Hospice & Palliative Medicine

Although the concept of the living will was first proposed in 1969,¹ the idea caught on slowly. In fact, the first scholarly article discussing the topic didn’t appear until 16 years later.²

In contrast, an informal search of PubMed reveals that at least 38 articles on advance directives and end-of-life care have been published during the first 7 months of 2017. And a feature article in this month’s issue of JFP makes one more. Why is there such strong interest now in an issue that seldom arose when I began practice in 1978?

More complex, less personalized medicine. As medical care has become more sophisticated, there is a great deal more we can do to keep people alive as they approach the end of life, and a great many more decisions to be made.

Now, most dying hospitalized patients are cared for by hospitalists who may be meeting the patient for the first time.

Additionally, people are much less likely today to be cared for in their dying days by a family physician who knows them, their wishes, and their family well. In my early years in small-town practice, I was present when my patients were dying, and I usually knew their family members. Family meetings were easy to arrange, and we quickly came to a consensus about what to do and what not to do. If I was not available, one of my practice partners was. We cared for our patients in the office, nursing home, and hospital. Now, most dying hospitalized patients are cared for by hospitalists who may be meeting the patient for the first time.

Getting more people to participate. Consequently, it is important to understand patients’ wishes for end-of-life care and to document those wishes in writing, using things like a POLST (Physician Orders for Life-Sustaining Treatment) form. Although randomized trials support the value of advance care planning, especially in primary care settings,^3,4 two-thirds of Americans have not completed an advance directive.⁵ Rolnick suggests we “delegalize” the process to remove barriers and make it easier for people to execute such documents and integrate them into health care systems.⁶

Make it part of your office routine. A 70-year-old patient of mine with advanced COPD arrived at his office visit last month with advance directive and POLST forms in hand. We had an excellent, frank conversation, spiced with humor that he supplied, about his wishes for end-of-life care. Just like so many other tasks that we must squeeze into our busy schedules, this is one that we should hard-wire into our office systems and routines.

Although the concept of the living will was first proposed in 1969,¹ the idea caught on slowly. In fact, the first scholarly article discussing the topic didn’t appear until 16 years later.²

In contrast, an informal search of PubMed reveals that at least 38 articles on advance directives and end-of-life care have been published during the first 7 months of 2017. And a feature article in this month’s issue of JFP makes one more. Why is there such strong interest now in an issue that seldom arose when I began practice in 1978?

More complex, less personalized medicine. As medical care has become more sophisticated, there is a great deal more we can do to keep people alive as they approach the end of life, and a great many more decisions to be made.

Now, most dying hospitalized patients are cared for by hospitalists who may be meeting the patient for the first time.

Additionally, people are much less likely today to be cared for in their dying days by a family physician who knows them, their wishes, and their family well. In my early years in small-town practice, I was present when my patients were dying, and I usually knew their family members. Family meetings were easy to arrange, and we quickly came to a consensus about what to do and what not to do. If I was not available, one of my practice partners was. We cared for our patients in the office, nursing home, and hospital. Now, most dying hospitalized patients are cared for by hospitalists who may be meeting the patient for the first time.

Getting more people to participate. Consequently, it is important to understand patients’ wishes for end-of-life care and to document those wishes in writing, using things like a POLST (Physician Orders for Life-Sustaining Treatment) form. Although randomized trials support the value of advance care planning, especially in primary care settings,^3,4 two-thirds of Americans have not completed an advance directive.⁵ Rolnick suggests we “delegalize” the process to remove barriers and make it easier for people to execute such documents and integrate them into health care systems.⁶

Make it part of your office routine. A 70-year-old patient of mine with advanced COPD arrived at his office visit last month with advance directive and POLST forms in hand. We had an excellent, frank conversation, spiced with humor that he supplied, about his wishes for end-of-life care. Just like so many other tasks that we must squeeze into our busy schedules, this is one that we should hard-wire into our office systems and routines.

Although the concept of the living will was first proposed in 1969,¹ the idea caught on slowly. In fact, the first scholarly article discussing the topic didn’t appear until 16 years later.²

In contrast, an informal search of PubMed reveals that at least 38 articles on advance directives and end-of-life care have been published during the first 7 months of 2017. And a feature article in this month’s issue of JFP makes one more. Why is there such strong interest now in an issue that seldom arose when I began practice in 1978?

More complex, less personalized medicine. As medical care has become more sophisticated, there is a great deal more we can do to keep people alive as they approach the end of life, and a great many more decisions to be made.

Now, most dying hospitalized patients are cared for by hospitalists who may be meeting the patient for the first time.

Additionally, people are much less likely today to be cared for in their dying days by a family physician who knows them, their wishes, and their family well. In my early years in small-town practice, I was present when my patients were dying, and I usually knew their family members. Family meetings were easy to arrange, and we quickly came to a consensus about what to do and what not to do. If I was not available, one of my practice partners was. We cared for our patients in the office, nursing home, and hospital. Now, most dying hospitalized patients are cared for by hospitalists who may be meeting the patient for the first time.

Getting more people to participate. Consequently, it is important to understand patients’ wishes for end-of-life care and to document those wishes in writing, using things like a POLST (Physician Orders for Life-Sustaining Treatment) form. Although randomized trials support the value of advance care planning, especially in primary care settings,^3,4 two-thirds of Americans have not completed an advance directive.⁵ Rolnick suggests we “delegalize” the process to remove barriers and make it easier for people to execute such documents and integrate them into health care systems.⁶

Make it part of your office routine. A 70-year-old patient of mine with advanced COPD arrived at his office visit last month with advance directive and POLST forms in hand. We had an excellent, frank conversation, spiced with humor that he supplied, about his wishes for end-of-life care. Just like so many other tasks that we must squeeze into our busy schedules, this is one that we should hard-wire into our office systems and routines.

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.

[polldaddy:9795119]

Landmark events have defined advance care planning 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 they 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 9 more months before dying in a nursing home.

A few years later, Nancy Cruzan, a 32-year-old woman involved in a 1983 motor vehicle accident, was also in a persistent vegetative state and 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.

Among all individuals older than 18 years, only 26% have an advance directive.

The Cruzan case was instrumental in furthering ACP, leading to the passage of the Patient Self Determination Act (PSDA) 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,”⁵ influenced Congress in 2016 to pass legislation funding ACP conversations.

The demonstrated benefits of advance care planning

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 orders⁷ and has decreased hospitalizations,⁸ admissions to intensive care units,^7,8 and rates of cardiopulmonary resuscitation,^7,8 mechanical ventilation,^7,8 and use of tube feeding.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 psychological 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 towards 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 their families/surrogate decision maker and providers.

A snapshot of participation in advance care planning

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 years, 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 physicians 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

Physician and patient barriers to advance care planning

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 physicians 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.) Physicians 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 physicians 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

There are national models to help with implementation

The percentage of individuals with an advance directive in the United States has not increased significantly over the past decade.²² The lack of traction in completion and use of advance directives has lead 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

Explore recognized models for advance care planning, such as the Physician Orders for Life-Sustaining Treatment (POLST) paradigm and the Respecting Choices program.

National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (http://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 (http://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 (http://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 advance care planning in the outpatient setting

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 conferring a high risk of 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, "Have you ever thought about what kind of care you would want if you could not make your own decisions?"

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 advance care planning services

To encourage office-based providers to conduct ACP, 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. Both physicians and non-physician practitioners 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: https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf.

CORRESPONDENCE
John Liantonio, MD, Thomas Jefferson University Hospital, Department of Family and Community Medicine, 1015 Walnut Street, Suite 401, Philadelphia, PA 19107; [email protected]

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.

[polldaddy:9795119]

Landmark events have defined advance care planning 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 they 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 9 more months before dying in a nursing home.

A few years later, Nancy Cruzan, a 32-year-old woman involved in a 1983 motor vehicle accident, was also in a persistent vegetative state and 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.

Among all individuals older than 18 years, only 26% have an advance directive.

The Cruzan case was instrumental in furthering ACP, leading to the passage of the Patient Self Determination Act (PSDA) 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,”⁵ influenced Congress in 2016 to pass legislation funding ACP conversations.

The demonstrated benefits of advance care planning

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 orders⁷ and has decreased hospitalizations,⁸ admissions to intensive care units,^7,8 and rates of cardiopulmonary resuscitation,^7,8 mechanical ventilation,^7,8 and use of tube feeding.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 psychological 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 towards 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 their families/surrogate decision maker and providers.

A snapshot of participation in advance care planning

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 years, 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 physicians 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

Physician and patient barriers to advance care planning

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 physicians 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.) Physicians 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 physicians 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

There are national models to help with implementation

The percentage of individuals with an advance directive in the United States has not increased significantly over the past decade.²² The lack of traction in completion and use of advance directives has lead 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

Explore recognized models for advance care planning, such as the Physician Orders for Life-Sustaining Treatment (POLST) paradigm and the Respecting Choices program.

National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (http://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 (http://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 (http://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 advance care planning in the outpatient setting

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 conferring a high risk of 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, "Have you ever thought about what kind of care you would want if you could not make your own decisions?"

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 advance care planning services

To encourage office-based providers to conduct ACP, 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. Both physicians and non-physician practitioners 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: https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf.

CORRESPONDENCE
John Liantonio, MD, Thomas Jefferson University Hospital, Department of Family and Community Medicine, 1015 Walnut Street, Suite 401, Philadelphia, PA 19107; [email protected]

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.

[polldaddy:9795119]

Landmark events have defined advance care planning 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 they 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 9 more months before dying in a nursing home.

A few years later, Nancy Cruzan, a 32-year-old woman involved in a 1983 motor vehicle accident, was also in a persistent vegetative state and 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.

Among all individuals older than 18 years, only 26% have an advance directive.

The Cruzan case was instrumental in furthering ACP, leading to the passage of the Patient Self Determination Act (PSDA) 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,”⁵ influenced Congress in 2016 to pass legislation funding ACP conversations.

The demonstrated benefits of advance care planning

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 orders⁷ and has decreased hospitalizations,⁸ admissions to intensive care units,^7,8 and rates of cardiopulmonary resuscitation,^7,8 mechanical ventilation,^7,8 and use of tube feeding.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 psychological 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 towards 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 their families/surrogate decision maker and providers.

A snapshot of participation in advance care planning

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 years, 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 physicians 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

Physician and patient barriers to advance care planning

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 physicians 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.) Physicians 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 physicians 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

There are national models to help with implementation

The percentage of individuals with an advance directive in the United States has not increased significantly over the past decade.²² The lack of traction in completion and use of advance directives has lead 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

Explore recognized models for advance care planning, such as the Physician Orders for Life-Sustaining Treatment (POLST) paradigm and the Respecting Choices program.

National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (http://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 (http://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 (http://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 advance care planning in the outpatient setting

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 conferring a high risk of 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, "Have you ever thought about what kind of care you would want if you could not make your own decisions?"

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 advance care planning services

To encourage office-based providers to conduct ACP, 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. Both physicians and non-physician practitioners 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: https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf.

CORRESPONDENCE
John Liantonio, MD, Thomas Jefferson University Hospital, Department of Family and Community Medicine, 1015 Walnut Street, Suite 401, Philadelphia, PA 19107; [email protected]

After cancer treatment, a new challenge emerges as patients negotiate reentry into their everyday lives. These patients often need multifaceted, simultaneous, and ongoing help with physical, emotional, and psychological issues. And they’re often dealing with a multiplicity of health care providers.

Researchers from University of Zurich and Centres for Addiction Medicine in Zurich, Switzerland, saw similarities between these needs and those of patients with chronic medical conditions. They hypothesized that case management—like that for chronic diseases—could work for cancer survivors perhaps even better than usual care. Among other duties, case managers can assess individual needs, identify barriers, ensure coordination among care providers, and perhaps most important, promote empowering self-management skills and self-efficacy. All of which could help cancer survivors cope with the long-term consequences of cancer and improve health-related quality of life (QOL).

Related: Putting the Focus on Quality of Life in Cancer Care

The researchers designed an intervention study in which 5 oncology nurse case managers met with 95 patients at least once a month for 3 months, then conducted telephone follow-ups for 9 months. Questionnaires measured health-related QOL at 12 months via the Functional Assessment of Cancer Therapy-General (FACT-G), self-efficacy, and concordance of received care with the Patient Assessment of Chronic Illness Care (PACIC).

Although the researchers’ study did not show a significant absolute difference between the groups in FACT-G after 12 months, all scores improved in the case management group compared with the usual care group. Overall, case management clearly boosted QOL and self-efficacy and aligned health care with the chronic care model.

Related: Quality of Supportive Care for Patients With Advanced Lung Cancer in the VHA

According to the researchers, their study is the first, to their knowledge, to examine the effect of case management on the QOL of early cancer survivors. Several factors help explain the intervention’s success: (1) The case managers provided important information on long-term symptoms and available services and therapies; (2) They offered a continuity of care when treatment appointments ceased and medical follow-up visits were less frequent; and (3) They offered support to cope with the psychological issues of the reentry phase.

All in all, the researchers say their findings show case management is a practical approach to bridging a “fragmented oncological health care system” and addressing the heterogenic needs of cancer survivors.

Source:

Scherz N, Bachmann-Mettler I, Chmiel C. BMC Cancer. 2017;17(1):223.

doi: 10.1186/s12885-017-3213-9.

After cancer treatment, a new challenge emerges as patients negotiate reentry into their everyday lives. These patients often need multifaceted, simultaneous, and ongoing help with physical, emotional, and psychological issues. And they’re often dealing with a multiplicity of health care providers.

Researchers from University of Zurich and Centres for Addiction Medicine in Zurich, Switzerland, saw similarities between these needs and those of patients with chronic medical conditions. They hypothesized that case management—like that for chronic diseases—could work for cancer survivors perhaps even better than usual care. Among other duties, case managers can assess individual needs, identify barriers, ensure coordination among care providers, and perhaps most important, promote empowering self-management skills and self-efficacy. All of which could help cancer survivors cope with the long-term consequences of cancer and improve health-related quality of life (QOL).

Related: Putting the Focus on Quality of Life in Cancer Care

The researchers designed an intervention study in which 5 oncology nurse case managers met with 95 patients at least once a month for 3 months, then conducted telephone follow-ups for 9 months. Questionnaires measured health-related QOL at 12 months via the Functional Assessment of Cancer Therapy-General (FACT-G), self-efficacy, and concordance of received care with the Patient Assessment of Chronic Illness Care (PACIC).

Although the researchers’ study did not show a significant absolute difference between the groups in FACT-G after 12 months, all scores improved in the case management group compared with the usual care group. Overall, case management clearly boosted QOL and self-efficacy and aligned health care with the chronic care model.

Related: Quality of Supportive Care for Patients With Advanced Lung Cancer in the VHA

According to the researchers, their study is the first, to their knowledge, to examine the effect of case management on the QOL of early cancer survivors. Several factors help explain the intervention’s success: (1) The case managers provided important information on long-term symptoms and available services and therapies; (2) They offered a continuity of care when treatment appointments ceased and medical follow-up visits were less frequent; and (3) They offered support to cope with the psychological issues of the reentry phase.

All in all, the researchers say their findings show case management is a practical approach to bridging a “fragmented oncological health care system” and addressing the heterogenic needs of cancer survivors.

Source:

Scherz N, Bachmann-Mettler I, Chmiel C. BMC Cancer. 2017;17(1):223.

doi: 10.1186/s12885-017-3213-9.

After cancer treatment, a new challenge emerges as patients negotiate reentry into their everyday lives. These patients often need multifaceted, simultaneous, and ongoing help with physical, emotional, and psychological issues. And they’re often dealing with a multiplicity of health care providers.

Researchers from University of Zurich and Centres for Addiction Medicine in Zurich, Switzerland, saw similarities between these needs and those of patients with chronic medical conditions. They hypothesized that case management—like that for chronic diseases—could work for cancer survivors perhaps even better than usual care. Among other duties, case managers can assess individual needs, identify barriers, ensure coordination among care providers, and perhaps most important, promote empowering self-management skills and self-efficacy. All of which could help cancer survivors cope with the long-term consequences of cancer and improve health-related quality of life (QOL).

Related: Putting the Focus on Quality of Life in Cancer Care

The researchers designed an intervention study in which 5 oncology nurse case managers met with 95 patients at least once a month for 3 months, then conducted telephone follow-ups for 9 months. Questionnaires measured health-related QOL at 12 months via the Functional Assessment of Cancer Therapy-General (FACT-G), self-efficacy, and concordance of received care with the Patient Assessment of Chronic Illness Care (PACIC).

Although the researchers’ study did not show a significant absolute difference between the groups in FACT-G after 12 months, all scores improved in the case management group compared with the usual care group. Overall, case management clearly boosted QOL and self-efficacy and aligned health care with the chronic care model.

Related: Quality of Supportive Care for Patients With Advanced Lung Cancer in the VHA

According to the researchers, their study is the first, to their knowledge, to examine the effect of case management on the QOL of early cancer survivors. Several factors help explain the intervention’s success: (1) The case managers provided important information on long-term symptoms and available services and therapies; (2) They offered a continuity of care when treatment appointments ceased and medical follow-up visits were less frequent; and (3) They offered support to cope with the psychological issues of the reentry phase.

All in all, the researchers say their findings show case management is a practical approach to bridging a “fragmented oncological health care system” and addressing the heterogenic needs of cancer survivors.

Source:

Scherz N, Bachmann-Mettler I, Chmiel C. BMC Cancer. 2017;17(1):223.

doi: 10.1186/s12885-017-3213-9.

Palliative care is a well-established specialty of medicine with several decades of research to guide its implementation in a variety of contexts. Palliative care for surgical patients, however, remains understudied, according to a work group convened by the National Institutes of Health and the National Palliative Care Research Center. The work group, comprising palliative specialists from a range of medical institutions, reviewed the existing literature on palliative surgical care to identify areas in which research is needed to support palliative programs and clinicians.

Despite the 2003 call to action by the American College of Surgeons’ Palliative Care Workgroup for research in seven priority areas of palliative care (surgical, patient-oriented, and end-of-life decision making; symptom management; communications; processes of care; and surgical education on palliative care), few studies have been conducted specifically targeting surgical palliative care. The empirical basis for implementation in the surgical context remains thin, according to the work group, which argues that when it comes to palliative care – and the research to support it – the needs of surgical and nonsurgical patients differ significantly.

The report, published in the Annals of Surgery (2017 May 3. doi: 10.1097/SLA.0000000000002253), outlines an ambitious agenda of recommended research priorities in the areas of outcomes, communication, and delivery aimed at filling the gap.

Measuring outcomes

The report pointed to two areas of outcomes research that are understudied. One is defining outcomes that are meaningful to patients. Surgical research frequently defines outcomes in terms of survival, 30-day readmission, and morbidity, but patients accessing palliative surgical care may not prioritize these outcomes. “Measures of functional independence, disability-free survival, days spent at home, or freedom from pain after surgery provide information on outcomes that are both clinically meaningful and important to patients,” the study authors wrote.

In addition, measures of timely and appropriate delivery of high-quality palliative care in surgery are in scant supply for surgeons and institutions looking to identify targets for improvement. Surgeons searching for studies on effective documentation of advance directives, and quality indicators for care at the end of life, such as hospice enrollment and death on life-sustaining treatments, will find the research cupboard nearly bare.

Communication and decision making

Decision making and communication with patients, family, and surgical team members are made especially challenging by the short time frames and crisis situations in which palliative surgical care typically occurs. For many of these patients, the “trade-offs between cure and quality of life (that is, impaired functional status and prolonged pain and suffering) are typically value sensitive.” But surgeons who want to communicate information about these trade-offs “are severely hampered by the paucity of data comparing longer-term survival, quality of life, and function ... the lack of data hinders the consideration of palliative care as an adjunct or alternative to surgery,” the study authors wrote.

Surgeons have few studies and little evidence to guide them on issues such as advance care planning conversations with surrogates in the crisis-prone surgical ICU setting. Future studies are needed to develop communication tools for in-the-moment crises in which patients, surrogates, and surgeons must choose a course of action that is both clinically sound and in accordance with patient values or wishes.

Delivery of palliative care to surgical patients

The work group reviewed the scanty literature on integrating palliative care principles into routine surgical practice and concluded that much work remains to be done in this area. “Studies of physician- and systems-targeted interventions are needed to redirect treatment options so that surgery is not the default modality for patients known to have extremely poor survival due to baseline serious illness or acute surgical conditions.” Optimal timing of palliative care, patient selection, development of scalable models of palliative care in different settings, and residency training models are all understudied, according to the report. And yet, the demand for evidence and data on these issues continues to rise.

The work group concluded, “As the population ages and technical innovation advances, surgical patients will become increasingly complex as surgeons and patients navigate the blurred boundaries between technically feasible, clinically appropriate, and value-concordant care.”

The study was supported by the National Institute on Aging, a division of NIH, and the National Palliative Care Research Center. The authors report no disclosures relevant to this study.

[email protected]

Palliative care is a well-established specialty of medicine with several decades of research to guide its implementation in a variety of contexts. Palliative care for surgical patients, however, remains understudied, according to a work group convened by the National Institutes of Health and the National Palliative Care Research Center. The work group, comprising palliative specialists from a range of medical institutions, reviewed the existing literature on palliative surgical care to identify areas in which research is needed to support palliative programs and clinicians.

Despite the 2003 call to action by the American College of Surgeons’ Palliative Care Workgroup for research in seven priority areas of palliative care (surgical, patient-oriented, and end-of-life decision making; symptom management; communications; processes of care; and surgical education on palliative care), few studies have been conducted specifically targeting surgical palliative care. The empirical basis for implementation in the surgical context remains thin, according to the work group, which argues that when it comes to palliative care – and the research to support it – the needs of surgical and nonsurgical patients differ significantly.

The report, published in the Annals of Surgery (2017 May 3. doi: 10.1097/SLA.0000000000002253), outlines an ambitious agenda of recommended research priorities in the areas of outcomes, communication, and delivery aimed at filling the gap.

Measuring outcomes

The report pointed to two areas of outcomes research that are understudied. One is defining outcomes that are meaningful to patients. Surgical research frequently defines outcomes in terms of survival, 30-day readmission, and morbidity, but patients accessing palliative surgical care may not prioritize these outcomes. “Measures of functional independence, disability-free survival, days spent at home, or freedom from pain after surgery provide information on outcomes that are both clinically meaningful and important to patients,” the study authors wrote.

In addition, measures of timely and appropriate delivery of high-quality palliative care in surgery are in scant supply for surgeons and institutions looking to identify targets for improvement. Surgeons searching for studies on effective documentation of advance directives, and quality indicators for care at the end of life, such as hospice enrollment and death on life-sustaining treatments, will find the research cupboard nearly bare.

Communication and decision making

Decision making and communication with patients, family, and surgical team members are made especially challenging by the short time frames and crisis situations in which palliative surgical care typically occurs. For many of these patients, the “trade-offs between cure and quality of life (that is, impaired functional status and prolonged pain and suffering) are typically value sensitive.” But surgeons who want to communicate information about these trade-offs “are severely hampered by the paucity of data comparing longer-term survival, quality of life, and function ... the lack of data hinders the consideration of palliative care as an adjunct or alternative to surgery,” the study authors wrote.

Surgeons have few studies and little evidence to guide them on issues such as advance care planning conversations with surrogates in the crisis-prone surgical ICU setting. Future studies are needed to develop communication tools for in-the-moment crises in which patients, surrogates, and surgeons must choose a course of action that is both clinically sound and in accordance with patient values or wishes.

Delivery of palliative care to surgical patients

The work group reviewed the scanty literature on integrating palliative care principles into routine surgical practice and concluded that much work remains to be done in this area. “Studies of physician- and systems-targeted interventions are needed to redirect treatment options so that surgery is not the default modality for patients known to have extremely poor survival due to baseline serious illness or acute surgical conditions.” Optimal timing of palliative care, patient selection, development of scalable models of palliative care in different settings, and residency training models are all understudied, according to the report. And yet, the demand for evidence and data on these issues continues to rise.

The work group concluded, “As the population ages and technical innovation advances, surgical patients will become increasingly complex as surgeons and patients navigate the blurred boundaries between technically feasible, clinically appropriate, and value-concordant care.”

The study was supported by the National Institute on Aging, a division of NIH, and the National Palliative Care Research Center. The authors report no disclosures relevant to this study.

[email protected]

Palliative care is a well-established specialty of medicine with several decades of research to guide its implementation in a variety of contexts. Palliative care for surgical patients, however, remains understudied, according to a work group convened by the National Institutes of Health and the National Palliative Care Research Center. The work group, comprising palliative specialists from a range of medical institutions, reviewed the existing literature on palliative surgical care to identify areas in which research is needed to support palliative programs and clinicians.

Despite the 2003 call to action by the American College of Surgeons’ Palliative Care Workgroup for research in seven priority areas of palliative care (surgical, patient-oriented, and end-of-life decision making; symptom management; communications; processes of care; and surgical education on palliative care), few studies have been conducted specifically targeting surgical palliative care. The empirical basis for implementation in the surgical context remains thin, according to the work group, which argues that when it comes to palliative care – and the research to support it – the needs of surgical and nonsurgical patients differ significantly.

The report, published in the Annals of Surgery (2017 May 3. doi: 10.1097/SLA.0000000000002253), outlines an ambitious agenda of recommended research priorities in the areas of outcomes, communication, and delivery aimed at filling the gap.

Measuring outcomes

The report pointed to two areas of outcomes research that are understudied. One is defining outcomes that are meaningful to patients. Surgical research frequently defines outcomes in terms of survival, 30-day readmission, and morbidity, but patients accessing palliative surgical care may not prioritize these outcomes. “Measures of functional independence, disability-free survival, days spent at home, or freedom from pain after surgery provide information on outcomes that are both clinically meaningful and important to patients,” the study authors wrote.

In addition, measures of timely and appropriate delivery of high-quality palliative care in surgery are in scant supply for surgeons and institutions looking to identify targets for improvement. Surgeons searching for studies on effective documentation of advance directives, and quality indicators for care at the end of life, such as hospice enrollment and death on life-sustaining treatments, will find the research cupboard nearly bare.

Communication and decision making

Decision making and communication with patients, family, and surgical team members are made especially challenging by the short time frames and crisis situations in which palliative surgical care typically occurs. For many of these patients, the “trade-offs between cure and quality of life (that is, impaired functional status and prolonged pain and suffering) are typically value sensitive.” But surgeons who want to communicate information about these trade-offs “are severely hampered by the paucity of data comparing longer-term survival, quality of life, and function ... the lack of data hinders the consideration of palliative care as an adjunct or alternative to surgery,” the study authors wrote.

Surgeons have few studies and little evidence to guide them on issues such as advance care planning conversations with surrogates in the crisis-prone surgical ICU setting. Future studies are needed to develop communication tools for in-the-moment crises in which patients, surrogates, and surgeons must choose a course of action that is both clinically sound and in accordance with patient values or wishes.

Delivery of palliative care to surgical patients

The work group reviewed the scanty literature on integrating palliative care principles into routine surgical practice and concluded that much work remains to be done in this area. “Studies of physician- and systems-targeted interventions are needed to redirect treatment options so that surgery is not the default modality for patients known to have extremely poor survival due to baseline serious illness or acute surgical conditions.” Optimal timing of palliative care, patient selection, development of scalable models of palliative care in different settings, and residency training models are all understudied, according to the report. And yet, the demand for evidence and data on these issues continues to rise.

The work group concluded, “As the population ages and technical innovation advances, surgical patients will become increasingly complex as surgeons and patients navigate the blurred boundaries between technically feasible, clinically appropriate, and value-concordant care.”

The study was supported by the National Institute on Aging, a division of NIH, and the National Palliative Care Research Center. The authors report no disclosures relevant to this study.

[email protected]

Patients referred to palliative care are most likely to have cancer, but the proportion has gone down since 2009 as other diagnoses have increased, according to a report from the National Palliative Care Registry.

In 2015, cancer patients made up 26% of the patients referred to palliative care, compared with 35% in 2009. The situation was reversed for the next three most common diagnoses in 2015: Cardiac diagnoses rose from 5% in 2009 to 13%, pulmonary diagnoses increased from 6% to 12%, and neurologic diagnoses went from 3% to 8%, the report showed.

Referrals by specialty were led by hospital medicine, which accounted for 48% of all patients referred to palliative care in 2015, with internal medicine/family medicine next at 14%, followed by pulmonary/critical care at 13% and oncology at 7%, the report said.

An increase in overall palliative care penetration was seen from 2009 to 2015, as the percentage of annual hospital admissions seen by a palliative care team increased from 2.7% to 4.8%. Over that same time period, the percentage of palliative care patients who died in the hospital decreased from 29% to 22%, according to the report.

In 2015, there were 420 palliative care programs participating in the registry, which is a joint project of the Center to Advance Palliative Care and the National Palliative Care Research Center.

Patients referred to palliative care are most likely to have cancer, but the proportion has gone down since 2009 as other diagnoses have increased, according to a report from the National Palliative Care Registry.

In 2015, cancer patients made up 26% of the patients referred to palliative care, compared with 35% in 2009. The situation was reversed for the next three most common diagnoses in 2015: Cardiac diagnoses rose from 5% in 2009 to 13%, pulmonary diagnoses increased from 6% to 12%, and neurologic diagnoses went from 3% to 8%, the report showed.

Referrals by specialty were led by hospital medicine, which accounted for 48% of all patients referred to palliative care in 2015, with internal medicine/family medicine next at 14%, followed by pulmonary/critical care at 13% and oncology at 7%, the report said.

An increase in overall palliative care penetration was seen from 2009 to 2015, as the percentage of annual hospital admissions seen by a palliative care team increased from 2.7% to 4.8%. Over that same time period, the percentage of palliative care patients who died in the hospital decreased from 29% to 22%, according to the report.

In 2015, there were 420 palliative care programs participating in the registry, which is a joint project of the Center to Advance Palliative Care and the National Palliative Care Research Center.

Patients referred to palliative care are most likely to have cancer, but the proportion has gone down since 2009 as other diagnoses have increased, according to a report from the National Palliative Care Registry.

In 2015, cancer patients made up 26% of the patients referred to palliative care, compared with 35% in 2009. The situation was reversed for the next three most common diagnoses in 2015: Cardiac diagnoses rose from 5% in 2009 to 13%, pulmonary diagnoses increased from 6% to 12%, and neurologic diagnoses went from 3% to 8%, the report showed.

Referrals by specialty were led by hospital medicine, which accounted for 48% of all patients referred to palliative care in 2015, with internal medicine/family medicine next at 14%, followed by pulmonary/critical care at 13% and oncology at 7%, the report said.

An increase in overall palliative care penetration was seen from 2009 to 2015, as the percentage of annual hospital admissions seen by a palliative care team increased from 2.7% to 4.8%. Over that same time period, the percentage of palliative care patients who died in the hospital decreased from 29% to 22%, according to the report.

In 2015, there were 420 palliative care programs participating in the registry, which is a joint project of the Center to Advance Palliative Care and the National Palliative Care Research Center.