⏐ GOING PUBLIC ⏐
End-of-Life Care in
By Maya Ribault, BS
CRITICAL CONDITION | Sibyl S. Wilmont, RN, BSN, BA
Terry Ross-Courthan, 35, sitting in her room at a residential hospice in the Bronx, NY, three weeks before she died of metastatic breast cancer. Photo by Sibyl Shalo Wilmont.
58 | Going Public | Wilmont
Palliative care, comfort measures, hospice—these terms are often used interchangeably among health care professionals and laypeople alike. However, advocates for the dying believe that this “language barrier” is about more than just a semantic debate. It is about popular misconceptions that either delay the provision of compassionate, realistic, end-of-life care or deny it altogether. This prolongs unnecessary misery for people at the end of their lives, puts undue hardship on their loved ones, and overburdens the health care system.1,2
A pervasive neglect to provide appropriate end-of-life care (EOLC) makes little clinical or economic sense. Supporting previous findings, recent studies have demonstrated that Medicare patients who get adequate and timely EOLC, including palliative and hospice care, experience better quality of life as they near death than do those who do not receive such care.3 In addition, their care usually costs less than that delivered without regard to the futility of more aggressive treatments designed to prolong life.4 For these reasons, EOLC experts argue that improving the
quality of death is as important a public health imperative as is improving the quality of life.5 This article aims to clarify the definitions of relevant terms and describe the facilitators and barriers for provision of appropriate EOLC.
PROBLEM: MORE THAN SEMANTICS The essence of palliative care is a focus on easing patient suffering, including, but not limited to, medical, physical, psychiatric, occupational, and psychosocial (art, music, journaling) therapies. Management of pain, anxiety,
American Journal of Public Health | January 2015, Vol 105, No. 1
⏐ GOING PUBLIC ⏐
insomnia, dyspnea, and urinary tract infections tops the list of medical interventions. It also includes family support, such as anticipatory bereavement counseling, logistical help, and estate planning. Palliative care is an umbrella concept that comprises comfort measures, supportive care, and hospice—but it is not limited to those actively dying. It can also benefit people who experience chronic pain and discomfort (such as from serious injuries or assault) and, increasingly, those suffering from advanced dementia.6 What palliative care does not include are aggressive curative treatments designed to extend life, whether the diagnosis is cancer, AIDS, heart failure, or a persistent vegetative state. It is not synonymous with euthanasia or physician-assisted suicide. The terms “comfort measures only” and “do not resuscitate” describe orders to withhold unwanted or futile treatments—such as surgery, tube feeding, chemotherapy, or CPR—that specifically aim to extend life. Effective palliative care begins with guiding patients and their loved ones to make informed decisions. Palliative care professionals educate patients about their treatment options. They assist with the development of plans called advance directives to designate surrogate decisionmakers—health care proxy, power of attorney—to carry out patients’ wishes if they are unable to voice them. The problem is that, without a basic understanding of these terms, clinicians who do not work in palliative care lack the knowledge and confidence to provide such education, and patients end up without a voice in their own care plans.7
In one study, for example, physicians working in the same institution had different views of what is and what is not included in the term “comfort measures only.”8 It is true that, in addition to pain and sleep aid medications, comfort measures may include treatments like antibiotics for a urinary tract infection and chemotherapy to reduce tumorrelated discomfort. However, without a common language to discuss these decisions, even patients who have advance directives and do-not-resuscitate orders in place end up getting aggressive, life-extending treatments they did not want.9 The World Health Organization specifically excludes life extension from its definition of palliative care: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.10
The term “hospice” is perhaps even more misunderstood than palliative care. In fact, according to the American Hospice Foundation, a general “cluelessness” about it leads to widely held notions that hospice care is restricted to the elderly and those with cancer, excludes the needs of families, is expensive and not covered by managed care, and, perhaps most importantly, is only necessary when all hope is lost.11 On the contrary, according to a 2013 policy statement from the American Public Health Association: Hospice care, a form of palliative care for patients who may
January 2015, Vol 105, No. 1 | American Journal of Public Health
no longer be appropriate candidates for disease-modifying therapies or curative treatments because they have an advanced or terminal illness, is a comprehensive interdisciplinary program that provides pain and symptom management as well as psychosocial, emotional, and spiritual services to patients and their family members.12
PROBLEM: CULTURAL NORMS AND SOCIETAL TABOOS Despite the demonstrated outcomes and accepted definitions, “many physicians still don’t even know what palliative care is,” says Brenda Matti-Orozco, MD, chief of the division of geriatrics and palliative medicine, Mount Sinai St. Luke’s and Mount Sinai Roosevelt Hospital in New York City. Partly because it has been portrayed as the basis for “death panels” or as a way to cut costs. But also because the advancement of medicine and technology fuels the idea that there’s always one more thing, we have to try to extend life.
Matti-Orozco refers to two key factors perpetuating the misconceptions about palliative care. The first is the myth of “death panels,” which is based loosely on political rhetoric publicized in the US health care reform debate more than five years ago. It persists in the absence of open discussion about how we, as a society, should consider a “good death” and how the health care system should be structured to support that view.13 The second is a deeply seated cultural discomfort with, and in some cases fear of, accepting the inevitability of death. In the context of health care, this translates
“
Effective palliative care begins with guiding patients and their loved ones to make informed decisions.
”
Wilmont | Going Public | 59
⏐ GOING PUBLIC ⏐
“
If I could find a place like that, I wouldn't be afraid of death.
”
into general avoidance of discussing death and how, as individuals, we would like to die. This communication vacuum reinforces clinicians’ reluctance to offer patients options or refer them for palliative care. And when they do, they often delay the referral until it is too late for patients to benefit from it—sometimes within days of their death.14 “Perhaps the most significant consequence of the lack of or late access to hospice or palliative care is that end-of-life care goals are never fully discussed,” says William Breitbart, MD, acting chair of the department of psychiatry and behavioral sciences, and chief of the psychiatry service at New York City’s Memorial Sloan-Kettering Cancer Center. Thus, patients may end up receiving care they never wanted or, in fact, wanted to avoid [such as] costly care and utilization of limited resources such as cardiac resuscitation and intubation, ICU stays; a prolongation of the dying process.
This unfortunate scenario, played out publicly in the Terry Schiavo and Karen Ann Quinlan cases, stems from clinicians’ common misconception that referring patients to palliative or hospice care means “giving up.” MattiOrozco’s former colleague, Michelle Cajulis, internal medicine physician with Livingston, New Jersey’s Summit Medical Group, says that clinicians are trained to cure people, “and when we don’t, we feel it’s a personal failing.”
SOLUTION: COLLABORATION Matti-Orozco and Breitbart, among their other responsibilities at their respective institutions, are both members of multidisciplinary
60 | Going Public | Wilmont
palliative care departments. Both have been successful at creating collaborative teams, which are critical to providing comprehensive EOLC.15 The ideal palliative care team structure establishes a continuum of care in which the treatment team—physicians, nurse practitioners, social workers, therapists, home care nurses—follow patients wherever they need to be. That includes hospital-based, in-home, and residential hospice. Matti-Orozco’s team, a partnership between the Metropolitan Jewish Health System (MJHS), a New York Citybased charitable not-for-profit health system, and New York City’s Mount Sinai St. Luke’s and Mount Sinai Roosevelt Hospitals, illustrates this structure. A recent patient of theirs, Terry RossCourthan, exemplifies palliative care done well. She spent two months in the care of a holistically focused, multidisciplinary group of professionals working to meet her changing needs. In an interview three weeks before Terry died of metastatic breast cancer at the age of 35 years, she said she was grateful to be spending her last few months among friends and a caring staff who tended to her medical, spiritual, and social needs. She learned new things—art, crafts, music and singing songs with fellow residents and visiting musicians. But, she explained, until she met Jennifer Phippen, LMSW, the MJHS hospital-based social worker, she thought hospice care was only delivered in a hospital or nursing home setting. The more she learned, the more she thought, “If I could find a place like that, I wouldn’t be afraid of death.” In this context, Phippen says a big part of her job is explaining
what hospice offers, and that it is a two-way street—not a point of no return. Another part is facilitating patients’ and families’ acceptance of death as a natural part of life, and easing their discomfort with straightforward, honest discussion of what to expect. “I’ve had many people come back and thank me for telling it like it is.” Cheryl Ragonesi, LCSW, the MJHS hospice planner manager, says that patients often try to protect their loved ones from the truth of their prognosis and their decision to stop curative treatment. “It’s our duty to explain that although we won’t be treating the disease, per se, we will be aggressively treating their symptoms.” MJHS social work intern Michael Fiore suggests patients have a duty, too, which is to answer two questions: “First, ‘who would speak for me in the event that I can’t speak for myself?’ and second, ‘Have I discussed with this person what is important to me?’”
SOLUTION: EDUCATION AND TRAINING Unless they specialize in endof-life care, like the MJHS team, clinicians get little or no training in this area, and so they lack the confidence to engage in important EOLC discussions. According to Matti-Orozco: They don’t know what to say after “you’re dying.” That’s where the education comes in: We train them to say “We can’t do this for you, but here’s what we can do.”
Breitbart agreed and explained that palliative care and EOLC issues are increasingly entering the curriculum and coursework of medical students. He says this has great merit because medical
American Journal of Public Health | January 2015, Vol 105, No. 1
⏐ GOING PUBLIC ⏐
students are primarily evaluated for their grades in biochemistry and MCATs, and not on their ability to relate to people, their social IQ. “We don’t select ‘natural’ communicators,” he says. “But we are developing ways to teach communication skills to younger physicians and oncologists, for instance, to be able to discuss transitioning from curative to palliative care.” Results of recent research suggest that progress is being made: younger internists in the study were more likely than their older peers to refer patients for EOLC and palliative care.16 Nurses are not immune to this problem, even though they often spend more time with patients at the end of their lives than anyone else on the team.17 In a study by Pullis, student nurses enrolled in a community-nursing course integrating EOLC education reported feeling inadequately prepared to discuss EOLC issues, especially if they worked outside acute care settings.18 But it is not all professionals’ faults, says Cajulis. Patients expect to be cured, and when they are inadequately informed of their care options, they might request futile treatments—to their own detriment and to those of everyone involved. She explains that effective communication requires education of both clinicians and patients, beginning with training clinicians to interview patients and families to assess what they understand—so that everyone is on the same page and at the same starting point.
This was the thinking behind New York State’s Palliative Care Act of 2012, which mandates physicians and nurse practitioners to discuss EOLC options when caring for patients expected to live less than six months.19 Although patient privacy laws may negate the enforceability of other similar laws in development, advocates believe they will bring EOLC to the forefront of clinical practice. Until that happens, and the taboo of discussing death is broken, the Physician Orders for Life-Sustaining Treatment program (POLST) employs a standardized questionnaire to help clinicians around the world break the ice and give their patients a voice and a choice in how they spend their final days.20
About the Author Sibyl S. Wilmont is a registered nurse, health care writer and editor, and student in the Community/Public Health Nursing MSN/MPH dual-degree program at the Hunter-Bellevue School of Nursing and the School of Urban Public Health, City University of New York, New York, NY. Correspondence should be sent to Sibyl Wilmont, e-mail: sibyl@nurseandwriter. com. Reprints can be ordered at http:// www.ajph.org by clicking the “Reprints” link. This article was accepted July 6, 2014. doi:10.2105/AJPH.2014.302189
Acknowledgments The author would like to acknowledge Terry Ross-Courthan’s bravery and generosity of spirit in her willingness to share her story and image. Sincere thanks go to the MJHS/Mount Sinai St. Luke’s and Mount Sinai Roosevelt Hospital Palliative Care Team and William Breitbart, MD, for their time, insights, and patience during the development of this article.
January 2015, Vol 105, No. 1 | American Journal of Public Health
References 1. Niederman MS, Berger JT. The delivery of futile care is harmful to other patients. Crit Care Med. 2010;38(10, suppl):S518–S522 . 2. Cheng SY, Dy S, Hu WY, Chen CY, Chiu TY. Factors affecting the improvement of quality of dying of terminally ill patients through palliative care: a tenyear experience. J Palliat Med. 2012;15(8):854–862. 3. Kelley AS, Deb P, Du Q, Aldridge Carson MD, Morrison RS. Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay. Health Aff (Millwood). 2013;32(3):552–561. 4. Goodman DC, Fisher ES, Wennberg JE, Skinner JS, Chasan-Taber S, Bronner KK. Tracking improvement in the care of chronically ill patients: a Dartmouth Atlas brief on Medicare beneficiaries near the end of life. 2013. Available at: http://www.dartmouthatlas.org/publications. Accessed September 10, 2013. 5. D’Onofrio C, Ryndes T. The relevance of public health in improving access to end of life care. National Hospice Work Group. Available at: http:// www.growthhouse.org/nhwg/essay5. htm. Accessed October 1, 2013. 6. Kiely DK, Givens JL, Shaffer ML, Teno JM, Mitchell SL. Hospice use and outcomes in nursing home residents with advanced dementia. J Am Geriatr Soc. 2010;58(12):2284–2291. 7. Bloomer MJ, Moss C, Cross WM. End-of-life care in acute hospitals: an integrative literature review. J Nurs Healthc Chronic Illn. 2011;3:165–173. 8. Zanartu C, Matti-Orozco B. Comfort measures only: agreeing on a common definition through a survey. Am J Hosp Palliat Care. 2013;30(1):35–39.
11. Naierman N, Turner J. Debunking the myths of hospice. Available at: https//www.americanhospice.org/ articles-mainmenu-8/about-hospice. Accessed October 1, 2013. 12. American Public Health Association. APHA policy statement: supporting public health’s role in addressing unmet needs in serious illness and at the end of life. Policy no. 20134. 2013. Available at: http://www.apha.org/policies-and-advocacy/public-health-policy-statements/policy-database/2014/07/09/13/42/supporting-public-healths-role-in-addressingunmet-needs-in-serious-illness-and-at-theend-of-life. Accessed October 9, 2014. 13. Schweda M, Marckmann G. How do we want to grow old? Anti-ageing-medicine and the scope of public healthcare in liberal democracies. Bioethics. 2013;27(7):357–364. 14. Schenker Y, Tiver GA, Hong SY, White D. Association between physicians’ beliefs and the option of comfort care for critically ill patients. Intensive Care Med. 2012;38:1607–1615. 15. Goodridge D. End of life care policies: do they make a difference in practice? Soc Sci Med. 2010;70:1166–1170. 16. Kogan AC, Brumley R, Wilber K, Enguidanos S. Physician factors that influence patient referrals to end-of-life care. Am J Manag Care. 2012;18(11):e416–e422. 17. Arcand M, Brazil K, Nakanishi M, et al. Educating families about end-of-life care in advanced dementia: Acceptability of a Canadian family booklet to nurses from Canada, France, and Japan. Int J Palliat Nurs. 2013;19(2):67–74. 18. Pullis BC. Integration of end-of-life education into a community health nursing course. Public Health Nurs. 2013;30(5):463–467.
9. Walker KA, Peltier H, Mayo RL, Kearney CD. Impact of writing “comfort measures only” orders in a community teaching hospital. J Palliat Med. 2010;13(3):241–245.
19. New York State Department of Health. Information for a Healthy New York: Patient Care Information Act. Available at: http://www.health.ny.gov/ professionals/patients/patient_rights/ palliative_care/information_act.htm. Accessed October 1, 2013.
10. World Health Organization Web site. WHO definition of palliative care. Available at: http://www.who.int/cancer/palliative/definition/en. Accessed October 28, 2013.
20. Hickman SE, Nelson CA, Moss AH, et al. Use of the physician orders for life-sustaining treatment (POLST) paradigm program in the hospice setting. J Palliat Med. 2009;12(2):133–141.
Wilmont | Going Public | 61
End-of-Life Care in
By Maya Ribault, BS
CRITICAL CONDITION | Sibyl S. Wilmont, RN, BSN, BA
Terry Ross-Courthan, 35, sitting in her room at a residential hospice in the Bronx, NY, three weeks before she died of metastatic breast cancer. Photo by Sibyl Shalo Wilmont.
58 | Going Public | Wilmont
Palliative care, comfort measures, hospice—these terms are often used interchangeably among health care professionals and laypeople alike. However, advocates for the dying believe that this “language barrier” is about more than just a semantic debate. It is about popular misconceptions that either delay the provision of compassionate, realistic, end-of-life care or deny it altogether. This prolongs unnecessary misery for people at the end of their lives, puts undue hardship on their loved ones, and overburdens the health care system.1,2
A pervasive neglect to provide appropriate end-of-life care (EOLC) makes little clinical or economic sense. Supporting previous findings, recent studies have demonstrated that Medicare patients who get adequate and timely EOLC, including palliative and hospice care, experience better quality of life as they near death than do those who do not receive such care.3 In addition, their care usually costs less than that delivered without regard to the futility of more aggressive treatments designed to prolong life.4 For these reasons, EOLC experts argue that improving the
quality of death is as important a public health imperative as is improving the quality of life.5 This article aims to clarify the definitions of relevant terms and describe the facilitators and barriers for provision of appropriate EOLC.
PROBLEM: MORE THAN SEMANTICS The essence of palliative care is a focus on easing patient suffering, including, but not limited to, medical, physical, psychiatric, occupational, and psychosocial (art, music, journaling) therapies. Management of pain, anxiety,
American Journal of Public Health | January 2015, Vol 105, No. 1
⏐ GOING PUBLIC ⏐
insomnia, dyspnea, and urinary tract infections tops the list of medical interventions. It also includes family support, such as anticipatory bereavement counseling, logistical help, and estate planning. Palliative care is an umbrella concept that comprises comfort measures, supportive care, and hospice—but it is not limited to those actively dying. It can also benefit people who experience chronic pain and discomfort (such as from serious injuries or assault) and, increasingly, those suffering from advanced dementia.6 What palliative care does not include are aggressive curative treatments designed to extend life, whether the diagnosis is cancer, AIDS, heart failure, or a persistent vegetative state. It is not synonymous with euthanasia or physician-assisted suicide. The terms “comfort measures only” and “do not resuscitate” describe orders to withhold unwanted or futile treatments—such as surgery, tube feeding, chemotherapy, or CPR—that specifically aim to extend life. Effective palliative care begins with guiding patients and their loved ones to make informed decisions. Palliative care professionals educate patients about their treatment options. They assist with the development of plans called advance directives to designate surrogate decisionmakers—health care proxy, power of attorney—to carry out patients’ wishes if they are unable to voice them. The problem is that, without a basic understanding of these terms, clinicians who do not work in palliative care lack the knowledge and confidence to provide such education, and patients end up without a voice in their own care plans.7
In one study, for example, physicians working in the same institution had different views of what is and what is not included in the term “comfort measures only.”8 It is true that, in addition to pain and sleep aid medications, comfort measures may include treatments like antibiotics for a urinary tract infection and chemotherapy to reduce tumorrelated discomfort. However, without a common language to discuss these decisions, even patients who have advance directives and do-not-resuscitate orders in place end up getting aggressive, life-extending treatments they did not want.9 The World Health Organization specifically excludes life extension from its definition of palliative care: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.10
The term “hospice” is perhaps even more misunderstood than palliative care. In fact, according to the American Hospice Foundation, a general “cluelessness” about it leads to widely held notions that hospice care is restricted to the elderly and those with cancer, excludes the needs of families, is expensive and not covered by managed care, and, perhaps most importantly, is only necessary when all hope is lost.11 On the contrary, according to a 2013 policy statement from the American Public Health Association: Hospice care, a form of palliative care for patients who may
January 2015, Vol 105, No. 1 | American Journal of Public Health
no longer be appropriate candidates for disease-modifying therapies or curative treatments because they have an advanced or terminal illness, is a comprehensive interdisciplinary program that provides pain and symptom management as well as psychosocial, emotional, and spiritual services to patients and their family members.12
PROBLEM: CULTURAL NORMS AND SOCIETAL TABOOS Despite the demonstrated outcomes and accepted definitions, “many physicians still don’t even know what palliative care is,” says Brenda Matti-Orozco, MD, chief of the division of geriatrics and palliative medicine, Mount Sinai St. Luke’s and Mount Sinai Roosevelt Hospital in New York City. Partly because it has been portrayed as the basis for “death panels” or as a way to cut costs. But also because the advancement of medicine and technology fuels the idea that there’s always one more thing, we have to try to extend life.
Matti-Orozco refers to two key factors perpetuating the misconceptions about palliative care. The first is the myth of “death panels,” which is based loosely on political rhetoric publicized in the US health care reform debate more than five years ago. It persists in the absence of open discussion about how we, as a society, should consider a “good death” and how the health care system should be structured to support that view.13 The second is a deeply seated cultural discomfort with, and in some cases fear of, accepting the inevitability of death. In the context of health care, this translates
“
Effective palliative care begins with guiding patients and their loved ones to make informed decisions.
”
Wilmont | Going Public | 59
⏐ GOING PUBLIC ⏐
“
If I could find a place like that, I wouldn't be afraid of death.
”
into general avoidance of discussing death and how, as individuals, we would like to die. This communication vacuum reinforces clinicians’ reluctance to offer patients options or refer them for palliative care. And when they do, they often delay the referral until it is too late for patients to benefit from it—sometimes within days of their death.14 “Perhaps the most significant consequence of the lack of or late access to hospice or palliative care is that end-of-life care goals are never fully discussed,” says William Breitbart, MD, acting chair of the department of psychiatry and behavioral sciences, and chief of the psychiatry service at New York City’s Memorial Sloan-Kettering Cancer Center. Thus, patients may end up receiving care they never wanted or, in fact, wanted to avoid [such as] costly care and utilization of limited resources such as cardiac resuscitation and intubation, ICU stays; a prolongation of the dying process.
This unfortunate scenario, played out publicly in the Terry Schiavo and Karen Ann Quinlan cases, stems from clinicians’ common misconception that referring patients to palliative or hospice care means “giving up.” MattiOrozco’s former colleague, Michelle Cajulis, internal medicine physician with Livingston, New Jersey’s Summit Medical Group, says that clinicians are trained to cure people, “and when we don’t, we feel it’s a personal failing.”
SOLUTION: COLLABORATION Matti-Orozco and Breitbart, among their other responsibilities at their respective institutions, are both members of multidisciplinary
60 | Going Public | Wilmont
palliative care departments. Both have been successful at creating collaborative teams, which are critical to providing comprehensive EOLC.15 The ideal palliative care team structure establishes a continuum of care in which the treatment team—physicians, nurse practitioners, social workers, therapists, home care nurses—follow patients wherever they need to be. That includes hospital-based, in-home, and residential hospice. Matti-Orozco’s team, a partnership between the Metropolitan Jewish Health System (MJHS), a New York Citybased charitable not-for-profit health system, and New York City’s Mount Sinai St. Luke’s and Mount Sinai Roosevelt Hospitals, illustrates this structure. A recent patient of theirs, Terry RossCourthan, exemplifies palliative care done well. She spent two months in the care of a holistically focused, multidisciplinary group of professionals working to meet her changing needs. In an interview three weeks before Terry died of metastatic breast cancer at the age of 35 years, she said she was grateful to be spending her last few months among friends and a caring staff who tended to her medical, spiritual, and social needs. She learned new things—art, crafts, music and singing songs with fellow residents and visiting musicians. But, she explained, until she met Jennifer Phippen, LMSW, the MJHS hospital-based social worker, she thought hospice care was only delivered in a hospital or nursing home setting. The more she learned, the more she thought, “If I could find a place like that, I wouldn’t be afraid of death.” In this context, Phippen says a big part of her job is explaining
what hospice offers, and that it is a two-way street—not a point of no return. Another part is facilitating patients’ and families’ acceptance of death as a natural part of life, and easing their discomfort with straightforward, honest discussion of what to expect. “I’ve had many people come back and thank me for telling it like it is.” Cheryl Ragonesi, LCSW, the MJHS hospice planner manager, says that patients often try to protect their loved ones from the truth of their prognosis and their decision to stop curative treatment. “It’s our duty to explain that although we won’t be treating the disease, per se, we will be aggressively treating their symptoms.” MJHS social work intern Michael Fiore suggests patients have a duty, too, which is to answer two questions: “First, ‘who would speak for me in the event that I can’t speak for myself?’ and second, ‘Have I discussed with this person what is important to me?’”
SOLUTION: EDUCATION AND TRAINING Unless they specialize in endof-life care, like the MJHS team, clinicians get little or no training in this area, and so they lack the confidence to engage in important EOLC discussions. According to Matti-Orozco: They don’t know what to say after “you’re dying.” That’s where the education comes in: We train them to say “We can’t do this for you, but here’s what we can do.”
Breitbart agreed and explained that palliative care and EOLC issues are increasingly entering the curriculum and coursework of medical students. He says this has great merit because medical
American Journal of Public Health | January 2015, Vol 105, No. 1
⏐ GOING PUBLIC ⏐
students are primarily evaluated for their grades in biochemistry and MCATs, and not on their ability to relate to people, their social IQ. “We don’t select ‘natural’ communicators,” he says. “But we are developing ways to teach communication skills to younger physicians and oncologists, for instance, to be able to discuss transitioning from curative to palliative care.” Results of recent research suggest that progress is being made: younger internists in the study were more likely than their older peers to refer patients for EOLC and palliative care.16 Nurses are not immune to this problem, even though they often spend more time with patients at the end of their lives than anyone else on the team.17 In a study by Pullis, student nurses enrolled in a community-nursing course integrating EOLC education reported feeling inadequately prepared to discuss EOLC issues, especially if they worked outside acute care settings.18 But it is not all professionals’ faults, says Cajulis. Patients expect to be cured, and when they are inadequately informed of their care options, they might request futile treatments—to their own detriment and to those of everyone involved. She explains that effective communication requires education of both clinicians and patients, beginning with training clinicians to interview patients and families to assess what they understand—so that everyone is on the same page and at the same starting point.
This was the thinking behind New York State’s Palliative Care Act of 2012, which mandates physicians and nurse practitioners to discuss EOLC options when caring for patients expected to live less than six months.19 Although patient privacy laws may negate the enforceability of other similar laws in development, advocates believe they will bring EOLC to the forefront of clinical practice. Until that happens, and the taboo of discussing death is broken, the Physician Orders for Life-Sustaining Treatment program (POLST) employs a standardized questionnaire to help clinicians around the world break the ice and give their patients a voice and a choice in how they spend their final days.20
About the Author Sibyl S. Wilmont is a registered nurse, health care writer and editor, and student in the Community/Public Health Nursing MSN/MPH dual-degree program at the Hunter-Bellevue School of Nursing and the School of Urban Public Health, City University of New York, New York, NY. Correspondence should be sent to Sibyl Wilmont, e-mail: sibyl@nurseandwriter. com. Reprints can be ordered at http:// www.ajph.org by clicking the “Reprints” link. This article was accepted July 6, 2014. doi:10.2105/AJPH.2014.302189
Acknowledgments The author would like to acknowledge Terry Ross-Courthan’s bravery and generosity of spirit in her willingness to share her story and image. Sincere thanks go to the MJHS/Mount Sinai St. Luke’s and Mount Sinai Roosevelt Hospital Palliative Care Team and William Breitbart, MD, for their time, insights, and patience during the development of this article.
January 2015, Vol 105, No. 1 | American Journal of Public Health
References 1. Niederman MS, Berger JT. The delivery of futile care is harmful to other patients. Crit Care Med. 2010;38(10, suppl):S518–S522 . 2. Cheng SY, Dy S, Hu WY, Chen CY, Chiu TY. Factors affecting the improvement of quality of dying of terminally ill patients through palliative care: a tenyear experience. J Palliat Med. 2012;15(8):854–862. 3. Kelley AS, Deb P, Du Q, Aldridge Carson MD, Morrison RS. Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay. Health Aff (Millwood). 2013;32(3):552–561. 4. Goodman DC, Fisher ES, Wennberg JE, Skinner JS, Chasan-Taber S, Bronner KK. Tracking improvement in the care of chronically ill patients: a Dartmouth Atlas brief on Medicare beneficiaries near the end of life. 2013. Available at: http://www.dartmouthatlas.org/publications. Accessed September 10, 2013. 5. D’Onofrio C, Ryndes T. The relevance of public health in improving access to end of life care. National Hospice Work Group. Available at: http:// www.growthhouse.org/nhwg/essay5. htm. Accessed October 1, 2013. 6. Kiely DK, Givens JL, Shaffer ML, Teno JM, Mitchell SL. Hospice use and outcomes in nursing home residents with advanced dementia. J Am Geriatr Soc. 2010;58(12):2284–2291. 7. Bloomer MJ, Moss C, Cross WM. End-of-life care in acute hospitals: an integrative literature review. J Nurs Healthc Chronic Illn. 2011;3:165–173. 8. Zanartu C, Matti-Orozco B. Comfort measures only: agreeing on a common definition through a survey. Am J Hosp Palliat Care. 2013;30(1):35–39.
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