Geriatric Palliative Medicine

1. Geriatric Palliative Medicine Adam Herman, MD Assistant Professor Division of Geriatric Medicine and Gerontology Wesley Woods Health Center

2. Palliative Medicine Case Mrs. F. was an 87 year-old widow living in the home of one of her daughters. She required 24-hour supervision because of moderately advanced dementia of the Alzheimer’s type. I’d like to start with a case that, unfortunately, is similar to something that many in this room have experienced in their professional careers, and some may have been through personally as well. READ SLIDEI’d like to start with a case that, unfortunately, is similar to something that many in this room have experienced in their professional careers, and some may have been through personally as well. READ SLIDE

3. Palliative Medicine Case Her daughter, age 65, herself widowed and medically frail because of congestive heart failure, was struggling physically, emotionally, and financially to provide care for her mother. A rapid decline in Mrs. F’s mental status and increase in agitation precipitated a hospitalization, during which she was diagnosed with breast cancer that had spread to the spine. READ SLIDEREAD SLIDE

4. Palliative Medicine Case After a 3-day stay in the acute hospital, Mrs. F. was transferred to a local nursing home for “terminal care”. READ SLIDE READ SLIDE

5. Palliative Medicine Case It took several days for her daughter to convince the nursing home staff and physician (none of whom had cared for Mrs. F. previously) that her mother’s agitation represented pain. Opioids were prescribed, but caused Mrs. F. to become sedated, nauseated and severely constipated. READ SLIDEREAD SLIDE

6. Palliative Medicine Case Still lethargic and nauseated after one week in the nursing home, Mrs. F. vomited, aspirated, and went into acute respiratory distress. The staff called 911, and Mrs. F. was transported back to the hospital where she was intubated and admitted to the ICU. READ SLIDEREAD SLIDE

7. Palliative Medicine Case Upon arrival at the hospital Mrs. F.’s daughter was extremely distressed to see her mother on a respirator, and requested she be removed from it. READ SLIDEREAD SLIDE

8. Palliative Medicine Case After several hours of discussion, Mrs. F. was placed on a morphine drip and removed from the respirator. She died 6 hours later. READ SLIDE This case can be analyzed and reviewed from a number of different perspectives: The medical assessment of dementia with new onset agitation A discussion of appropriate therapy for metastatic breast cancer The appropriate use of opioids, and management of side effects An assessment of quality of care issues The management of caregiver needs by psychosocial services Or the appropriate use of emergency medical services I’d like to look at this from the perspective of Palliative Medicine. I will begin by defining the term, explaining why it is a field that is important to clinicians, it’s specific relevance to those caring for older adults, a look at the future evolution of the field, and what Palliative Medicine will look like at Emory.READ SLIDE This case can be analyzed and reviewed from a number of different perspectives: The medical assessment of dementia with new onset agitation A discussion of appropriate therapy for metastatic breast cancer The appropriate use of opioids, and management of side effects An assessment of quality of care issues The management of caregiver needs by psychosocial services Or the appropriate use of emergency medical services I’d like to look at this from the perspective of Palliative Medicine. I will begin by defining the term, explaining why it is a field that is important to clinicians, it’s specific relevance to those caring for older adults, a look at the future evolution of the field, and what Palliative Medicine will look like at Emory.

9. What is Palliative Medicine? DEATH and DYING (just like hospice) I’d like to start by defining Palliative Medicine. Most people believe Palliative Medicine is indistinguishable from hospice: care of the dying patient. The second most common perception is that Palliative Medicine is a type of pain management service. There are, of course, an almost overwhelming number of issues that are addressed by the field. It is, therefore, well served by the clear definition provided by the World Health Organization:I’d like to start by defining Palliative Medicine. Most people believe Palliative Medicine is indistinguishable from hospice: care of the dying patient. The second most common perception is that Palliative Medicine is a type of pain management service. There are, of course, an almost overwhelming number of issues that are addressed by the field. It is, therefore, well served by the clear definition provided by the World Health Organization:

10. What is Palliative Medicine? …an approach that improves the quality of life of patients and their families facing the problems 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. READ DEFINITION As you can see, this definition does NOT specifically mention death and dying which has been the focus of the traditional model of end-of-life care.READ DEFINITION As you can see, this definition does NOT specifically mention death and dying which has been the focus of the traditional model of end-of-life care.

11. What is Palliative Medicine? provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patients illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. Modern palliative medicine addresses the needs of patients who are at risk of death (many of our patients), and chooses to focus on the relief of their suffering. Modern palliative medicine addresses the needs of patients who are at risk of death (many of our patients), and chooses to focus on the relief of their suffering.

12. Model of Modern Palliative Medicine This model of care states that initiation of Palliative Medicine should be done by clinicians at the time of diagnosis of disease, and during routine medical encounters. This includes addressing advance directives, and the benefits and burdens of therapy. As disease progresses, care becomes more directed toward managing symptoms and avoiding suffering, and often referral to palliative medicine specialists is appropriate.This model of care states that initiation of Palliative Medicine should be done by clinicians at the time of diagnosis of disease, and during routine medical encounters. This includes addressing advance directives, and the benefits and burdens of therapy. As disease progresses, care becomes more directed toward managing symptoms and avoiding suffering, and often referral to palliative medicine specialists is appropriate.

13. The Role of Hospice/EOL Care Hospice: insurance sponsored program that cares for people at the end of life 1974: Connecticut Hospice opens, funded by NCI—primarily serves cancer patient 1982: Medicare hospice benefit enacted Hospice: Necessary but not sufficient (only 25% of potential enrollees) Why? Why has the field of PM diverged from hospice and EOL care? Hospice in America is essentially an insurance benefit designed to provide care for those near the end of life who are no longer seeking curative or life-prolonging therapy. There are 3 primary requirements 1) not pursue curative intent measures, 2) expectation of Life is 6months or less (51% chance), 3) patient (family) agree to this approach of care. (if medicare eligible pt. will waive right to Medicare part A to take Medicare Hospice benefit) As you can see, the first modern hospice opened in 1974, funded by the National Cancer Institute. Hospice has existed as the established Medicare benefit we know today for a little over 2 decades. However, only approximately one quarter of potential enrollees take advantage of the benefit. Hospice is a program that has been shown to result in decreased pain and suffering, and improved patient and family satisfaction. But when cure is not possible, why is the hospice benefit not used for the majority of eligible patients. Why is the presence of this benefit insufficient to provide end-of-life care to those who need it?Why has the field of PM diverged from hospice and EOL care? Hospice in America is essentially an insurance benefit designed to provide care for those near the end of life who are no longer seeking curative or life-prolonging therapy. There are 3 primary requirements 1) not pursue curative intent measures, 2) expectation of Life is 6months or less (51% chance), 3) patient (family) agree to this approach of care. (if medicare eligible pt. will waive right to Medicare part A to take Medicare Hospice benefit) As you can see, the first modern hospice opened in 1974, funded by the National Cancer Institute. Hospice has existed as the established Medicare benefit we know today for a little over 2 decades. However, only approximately one quarter of potential enrollees take advantage of the benefit. Hospice is a program that has been shown to result in decreased pain and suffering, and improved patient and family satisfaction. But when cure is not possible, why is the hospice benefit not used for the majority of eligible patients. Why is the presence of this benefit insufficient to provide end-of-life care to those who need it?

14. Life Threatening Illness in Young Adults Often a single disease process (trauma, cancer) Few or no comorbidities Tolerate therapy well Spouse/partner likely to be healthy, and provide care Fairly rapid (and predictable) decline before death The answer has to do with the fact that hospice is well designed to serve the needs of younger adults with life-threatening illness, while older adults face different issues. Young adults with life threatening illnesses have some common characteristics: Most deaths in young people occur due to trauma (such as automobile accidents, suicides, homicides) or with cancers Younger people tend to have fewer or no comorbidities Tolerate therapy well Spouse/partner/support network are likely to be young and healthy, and able to provide care Most young adults have an identifiable decline prior to death. Because of this identifiable decline, clinicians are able to identify when to make a hospice referral. But this describes the minority of the population with life threatening illnesses.The answer has to do with the fact that hospice is well designed to serve the needs of younger adults with life-threatening illness, while older adults face different issues. Young adults with life threatening illnesses have some common characteristics: Most deaths in young people occur due to trauma (such as automobile accidents, suicides, homicides) or with cancers Younger people tend to have fewer or no comorbidities Tolerate therapy well Spouse/partner/support network are likely to be young and healthy, and able to provide care Most young adults have an identifiable decline prior to death. Because of this identifiable decline, clinicians are able to identify when to make a hospice referral. But this describes the minority of the population with life threatening illnesses.

15. Life Threatening Illness in Older Adults Difficult to recognize 80% of deaths occur in those >65 Illness and death in the older population is different Comorbidities increase complexity The majority of deaths in the US occur in older adults, and life-threatening illness is different in older adults. The causes of illness and death are different in the older adult population, and are often related to chronic diseases. The chronic nature of the dying process in these patients is often unrecognized, as seen in this cartoon. Often older adult patients have multiple chronic comorbidities that make their healthcare needs more complex. This, in part, is why Geriatrics has developed as a specialty.The majority of deaths in the US occur in older adults, and life-threatening illness is different in older adults. The causes of illness and death are different in the older adult population, and are often related to chronic diseases. The chronic nature of the dying process in these patients is often unrecognized, as seen in this cartoon. Often older adult patients have multiple chronic comorbidities that make their healthcare needs more complex. This, in part, is why Geriatrics has developed as a specialty.

16. Emergence of Geriatrics Geriatrics is different Geriatrics addresses the care of those who have had multiple chronic diseases, often for many decades, and require multiple medications to remain functional and well All clinicians will be caring for these patients Geriatric care is different from primary care of younger adults because of changes in physiology found in older adults, and because of the emphasis on functional status and quality of life. Geriatrics is different from most specialties because it does not focus on a single disease or organ system; instead it looks at the whole person: a person who has accumulated multiple chronic diseases, may take a dozen or more medications, and whose physiology and ability to overcome acute illness has changed significantly over the previous decades of life. Inevitable demographic changes in the US mean that we will all be providing care for more older adults. Geriatric care is different from primary care of younger adults because of changes in physiology found in older adults, and because of the emphasis on functional status and quality of life. Geriatrics is different from most specialties because it does not focus on a single disease or organ system; instead it looks at the whole person: a person who has accumulated multiple chronic diseases, may take a dozen or more medications, and whose physiology and ability to overcome acute illness has changed significantly over the previous decades of life. Inevitable demographic changes in the US mean that we will all be providing care for more older adults.

17. Demographic Changes As you can see from these census data, although the population overall has increased significantly since 1950, the >65 year old population has grown at twice the rate of the general population. In looking at the right-hand portion of this figure which provides population projections for the next 45 years, this is a trend that is projected to continue.As you can see from these census data, although the population overall has increased significantly since 1950, the >65 year old population has grown at twice the rate of the general population. In looking at the right-hand portion of this figure which provides population projections for the next 45 years, this is a trend that is projected to continue.

18. Demographic Changes This demographic shift is due to the leading edge of the baby-boom generation that will begin turning 65 years old in the year 2011. It is projected that over the next 45 years, as the baby-boomer generation ages, the >65 yo population will grow to become 20% of the total population, while younger adults and the pediatric age groups will decline.This demographic shift is due to the leading edge of the baby-boom generation that will begin turning 65 years old in the year 2011. It is projected that over the next 45 years, as the baby-boomer generation ages, the >65 yo population will grow to become 20% of the total population, while younger adults and the pediatric age groups will decline.

19. The Cure-Care Dichotomy: The Traditional Model How do these demographic changes affect palliative care? If we look at the traditional model of EOL care we can see that when a patient is diagnosed with a serious illness (and if cure is not an option), life-prolonging care is initiated to slow disease progression. **CLICK** Shortly before the end of life the disease progresses to the point where there is a significant decline in function and it becomes clear that a patient is dying. It becomes appropriate to initiate a referral to a hospice, or for the provider to attempt care to relieve suffering without a hospice referral. **CLICK** It is hoped that when it occurs, the patient’s death will be painless. This model assumes that it will be clear to clinicians when a patient transitions from needing life-prolonging care (on the left of the screen) to the dying process on the right-hand side of the screen.How do these demographic changes affect palliative care? If we look at the traditional model of EOL care we can see that when a patient is diagnosed with a serious illness (and if cure is not an option), life-prolonging care is initiated to slow disease progression. **CLICK** Shortly before the end of life the disease progresses to the point where there is a significant decline in function and it becomes clear that a patient is dying. It becomes appropriate to initiate a referral to a hospice, or for the provider to attempt care to relieve suffering without a hospice referral. **CLICK** It is hoped that when it occurs, the patient’s death will be painless. This model assumes that it will be clear to clinicians when a patient transitions from needing life-prolonging care (on the left of the screen) to the dying process on the right-hand side of the screen.

20. Defining “Dying” Is there a clear distinction between two states? Four different trajectories of illness prior to death among older adults have been identified by clinicians, and supported by data. Is this dichotomy clinically apparent? Is there a clear distinction between two states? Certainly some people have a predictable trajectory of declining health status prior to death, but many clinicians have long been aware of at least 4 different disease trajectories prior to death. Researchers looking at healthcare utilization among older adults have attempted to validate the presence of distinct trajectories prior to death.Is this dichotomy clinically apparent? Is there a clear distinction between two states? Certainly some people have a predictable trajectory of declining health status prior to death, but many clinicians have long been aware of at least 4 different disease trajectories prior to death. Researchers looking at healthcare utilization among older adults have attempted to validate the presence of distinct trajectories prior to death.

21. Trajectories of Dying Lunney et al. reviewed physician Medicare claims in the year before death. They divided 7,258 decedents into 4 previously described conceptual categories Do these groupings classify decedents? In an attempt to validate this classification, Lunney and colleagues reviewed physician Medicare claims in the year before death. They divided 7,258 decedents into 4 different groups representing the different disease trajectories. The research attempted to describe the degree to which these groupings accurately classify decedents. In an attempt to validate this classification, Lunney and colleagues reviewed physician Medicare claims in the year before death. They divided 7,258 decedents into 4 different groups representing the different disease trajectories. The research attempted to describe the degree to which these groupings accurately classify decedents.

22. Trajectories of Dying The first group in the upper L was labeled “Sudden Death”—those under 80 y.o., who had under $2000 in Medicare expenditure the year before death, in other words those with little or no preceding illness or healthcare utilization who died of acute illness. The second group, ”Terminal Illness” in the upper R, was identified as having a plurality of Medicare claims in the last year of life for cancer; these are patients who tend to function fairly well, until overwhelmed by untreatable disease, usually within the last 6 weeks of life **You may note that this is a trajectory with a clearly identifiable terminal phase that best fits the current dichotomous model of Life-Prolongation versus Palliation that I showed on a previous slide. It should not be surprising that this cancer trajectory fits well with the hospice model of care, since the hospice benefit was initially funded by the National Cancer Institute. The third group, “Organ System Failure” in the lower L was identified by a hospital or emergency room claim within the year before death for CHF or COPD; these patients tend to have a slowly progressive life-threatening illness for many years, punctuated by periodic disease exacerbations each of which may result in death, or may resolve. The Fourth group, “Frailty” in the lower R, had a Medicare claim within the previous year of one of the diseases listed above; these people tend to decline very slowly, and die related to complications of their underlying disease There was a 5th group “Other” who did not meet criteria for any of the other 4 categories. That group comprised 8% of the claims that were studied.The first group in the upper L was labeled “Sudden Death”—those under 80 y.o., who had under $2000 in Medicare expenditure the year before death, in other words those with little or no preceding illness or healthcare utilization who died of acute illness. The second group, ”Terminal Illness” in the upper R, was identified as having a plurality of Medicare claims in the last year of life for cancer; these are patients who tend to function fairly well, until overwhelmed by untreatable disease, usually within the last 6 weeks of life **You may note that this is a trajectory with a clearly identifiable terminal phase that best fits the current dichotomous model of Life-Prolongation versus Palliation that I showed on a previous slide. It should not be surprising that this cancer trajectory fits well with the hospice model of care, since the hospice benefit was initially funded by the National Cancer Institute. The third group, “Organ System Failure” in the lower L was identified by a hospital or emergency room claim within the year before death for CHF or COPD; these patients tend to have a slowly progressive life-threatening illness for many years, punctuated by periodic disease exacerbations each of which may result in death, or may resolve. The Fourth group, “Frailty” in the lower R, had a Medicare claim within the previous year of one of the diseases listed above; these people tend to decline very slowly, and die related to complications of their underlying disease There was a 5th group “Other” who did not meet criteria for any of the other 4 categories. That group comprised 8% of the claims that were studied.

23. Trajectories of Dying As you can see, among Medicare recipients studied, there appears to be a preponderance of deaths that are not Sudden, or with a clearly predictable terminal phase. 63% of the deaths fell into the Organ failure or Frailty groups (on the right side of the table). Compared to the Sudden Death and Terminal Illness groups (on the left side of the table), they tended to be Older More frequently got care in a nursing home rarely got care from a hospice And were highly likely to receive terminal care in an acute-care hospital. Hospital care is a form of care that we know from survey data is undesirable—most people prefer to die in their own homes rather than in a hospital. Additionally, we know that hospital care does not meet the needs of dying patients.As you can see, among Medicare recipients studied, there appears to be a preponderance of deaths that are not Sudden, or with a clearly predictable terminal phase. 63% of the deaths fell into the Organ failure or Frailty groups (on the right side of the table). Compared to the Sudden Death and Terminal Illness groups (on the left side of the table), they tended to be Older More frequently got care in a nursing home rarely got care from a hospice And were highly likely to receive terminal care in an acute-care hospital. Hospital care is a form of care that we know from survey data is undesirable—most people prefer to die in their own homes rather than in a hospital. Additionally, we know that hospital care does not meet the needs of dying patients.

24. Opportunities for Improvement: Hospital-Based Care SUPPORT Trial: 4-year study in 5 major teaching hospitals; 9105 patients with life-threatening illness How do we know this? Data demonstrate unmet needs exist at the end of life, even in the finest acute-care hospitals in the country. The first data from the SUPPORT trial were published 10 years ago. This study had an initial 2 year observational period during which patient prognoses and preferences were assessed, followed by a 2-year intervention period during which patient prognoses and preferences were shared with physicians. The SUPPORT trial showed that physicians tended not to know their patients advance directive wishes many patients received aggressive life-prolonging care immediately prior to death but their needs with regards to symptom management were frequently unmet.How do we know this? Data demonstrate unmet needs exist at the end of life, even in the finest acute-care hospitals in the country. The first data from the SUPPORT trial were published 10 years ago. This study had an initial 2 year observational period during which patient prognoses and preferences were assessed, followed by a 2-year intervention period during which patient prognoses and preferences were shared with physicians. The SUPPORT trial showed that physicians tended not to know their patients advance directive wishes many patients received aggressive life-prolonging care immediately prior to death but their needs with regards to symptom management were frequently unmet.

25. Opportunities for Improvement: Long-Term Care Site of terminal care is projected to change NH population projected growth from 2.5 to 3.4 million by 2020 1 in 2 adults is likely to die in NH in 2020 But this is only the tip of the iceberg. As you can see, currently nearly 50% of deaths in America occur in acute care hospitals, with a slightly higher proportion than that in Georgia. As more Americans age, the nursing home population is projected to grow. Projections suggest that by 2020 nearly 50% of Americans will die in a NH. Is EOL care better there?But this is only the tip of the iceberg. As you can see, currently nearly 50% of deaths in America occur in acute care hospitals, with a slightly higher proportion than that in Georgia. As more Americans age, the nursing home population is projected to grow. Projections suggest that by 2020 nearly 50% of Americans will die in a NH. Is EOL care better there?

26. Opportunities for Improvement: Long-Term Care Nursing homes show shortcomings in their care as well. Nationally, 41.6% of nursing home residents were in persistent pain in 2001. In Georgia CLICK Among those with cancer, 52.8% had persistent severe pain Among persons recognized as terminally ill, 39.3% experienced this level of pain Nursing homes show shortcomings in their care as well. Nationally, 41.6% of nursing home residents were in persistent pain in 2001. In Georgia CLICK Among those with cancer, 52.8% had persistent severe pain Among persons recognized as terminally ill, 39.3% experienced this level of pain

27. Opportunities for Improvement: Long-Term Care Additionally, rates of having a formal advance directive involving resuscitation at the end of life or artificial nutrition or hydration tended to be low. CLICK Again, while the national average was 45.4%, only 23.4% of terminally ill nursing home residents in Georgia had a formal advance directive. Clearly, there are a number of opportunities for improvementAdditionally, rates of having a formal advance directive involving resuscitation at the end of life or artificial nutrition or hydration tended to be low. CLICK Again, while the national average was 45.4%, only 23.4% of terminally ill nursing home residents in Georgia had a formal advance directive. Clearly, there are a number of opportunities for improvement

28. Report Card: Access to Palliative care So how does Georgia stack up againt the rest of the country as far as ACCESS to Palliative care CLICK Some good some bad … overall…So how does Georgia stack up againt the rest of the country as far as ACCESS to Palliative care CLICK Some good some bad … overall…

29. How Georgia Compares… Not so good… There are multiple opportunities to improve care to the geriatric population needing good palliative and hospice care. Gaps: 1) Advanced care planning, 2) improving Nursing home palliative care, 3) improving access to palliative care, 4) undertreatment of symptomsNot so good… There are multiple opportunities to improve care to the geriatric population needing good palliative and hospice care. Gaps: 1) Advanced care planning, 2) improving Nursing home palliative care, 3) improving access to palliative care, 4) undertreatment of symptoms

30. Questions? Special thanks to Laurent Adler, MD the original creator of these slides. (updates and edit have been added)