Gina Kang, MD

Palliative care has been shown to improve quality of life, receipt of goal-concordant care, end-of-life decision-making, and improvement in pain and symptoms in individuals with serious illness. However, palliative and end-of-life care remain underutilized in racial and ethnic minorities.¹ Health disparities such as access, quality of care, and health outcomes among minority groups exist in delivery and receipt of care within the health care system, and this includes the care of individuals with serious illness and at the end of life.¹

Racial and ethnic minorities are less likely to receive goal-concordant care, participate in advance care planning, and have access to palliative care or hospice.^2-4 They are more likely to die in a hospital, have inadequate pain and symptom management, and experience poor provider-patient communication.^5-7 Other contributing factors include lack of knowledge of hospice and palliative care services, mistrust of the health care system, spiritual and religious beliefs, provider bias, and cultural beliefs.¹

Kang_Gina_Seattle_web.jpg

Despite these disparities, interventions have had limited success,⁸ and there are gaps in content, methods, and inclusion of racial and ethnic groups within palliative care research.⁷

Efforts to improve health equity for people with serious illness have been identified as an “urgent call to action.”¹

A few recommended actionable items include delivering culturally competent care by ensuring availability of culturally and linguistically appropriate materials and information, education, and training for providers, and practicing cultural humility; contributing to workforce diversity by hiring and training diverse staff; and partnering with community organizations to build trust and to facilitate dissemination of culturally and linguistically appropriate information to providers in caring for their diverse patient populations.^1,9

One of the first steps identified is to recognize that there is a problem and prioritize efforts to understand its “multifaceted nature.”¹⁰ This should occur on multiple levels including the individual (patient and caregiver), interpersonal (health care team), organization, and policy levels,¹⁰ and be done through clinical, research, and educational platforms.

At the interpersonal level, we as the health care team can start by reflecting, acknowledging biases, seeking educational and training opportunities on cross-cultural interactions, learning about cultural and spiritual beliefs, and developing skills in culturally and linguistically appropriate communication regarding goals of care and advance care planning.^1,10

For those seeking resources, organizations such as the Center to Advance Palliative Care’s Project Equity and the American Academy of Hospice and Palliative Medicine have ongoing efforts to educate and train physicians and health care professionals to improve and understand health equity in palliative care by providing resource portals, toolkits, training, and general information.

It is imperative to move forward in actionable ways to address not only racial and ethnic disparities, but advance equity in serious illness care for health care organizations, providers, and policymakers.¹

Dr. Kang is in the division of gerontology and geriatric medicine at the University of Washington, Seattle.

References

1. Barrett NJ et al. N C Med J. 2020;81:254-6.

2. Johnson KS et al. J Am Geriatr Soc. 2011;59:732-7.

3. Sharma RK et al. J Clin Oncol. 2015;33:3802-8.

4. Muni S et al. Chest. 2011;139:1025-33.

5. Anderson KO et al. J Pain. 2009;10:1187-204.

6. Mack JW et al. Arch Intern Med. 2010;170:1533-40.

7. Johnson KS. J Palliat Med. 2013;16(11):1329-34.

8. Brown CE et al. J Pain Symptom Manage. 2021;63(5):e465-e71.

9. Chambers B. Center for Advancing Palliative Care. July 9, 2020.

10. Koffman J et al. BMC Palliat Care. 2023;22(64):1-3.

Palliative care has been shown to improve quality of life, receipt of goal-concordant care, end-of-life decision-making, and improvement in pain and symptoms in individuals with serious illness. However, palliative and end-of-life care remain underutilized in racial and ethnic minorities.¹ Health disparities such as access, quality of care, and health outcomes among minority groups exist in delivery and receipt of care within the health care system, and this includes the care of individuals with serious illness and at the end of life.¹

Racial and ethnic minorities are less likely to receive goal-concordant care, participate in advance care planning, and have access to palliative care or hospice.^2-4 They are more likely to die in a hospital, have inadequate pain and symptom management, and experience poor provider-patient communication.^5-7 Other contributing factors include lack of knowledge of hospice and palliative care services, mistrust of the health care system, spiritual and religious beliefs, provider bias, and cultural beliefs.¹

Kang_Gina_Seattle_web.jpg

Despite these disparities, interventions have had limited success,⁸ and there are gaps in content, methods, and inclusion of racial and ethnic groups within palliative care research.⁷

Efforts to improve health equity for people with serious illness have been identified as an “urgent call to action.”¹

A few recommended actionable items include delivering culturally competent care by ensuring availability of culturally and linguistically appropriate materials and information, education, and training for providers, and practicing cultural humility; contributing to workforce diversity by hiring and training diverse staff; and partnering with community organizations to build trust and to facilitate dissemination of culturally and linguistically appropriate information to providers in caring for their diverse patient populations.^1,9

One of the first steps identified is to recognize that there is a problem and prioritize efforts to understand its “multifaceted nature.”¹⁰ This should occur on multiple levels including the individual (patient and caregiver), interpersonal (health care team), organization, and policy levels,¹⁰ and be done through clinical, research, and educational platforms.

At the interpersonal level, we as the health care team can start by reflecting, acknowledging biases, seeking educational and training opportunities on cross-cultural interactions, learning about cultural and spiritual beliefs, and developing skills in culturally and linguistically appropriate communication regarding goals of care and advance care planning.^1,10

For those seeking resources, organizations such as the Center to Advance Palliative Care’s Project Equity and the American Academy of Hospice and Palliative Medicine have ongoing efforts to educate and train physicians and health care professionals to improve and understand health equity in palliative care by providing resource portals, toolkits, training, and general information.

It is imperative to move forward in actionable ways to address not only racial and ethnic disparities, but advance equity in serious illness care for health care organizations, providers, and policymakers.¹

Dr. Kang is in the division of gerontology and geriatric medicine at the University of Washington, Seattle.

References

1. Barrett NJ et al. N C Med J. 2020;81:254-6.

2. Johnson KS et al. J Am Geriatr Soc. 2011;59:732-7.

3. Sharma RK et al. J Clin Oncol. 2015;33:3802-8.

4. Muni S et al. Chest. 2011;139:1025-33.

5. Anderson KO et al. J Pain. 2009;10:1187-204.

6. Mack JW et al. Arch Intern Med. 2010;170:1533-40.

7. Johnson KS. J Palliat Med. 2013;16(11):1329-34.

8. Brown CE et al. J Pain Symptom Manage. 2021;63(5):e465-e71.

9. Chambers B. Center for Advancing Palliative Care. July 9, 2020.

10. Koffman J et al. BMC Palliat Care. 2023;22(64):1-3.

Palliative care has been shown to improve quality of life, receipt of goal-concordant care, end-of-life decision-making, and improvement in pain and symptoms in individuals with serious illness. However, palliative and end-of-life care remain underutilized in racial and ethnic minorities.¹ Health disparities such as access, quality of care, and health outcomes among minority groups exist in delivery and receipt of care within the health care system, and this includes the care of individuals with serious illness and at the end of life.¹

Racial and ethnic minorities are less likely to receive goal-concordant care, participate in advance care planning, and have access to palliative care or hospice.^2-4 They are more likely to die in a hospital, have inadequate pain and symptom management, and experience poor provider-patient communication.^5-7 Other contributing factors include lack of knowledge of hospice and palliative care services, mistrust of the health care system, spiritual and religious beliefs, provider bias, and cultural beliefs.¹

Kang_Gina_Seattle_web.jpg

Despite these disparities, interventions have had limited success,⁸ and there are gaps in content, methods, and inclusion of racial and ethnic groups within palliative care research.⁷

Efforts to improve health equity for people with serious illness have been identified as an “urgent call to action.”¹

A few recommended actionable items include delivering culturally competent care by ensuring availability of culturally and linguistically appropriate materials and information, education, and training for providers, and practicing cultural humility; contributing to workforce diversity by hiring and training diverse staff; and partnering with community organizations to build trust and to facilitate dissemination of culturally and linguistically appropriate information to providers in caring for their diverse patient populations.^1,9

One of the first steps identified is to recognize that there is a problem and prioritize efforts to understand its “multifaceted nature.”¹⁰ This should occur on multiple levels including the individual (patient and caregiver), interpersonal (health care team), organization, and policy levels,¹⁰ and be done through clinical, research, and educational platforms.

At the interpersonal level, we as the health care team can start by reflecting, acknowledging biases, seeking educational and training opportunities on cross-cultural interactions, learning about cultural and spiritual beliefs, and developing skills in culturally and linguistically appropriate communication regarding goals of care and advance care planning.^1,10

For those seeking resources, organizations such as the Center to Advance Palliative Care’s Project Equity and the American Academy of Hospice and Palliative Medicine have ongoing efforts to educate and train physicians and health care professionals to improve and understand health equity in palliative care by providing resource portals, toolkits, training, and general information.

It is imperative to move forward in actionable ways to address not only racial and ethnic disparities, but advance equity in serious illness care for health care organizations, providers, and policymakers.¹

Dr. Kang is in the division of gerontology and geriatric medicine at the University of Washington, Seattle.

References

1. Barrett NJ et al. N C Med J. 2020;81:254-6.

2. Johnson KS et al. J Am Geriatr Soc. 2011;59:732-7.

3. Sharma RK et al. J Clin Oncol. 2015;33:3802-8.

4. Muni S et al. Chest. 2011;139:1025-33.

5. Anderson KO et al. J Pain. 2009;10:1187-204.

6. Mack JW et al. Arch Intern Med. 2010;170:1533-40.

7. Johnson KS. J Palliat Med. 2013;16(11):1329-34.

8. Brown CE et al. J Pain Symptom Manage. 2021;63(5):e465-e71.

9. Chambers B. Center for Advancing Palliative Care. July 9, 2020.

10. Koffman J et al. BMC Palliat Care. 2023;22(64):1-3.

As we enter into this new year, it is a good time to review the past few years of living through a pandemic and the impact this has had on the field of palliative care.

Kang_Gina_Seattle_web.jpg

The health care system as a whole as well as palliative care teams, have been challenged by the ongoing COVID-19 pandemic.

According to the World Health Organization, “Palliative care is an approach that improves the quality of life of patients and their families who are facing the problems associated with life-threatening illness, by the prevention and relief of suffering through early identification, assessment and treatment of pain and other problems whether physical, psychosocial and spiritual.”¹ They identify a global need and recognize palliative care as a “human right to health and as a standard of care particularly for individuals living with a serious illness.¹ However, the WHO goes further to recognize palliative care as an essential part of the response team during crises and health emergencies like a pandemic, noting that a response team without palliative care is “medically deficient and ethically indefensible.”²

The need for palliative care in the United States is projected to grow significantly in the next decades.³ However, there has been insufficient staffing to meet these needs, even prior to the pandemic.⁴ The demand for palliative care reached further unprecedented levels during the pandemic as palliative care teams played an integral role and were well situated to support not only patients and families with COVID-19,⁵ but to also support the well-being of health care teams caring for COVID-19 patients.^6,7

A recent survey that was conducted by the Center to Advance Palliative Care among palliative care leadership captured the experiences of leading their teams through a pandemic. Below are the results of this survey, which highlighted important issues and developments to palliative care during the pandemic.⁶
 

Increasing need for palliative care

One of the main findings from the national survey of palliative care leaders corroborated that the demands for palliative care have increased significantly from 2020 through the pandemic.

As with many areas in the health care system, the pandemic has emphasized the strain and short staffing of the palliative care teams. In the survey, 61% of leaders reported that palliative care consults significantly increased from prepandemic levels. But only 26% of these leaders said they had the staffing support to meet these needs.
 

Value of palliative care

The value of palliative care along with understanding of the role of palliative care has been better recognized during the pandemic and has been evidenced by the increase in palliative care referrals from clinical providers, compared with prepandemic levels. In addition, data collected showed that earlier palliative care consultations reduced length of hospital stay, decreased ICU admissions, and improved patient, family, and provider satisfaction.

Well-being of the workforce

The pandemic has been a tremendously stressful time for the health care workforce that has undoubtedly led to burnout. A nationwide study of physicians,⁸ found that 61% of physicians experienced burnout. This is a significant increase from prepandemic levels with impacts on mental health (that is, anxiety, depression). This study did not include palliative care specialists, but the CAPC survey indicates a similar feeling of burnout. Because of this, some palliative care specialists have left the field altogether, or are leaving leadership positions because of burnout and exhaustion from the pandemic. This was featured as a concern among palliative care leaders, where 93% reported concern for the emotional well-being of the palliative care team.

Telehealth

A permanent operational change that has been well-utilized and implemented across multiple health care settings has been providing palliative care through telehealth. Prior to the pandemic, the baseline use of telehealth was less than 5% with the use now greater than 75% – a modality that is favored by both patients and clinicians. This has offered a broader scope of practice, reaching individuals who may have no other means, have limitations to accessing palliative care, or were in circumstances where patients required isolation during the pandemic. However, there are limitations to this platform, including in equity of access to devices and ease of use for those with limited exposure to technology.⁹

Barriers to implementation

Although the important role and value of palliative care has been well recognized, there have been barriers identified in a qualitative study of the integration of palliative care into COVID-19 action plans that are mentioned below.⁵

• Patients and families were identified as barriers to integration of palliative care if they were not open to palliative care referral, mainly because of misperceptions of palliative care as end-of-life care.
• Palliative care knowledge among providers was identified as another barrier to integration of palliative care. There are still misperceptions among providers that palliative care is end-of-life care and palliative care involvement is stigmatized as hastening death. In addition, some felt that COVID-19 was not a traditional “palliative diagnosis” thus were less likely to integrate palliative care into care plans.
• Lack of availability of a primary provider to conduct primary palliative care and lack of motivation “not to give up” were identified as other barriers. On the other hand, palliative care provider availability and accessibility to care teams affected the integration into COVID-19 care plans.
• COVID-19 itself was identified to be a barrier because of the uncertainty of illness trajectory and outcomes, which made it difficult for doctors to ascertain when to involve palliative care.
• Leadership and institution were important factors to consider in integration of palliative care into long-term care plans, which depended on leadership engagement and institutional culture.

Takeaways

The past few years have taught us a lot, but there is still much to learn. The COVID-19 pandemic has called attention to the challenges and barriers of health care delivery and has magnified the needs of the health care system including its infrastructure, preparedness, and staffing, including the field of palliative care. More work needs to be done, but leaders have taken steps to initiate national and international preparedness plans including the integration of palliative care, which has been identified as a vital role in any humanitarian crises.^10,11

Dr. Kang is a geriatrician and palliative care provider at the University of Washington, Seattle, in the division of geriatrics and gerontology. She has no conflicts related to the content of this article.

References

1. Palliative care. World Health Organization. Aug 5, 2020. https://www.who.int/news-room/fact-sheets/detail/palliative-care

2. World Health Organization. Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises: A WHO guide. Geneva: World Health Organization, 2018. https://apps.who.int/iris/handle/10665/274565.

3. Hughes MT, Smith TJ. The growth of palliative care in the United States. Annual Review Public Health. 2014;35:459-75.

4. Pastrana T et al. The impact of COVID-19 on palliative care workers across the world: A qualitative analysis of responses to open-ended questions. Palliative and Supportive Care. 2021:1-6.

5. Wentlandt K et al. Identifying barriers and facilitators to palliative care integration in the management of hospitalized patients with COVID-19: A qualitative study. Palliat Med. 2022;36(6):945-54.

6. Rogers M et al. Palliative care leadership during the pandemic: Results from a recent survey. Center to Advance Palliative Care. 2022 Sept 8. https://www.capc.org/blog/palliative-care-leadership-during-the-pandemic-results-from-a-recent-survey

7. Fogelman P. Reflections form a palliative care program leader two years into the pandemic. Center to Advance Palliative Care. 2023 Jan 15. https://www.capc.org/blog/reflections-from-a-palliative-care-program-leader-two-years-into-the-pandemic

8. 2021 survey of America’s physicians Covid-19 impact edition: A year later. The Physicians Foundation. 2021.

9. Caraceni A et al. Telemedicine for outpatient palliative care during Covid-19 pandemics: A longitudinal study. BMJ Supportive & Palliative Care. 2022;0:1-7.

10. Bausewein C et al. National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany – study protocol of a mixed-methods project. BMC Palliative Care. 2022;21(10).

11. Powell RA et al. Palliative care in humanitarian crises: Always something to offer. The Lancet. 2017;389(10078):1498-9.

As we enter into this new year, it is a good time to review the past few years of living through a pandemic and the impact this has had on the field of palliative care.

Kang_Gina_Seattle_web.jpg

The health care system as a whole as well as palliative care teams, have been challenged by the ongoing COVID-19 pandemic.

According to the World Health Organization, “Palliative care is an approach that improves the quality of life of patients and their families who are facing the problems associated with life-threatening illness, by the prevention and relief of suffering through early identification, assessment and treatment of pain and other problems whether physical, psychosocial and spiritual.”¹ They identify a global need and recognize palliative care as a “human right to health and as a standard of care particularly for individuals living with a serious illness.¹ However, the WHO goes further to recognize palliative care as an essential part of the response team during crises and health emergencies like a pandemic, noting that a response team without palliative care is “medically deficient and ethically indefensible.”²

The need for palliative care in the United States is projected to grow significantly in the next decades.³ However, there has been insufficient staffing to meet these needs, even prior to the pandemic.⁴ The demand for palliative care reached further unprecedented levels during the pandemic as palliative care teams played an integral role and were well situated to support not only patients and families with COVID-19,⁵ but to also support the well-being of health care teams caring for COVID-19 patients.^6,7

A recent survey that was conducted by the Center to Advance Palliative Care among palliative care leadership captured the experiences of leading their teams through a pandemic. Below are the results of this survey, which highlighted important issues and developments to palliative care during the pandemic.⁶
 

Increasing need for palliative care

One of the main findings from the national survey of palliative care leaders corroborated that the demands for palliative care have increased significantly from 2020 through the pandemic.

As with many areas in the health care system, the pandemic has emphasized the strain and short staffing of the palliative care teams. In the survey, 61% of leaders reported that palliative care consults significantly increased from prepandemic levels. But only 26% of these leaders said they had the staffing support to meet these needs.
 

Value of palliative care

The value of palliative care along with understanding of the role of palliative care has been better recognized during the pandemic and has been evidenced by the increase in palliative care referrals from clinical providers, compared with prepandemic levels. In addition, data collected showed that earlier palliative care consultations reduced length of hospital stay, decreased ICU admissions, and improved patient, family, and provider satisfaction.

Well-being of the workforce

The pandemic has been a tremendously stressful time for the health care workforce that has undoubtedly led to burnout. A nationwide study of physicians,⁸ found that 61% of physicians experienced burnout. This is a significant increase from prepandemic levels with impacts on mental health (that is, anxiety, depression). This study did not include palliative care specialists, but the CAPC survey indicates a similar feeling of burnout. Because of this, some palliative care specialists have left the field altogether, or are leaving leadership positions because of burnout and exhaustion from the pandemic. This was featured as a concern among palliative care leaders, where 93% reported concern for the emotional well-being of the palliative care team.

Telehealth

A permanent operational change that has been well-utilized and implemented across multiple health care settings has been providing palliative care through telehealth. Prior to the pandemic, the baseline use of telehealth was less than 5% with the use now greater than 75% – a modality that is favored by both patients and clinicians. This has offered a broader scope of practice, reaching individuals who may have no other means, have limitations to accessing palliative care, or were in circumstances where patients required isolation during the pandemic. However, there are limitations to this platform, including in equity of access to devices and ease of use for those with limited exposure to technology.⁹

Barriers to implementation

Although the important role and value of palliative care has been well recognized, there have been barriers identified in a qualitative study of the integration of palliative care into COVID-19 action plans that are mentioned below.⁵

• Patients and families were identified as barriers to integration of palliative care if they were not open to palliative care referral, mainly because of misperceptions of palliative care as end-of-life care.
• Palliative care knowledge among providers was identified as another barrier to integration of palliative care. There are still misperceptions among providers that palliative care is end-of-life care and palliative care involvement is stigmatized as hastening death. In addition, some felt that COVID-19 was not a traditional “palliative diagnosis” thus were less likely to integrate palliative care into care plans.
• Lack of availability of a primary provider to conduct primary palliative care and lack of motivation “not to give up” were identified as other barriers. On the other hand, palliative care provider availability and accessibility to care teams affected the integration into COVID-19 care plans.
• COVID-19 itself was identified to be a barrier because of the uncertainty of illness trajectory and outcomes, which made it difficult for doctors to ascertain when to involve palliative care.
• Leadership and institution were important factors to consider in integration of palliative care into long-term care plans, which depended on leadership engagement and institutional culture.

Takeaways

The past few years have taught us a lot, but there is still much to learn. The COVID-19 pandemic has called attention to the challenges and barriers of health care delivery and has magnified the needs of the health care system including its infrastructure, preparedness, and staffing, including the field of palliative care. More work needs to be done, but leaders have taken steps to initiate national and international preparedness plans including the integration of palliative care, which has been identified as a vital role in any humanitarian crises.^10,11

Dr. Kang is a geriatrician and palliative care provider at the University of Washington, Seattle, in the division of geriatrics and gerontology. She has no conflicts related to the content of this article.

References

1. Palliative care. World Health Organization. Aug 5, 2020. https://www.who.int/news-room/fact-sheets/detail/palliative-care

2. World Health Organization. Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises: A WHO guide. Geneva: World Health Organization, 2018. https://apps.who.int/iris/handle/10665/274565.

3. Hughes MT, Smith TJ. The growth of palliative care in the United States. Annual Review Public Health. 2014;35:459-75.

4. Pastrana T et al. The impact of COVID-19 on palliative care workers across the world: A qualitative analysis of responses to open-ended questions. Palliative and Supportive Care. 2021:1-6.

5. Wentlandt K et al. Identifying barriers and facilitators to palliative care integration in the management of hospitalized patients with COVID-19: A qualitative study. Palliat Med. 2022;36(6):945-54.

6. Rogers M et al. Palliative care leadership during the pandemic: Results from a recent survey. Center to Advance Palliative Care. 2022 Sept 8. https://www.capc.org/blog/palliative-care-leadership-during-the-pandemic-results-from-a-recent-survey

7. Fogelman P. Reflections form a palliative care program leader two years into the pandemic. Center to Advance Palliative Care. 2023 Jan 15. https://www.capc.org/blog/reflections-from-a-palliative-care-program-leader-two-years-into-the-pandemic

8. 2021 survey of America’s physicians Covid-19 impact edition: A year later. The Physicians Foundation. 2021.

9. Caraceni A et al. Telemedicine for outpatient palliative care during Covid-19 pandemics: A longitudinal study. BMJ Supportive & Palliative Care. 2022;0:1-7.

10. Bausewein C et al. National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany – study protocol of a mixed-methods project. BMC Palliative Care. 2022;21(10).

11. Powell RA et al. Palliative care in humanitarian crises: Always something to offer. The Lancet. 2017;389(10078):1498-9.

As we enter into this new year, it is a good time to review the past few years of living through a pandemic and the impact this has had on the field of palliative care.

Kang_Gina_Seattle_web.jpg

The health care system as a whole as well as palliative care teams, have been challenged by the ongoing COVID-19 pandemic.

According to the World Health Organization, “Palliative care is an approach that improves the quality of life of patients and their families who are facing the problems associated with life-threatening illness, by the prevention and relief of suffering through early identification, assessment and treatment of pain and other problems whether physical, psychosocial and spiritual.”¹ They identify a global need and recognize palliative care as a “human right to health and as a standard of care particularly for individuals living with a serious illness.¹ However, the WHO goes further to recognize palliative care as an essential part of the response team during crises and health emergencies like a pandemic, noting that a response team without palliative care is “medically deficient and ethically indefensible.”²

The need for palliative care in the United States is projected to grow significantly in the next decades.³ However, there has been insufficient staffing to meet these needs, even prior to the pandemic.⁴ The demand for palliative care reached further unprecedented levels during the pandemic as palliative care teams played an integral role and were well situated to support not only patients and families with COVID-19,⁵ but to also support the well-being of health care teams caring for COVID-19 patients.^6,7

A recent survey that was conducted by the Center to Advance Palliative Care among palliative care leadership captured the experiences of leading their teams through a pandemic. Below are the results of this survey, which highlighted important issues and developments to palliative care during the pandemic.⁶
 

Increasing need for palliative care

One of the main findings from the national survey of palliative care leaders corroborated that the demands for palliative care have increased significantly from 2020 through the pandemic.

As with many areas in the health care system, the pandemic has emphasized the strain and short staffing of the palliative care teams. In the survey, 61% of leaders reported that palliative care consults significantly increased from prepandemic levels. But only 26% of these leaders said they had the staffing support to meet these needs.
 

Value of palliative care

The value of palliative care along with understanding of the role of palliative care has been better recognized during the pandemic and has been evidenced by the increase in palliative care referrals from clinical providers, compared with prepandemic levels. In addition, data collected showed that earlier palliative care consultations reduced length of hospital stay, decreased ICU admissions, and improved patient, family, and provider satisfaction.

Well-being of the workforce

The pandemic has been a tremendously stressful time for the health care workforce that has undoubtedly led to burnout. A nationwide study of physicians,⁸ found that 61% of physicians experienced burnout. This is a significant increase from prepandemic levels with impacts on mental health (that is, anxiety, depression). This study did not include palliative care specialists, but the CAPC survey indicates a similar feeling of burnout. Because of this, some palliative care specialists have left the field altogether, or are leaving leadership positions because of burnout and exhaustion from the pandemic. This was featured as a concern among palliative care leaders, where 93% reported concern for the emotional well-being of the palliative care team.

Telehealth

A permanent operational change that has been well-utilized and implemented across multiple health care settings has been providing palliative care through telehealth. Prior to the pandemic, the baseline use of telehealth was less than 5% with the use now greater than 75% – a modality that is favored by both patients and clinicians. This has offered a broader scope of practice, reaching individuals who may have no other means, have limitations to accessing palliative care, or were in circumstances where patients required isolation during the pandemic. However, there are limitations to this platform, including in equity of access to devices and ease of use for those with limited exposure to technology.⁹

Barriers to implementation

Although the important role and value of palliative care has been well recognized, there have been barriers identified in a qualitative study of the integration of palliative care into COVID-19 action plans that are mentioned below.⁵

• Patients and families were identified as barriers to integration of palliative care if they were not open to palliative care referral, mainly because of misperceptions of palliative care as end-of-life care.
• Palliative care knowledge among providers was identified as another barrier to integration of palliative care. There are still misperceptions among providers that palliative care is end-of-life care and palliative care involvement is stigmatized as hastening death. In addition, some felt that COVID-19 was not a traditional “palliative diagnosis” thus were less likely to integrate palliative care into care plans.
• Lack of availability of a primary provider to conduct primary palliative care and lack of motivation “not to give up” were identified as other barriers. On the other hand, palliative care provider availability and accessibility to care teams affected the integration into COVID-19 care plans.
• COVID-19 itself was identified to be a barrier because of the uncertainty of illness trajectory and outcomes, which made it difficult for doctors to ascertain when to involve palliative care.
• Leadership and institution were important factors to consider in integration of palliative care into long-term care plans, which depended on leadership engagement and institutional culture.

Takeaways

The past few years have taught us a lot, but there is still much to learn. The COVID-19 pandemic has called attention to the challenges and barriers of health care delivery and has magnified the needs of the health care system including its infrastructure, preparedness, and staffing, including the field of palliative care. More work needs to be done, but leaders have taken steps to initiate national and international preparedness plans including the integration of palliative care, which has been identified as a vital role in any humanitarian crises.^10,11

Dr. Kang is a geriatrician and palliative care provider at the University of Washington, Seattle, in the division of geriatrics and gerontology. She has no conflicts related to the content of this article.

References

1. Palliative care. World Health Organization. Aug 5, 2020. https://www.who.int/news-room/fact-sheets/detail/palliative-care

2. World Health Organization. Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises: A WHO guide. Geneva: World Health Organization, 2018. https://apps.who.int/iris/handle/10665/274565.

3. Hughes MT, Smith TJ. The growth of palliative care in the United States. Annual Review Public Health. 2014;35:459-75.

4. Pastrana T et al. The impact of COVID-19 on palliative care workers across the world: A qualitative analysis of responses to open-ended questions. Palliative and Supportive Care. 2021:1-6.

5. Wentlandt K et al. Identifying barriers and facilitators to palliative care integration in the management of hospitalized patients with COVID-19: A qualitative study. Palliat Med. 2022;36(6):945-54.

6. Rogers M et al. Palliative care leadership during the pandemic: Results from a recent survey. Center to Advance Palliative Care. 2022 Sept 8. https://www.capc.org/blog/palliative-care-leadership-during-the-pandemic-results-from-a-recent-survey

7. Fogelman P. Reflections form a palliative care program leader two years into the pandemic. Center to Advance Palliative Care. 2023 Jan 15. https://www.capc.org/blog/reflections-from-a-palliative-care-program-leader-two-years-into-the-pandemic

8. 2021 survey of America’s physicians Covid-19 impact edition: A year later. The Physicians Foundation. 2021.

9. Caraceni A et al. Telemedicine for outpatient palliative care during Covid-19 pandemics: A longitudinal study. BMJ Supportive & Palliative Care. 2022;0:1-7.

10. Bausewein C et al. National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany – study protocol of a mixed-methods project. BMC Palliative Care. 2022;21(10).

11. Powell RA et al. Palliative care in humanitarian crises: Always something to offer. The Lancet. 2017;389(10078):1498-9.

There are still misperceptions of palliative medicine, including when to consider referral to a palliative care specialist.

The World Health Organization defines palliative care as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial or spiritual.”¹

Kang_Gina_Seattle_web.jpg

The common misperception is that palliative care is only for those at end of life or only in the advanced stages of their illness. However, palliative care is ideally most helpful following individuals from diagnosis through their illness trajectory. Another misperception is that palliative care and hospice are the same thing. Though all hospice is palliative care, all palliative care is not hospice. Both palliative care and hospice provide care for individuals facing a serious illness and focus on the same philosophy of care, but palliative care can be initiated at any stage of illness, even if the goal is to pursue curative and life-prolonging therapies/interventions.

In contrast, hospice is considered for those who are at the end of life and are usually not pursuing life-prolonging therapies or interventions, instead focusing on comfort, symptom management, and optimization of quality of life.

Though there is a growing need for palliative care, there is a shortage of specialist palliative care providers. Much of the palliative care needs can be met by all providers who can offer basic symptom management, identification surrounding goals of care and discussions of advance care planning, and understanding of illness/prognosis and treatment options, which is called primary palliative care.² In fact, two-thirds of patients with a serious illness other than cancer prefer discussion of end-of-life care or advance care planning with their primary care providers.³

Referral to specialty palliative care should be considered when there are more complexities to symptom/pain management and goals of care/end of life, transition to hospice, or complex communication dynamics.⁴

Though specialty palliative care was shown to be more comprehensive, both primary palliative care and specialty palliative care have led to improvements in the quality of life in individuals living with serious illness.⁵ Early integration of palliative care into routine care has been shown to improve symptom burden, mood, quality of life, survival, and health care costs.⁶

Updates in alternative and complementary therapies to palliative care

There are several alternative and complementary therapies to palliative care, including cannabis and psychedelics. These therapies are becoming or may become a familiar part of medical therapies that are listed in a patient’s history as part of their medical regimen, especially as more states continue to legalize and/or decriminalize the use of these alternative therapies for recreational or medicinal use.

Both cannabis and psychedelics have a longstanding history of therapeutic and holistic use. Cannabis has been used to manage symptoms such as pain since the 16th and 17th century.⁷ In palliative care, more patients may turn to various forms of cannabis as a source of relief from symptoms and suffering as their focus shifts more to quality of life.

Even with the increasing popularity of the use of cannabis among seriously ill patients, there is still a lack of evidence of the benefits of medical cannabis use in palliative care, and there is a lack of standardization of type of cannabis used and state regulations regarding their use.⁷

A recent systematic review found that despite the reported positive treatment effects of cannabis in palliative care, the results of the studies were conflicting. This highlights the need for further high-quality research to determine whether cannabis products are an effective treatment in palliative care patients.⁸

One limitation to note is that the majority of the included studies focused on cannabis use in patients with cancer for cancer-related symptoms. Few studies included patients with other serious conditions.
 

Psychedelics

There is evidence that psychedelic assisted therapy (PAT) is a safe and effective treatment for individuals with refractory depression, posttraumatic stress disorder, and substance use disorder.⁹ Plus, there have been ample studies providing support that PAT improves symptoms such as refractory anxiety/depression, demoralization, and existential distress in seriously ill patients, thus improving their quality of life and overall well-being.⁹

Nine U.S. cities and the State of Oregon have decriminalized or legalized the psychedelic psilocybin, based on the medical benefits patients have experienced evidenced from using it.¹⁰

In light of the increasing interest in PAT, Dr. Ira Byock provided the following points on what “all clinicians should know as they enter this uncharted territory”:

• Psychedelics have been around for a long time.
• Psychedelic-assisted therapies’ therapeutic effects are experiential.
• There are a variety of terms for specific categories of psychedelic compounds.
• Some palliative care teams are already caring for patients who undergo psychedelic experiences.
• Use of psychedelics should be well-observed by a skilled clinician with expertise.

I am hoping this provides a general refresher on palliative care and an overview of updates to alternative and complementary therapies for patients living with serious illness.⁹

Dr. Kang is a geriatrician and palliative care provider at the University of Washington, Seattle in the division of geriatrics and gerontology. She has no conflicts related to the content of this piece.

References

1. World Health Organization. Palliative care. 2020 Aug 5..

2. Weissman DE and Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting a consensus report from the center to advance palliative care. J Palliat Med. 2011;14(1):17-23.

3. Sherry D et al. Is primary care physician involvement associated with earlier advance care planning? A study of patients in an academic primary care setting. J Palliat Med. 2022;25(1):75-80.

4. Quill TE and Abernethy AP. Generalist plus specialist palliative care-creating a more sustainable model. N Engl J Med. 2013;368:1173-75.

5. Ernecoff NC et al. Comparing specialty and primary palliative care interventions: Analysis of a systematic review. J Palliat Med. 2020;23(3):389-96.

6. Temmel JS et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2011;363:733-42.

7. Kogan M and Sexton M. Medical cannabis: A new old tool for palliative care. J Altern Complement Med . 2020 Sep;26(9):776-8.

8. Doppen M et al. Cannabis in palliative care: A systematic review of the current evidence. J Pain Symptom Manage. 2022 Jun 12;S0885-3924(22)00760-6.

9. Byock I. Psychedelics for serious illness: Five things clinicians need to know. The Center to Advance Palliative Care. Psychedelics for Serious Illness, Palliative in Practice, Center to Advance Palliative Care (capc.org). June 13, 2022.

10. Marks M. A strategy for rescheduling psilocybin. Scientific American. Oct. 11, 2021.

There are still misperceptions of palliative medicine, including when to consider referral to a palliative care specialist.

The World Health Organization defines palliative care as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial or spiritual.”¹

Kang_Gina_Seattle_web.jpg

The common misperception is that palliative care is only for those at end of life or only in the advanced stages of their illness. However, palliative care is ideally most helpful following individuals from diagnosis through their illness trajectory. Another misperception is that palliative care and hospice are the same thing. Though all hospice is palliative care, all palliative care is not hospice. Both palliative care and hospice provide care for individuals facing a serious illness and focus on the same philosophy of care, but palliative care can be initiated at any stage of illness, even if the goal is to pursue curative and life-prolonging therapies/interventions.

In contrast, hospice is considered for those who are at the end of life and are usually not pursuing life-prolonging therapies or interventions, instead focusing on comfort, symptom management, and optimization of quality of life.

Though there is a growing need for palliative care, there is a shortage of specialist palliative care providers. Much of the palliative care needs can be met by all providers who can offer basic symptom management, identification surrounding goals of care and discussions of advance care planning, and understanding of illness/prognosis and treatment options, which is called primary palliative care.² In fact, two-thirds of patients with a serious illness other than cancer prefer discussion of end-of-life care or advance care planning with their primary care providers.³

Referral to specialty palliative care should be considered when there are more complexities to symptom/pain management and goals of care/end of life, transition to hospice, or complex communication dynamics.⁴

Though specialty palliative care was shown to be more comprehensive, both primary palliative care and specialty palliative care have led to improvements in the quality of life in individuals living with serious illness.⁵ Early integration of palliative care into routine care has been shown to improve symptom burden, mood, quality of life, survival, and health care costs.⁶

Updates in alternative and complementary therapies to palliative care

There are several alternative and complementary therapies to palliative care, including cannabis and psychedelics. These therapies are becoming or may become a familiar part of medical therapies that are listed in a patient’s history as part of their medical regimen, especially as more states continue to legalize and/or decriminalize the use of these alternative therapies for recreational or medicinal use.

Both cannabis and psychedelics have a longstanding history of therapeutic and holistic use. Cannabis has been used to manage symptoms such as pain since the 16th and 17th century.⁷ In palliative care, more patients may turn to various forms of cannabis as a source of relief from symptoms and suffering as their focus shifts more to quality of life.

Even with the increasing popularity of the use of cannabis among seriously ill patients, there is still a lack of evidence of the benefits of medical cannabis use in palliative care, and there is a lack of standardization of type of cannabis used and state regulations regarding their use.⁷

A recent systematic review found that despite the reported positive treatment effects of cannabis in palliative care, the results of the studies were conflicting. This highlights the need for further high-quality research to determine whether cannabis products are an effective treatment in palliative care patients.⁸

One limitation to note is that the majority of the included studies focused on cannabis use in patients with cancer for cancer-related symptoms. Few studies included patients with other serious conditions.
 

Psychedelics

There is evidence that psychedelic assisted therapy (PAT) is a safe and effective treatment for individuals with refractory depression, posttraumatic stress disorder, and substance use disorder.⁹ Plus, there have been ample studies providing support that PAT improves symptoms such as refractory anxiety/depression, demoralization, and existential distress in seriously ill patients, thus improving their quality of life and overall well-being.⁹

Nine U.S. cities and the State of Oregon have decriminalized or legalized the psychedelic psilocybin, based on the medical benefits patients have experienced evidenced from using it.¹⁰

In light of the increasing interest in PAT, Dr. Ira Byock provided the following points on what “all clinicians should know as they enter this uncharted territory”:

• Psychedelics have been around for a long time.
• Psychedelic-assisted therapies’ therapeutic effects are experiential.
• There are a variety of terms for specific categories of psychedelic compounds.
• Some palliative care teams are already caring for patients who undergo psychedelic experiences.
• Use of psychedelics should be well-observed by a skilled clinician with expertise.

I am hoping this provides a general refresher on palliative care and an overview of updates to alternative and complementary therapies for patients living with serious illness.⁹

Dr. Kang is a geriatrician and palliative care provider at the University of Washington, Seattle in the division of geriatrics and gerontology. She has no conflicts related to the content of this piece.

References

1. World Health Organization. Palliative care. 2020 Aug 5..

2. Weissman DE and Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting a consensus report from the center to advance palliative care. J Palliat Med. 2011;14(1):17-23.

3. Sherry D et al. Is primary care physician involvement associated with earlier advance care planning? A study of patients in an academic primary care setting. J Palliat Med. 2022;25(1):75-80.

4. Quill TE and Abernethy AP. Generalist plus specialist palliative care-creating a more sustainable model. N Engl J Med. 2013;368:1173-75.

5. Ernecoff NC et al. Comparing specialty and primary palliative care interventions: Analysis of a systematic review. J Palliat Med. 2020;23(3):389-96.

6. Temmel JS et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2011;363:733-42.

7. Kogan M and Sexton M. Medical cannabis: A new old tool for palliative care. J Altern Complement Med . 2020 Sep;26(9):776-8.

8. Doppen M et al. Cannabis in palliative care: A systematic review of the current evidence. J Pain Symptom Manage. 2022 Jun 12;S0885-3924(22)00760-6.

9. Byock I. Psychedelics for serious illness: Five things clinicians need to know. The Center to Advance Palliative Care. Psychedelics for Serious Illness, Palliative in Practice, Center to Advance Palliative Care (capc.org). June 13, 2022.

10. Marks M. A strategy for rescheduling psilocybin. Scientific American. Oct. 11, 2021.

There are still misperceptions of palliative medicine, including when to consider referral to a palliative care specialist.

The World Health Organization defines palliative care as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial or spiritual.”¹

Kang_Gina_Seattle_web.jpg

The common misperception is that palliative care is only for those at end of life or only in the advanced stages of their illness. However, palliative care is ideally most helpful following individuals from diagnosis through their illness trajectory. Another misperception is that palliative care and hospice are the same thing. Though all hospice is palliative care, all palliative care is not hospice. Both palliative care and hospice provide care for individuals facing a serious illness and focus on the same philosophy of care, but palliative care can be initiated at any stage of illness, even if the goal is to pursue curative and life-prolonging therapies/interventions.

In contrast, hospice is considered for those who are at the end of life and are usually not pursuing life-prolonging therapies or interventions, instead focusing on comfort, symptom management, and optimization of quality of life.

Though there is a growing need for palliative care, there is a shortage of specialist palliative care providers. Much of the palliative care needs can be met by all providers who can offer basic symptom management, identification surrounding goals of care and discussions of advance care planning, and understanding of illness/prognosis and treatment options, which is called primary palliative care.² In fact, two-thirds of patients with a serious illness other than cancer prefer discussion of end-of-life care or advance care planning with their primary care providers.³

Referral to specialty palliative care should be considered when there are more complexities to symptom/pain management and goals of care/end of life, transition to hospice, or complex communication dynamics.⁴

Though specialty palliative care was shown to be more comprehensive, both primary palliative care and specialty palliative care have led to improvements in the quality of life in individuals living with serious illness.⁵ Early integration of palliative care into routine care has been shown to improve symptom burden, mood, quality of life, survival, and health care costs.⁶

Updates in alternative and complementary therapies to palliative care

There are several alternative and complementary therapies to palliative care, including cannabis and psychedelics. These therapies are becoming or may become a familiar part of medical therapies that are listed in a patient’s history as part of their medical regimen, especially as more states continue to legalize and/or decriminalize the use of these alternative therapies for recreational or medicinal use.

Both cannabis and psychedelics have a longstanding history of therapeutic and holistic use. Cannabis has been used to manage symptoms such as pain since the 16th and 17th century.⁷ In palliative care, more patients may turn to various forms of cannabis as a source of relief from symptoms and suffering as their focus shifts more to quality of life.

Even with the increasing popularity of the use of cannabis among seriously ill patients, there is still a lack of evidence of the benefits of medical cannabis use in palliative care, and there is a lack of standardization of type of cannabis used and state regulations regarding their use.⁷

A recent systematic review found that despite the reported positive treatment effects of cannabis in palliative care, the results of the studies were conflicting. This highlights the need for further high-quality research to determine whether cannabis products are an effective treatment in palliative care patients.⁸

One limitation to note is that the majority of the included studies focused on cannabis use in patients with cancer for cancer-related symptoms. Few studies included patients with other serious conditions.
 

Psychedelics

There is evidence that psychedelic assisted therapy (PAT) is a safe and effective treatment for individuals with refractory depression, posttraumatic stress disorder, and substance use disorder.⁹ Plus, there have been ample studies providing support that PAT improves symptoms such as refractory anxiety/depression, demoralization, and existential distress in seriously ill patients, thus improving their quality of life and overall well-being.⁹

Nine U.S. cities and the State of Oregon have decriminalized or legalized the psychedelic psilocybin, based on the medical benefits patients have experienced evidenced from using it.¹⁰

In light of the increasing interest in PAT, Dr. Ira Byock provided the following points on what “all clinicians should know as they enter this uncharted territory”:

• Psychedelics have been around for a long time.
• Psychedelic-assisted therapies’ therapeutic effects are experiential.
• There are a variety of terms for specific categories of psychedelic compounds.
• Some palliative care teams are already caring for patients who undergo psychedelic experiences.
• Use of psychedelics should be well-observed by a skilled clinician with expertise.

I am hoping this provides a general refresher on palliative care and an overview of updates to alternative and complementary therapies for patients living with serious illness.⁹

Dr. Kang is a geriatrician and palliative care provider at the University of Washington, Seattle in the division of geriatrics and gerontology. She has no conflicts related to the content of this piece.

References

1. World Health Organization. Palliative care. 2020 Aug 5..

2. Weissman DE and Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting a consensus report from the center to advance palliative care. J Palliat Med. 2011;14(1):17-23.

3. Sherry D et al. Is primary care physician involvement associated with earlier advance care planning? A study of patients in an academic primary care setting. J Palliat Med. 2022;25(1):75-80.

4. Quill TE and Abernethy AP. Generalist plus specialist palliative care-creating a more sustainable model. N Engl J Med. 2013;368:1173-75.

5. Ernecoff NC et al. Comparing specialty and primary palliative care interventions: Analysis of a systematic review. J Palliat Med. 2020;23(3):389-96.

6. Temmel JS et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2011;363:733-42.

7. Kogan M and Sexton M. Medical cannabis: A new old tool for palliative care. J Altern Complement Med . 2020 Sep;26(9):776-8.

8. Doppen M et al. Cannabis in palliative care: A systematic review of the current evidence. J Pain Symptom Manage. 2022 Jun 12;S0885-3924(22)00760-6.

9. Byock I. Psychedelics for serious illness: Five things clinicians need to know. The Center to Advance Palliative Care. Psychedelics for Serious Illness, Palliative in Practice, Center to Advance Palliative Care (capc.org). June 13, 2022.

10. Marks M. A strategy for rescheduling psilocybin. Scientific American. Oct. 11, 2021.