident that left her in a persistent vegetative state. She remained so until 1988, when her parents asked that her feeding tube be removed. The hospital refused, indicating that it would lead to her death. The family sued, and the case eventually went to the US Supreme Court in 1989.

In a 5-to-4 decision, the Supreme Court ruled that a state was legally able to require “clear and convincing evidence” of a patient’s wish for removal of life-sustaining therapies. Cruzan’s family was able to provide such evidence, and her artificial nutrition was withheld. She died 12 days later.

The Cruzan case was instrumental in furthering ACP, leading to the passage of the Patient Self Determination Act by ­Congress in 1990. All federally funded health care facilities were now required to educate ­patients of their rights in determining their medical care and to ask about advance directives.³ The ACP movement gained ad­ditional momentum from the landmark SUPPORT study that documented short­comings in communication between phys­icians and patients/families about treat­ment preferences and end-of-life care in US hospitals.⁴

In the Terri Schiavo case, the patient’s husband disagreed with the life-sustaining decisions of his wife’s parents, given her persistent vegetative state and the fact that she had no chance of meaningful recovery. After a prolonged national debate, it was ultimately decided that the husband could elect to withhold artificial nutrition. (She died in 2005.) The Schiavo case, as well as the Institute of Medicine’s report on Dying in America, influenced Congress in 2016 to pass legislation funding ACP conversations.⁵

THE DEMONSTRATED BENEFITS OF ACP

When done comprehensively, ACP yields many benefits for patients and families and for the health care system. A systematic review demonstrated that, despite the few studies examining the economic cost of ACP, the process may lead to decreased health care costs in certain populations (nursing home residents, community-dwelling adults with dementia, and those living in high health care–spending regions) and at the very least does not increase health care costs.⁶ ACP has increased the number of do-not-resuscitate orders and has decreased hospitalizations, admissions to intensive care units, and rates of cardiopulmonary resuscitation, mechanical ventilation, and use of tube feeding.^6-8

More noteworthy than the decrease in resource utilization and potential cost savings is the impact that ACP can have on a patient’s quality of life. Patients who receive aggressive care at the end of life tend to experience decreased quality of life compared with those receiving hospice care.⁷ Quality-of-life scores for patients in hospice improved with the length of enrollment in that care.⁷ When ACP discussions have taken place, the care patients receive at the end of life tends to conform more closely to their wishes and to increase family satis­faction.^9-11

One reason that practitioners often give for not completing ACP is the fear of increasing patient or family anxiety or post-traumatic stress disorder (PTSD). However, studies have shown this concern to be unfounded.^7,12 While ACP studies have not shown a decrease in rates of anxiety or PTSD, no study has shown an increase in these psychologic morbidities.⁸

Caveats to keep in mind. Not all studies have shown unambiguous benefits related to ACP. Among the systematic reviews previously noted, there was significant variability in quality of data. Additionally, some experts argue that the traditional view of ACP (ie, completion of a single advance directive/living will) is outdated and should be replaced with a method that prepares patients and families to anticipate “in-the-moment decision making.”¹³ While we still believe that completion of an advance directive is useful, the experts’ point is well taken, especially since many patients change their preferences over time (and typically toward more aggressive care).^14,15 While the advance directive serves a role, it is more important to help patients recognize their goals and preferences and to facilitate ongoing discussions between the patient and his or her family/surrogate decision-maker and providers.

A SNAPSHOT OF PARTICIPATION IN ACP

Despite the ACP movement and the likely benefits associated with it, most individuals have not participated. Rates of completion do seem to be rising, but there is still room for improvement. Among all individuals older than 18, only 26.3% have an advance directive.¹⁶ In a cohort of older patients seen in an emergency department, only 40% had a living will, while nearly 54% had a designated health care power of attorney.¹⁷ Perhaps more alarming is the lack of ACP for those patients almost all providers would agree need it: the long-term care population. The National Center for Health Statistics has reported that only 28% of home health care patients, 65% of nursing home residents, and 88% of hospice patients have an advance directive on file.¹⁸

PROVIDER AND PATIENT BARRIERS TO ACP

If ACP can decrease resource utilization and improve caregiver compliance with a patient’s wishes for end of life, the obvious question is: Why isn’t it done more often? A longstanding barrier for providers has been that these types of discussions are time intensive and have not been billable. However, since January 1, 2016, we are now able to bill for these discussions. (More on this in a bit.) Providers do cite other barriers, though.

A recent systematic review showed that ACP is hindered by time constraints imposed by other clinical and administrative tasks that are heavily monitored.¹⁹ Barriers to engaging in ACP reported by patients include a reluctance to think about dying, a belief that family or providers will know what to do, difficulty understanding ACP forms, and the absence of a person who can serve as a surrogate decision-maker.^20,21

NATIONAL MODELS TO HELP WITH IMPLEMENTATION

The percentage of individuals with an advance directive in the US has not increased significantly over the past decade.²² The lack of traction in completion and use of advance directives has led several authors to question the utility of this older model of ACP.²² Several experts in the field believe that more robust, ongoing goals-of-care conversations between patients, families, and providers are equally, or even more, important than the completion of actual advance directive documents.^23,24

National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (www.polst.org). Intended for those with estimated life expectancy of less than one year, POLST is not an advance directive but a physician order for these seriously ill patients. Emergency medical service workers are legally able to follow a POLST document but not a living will or advance directive—a significant reason for those with end-stage illness to consider completing a POLST document with their health care provider. Programs such as “Respecting Choices” have incorporated POLST documentation as part of ongoing goals-of-care conversations between patients and health care providers (www.gundersenhealth.org/respecting-choices).

Many groups have developed products to encourage patients and their families to initiate conversations at home. An example is the Conversation Project, a free online resource available in multiple languages that can help break the ice for patients and get them talking about their wishes for end-of-life care (www.theconversationproject.org). It poses simple stimulating questions such as “What kind of role do you want to have in the decision-making process?” and “What are your concerns about treatment?”

HOW-TO TIPS FOR ACP IN OUTPATIENT SETTINGS

When approaching the topic of ACP with patients, it’s important to do so over time, starting as soon as possible with older patients and those with chronic illness that confers a high risk for significant morbidity or mortality. Assess each patient’s understanding of ACP and readiness to discuss the topic. Many patients think of ACP in the context of a document (eg, living will), so asking about the existence of a living will may help to start the conversation. Alternatively, consider inquiring about whether the patient has had experience with family or friends at the end of life or during a difficult medical situation, and whether the patient has thought about making personal plans for such a situation.²⁵

When a patient is ready to have this conversation, your goal should be three-fold:²⁶

1. Help the patient articulate personal values, goals, and preferences.
2. Ask the patient to formally assign health care power of attorney (POA) to a trusted individual or to name a surrogate decision-maker. Document this decision in the medical record.
3. Help the patient translate expressed values into specific medical care plans, if applicable.

Because ACP conversations are often time consuming, it’s a good idea to schedule separate appointments to focus on this alone. If, however, a patient is unable to return for a dedicated ACP visit, a first step that can be completed in a reasonably short period would be choosing a surrogate decision-maker.

Helping a patient articulate personal values may be eased by asking such questions as, “Have you ever thought about what kind of care you would want if the time came when you could not make your own decisions?” or “What worries you the most about possibly not being able to make your own decisions?”²⁷ If the patient is able to identify a surrogate decision-maker before the ACP appointment, ask that this person attend. A family member or close friend may remember instances in which the patient expressed health care preferences, and their presence can help to minimize gaps in communication.

Once the patient’s preferences are clear, document them in the medical record. Some preferences may be suitable for translation into POLST orders or an advance directive, but this is less important than the overall discussion. ACP should be an ongoing conversation, since a patient’s goals may change over time. And encourage the patient to share any desired change in plans with their surrogate decision-maker or update the POA document.

BE SURE TO BILL FOR ACP SERVICES

To encourage office-based providers to conduct ACP, the Centers for Medicare and Medicaid Services (CMS) implemented payment for CPT codes 99497 and 99498.

CPT code 99497 covers the first 30 minutes of face-to-face time with patients or their family members or medical decision-makers. This time can be used to discuss living wills or advance directives.

CPT code 99498 can be applied to each additional 30 minutes of ACP services. Typically, this billing code would be used as an add-on for a particular diagnosis, such as heart failure, chronic obstructive pulmonary disease, or pancreatic cancer.

CPT Code 99497 equates to 2.40 relative-value units (RVU) with an estimated payment of $85.99, while CPT code 99498 equates to 2.09 RVU with an estimated payment of $74.88.²⁸

According to CMS, there is no annual limit to the number of times the ACP codes can be billed for a particular patient. And there are no restrictions regarding location of service, meaning a provider could perform this in an outpatient setting, an inpatient setting, or a long-term care facility. All health care providers are allowed to bill with this code. Also worth noting: You don’t need to complete any particular documentation for a visit to be billed as an ACP service. CMS provides a helpful Q & A at www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf.

Until now, research on meaning in cancer patients has focused mostly on patients with advanced cancer, who may be facing existential issues like the desire for hastened death. But as more people survive cancer, a sense of meaning is also an important issue for them, say researchers from VU University in Amsterdam. Those patients may be facing “fundamental uncertainties,” such as possible recurrence, long-term adverse effects of treatment, and physical, personal, and social losses. Helping them come to terms with those stressors can have benefits: higher psychological well-being, more successful adjustment, better quality of life.

Related: Social Interaction May Enhance Patient Survival After Chemotherapy

Noting the results of meaning-centered group psychotherapy (MCGP) for patients with advanced cancer, the researchers decided to compare MCGP with supportive group therapy (SGP) and usual care. Their study included 170 survivors who were diagnosed in the past 5 years, were treated with curative intent, and had completed their main treatment (surgery, radiotherapy, chemotherapy). Patients also had to have an expressed need for psychological care and at least 1 psychosocial condition, such as depressed mood, anxiety, or coping issues.

The researchers adapted the original MCGP intervention with different terminologies and topics more relevant for survivors (MCGP-CS [cancer survivors]). For instance, the topic “a good and meaningful death” was replaced by “carrying on in life despite limitations.” Topics included “The story of our life as a source of meaning: things we have done and want to do in the future.” The researchers also added mindfulness exercises to help patients with introspection.

Related: Women Living Longer With Metastatic Breast Cancer

The intervention consisted of 8 once-weekly sessions using didactics, group discussions, experimental exercises, and homework assignments. The SGP sessions, also 8 once-weekly meetings, did not pay specific attention to meaning. The psychotherapists leading the sessions, while maintaining an “unconditionally positive regard and empathetic understanding,” were trained to avoid group discussions on meaning-related topics. The primary outcome, measured before and after the intervention, then at 3 and 6 months, was personal meaning; secondary outcomes included psychological well-being, adjustment to cancer, optimism, and quality of life.

The researchers found “evidence for the efficacy of MCGP-CS to improve personal meaning among cancer survivors,” in both the short and longer terms. MCGP-CS participants scored significantly higher on goal-orientedness, psychological well-being, and adjustment to cancer. At 6 months, the intervention group also had lower scores for psychological distress and depressive symptoms.

Source:
van der Spek N, Vos J, van Uden-Kraan CF, et al. 2017;47(11):1990-2001.
doi: 10.1017/S0033291717000447.

Until now, research on meaning in cancer patients has focused mostly on patients with advanced cancer, who may be facing existential issues like the desire for hastened death. But as more people survive cancer, a sense of meaning is also an important issue for them, say researchers from VU University in Amsterdam. Those patients may be facing “fundamental uncertainties,” such as possible recurrence, long-term adverse effects of treatment, and physical, personal, and social losses. Helping them come to terms with those stressors can have benefits: higher psychological well-being, more successful adjustment, better quality of life.

Related: Social Interaction May Enhance Patient Survival After Chemotherapy

Noting the results of meaning-centered group psychotherapy (MCGP) for patients with advanced cancer, the researchers decided to compare MCGP with supportive group therapy (SGP) and usual care. Their study included 170 survivors who were diagnosed in the past 5 years, were treated with curative intent, and had completed their main treatment (surgery, radiotherapy, chemotherapy). Patients also had to have an expressed need for psychological care and at least 1 psychosocial condition, such as depressed mood, anxiety, or coping issues.

The researchers adapted the original MCGP intervention with different terminologies and topics more relevant for survivors (MCGP-CS [cancer survivors]). For instance, the topic “a good and meaningful death” was replaced by “carrying on in life despite limitations.” Topics included “The story of our life as a source of meaning: things we have done and want to do in the future.” The researchers also added mindfulness exercises to help patients with introspection.

Related: Women Living Longer With Metastatic Breast Cancer

The intervention consisted of 8 once-weekly sessions using didactics, group discussions, experimental exercises, and homework assignments. The SGP sessions, also 8 once-weekly meetings, did not pay specific attention to meaning. The psychotherapists leading the sessions, while maintaining an “unconditionally positive regard and empathetic understanding,” were trained to avoid group discussions on meaning-related topics. The primary outcome, measured before and after the intervention, then at 3 and 6 months, was personal meaning; secondary outcomes included psychological well-being, adjustment to cancer, optimism, and quality of life.

The researchers found “evidence for the efficacy of MCGP-CS to improve personal meaning among cancer survivors,” in both the short and longer terms. MCGP-CS participants scored significantly higher on goal-orientedness, psychological well-being, and adjustment to cancer. At 6 months, the intervention group also had lower scores for psychological distress and depressive symptoms.

Source:
van der Spek N, Vos J, van Uden-Kraan CF, et al. 2017;47(11):1990-2001.
doi: 10.1017/S0033291717000447.

Until now, research on meaning in cancer patients has focused mostly on patients with advanced cancer, who may be facing existential issues like the desire for hastened death. But as more people survive cancer, a sense of meaning is also an important issue for them, say researchers from VU University in Amsterdam. Those patients may be facing “fundamental uncertainties,” such as possible recurrence, long-term adverse effects of treatment, and physical, personal, and social losses. Helping them come to terms with those stressors can have benefits: higher psychological well-being, more successful adjustment, better quality of life.

Related: Social Interaction May Enhance Patient Survival After Chemotherapy

Noting the results of meaning-centered group psychotherapy (MCGP) for patients with advanced cancer, the researchers decided to compare MCGP with supportive group therapy (SGP) and usual care. Their study included 170 survivors who were diagnosed in the past 5 years, were treated with curative intent, and had completed their main treatment (surgery, radiotherapy, chemotherapy). Patients also had to have an expressed need for psychological care and at least 1 psychosocial condition, such as depressed mood, anxiety, or coping issues.

The researchers adapted the original MCGP intervention with different terminologies and topics more relevant for survivors (MCGP-CS [cancer survivors]). For instance, the topic “a good and meaningful death” was replaced by “carrying on in life despite limitations.” Topics included “The story of our life as a source of meaning: things we have done and want to do in the future.” The researchers also added mindfulness exercises to help patients with introspection.

Related: Women Living Longer With Metastatic Breast Cancer

The intervention consisted of 8 once-weekly sessions using didactics, group discussions, experimental exercises, and homework assignments. The SGP sessions, also 8 once-weekly meetings, did not pay specific attention to meaning. The psychotherapists leading the sessions, while maintaining an “unconditionally positive regard and empathetic understanding,” were trained to avoid group discussions on meaning-related topics. The primary outcome, measured before and after the intervention, then at 3 and 6 months, was personal meaning; secondary outcomes included psychological well-being, adjustment to cancer, optimism, and quality of life.

The researchers found “evidence for the efficacy of MCGP-CS to improve personal meaning among cancer survivors,” in both the short and longer terms. MCGP-CS participants scored significantly higher on goal-orientedness, psychological well-being, and adjustment to cancer. At 6 months, the intervention group also had lower scores for psychological distress and depressive symptoms.

Source:
van der Spek N, Vos J, van Uden-Kraan CF, et al. 2017;47(11):1990-2001.
doi: 10.1017/S0033291717000447.

The 90-year-old woman in the San Diego–area nursing home was quite clear, said Karl Steinberg, MD. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR.

But when Dr. Steinberg, a palliative care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it.

“She said, ‘I don’t agree with that. My mom is confused,’ ” Steinberg recalled. “I said, ‘Let’s talk about it.’ ”

Instead of arguing, Dr. Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance-care planning session, an end-of-life consultation that’s now being paid for by Medicare.

In 2016, the first year that health care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.

Nearly 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.

Use was much higher than expected, nearly double the 300,000 people that the American Medical Association projected would use the service in the first year.

That’s good news to proponents of the sessions, which focus on understanding and documenting treatment preferences for people nearing the end of their lives. Patients – and often their families – discuss with a doctor or other provider what kind of care they want if they’re unable to make decisions themselves.

“I think it’s great that half a million people talked with their doctors last year. That’s a good thing,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit that promotes end-of-life discussions. “Physician practices are learning. My guess is that it will increase each year.”

Still, only a fraction of eligible Medicare providers – and patients – have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.

Nationwide, slightly more than 1% of the more than 56 million Medicare beneficiaries enrolled at the end of 2016 received advance-care planning talks, according to calculations by health policy analysts at Duke University, Durham, N.C. But use varied widely among states, from 0.2% of Alaska Medicare recipients to 2.49% of those enrolled in the program in Hawaii.

“There’s tremendous variation by state. That’s the first thing that jumps out,” said Donald Taylor Jr., a Duke professor of public policy.

In part, that’s because many providers, especially primary care doctors, aren’t aware that the Medicare reimbursement agreement, approved in 2015, has taken effect.

“Some physicians don’t know that this is a service,” said Barbie Hays, a Medicare coding and compliance strategist for the American Academy of Family Physicians. “They don’t know how to get paid for it. One of the struggles here is we’re trying to get this message out to our members.”

There also may be lingering controversy over the sessions, which were famously decried as “death panels” during the 2009 debate about the Affordable Care Act. Earlier this year, the issue resurfaced in Congress, where Rep. Steve King (R-Iowa) introduced the Protecting Life Until Natural Death Act, which would halt Medicare reimbursement for advance-care planning appointments.

Mr. King said the move was financially motivated and not in the interest of Americans “who were promised life-sustaining care in their older years.”

Proponents like Dr. Steinberg, however, contend that informed decisions, not cost savings, are the point of the new policy.

“It’s really important to say the reason for this isn’t to save money, although that may be a side benefit, but it’s really about person-centered care,” he said. “It’s about taking the time when people are ill or even when they’re not ill to talk about what their values are. To talk about what constitutes an acceptable versus an unacceptable quality of life.”

That’s just the discussion that the San Diego nursing home resident was able to have with her daughter, Dr. Steinberg said. The 90-year-old was able to say why she didn’t want CPR or to be intubated if she became seriously ill.

“I believe it brought the two of them closer,” Dr. Steinberg said. Even though the daughter didn’t necessarily hear what she wanted to hear. It was like, “You may not agree with your mom, but she’s your mom, and if she doesn’t want somebody beating her chest or ramming a tube down her throat, that’s her decision.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation. Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

The 90-year-old woman in the San Diego–area nursing home was quite clear, said Karl Steinberg, MD. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR.

But when Dr. Steinberg, a palliative care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it.

“She said, ‘I don’t agree with that. My mom is confused,’ ” Steinberg recalled. “I said, ‘Let’s talk about it.’ ”

Instead of arguing, Dr. Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance-care planning session, an end-of-life consultation that’s now being paid for by Medicare.

In 2016, the first year that health care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.

Nearly 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.

Use was much higher than expected, nearly double the 300,000 people that the American Medical Association projected would use the service in the first year.

That’s good news to proponents of the sessions, which focus on understanding and documenting treatment preferences for people nearing the end of their lives. Patients – and often their families – discuss with a doctor or other provider what kind of care they want if they’re unable to make decisions themselves.

“I think it’s great that half a million people talked with their doctors last year. That’s a good thing,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit that promotes end-of-life discussions. “Physician practices are learning. My guess is that it will increase each year.”

Still, only a fraction of eligible Medicare providers – and patients – have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.

Nationwide, slightly more than 1% of the more than 56 million Medicare beneficiaries enrolled at the end of 2016 received advance-care planning talks, according to calculations by health policy analysts at Duke University, Durham, N.C. But use varied widely among states, from 0.2% of Alaska Medicare recipients to 2.49% of those enrolled in the program in Hawaii.

“There’s tremendous variation by state. That’s the first thing that jumps out,” said Donald Taylor Jr., a Duke professor of public policy.

In part, that’s because many providers, especially primary care doctors, aren’t aware that the Medicare reimbursement agreement, approved in 2015, has taken effect.

“Some physicians don’t know that this is a service,” said Barbie Hays, a Medicare coding and compliance strategist for the American Academy of Family Physicians. “They don’t know how to get paid for it. One of the struggles here is we’re trying to get this message out to our members.”

There also may be lingering controversy over the sessions, which were famously decried as “death panels” during the 2009 debate about the Affordable Care Act. Earlier this year, the issue resurfaced in Congress, where Rep. Steve King (R-Iowa) introduced the Protecting Life Until Natural Death Act, which would halt Medicare reimbursement for advance-care planning appointments.

Mr. King said the move was financially motivated and not in the interest of Americans “who were promised life-sustaining care in their older years.”

Proponents like Dr. Steinberg, however, contend that informed decisions, not cost savings, are the point of the new policy.

“It’s really important to say the reason for this isn’t to save money, although that may be a side benefit, but it’s really about person-centered care,” he said. “It’s about taking the time when people are ill or even when they’re not ill to talk about what their values are. To talk about what constitutes an acceptable versus an unacceptable quality of life.”

That’s just the discussion that the San Diego nursing home resident was able to have with her daughter, Dr. Steinberg said. The 90-year-old was able to say why she didn’t want CPR or to be intubated if she became seriously ill.

“I believe it brought the two of them closer,” Dr. Steinberg said. Even though the daughter didn’t necessarily hear what she wanted to hear. It was like, “You may not agree with your mom, but she’s your mom, and if she doesn’t want somebody beating her chest or ramming a tube down her throat, that’s her decision.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation. Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

The 90-year-old woman in the San Diego–area nursing home was quite clear, said Karl Steinberg, MD. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR.

But when Dr. Steinberg, a palliative care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it.

“She said, ‘I don’t agree with that. My mom is confused,’ ” Steinberg recalled. “I said, ‘Let’s talk about it.’ ”

Instead of arguing, Dr. Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance-care planning session, an end-of-life consultation that’s now being paid for by Medicare.

In 2016, the first year that health care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.

Nearly 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.

Use was much higher than expected, nearly double the 300,000 people that the American Medical Association projected would use the service in the first year.

That’s good news to proponents of the sessions, which focus on understanding and documenting treatment preferences for people nearing the end of their lives. Patients – and often their families – discuss with a doctor or other provider what kind of care they want if they’re unable to make decisions themselves.

“I think it’s great that half a million people talked with their doctors last year. That’s a good thing,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit that promotes end-of-life discussions. “Physician practices are learning. My guess is that it will increase each year.”

Still, only a fraction of eligible Medicare providers – and patients – have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.

Nationwide, slightly more than 1% of the more than 56 million Medicare beneficiaries enrolled at the end of 2016 received advance-care planning talks, according to calculations by health policy analysts at Duke University, Durham, N.C. But use varied widely among states, from 0.2% of Alaska Medicare recipients to 2.49% of those enrolled in the program in Hawaii.

“There’s tremendous variation by state. That’s the first thing that jumps out,” said Donald Taylor Jr., a Duke professor of public policy.

In part, that’s because many providers, especially primary care doctors, aren’t aware that the Medicare reimbursement agreement, approved in 2015, has taken effect.

“Some physicians don’t know that this is a service,” said Barbie Hays, a Medicare coding and compliance strategist for the American Academy of Family Physicians. “They don’t know how to get paid for it. One of the struggles here is we’re trying to get this message out to our members.”

There also may be lingering controversy over the sessions, which were famously decried as “death panels” during the 2009 debate about the Affordable Care Act. Earlier this year, the issue resurfaced in Congress, where Rep. Steve King (R-Iowa) introduced the Protecting Life Until Natural Death Act, which would halt Medicare reimbursement for advance-care planning appointments.

Mr. King said the move was financially motivated and not in the interest of Americans “who were promised life-sustaining care in their older years.”

Proponents like Dr. Steinberg, however, contend that informed decisions, not cost savings, are the point of the new policy.

“It’s really important to say the reason for this isn’t to save money, although that may be a side benefit, but it’s really about person-centered care,” he said. “It’s about taking the time when people are ill or even when they’re not ill to talk about what their values are. To talk about what constitutes an acceptable versus an unacceptable quality of life.”

That’s just the discussion that the San Diego nursing home resident was able to have with her daughter, Dr. Steinberg said. The 90-year-old was able to say why she didn’t want CPR or to be intubated if she became seriously ill.

“I believe it brought the two of them closer,” Dr. Steinberg said. Even though the daughter didn’t necessarily hear what she wanted to hear. It was like, “You may not agree with your mom, but she’s your mom, and if she doesn’t want somebody beating her chest or ramming a tube down her throat, that’s her decision.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation. Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

More than a quarter of the patients in palliative care have a primary diagnosis of cancer, according to the Center to Advance Palliative Care.

A survey of 351 palliative care programs showed that 27% of their patients had been diagnosed with cancer in 2016, more than twice as many patients who had a cardiac (13%) or pulmonary (12%) diagnosis. The next most common primary diagnosis category in 2016 was neurologic at 8%, with a tie at 6% between diagnoses classified as infectious or complex chronic, followed by patients with dementia at 5%, Maggie Rogers and Tamara Dumanovsky, PhD, of the CAPC reported.

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More than a quarter of the patients in palliative care have a primary diagnosis of cancer, according to the Center to Advance Palliative Care.

A survey of 351 palliative care programs showed that 27% of their patients had been diagnosed with cancer in 2016, more than twice as many patients who had a cardiac (13%) or pulmonary (12%) diagnosis. The next most common primary diagnosis category in 2016 was neurologic at 8%, with a tie at 6% between diagnoses classified as infectious or complex chronic, followed by patients with dementia at 5%, Maggie Rogers and Tamara Dumanovsky, PhD, of the CAPC reported.

[email protected]

More than a quarter of the patients in palliative care have a primary diagnosis of cancer, according to the Center to Advance Palliative Care.

A survey of 351 palliative care programs showed that 27% of their patients had been diagnosed with cancer in 2016, more than twice as many patients who had a cardiac (13%) or pulmonary (12%) diagnosis. The next most common primary diagnosis category in 2016 was neurologic at 8%, with a tie at 6% between diagnoses classified as infectious or complex chronic, followed by patients with dementia at 5%, Maggie Rogers and Tamara Dumanovsky, PhD, of the CAPC reported.

[email protected]