Palliative Care
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《新英格兰医药杂志》
This Journal feature begins with a case vignette highlighting a common clinical problem. Evidence supporting various strategies is then presented, followed by a review of formal guidelines, when they exist. The article ends with the authors' clinical recommendations.
An 85-year-old man with New York Heart Association class IV heart failure, hypertension, and moderate Alzheimer's disease is admitted to the hospital after a hip fracture. His postoperative course is complicated by pneumonia, delirium, and pressure ulcers on his heels and sacrum. He is losing weight and is unable to participate in rehabilitation because of his confusion. This is his fourth hospitalization in the past year. His 84-year-old wife, who has been caring for him at home, feels overwhelmed by his medical and personal care needs. The patient's physician is increasingly frustrated by his frequent readmissions. What might she do to address his needs, alleviate his suffering, and facilitate his discharge from the hospital and subsequent care at home?
The Clinical Problem
By 2030, 20 percent of the U.S. population will be over the age of 65 years.1 For most people, the years after the age of 65 are a time of good health, independence, and integration of a life's work and experience. Eventually, most adults will have one or more chronic illnesses with which they will live for years before they die. These years are often characterized by physical and psychological distress, progressive functional dependence and frailty, and increased needs for family and external support.1 Studies suggest that medical care for patients with serious and advanced illnesses is characterized by the undertreatment of symptoms, conflict about who should make decisions about the patient's care, impairments in caregivers' physical and psychological health, and depletion of family resources.2,3,4,5
Strategies and Evidence
The Role of Palliative Care
There are many reasons why patients who have advanced illnesses receive inadequate care, but most of those reasons are rooted in a medical philosophy that is focused almost exclusively on curing illness and prolonging life, rather than on improving the quality of life and relieving suffering. Traditionally, medical care has been articulated as having two mutually exclusive goals: either to cure disease and prolong life or to provide comfort care.1 Given this dichotomy, the decision to focus on reducing suffering is made only after life-prolonging treatment has been ineffectual and death is imminent.6 In the United States, this forced choice is driven largely by the reimbursement system — that is, regular Medicare covers curative therapies and the Medicare hospice benefit covers comfort care. That division of services results both in the provision of burdensome and costly life-prolonging treatments when they are no longer beneficial and in preventable suffering during all stages of advanced illness.7 In contrast, patients would benefit most from care that included a combination of life-prolonging treatment (when possible and appropriate), palliation of symptoms, rehabilitation, and support for caregivers.
Meeting the needs of patients will require that physicians employ skills that are not traditionally taught in medical schools.8 Palliative care aims to relieve suffering and improve the quality of life for patients with advanced illnesses and their families through specific knowledge and skills, including communication with patients and family members; management of pain and other symptoms; psychosocial, spiritual, and bereavement support; and coordination of an array of medical and social services.1 Palliative care should be offered simultaneously with all other medical treatment.
Physician–Patient Communication
Communicating with patients is a core skill of palliative medicine.9 Studies suggest that in a typical clinical encounter, clinicians elicit fewer than half of patients' concerns and consistently fail to discuss patients' values, goals of care, and preferences with regard to treatment.10 Empirical evidence supports the effectiveness of clinicians' use of specific communication skills in enhancing disclosure of the issues of concern to a patient, decreasing anxiety, assessing depression, and improving a patient's well-being and the level of the patient's and the family's satisfaction with the treatment.10 Those communication skills include making eye contact with patients, asking open-ended questions, responding to a patient's affect, and demonstrating empathy. When a physician is informing a patient about a poor prognosis, conducting an open, "patient-centered" interview (in which the emphasis is on empathy, openness, and reassurance), rather than the traditional closed, "physician-centered" interview (in which the physician is focused on the task), has been associated with an improved level of satisfaction on the part of patients and their families.11
Guidelines have been developed for establishing goals of medical care, communicating bad news, and withholding or withdrawing medical treatments (Figure 1).12,13 Whether the use of these protocols actually helps patients and their families has not been empirically determined, but we and others12,13,14,15,16 have found these guidelines to be useful in clinical practice. One randomized trial in the United Kingdom showed that a postgraduate course in communication skills that had cognitive, behavioral, and affective components led to improved communication skills among the physicians.17 Similar courses are offered annually in the United States.18,19
Figure 1. Protocols for Communicating with Patients about Major Topics in Palliative Care.
Adapted from the Education on Palliative and End-of-life Care Project.12
Palliative care begins with establishing the goals of care. Outlining realistic and attainable goals assumes an increased importance in the setting of advanced disease, in which treatments intended to cure the disease and prolong life may be more burdensome than beneficial. Whereas the goal for some patients may be to prolong life at any cost, studies suggest that what most seriously ill patients want is to have their pain and other symptoms relieved, improve their quality of life, avoid being a burden to their family, have a closer relationship with loved ones, and maintain a sense of control.9,20
Establishing clear goals can facilitate decision making regarding treatment. For example, in the case of a patient with end-stage dementia who has dysphagia, placement of a percutaneous endoscopic gastrostomy (PEG) tube may be considered. If the primary goal is to reduce suffering and enhance the quality of life, then placing a PEG tube is unlikely to meet these goals, since it requires a painful, invasive procedure; eliminates the pleasurable oral sensations of eating and drinking; is associated with an increased use of restraints; can cause cellulitis, vomiting, diarrhea, and fluid imbalances; and is unlikely to reduce the risk of aspiration.21 Even in cases in which a primary goal is to prolong life, the role of a PEG tube remains questionable; no survival benefits have been shown in observational studies in which patients with dementia who received feeding tubes were compared with similar patients who did not receive feeding tubes.21
Expert opinion suggests that clinicians can assist patients and their families in establishing their own goals by means of open-ended and probing questions. Some examples of the types of questions include "What makes life worth living for you?" "Given the severity of your illness, what are the most important things for you to achieve?" "What are your most important hopes?" "What are your biggest fears?" and "What would you consider to be a fate worse than death?"16 The goals that patients establish may overlap, be contradictory, rise and fall in importance, and shift with the progression of the disease.12,16 Warning signs of poorly established or conflicting goals can include frequent and lengthy hospitalizations; feelings of frustration, anger, or powerlessness on the part of the physician; and feelings of being burdened on the part of caregivers.15
Once goals are established, they can be used to construct advance directives about the types of care that patients want. Most studies,22 although not all,23,24 have shown that few patients have advance directives and that the documents they do have are relatively ineffectual in enhancing physician–patient communication, facilitating decision making about resuscitation,25 or influencing terminal care in hospitals.22 It is possible that the gradual rise in the prevalence of advance directives over the past decade will improve their effectiveness, as physicians and patients become more familiar with them and physicians become more comfortable using them for assistance in guiding the care of cognitively impaired adults. A recent report suggested that the focus of advance care planning should shift from discussing specific treatments to defining an acceptable quality of life and setting goals for care under various likely clinical scenarios.26,27 Whether this goal-centered approach to advance care planning will affect clinical outcomes is unknown.
Assessment and Treatment of Symptoms
A fundamental goal of palliative care is the relief of pain and other symptoms.9,20 Successful approaches to the assessment and management of pain and some physical and psychological symptoms have been established in controlled trials.12,28,29,30 Despite these advances, undertreatment of symptoms persists in the majority of patients and settings.2,31
Relief of suffering begins with routine and standardized symptom assessment with use of validated instruments. Routine assessment has been shown to identify overlooked and unreported symptoms, facilitate treatment, and enhance patient and family satisfaction.32,33 Clinically useful assessment instruments can be found on the Web sites of the Center to Advance Palliative Care (www.capc.org) and of Brown University's Center for Gerontology and Health Care Research, which features a tool kit of instruments to measure end-of-life care (www.chcr.brown.edu/pcoc/toolkit.htm).
Improved treatment of symptoms has been associated with the enhancement of patient and family satisfaction, functional status, quality of life, and other clinical outcomes.32,34 Although a comprehensive review of strategies for assessment and therapy of symptoms is beyond the scope of this review, Table 1 summarizes approaches to commonly encountered symptoms in advanced illnesses.
Table 1. Approaches to the Management of Pain and Other Common Symptoms.
Psychosocial, Spiritual, and Bereavement Support
Providing psychosocial, spiritual, and bereavement support to patients and caregivers is a key component of palliative care. Patients who experience spiritual and psychological distress are more likely to express a desire for death than are other patients,42 and their family members are more likely to have an extended or complicated grief and bereavement process (defined as grief that lasts for at least 14 months after the death and results in a failure of the survivor to return to his or her normal activities) and are at higher risk for illness and death.43
Studies suggest that patients welcome inquiries about their spiritual well-being from their physicians,44 although interventions to address spiritual distress have not been well developed or well evaluated. Support groups have been found to reduce stress and depression experienced by caregivers.45,46 Although many formal interventions to address complicated grief and bereavement have been described, data are lacking on their effects on outcomes.47 Two recent studies reported lower morbidity and mortality48 and better emotional support49 among surviving family members of hospice patients than among family members of patients who did not receive hospice services, although it is uncertain whether this difference reflects the nature of families who elect hospice care rather than the effects of the intervention.48
Coordination of Care
Several studies demonstrate that the personal and practical care needs of patients who are seriously ill and their families are not adequately addressed by routine office visits or hospital and nursing home stays and that this failure results in substantial burdens — medical, psychological, and financial — on patients and their caregivers.3,4,5,49,50 In the context of chronic progressive disease, the ability of physicians to coordinate an array of social and medical services on behalf of patients and families assumes increased importance.
Various comprehensive care programs are available to help physicians manage the care of their patients who have serious and complex illnesses. Palliative care programs within home care organizations, hospitals, and nursing homes are increasingly prevalent in the United States and provide comprehensive interdisciplinary care for patients and families in collaboration and consultation with primary care physicians.51 Hospice services, under the Medicare benefit, are available in most U.S. communities and provide palliative care, primarily at home, for patients with a life expectancy of six months or less who are willing to forgo insurance coverage for life-prolonging treatments. Studies suggest that referral to palliative care programs and hospice results in beneficial effects on patients' symptoms, reduced hospital costs, a greater likelihood of death at home, and a higher level of patient and family satisfaction than does conventional care.49,50,52,53
Other programs that coordinate care for patients who have complex illnesses are available in most communities. Programs that coordinate home care services for patients with chronic conditions (e.g., depression, heart failure, or the acquired immunodeficiency syndrome) have been associated with increased patient and family satisfaction and reductions in mortality, use of hospital services, visits to physicians' offices, and admission to nursing homes.54,55,56 Case management is usually provided by managed-care organizations, Medicare managed-care services, commercial insurers, some home health care agencies, and privately hired case managers. The quality, cost, and extent of the services provided are highly variable.
Comprehensive multidisciplinary home care programs that serve frail older adults have been evaluated under Medicare and the Veterans Health Administration (VHA). The Program of All-Inclusive Care for the Elderly (PACE) is a capitated Medicare and Medicaid benefit for frail older adults that offers comprehensive medical and social services at 25 adult day health centers, in homes, and at inpatient facilities. (More information about the program is available online at www.cms.hhs.gov/pace/.) Patients who use the services provided by PACE have higher rates of completing advance directives for their care57 and lower rates of admission to nursing homes,58 hospitalization,59 and death in the hospital59 than do patients who do not use the services. Similar programs of team-coordinated home-based care exist within the VHA.60
Until comprehensive palliative care programs become widely available, the responsibility for coordination of care falls to the primary care physician, since patients and their families frequently have problems negotiating the current health care system. Table 2 details the range of palliative care services that should be considered at various stages of a serious illness; Table 3 lists services that are covered by Medicare.
Table 2. Coordination of Care for Early, Middle, and Late Stages of Serious Chronic Illnesses.
Table 3. Summary of Medicare Coverage for Common Services Required by Patients with Serious and Chronic Illnesses.
Areas of Uncertainty
Physicians have few data to guide them in improving their communication with patients and in their management of pain and other symptoms. The communication guidelines presented in Figure 1, although widely taught and used by palliative care experts, have not been shown to be associated with improved outcomes. Similarly, although data are available to guide the treatment of pain due to cancer, data are lacking regarding the treatment of other pain syndromes, symptoms other than pain (such as dyspnea, fatigue, delirium, and anxiety), spiritual distress, and complicated grief and bereavement.
Guidelines
The National Comprehensive Cancer Network61 has developed guidelines for patients who have advanced incurable cancer, and the National Consensus Project for Quality Palliative Care,62 a collaborative effort of five national palliative care organizations, has similar guidelines for patients who have advanced chronic illnesses. These guidelines encompass many of the recommendations detailed in this article, and the National Consensus Project guidelines also include recommendations regarding the spiritual, religious, and existential aspects of care; cultural aspects of care; and care of patients whose death is imminent.62 Although the guidelines of the National Comprehensive Cancer Network are targeted to patients with terminal cancer, many patients who have early stages of the disease or uncertain prognoses or who are undergoing active curative or life-prolonging therapies can benefit from the organization's recommendations. The application of those recommendations should not be restricted to patients with a limited life expectancy.
Conclusions and Recommendations
The aim of palliative care is to relieve suffering and improve the quality of life for patients with advanced illnesses and their families. It is based on an interdisciplinary approach that is offered simultaneously with other appropriate medical treatments and involves close attention to the emotional, spiritual, and practical needs and goals of patients and of the people who are close to them. The patient who is described in the vignette, who has multiple chronic and serious medical conditions but is not actively dying, is ideally suited to receive high-quality palliative care. Specifically, we suggest the following approach. The patient's symptoms should be assessed and treated, as discussed in Table 1. If available, consultation with a palliative care team should be strongly considered to help with evaluating and managing his symptoms. Once the patient is comfortable, a discussion about realistic goals should be held, with particular attention given to clarifying the patient's opinion about an acceptable quality of life, identifying conditions under which the patient would consider life not worth living, establishing attainable short- and long-term goals, and designating a health care proxy. We recommend that this discussion be summarized in a treatment directive and that a health-care-proxy form be completed. Once goals are clarified, appropriate treatment and discharge planning can begin.
In the case described in the vignette, for example, the treatment goal might be to focus on the patient's comfort and on caring for him at home, and the appropriate treatments might be spoon-feeding rather than placement of a PEG tube, diuretics and bisphosphonates, avoidance of hospitalization, and a trial of physical and occupational therapy with the aim of regaining function. The patient's discharge services will depend on the goals, the patient's insurance coverage and financial resources, and available home care services. Since a hospice program will support these goals, a referral to hospice should be considered. If hospice is not an option (e.g., because of limited home care hours or uncertainty about the prognosis), the patient should be referred to a case-management program, PACE, or a certified home care agency. The family's ability to afford medications should be evaluated, and alternative sources (such as mail-order drug plans or state-sponsored prescription plans for low-income elderly people) or less costly medications should be considered. Before discharge, a home-safety and home-needs evaluation should be performed either by an occupational therapist or through a structured interview with the patient's caregiver. An assessment of support requirements for the caregiver should be conducted to ensure that the personal care needs of the patient and the patient's family are met. Referral to a social worker can help identify community alternatives and determine Medicaid eligibility. Finally, a regular system of communication should be established between the treating physician and the home care team.
Dr. Morrison is a Paul Beeson Faculty Scholar in Aging Research, an Open Society Institute Project on Death in America Faculty Scholar, and the recipient of a Mid-Career Investigator Award in Patient-Oriented Research (K24AG022345) from the National Institute on Aging. Dr. Meier is an Open Society Institute Project on Death in America Faculty Scholar, the recipient of an Academic Career Leadership Award (K07AG00903) from the National Institute on Aging, and the director of the Center to Advance Palliative Care, a program office of the Robert Wood Johnson Foundation.
Source Information
From the Hertzberg Palliative Care Institute, Brookdale Department of Geriatrics and Adult Development, Mount Sinai School of Medicine, New York.
Address reprint requests to Dr. Morrison at the Department of Geriatrics, Box 1070, Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029, or at sean.morrison@mssm.edu.
References
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Morrison RS, Meier DE. High rates of advance care planning in New York City's elderly. Arch Intern Med (in press).
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Meier DE, Morrison RS. Autonomy reconsidered. N Engl J Med 2002;346:1087-1089.
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Smith TJ, Coyne P, Cassel B, Penberthy L, Hopson A, Hager MA. A high-volume specialist palliative care unit and team may reduce in-hospital end-of-life care costs. J Palliat Med 2003;6:699-705.
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Related Letters:
Palliative Care
Stovall E. L., Kane R. C., Morrison R. S., Meier D. E.(R. Sean Morrison, M.D., a)
An 85-year-old man with New York Heart Association class IV heart failure, hypertension, and moderate Alzheimer's disease is admitted to the hospital after a hip fracture. His postoperative course is complicated by pneumonia, delirium, and pressure ulcers on his heels and sacrum. He is losing weight and is unable to participate in rehabilitation because of his confusion. This is his fourth hospitalization in the past year. His 84-year-old wife, who has been caring for him at home, feels overwhelmed by his medical and personal care needs. The patient's physician is increasingly frustrated by his frequent readmissions. What might she do to address his needs, alleviate his suffering, and facilitate his discharge from the hospital and subsequent care at home?
The Clinical Problem
By 2030, 20 percent of the U.S. population will be over the age of 65 years.1 For most people, the years after the age of 65 are a time of good health, independence, and integration of a life's work and experience. Eventually, most adults will have one or more chronic illnesses with which they will live for years before they die. These years are often characterized by physical and psychological distress, progressive functional dependence and frailty, and increased needs for family and external support.1 Studies suggest that medical care for patients with serious and advanced illnesses is characterized by the undertreatment of symptoms, conflict about who should make decisions about the patient's care, impairments in caregivers' physical and psychological health, and depletion of family resources.2,3,4,5
Strategies and Evidence
The Role of Palliative Care
There are many reasons why patients who have advanced illnesses receive inadequate care, but most of those reasons are rooted in a medical philosophy that is focused almost exclusively on curing illness and prolonging life, rather than on improving the quality of life and relieving suffering. Traditionally, medical care has been articulated as having two mutually exclusive goals: either to cure disease and prolong life or to provide comfort care.1 Given this dichotomy, the decision to focus on reducing suffering is made only after life-prolonging treatment has been ineffectual and death is imminent.6 In the United States, this forced choice is driven largely by the reimbursement system — that is, regular Medicare covers curative therapies and the Medicare hospice benefit covers comfort care. That division of services results both in the provision of burdensome and costly life-prolonging treatments when they are no longer beneficial and in preventable suffering during all stages of advanced illness.7 In contrast, patients would benefit most from care that included a combination of life-prolonging treatment (when possible and appropriate), palliation of symptoms, rehabilitation, and support for caregivers.
Meeting the needs of patients will require that physicians employ skills that are not traditionally taught in medical schools.8 Palliative care aims to relieve suffering and improve the quality of life for patients with advanced illnesses and their families through specific knowledge and skills, including communication with patients and family members; management of pain and other symptoms; psychosocial, spiritual, and bereavement support; and coordination of an array of medical and social services.1 Palliative care should be offered simultaneously with all other medical treatment.
Physician–Patient Communication
Communicating with patients is a core skill of palliative medicine.9 Studies suggest that in a typical clinical encounter, clinicians elicit fewer than half of patients' concerns and consistently fail to discuss patients' values, goals of care, and preferences with regard to treatment.10 Empirical evidence supports the effectiveness of clinicians' use of specific communication skills in enhancing disclosure of the issues of concern to a patient, decreasing anxiety, assessing depression, and improving a patient's well-being and the level of the patient's and the family's satisfaction with the treatment.10 Those communication skills include making eye contact with patients, asking open-ended questions, responding to a patient's affect, and demonstrating empathy. When a physician is informing a patient about a poor prognosis, conducting an open, "patient-centered" interview (in which the emphasis is on empathy, openness, and reassurance), rather than the traditional closed, "physician-centered" interview (in which the physician is focused on the task), has been associated with an improved level of satisfaction on the part of patients and their families.11
Guidelines have been developed for establishing goals of medical care, communicating bad news, and withholding or withdrawing medical treatments (Figure 1).12,13 Whether the use of these protocols actually helps patients and their families has not been empirically determined, but we and others12,13,14,15,16 have found these guidelines to be useful in clinical practice. One randomized trial in the United Kingdom showed that a postgraduate course in communication skills that had cognitive, behavioral, and affective components led to improved communication skills among the physicians.17 Similar courses are offered annually in the United States.18,19
Figure 1. Protocols for Communicating with Patients about Major Topics in Palliative Care.
Adapted from the Education on Palliative and End-of-life Care Project.12
Palliative care begins with establishing the goals of care. Outlining realistic and attainable goals assumes an increased importance in the setting of advanced disease, in which treatments intended to cure the disease and prolong life may be more burdensome than beneficial. Whereas the goal for some patients may be to prolong life at any cost, studies suggest that what most seriously ill patients want is to have their pain and other symptoms relieved, improve their quality of life, avoid being a burden to their family, have a closer relationship with loved ones, and maintain a sense of control.9,20
Establishing clear goals can facilitate decision making regarding treatment. For example, in the case of a patient with end-stage dementia who has dysphagia, placement of a percutaneous endoscopic gastrostomy (PEG) tube may be considered. If the primary goal is to reduce suffering and enhance the quality of life, then placing a PEG tube is unlikely to meet these goals, since it requires a painful, invasive procedure; eliminates the pleasurable oral sensations of eating and drinking; is associated with an increased use of restraints; can cause cellulitis, vomiting, diarrhea, and fluid imbalances; and is unlikely to reduce the risk of aspiration.21 Even in cases in which a primary goal is to prolong life, the role of a PEG tube remains questionable; no survival benefits have been shown in observational studies in which patients with dementia who received feeding tubes were compared with similar patients who did not receive feeding tubes.21
Expert opinion suggests that clinicians can assist patients and their families in establishing their own goals by means of open-ended and probing questions. Some examples of the types of questions include "What makes life worth living for you?" "Given the severity of your illness, what are the most important things for you to achieve?" "What are your most important hopes?" "What are your biggest fears?" and "What would you consider to be a fate worse than death?"16 The goals that patients establish may overlap, be contradictory, rise and fall in importance, and shift with the progression of the disease.12,16 Warning signs of poorly established or conflicting goals can include frequent and lengthy hospitalizations; feelings of frustration, anger, or powerlessness on the part of the physician; and feelings of being burdened on the part of caregivers.15
Once goals are established, they can be used to construct advance directives about the types of care that patients want. Most studies,22 although not all,23,24 have shown that few patients have advance directives and that the documents they do have are relatively ineffectual in enhancing physician–patient communication, facilitating decision making about resuscitation,25 or influencing terminal care in hospitals.22 It is possible that the gradual rise in the prevalence of advance directives over the past decade will improve their effectiveness, as physicians and patients become more familiar with them and physicians become more comfortable using them for assistance in guiding the care of cognitively impaired adults. A recent report suggested that the focus of advance care planning should shift from discussing specific treatments to defining an acceptable quality of life and setting goals for care under various likely clinical scenarios.26,27 Whether this goal-centered approach to advance care planning will affect clinical outcomes is unknown.
Assessment and Treatment of Symptoms
A fundamental goal of palliative care is the relief of pain and other symptoms.9,20 Successful approaches to the assessment and management of pain and some physical and psychological symptoms have been established in controlled trials.12,28,29,30 Despite these advances, undertreatment of symptoms persists in the majority of patients and settings.2,31
Relief of suffering begins with routine and standardized symptom assessment with use of validated instruments. Routine assessment has been shown to identify overlooked and unreported symptoms, facilitate treatment, and enhance patient and family satisfaction.32,33 Clinically useful assessment instruments can be found on the Web sites of the Center to Advance Palliative Care (www.capc.org) and of Brown University's Center for Gerontology and Health Care Research, which features a tool kit of instruments to measure end-of-life care (www.chcr.brown.edu/pcoc/toolkit.htm).
Improved treatment of symptoms has been associated with the enhancement of patient and family satisfaction, functional status, quality of life, and other clinical outcomes.32,34 Although a comprehensive review of strategies for assessment and therapy of symptoms is beyond the scope of this review, Table 1 summarizes approaches to commonly encountered symptoms in advanced illnesses.
Table 1. Approaches to the Management of Pain and Other Common Symptoms.
Psychosocial, Spiritual, and Bereavement Support
Providing psychosocial, spiritual, and bereavement support to patients and caregivers is a key component of palliative care. Patients who experience spiritual and psychological distress are more likely to express a desire for death than are other patients,42 and their family members are more likely to have an extended or complicated grief and bereavement process (defined as grief that lasts for at least 14 months after the death and results in a failure of the survivor to return to his or her normal activities) and are at higher risk for illness and death.43
Studies suggest that patients welcome inquiries about their spiritual well-being from their physicians,44 although interventions to address spiritual distress have not been well developed or well evaluated. Support groups have been found to reduce stress and depression experienced by caregivers.45,46 Although many formal interventions to address complicated grief and bereavement have been described, data are lacking on their effects on outcomes.47 Two recent studies reported lower morbidity and mortality48 and better emotional support49 among surviving family members of hospice patients than among family members of patients who did not receive hospice services, although it is uncertain whether this difference reflects the nature of families who elect hospice care rather than the effects of the intervention.48
Coordination of Care
Several studies demonstrate that the personal and practical care needs of patients who are seriously ill and their families are not adequately addressed by routine office visits or hospital and nursing home stays and that this failure results in substantial burdens — medical, psychological, and financial — on patients and their caregivers.3,4,5,49,50 In the context of chronic progressive disease, the ability of physicians to coordinate an array of social and medical services on behalf of patients and families assumes increased importance.
Various comprehensive care programs are available to help physicians manage the care of their patients who have serious and complex illnesses. Palliative care programs within home care organizations, hospitals, and nursing homes are increasingly prevalent in the United States and provide comprehensive interdisciplinary care for patients and families in collaboration and consultation with primary care physicians.51 Hospice services, under the Medicare benefit, are available in most U.S. communities and provide palliative care, primarily at home, for patients with a life expectancy of six months or less who are willing to forgo insurance coverage for life-prolonging treatments. Studies suggest that referral to palliative care programs and hospice results in beneficial effects on patients' symptoms, reduced hospital costs, a greater likelihood of death at home, and a higher level of patient and family satisfaction than does conventional care.49,50,52,53
Other programs that coordinate care for patients who have complex illnesses are available in most communities. Programs that coordinate home care services for patients with chronic conditions (e.g., depression, heart failure, or the acquired immunodeficiency syndrome) have been associated with increased patient and family satisfaction and reductions in mortality, use of hospital services, visits to physicians' offices, and admission to nursing homes.54,55,56 Case management is usually provided by managed-care organizations, Medicare managed-care services, commercial insurers, some home health care agencies, and privately hired case managers. The quality, cost, and extent of the services provided are highly variable.
Comprehensive multidisciplinary home care programs that serve frail older adults have been evaluated under Medicare and the Veterans Health Administration (VHA). The Program of All-Inclusive Care for the Elderly (PACE) is a capitated Medicare and Medicaid benefit for frail older adults that offers comprehensive medical and social services at 25 adult day health centers, in homes, and at inpatient facilities. (More information about the program is available online at www.cms.hhs.gov/pace/.) Patients who use the services provided by PACE have higher rates of completing advance directives for their care57 and lower rates of admission to nursing homes,58 hospitalization,59 and death in the hospital59 than do patients who do not use the services. Similar programs of team-coordinated home-based care exist within the VHA.60
Until comprehensive palliative care programs become widely available, the responsibility for coordination of care falls to the primary care physician, since patients and their families frequently have problems negotiating the current health care system. Table 2 details the range of palliative care services that should be considered at various stages of a serious illness; Table 3 lists services that are covered by Medicare.
Table 2. Coordination of Care for Early, Middle, and Late Stages of Serious Chronic Illnesses.
Table 3. Summary of Medicare Coverage for Common Services Required by Patients with Serious and Chronic Illnesses.
Areas of Uncertainty
Physicians have few data to guide them in improving their communication with patients and in their management of pain and other symptoms. The communication guidelines presented in Figure 1, although widely taught and used by palliative care experts, have not been shown to be associated with improved outcomes. Similarly, although data are available to guide the treatment of pain due to cancer, data are lacking regarding the treatment of other pain syndromes, symptoms other than pain (such as dyspnea, fatigue, delirium, and anxiety), spiritual distress, and complicated grief and bereavement.
Guidelines
The National Comprehensive Cancer Network61 has developed guidelines for patients who have advanced incurable cancer, and the National Consensus Project for Quality Palliative Care,62 a collaborative effort of five national palliative care organizations, has similar guidelines for patients who have advanced chronic illnesses. These guidelines encompass many of the recommendations detailed in this article, and the National Consensus Project guidelines also include recommendations regarding the spiritual, religious, and existential aspects of care; cultural aspects of care; and care of patients whose death is imminent.62 Although the guidelines of the National Comprehensive Cancer Network are targeted to patients with terminal cancer, many patients who have early stages of the disease or uncertain prognoses or who are undergoing active curative or life-prolonging therapies can benefit from the organization's recommendations. The application of those recommendations should not be restricted to patients with a limited life expectancy.
Conclusions and Recommendations
The aim of palliative care is to relieve suffering and improve the quality of life for patients with advanced illnesses and their families. It is based on an interdisciplinary approach that is offered simultaneously with other appropriate medical treatments and involves close attention to the emotional, spiritual, and practical needs and goals of patients and of the people who are close to them. The patient who is described in the vignette, who has multiple chronic and serious medical conditions but is not actively dying, is ideally suited to receive high-quality palliative care. Specifically, we suggest the following approach. The patient's symptoms should be assessed and treated, as discussed in Table 1. If available, consultation with a palliative care team should be strongly considered to help with evaluating and managing his symptoms. Once the patient is comfortable, a discussion about realistic goals should be held, with particular attention given to clarifying the patient's opinion about an acceptable quality of life, identifying conditions under which the patient would consider life not worth living, establishing attainable short- and long-term goals, and designating a health care proxy. We recommend that this discussion be summarized in a treatment directive and that a health-care-proxy form be completed. Once goals are clarified, appropriate treatment and discharge planning can begin.
In the case described in the vignette, for example, the treatment goal might be to focus on the patient's comfort and on caring for him at home, and the appropriate treatments might be spoon-feeding rather than placement of a PEG tube, diuretics and bisphosphonates, avoidance of hospitalization, and a trial of physical and occupational therapy with the aim of regaining function. The patient's discharge services will depend on the goals, the patient's insurance coverage and financial resources, and available home care services. Since a hospice program will support these goals, a referral to hospice should be considered. If hospice is not an option (e.g., because of limited home care hours or uncertainty about the prognosis), the patient should be referred to a case-management program, PACE, or a certified home care agency. The family's ability to afford medications should be evaluated, and alternative sources (such as mail-order drug plans or state-sponsored prescription plans for low-income elderly people) or less costly medications should be considered. Before discharge, a home-safety and home-needs evaluation should be performed either by an occupational therapist or through a structured interview with the patient's caregiver. An assessment of support requirements for the caregiver should be conducted to ensure that the personal care needs of the patient and the patient's family are met. Referral to a social worker can help identify community alternatives and determine Medicaid eligibility. Finally, a regular system of communication should be established between the treating physician and the home care team.
Dr. Morrison is a Paul Beeson Faculty Scholar in Aging Research, an Open Society Institute Project on Death in America Faculty Scholar, and the recipient of a Mid-Career Investigator Award in Patient-Oriented Research (K24AG022345) from the National Institute on Aging. Dr. Meier is an Open Society Institute Project on Death in America Faculty Scholar, the recipient of an Academic Career Leadership Award (K07AG00903) from the National Institute on Aging, and the director of the Center to Advance Palliative Care, a program office of the Robert Wood Johnson Foundation.
Source Information
From the Hertzberg Palliative Care Institute, Brookdale Department of Geriatrics and Adult Development, Mount Sinai School of Medicine, New York.
Address reprint requests to Dr. Morrison at the Department of Geriatrics, Box 1070, Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029, or at sean.morrison@mssm.edu.
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Related Letters:
Palliative Care
Stovall E. L., Kane R. C., Morrison R. S., Meier D. E.(R. Sean Morrison, M.D., a)