Chapter 24: Care of the Dying Patient PDF

Mount Saint Vincent College Access Provided by: Medical Management of Vulnerable and Underserved Patients: Principles, Practice, and Populations, 2e Chapter 24: Care of the Dying Patient Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley OBJECTIVES Identify unique burdens of vulnerable persons at the end of life. Identify communication barriers to quality care for the dying. Discuss challenges to endoflife decision making. Identify models of healthcare delivery for dying patients. Summarize practice guidelines and suggest other strategies to improve care of the dying patient. INTRODUCTION Mr. Smith, a 74yearold man with an 8th grade education, presents to the emergency department (ED) with profound shortness of breath and generalized weakness. In the ED, he complains of fatigue and significant weight loss over the past 4 months. He does not have a primary care provider and his father, who was his last living relative, died about 6 months ago. He has a small circle of friends, and although he currently has a stable living situation in a boarding house, he has had bouts of homelessness in the past. His past medical history is significant only for schizophrenia. He is found to have a rightsided pleural effusion and lytic lesions of several ribs. He is informed of the findings and the need to rule out a serious lifethreatening condition such as metastatic cancer. He refuses admission to the hospital, further workup, and declines referral or further discussion. He leaves the ED against medical advice. Facing one’s own mortality is one of life’s greatest challenges, one that makes all people vulnerable. Despite the successes of the hospice movement and advances in the field of palliative care, physical and existential sufferings are still common at the end of life. At the lowest estimates, every year about 20 million people worldwide need endoflife palliative care, including over a million children.1 Even in North America, Europe, and Australia, with developed palliative care programs, there are many unmet needs.1 Access to palliative care is considered by many to be a basic human right.2 The UN Committee on Economic, Social and Cultural Rights stresses the importance of providing “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.”3 The palliative care movement also considers dying pain free and with dignity a basic human right. Human rights groups see denying access to pain relief to the dying as tantamount to torture. For people marginalized by social or economic circumstances, illiteracy, or cultural or language barriers, suffering may be compounded by additional burdens. As a result, endoflife care goals and priorities for marginalized patients extend beyond clinical concerns and may require providers to act as advocates on behalf of social and economic equity.4,5,6 This chapter identifies key issues for the dying patient, focusing on difficulties encountered in medical discussions and in decision making in the face of death in marginalized patients in the United States. Various endoflife healthcare delivery models are summarized along with practice guidelines and other strategies that may improve the quality of life for dying patients. Downloaded 2024218 9:31 A Your IP is 63.247.225.21 Chapter 24: Care of the Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley ©2024 McGraw Hill. AllIN Rights Reserved. of UseDYING Privacy Policy Notice Accessibility CHALLENGES THE CARE Terms OF THE PATIENT DEFINING A GOOD DEATH IN THE CONTEXT OF SOCIAL INEQUITIES Page 1 / 15 relief to the dying as tantamount to torture. For people marginalized by social or economic circumstances, illiteracy, or cultural or language barriers, Mountextend Saint Vincent College suffering may be compounded by additional burdens. As a result, endoflife care goals and priorities for marginalized patients beyond clinical Access concerns and may require providers to act as advocates on behalf of social and economic equity.4,5,6 This chapter identifies keyProvided issuesby: for the dying patient, focusing on difficulties encountered in medical discussions and in decision making in the face of death in marginalized patients in the United States. Various endoflife healthcare delivery models are summarized along with practice guidelines and other strategies that may improve the quality of life for dying patients. CHALLENGES IN THE CARE OF THE DYING PATIENT DEFINING A GOOD DEATH IN THE CONTEXT OF SOCIAL INEQUITIES How does one define a “good death” for the person whose capabilities in life have been constrained by disadvantage, or whose imminent death may result, in whole or in part, from societal factors responsible for socioeconomic inequalities or racial or ethnicbased inequities? Life expectancy among vulnerable persons is generally lower than their more privileged counterparts.7 Their deaths are often premature, occur at younger ages, and are associated with a markedly diminished quality of life. Many factors, including religious or spiritual beliefs and cultural heritage, determine how one thinks about death and dying, advance directives, hospice, and the concept of a good death. For example, not all persons value dying at home or have the support to do so. Homelessness in particular rules out this option. In addition to lack of housing, homeless persons are challenged by having no safe place to store medication and by unreliable transportation to follow up with healthcare providers. Paying particular attention to a patient’s conception of a “good death” and the support needed to achieve it can in itself relieve suffering. Avoiding the temptation to engage in stereotyping by social, racial, ethnic, or cultural categories and maintaining a focus on the quality of care offered to each individual or family (Table 241) is a first step to easing suffering at the end of life. Table 241. Common Issues to Remember When Dealing with Dying Patients and Their Families Compassionate, respectful communication ensures patient and family dignity throughout the dying process Processes of care should take into consideration patient and family's cultural and religious/spiritual values, which are most salient under the stresses of lifethreatening illnesses. Homeless patients who may be estranged from family may still desire compassionate companionship at the end of life. Everyone deserves to experience the end of life free from pain and other symptom burdens. Palliative care teams are often able to provide comprehensive interdisciplinary care that can address the needs of vulnerable patients and families. DIFFICULTIES IN DISCUSSING DEATH AND DYING Mr. Smith returns to the ED with pronounced weakness and an additional 5pound weight loss. He complains of a very poor appetite and difficulty climbing the stairs. His long and difficult history with mental health institutions makes him wary of hospitals and medical personnel, but he reluctantly allows admission to the hospital because he feels so poorly. When he is asked about his resuscitation preferences, he requests that full resuscitation measures be instituted if needed. The workup reveals adenocarcinoma of the lung. The medical oncologist tells him his diagnosis and recommends further tests. Mr. Smith refuses, expressing some suspicion of the diagnosis of cancer. In the case of Mr. Smith, and generally for all patients at risk for death, clear, ongoing, intelligible, and compassionate communication is essential. When discussing difficult diagnoses and prognosis with patients and families, it is critical to attend to timing and setting. Additionally, the ability to exchange information is influenced by native language, cultural backgrounds, education, and literacy, as well as by trust, continuity, and the relationship between patient and providers. The emotional and psychological nature of conversations about serious illness and death may interfere with any patients’ ability to hear, understand, or remember conversations with healthcare providers. COMMUNICATION BARRIERS Obvious communication barriers occur when patients and providers do not share the same native tongue or professional language (see Chapter 31). Downloaded 2024218 9:31 A Your IP is 63.247.225.21 Highly technical medical vocabulary mayJeffrey be foreign to patients. Less evident,LaVera but perhaps more problematic, are cases in which a patient’s Page primary 2 / 15 Chapter 24: Care of the Dying Patient, Stoneberg; Tracy Schrider; M. Crawley ©2024 McGraw Hill. of AllaRights Terms Privacy Policy Notice Accessibility language is a dialect sharedReserved. native tongue, suchofasUse black vernacular English or Creole. In such cases, the need for translation may not be apparent even though the parties may not fully comprehend each other. relationship between patient and providers. The emotional and psychological nature of conversations about serious illness and death may interfere Mount Saint Vincent College with any patients’ ability to hear, understand, or remember conversations with healthcare providers. Access Provided by: COMMUNICATION BARRIERS Obvious communication barriers occur when patients and providers do not share the same native tongue or professional language (see Chapter 31). Highly technical medical vocabulary may be foreign to patients. Less evident, but perhaps more problematic, are cases in which a patient’s primary language is a dialect of a shared native tongue, such as black vernacular English or Creole. In such cases, the need for translation may not be apparent even though the parties may not fully comprehend each other. Literacy, which entails not only the skill to read or write in a primary language well enough to function in society but also the ability to understand health information provided orally, including instructions for procedures or therapies (see Chapter 15) also has a profound effect on communication between patients and healthcare providers. Health literacy requires the negotiation of explanatory models, and some patients or surrogate decision makers, including those with Durable Power of Attorney authority, may not understand basic physiologic processes well enough to comprehend medical explanations, even when such explanations are presented in lay terms. TERMINAL ILLNESS AND DISCUSSIONS OF PROGNOSIS Discussing death and delivering bad news is not an easy task, even for the seasoned provider. It may require one to confront one’s own mortality or unresolved grief from a personal loss. Communicating difficult news may be particularly problematic for providers who see death not as an inevitable part of life but rather as the failure of the limits of medical skill or technology. As a coping strategy, they may overuse technical language, defer the conversation, or, worse, avoid the patient altogether. Providers who care for large numbers of vulnerable patients may come to view death as a failure of social responsibility or they may worry that communicating bad news may diminish hope. The desire to maintain hope may explain the general tendency for physicians8,9,10,11 to overestimate prognosis by a factor of 3–5. The consequences of these overestimates are serious and may, in part, account for late referrals to hospice when patients have only hours to days, rather than weeks to months, to benefit from quality palliative care. Do we know what and how much patients want to know about their prognosis? Few studies have identified patient preferences regarding information sharing before receiving a terminal diagnosis.12 The question often presumes that patients already know that they have a terminal or potentially fatal condition and that they wish to get a realistic picture of the future. This may be based on a hidden assumption about an “ideal” patient, one who shares the Western ethical precepts of truthtelling and respect for patient autonomy.13 Cultural differences influence preferences about information sharing and the willingness to discuss prognosis. For some, discussing death may be tantamount to wishing it upon the patient. Some families prefer that the patient never know of their condition, and that decision making be carried out by a proxy.14,15 These values and preferences may conflict with those of the provider or others involved in care of the dying patient. The ability for a patient to hear, understand, and accept difficult news may be influenced by patient trust in the provider or the healthcare system. In the case of Mr. Smith, the first intimation of a poor prognosis came early during his admission when asked about his resuscitation preferences by a hurried healthcare provider. Later, receiving the news of his cancer diagnosis from another physician, one with whom he had no prior relationship, increased his suspicions. Had he received the information in a longstanding primary care relationship, his acceptance and understanding might have been different. For some vulnerable persons, access to care is limited, making continuity of care at the level of health services or of providers an unrealistic option and uncoordinated care in resourceconstrained settings more common. In the absence of longterm continuity, compassionate communication is all the more critical. DELIVERING BAD NEWS Clinicians can learn to deliver bad news in a manner that can aid in patients’ acceptance and facilitate their participation in healthcare decisions. Advance preparation is a key prerequisite. Medical facts should be confirmed prior to having the discussion and the providers must be prepared to discuss them in simple language. Every effort should be made to invite not only medical staff but also family or others important to the patient. A six step protocol for delivering bad news, based on the work of oncologist Robert Buckman, has been widely adapted and endorsed16 (see “Core Competency”). By practicing the following steps in advance, the provider can increase his or her own comfort level before facing a difficult situation and, perhaps most importantly, ensure that they will not deliver unwanted information. FAMILY MEETINGS Far too often, when medical information is shared, it is misunderstood, misinterpreted, and confusing to a patient. When bad news is delivered, even in the most clear and compassionate manner possible, the patient may recall very little of what was presented, and what they do remember is often Downloaded 2024218 9:31 A Your IP is 63.247.225.21 inaccurate. a time shock, it is Jeffrey important to have another person present participate Page 3 / 15 Chapter 24:InCare of of thegreat Dying Patient, Stoneberg; Tracy Schrider; LaVeratoM. Crawley in the discussion, take notes, and ask questions. Ideally, McGraw this person be theReserved. surrogate decision one has already been established. ©2024 Hill.would All Rights Terms ofmaker, Use if Privacy Policy Notice Accessibility For those who wish to have multiple family members present and involved in the decision making, then a family meeting would be most useful. What is and, perhaps most importantly, ensure that they will not deliver unwanted information. FAMILY MEETINGS Mount Saint Vincent College Access Provided by: Far too often, when medical information is shared, it is misunderstood, misinterpreted, and confusing to a patient. When bad news is delivered, even in the most clear and compassionate manner possible, the patient may recall very little of what was presented, and what they do remember is often inaccurate. In a time of great shock, it is important to have another person present to participate in the discussion, take notes, and ask questions. Ideally, this person would be the surrogate decision maker, if one has already been established. For those who wish to have multiple family members present and involved in the decision making, then a family meeting would be most useful. What is especially useful in the Buckman protocol described earlier is its adaptability for use in a family setting. It can provide structure to the meeting in a way that establishes order and allows inclusion of all those present. Beginning the meeting with a question probing understanding of the diagnosis and prognosis allows the team to hear from the patient and family in their own words what they understand as the medical problem. Having the patient or family speak first not only shows respect but also establishes the team’s listening role, which is critical in providing care. It also allows the team to deliver the news in a framework informed by the patient’s understanding. Whenever possible and appropriate, it is important to include other members of the interdisciplinary healthcare team. Chaplaincy and social work support can be of tremendous help during the meeting and will help the team to recognize needs that may impact the course of future care. DECISION MAKING AT THE END OF LIFE Treatment options are discussed with Mr. Smith. Although he demonstrates capacity to understand the information given, he is adamant that he does not want to pursue any further treatment. Once his breathing is better, he just wants to go home. A medical social worker encourages him to tell his support network about his illness, but he is reluctant to involve his friends. A central tenet in medical practice is that individuals have the right to autonomous choice in receiving or refusing medical care. This presumes that such choices are intentional, informed, and free of controlling influences.17 However, a range of circumstances that disproportionately affect the vulnerable (e.g., language, education, or literacy barriers; mental disorders; economic constraints) may undermine the ability of providers to understand and assure that the choices are clearly and freely made. Ideally, endoflife decisions should be guided by a person’s values and wishes, and it is important for healthcare providers to learn what these are. Chaplaincy assessment can be invaluable in this regard. Various hospices, palliative care organizations, and providers promote the use of values history forms (http://c.ymcdn.com/sites/www.hospicefed.org/resource/resmgr/hpcfm_pdf_doc/valueshistoryform.pdf) that provide a useful set of exploratory questions such as the following: “What goals do you have for the future?” “How satisfied are you with what you have achieved in your life?” or “What do you fear most?”18 Written for a more general audience, some of the questions in these forms are oriented to life conditions that may not be relevant to the poor, the homeless, refugees, or other vulnerable persons. In these circumstances, rather than asking generally about future goals and past achievements, one might inquire more specifically, “What do you hope for in the near future in regard to living situation, physical comfort, medical conditions, relationships, etc.?” or “Where do you find satisfaction?” An additional ideal is that goals of care and values be documented in a written advance directive, a living will, POLST (Physician’s Order for Life Sustaining Treatment) (http://www.polst.org/), or other formal or legal document. This helps ensure that if patients are unable to speak for themselves, their autonomous wishes nonetheless will be known and carried out. Although Mr. Smith demonstrated capacity to understand the information, should his disease progress, his capacity may diminish. Persons who are deemed unable or incapacitated to make informed endoflife decisions need to have a surrogate decision maker for them. In the absence of an advance directive, designated decision makers could be those closest to the patient. When suitable contacts, family, or legal guardians are available, they may be asked to provide a substituted judgment—one that is based on the wishes of the patient (and not on the surrogate’s wishes). In some cases, there may be no one who can speak for the patient. Social isolation is common among vulnerable patients with serious lifelimiting conditions. A medical social worker may investigate the patient’s support system to identify possible surrogates. Physicians, hospital ethics committees, hospital surrogate decision teams, or courts may need to serve in that role. Without knowledge of the person’s values and wishes, qualityoflife criteria have been applied to decisions based on what is in the best interest of the patient. These determinations can be challenging, at best. For example, consider the case of a young man found unconscious and badly beaten, and without any form of identification. An emergency room evaluation reveals severe nonsurgical brain injury; he is stabilized and admitted to intensive care. Two weeks later, he remains comatose. He also remains a “John Doe” with no known identifiable family members, friends, or social network. What decisions should be made about his care, particularly if his neurologic condition fails to improve and a diagnosis of persistent vegetative state is made? Who should make these Downloaded 2024218 9:31 A Your IP is 63.247.225.21 decisions andCare whose values should guide the decisionmaking process on his behalf? Page 4 / 15 Chapter 24: of the Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Values become a contestable arena for vulnerable patients at the end of life. This is particularly true for decisions involving medically futile interventions, often defined as lifesustaining interventions that lack medical efficacy and lead to little or zero chance of survival.19,20,21 Providers hospital ethics committees, hospital surrogate decision teams, or courts may need to serve in that role. Without knowledge of the person’s values and Mount Saint can Vincent wishes, qualityoflife criteria have been applied to decisions based on what is in the best interest of the patient. These determinations be College by: challenging, at best. For example, consider the case of a young man found unconscious and badly beaten, and without anyAccess formProvided of identification. An emergency room evaluation reveals severe nonsurgical brain injury; he is stabilized and admitted to intensive care. Two weeks later, he remains comatose. He also remains a “John Doe” with no known identifiable family members, friends, or social network. What decisions should be made about his care, particularly if his neurologic condition fails to improve and a diagnosis of persistent vegetative state is made? Who should make these decisions and whose values should guide the decisionmaking process on his behalf? Values become a contestable arena for vulnerable patients at the end of life. This is particularly true for decisions involving medically futile interventions, often defined as lifesustaining interventions that lack medical efficacy and lead to little or zero chance of survival.19,20,21 Providers should not be required to provide services that offer no meaningful benefit to the patient. However, complex decisions require the inclusion of the patient’s personal values in defining what is deemed meaningful. Ultimate decisions regarding the withdrawal or withholding of medically futile interventions may be ethically defensible but still subject to legal challenge. Furthermore, larger societal forces (e.g., poverty, war, and trauma) may have contributed to the conditions that directly or indirectly led to death in the first place. In some cases, dying patients who have lacked access to health care may view discussion of withdrawal or withholding of care a further example of social injustice. In addition to principles of beneficence and nonmaleficence then, other ethical principles—most notably justice and equity—may need to be considered in such endoflife decisions. HEALTH SYSTEM ISSUES While hospitalized, a referral is made for Mr. Smith to be seen by the palliative care consult team to address pain and other symptom management and to help him identify his goals of care. He continues to request full resuscitation if needed but refuses to discuss any other endoflife care options such as hospice. He only wants to return home. To accommodate his wishes, the social worker on the team assists in planning Mr. Smith’s discharge. In light of his debilitated state, several inhome support services are planned. Aware of his increasing dependence on others for his daily needs and his difficulties in getting to any followup medical appointments, the social worker recommends he enroll in a homebased advanced illness management (AIM) program as well as a “mealsonwheels” food delivery service. He declines the AIM referral but welcomes the meal supports. PALLIATIVE CARE SERVICES Quality palliative care—the total active medical, psychological, social, and spiritual care of patients who have received a diagnosis of a serious, life threatening illness—requires a different healthcare system than the acutecare conventional model dominant in most developed nations. Multiple models of palliative care have emerged in the past decade, and palliative care provisions vary by hospital, ranging from consultative services to fully staffed wards. As the benefits of palliative care become clearer, institutional support has increased, although funding remains a challenge.22 In the United States, expanded health coverage with the Affordability Care Act has created the potential for increasing access to endoflife care services. Palliative Care Management of advanced illness includes attention to multiple aspects of a person’s wellbeing. Palliative Care, well established in the United Kingdom since the 1960s and a recognized medical subspecialty in the United States since 2006, focuses on the care of patients with advanced illness with the goal of improving pain and symptom control and enhancing quality of life in all aspects of a person’s life (i.e., physical, emotional, psychosocial, and spiritual). Although its patientcentered, goaldirected approach to care is similar to that of hospice, palliative care is often provided at the same time as curative or diseasemodifying treatment. This can be the best option for patients like Mr. Smith who continue to request full intervention. Palliative care is best offered through an interdisciplinary team composed of physicians, nurse practitioners, registered nurses, chaplains, social workers, and other appropriate staff. Collaboration and teamwork with other disciplines can maximize resources and facilities, encourage innovation, and increase professional satisfaction.23 Successful interdisciplinary teams require planning and effort, yet skills for working across disciplines are not a part of usual healthcare training (see “Core Competency”). In addition, it is essential to foster and maintain ongoing communication and collaboration regarding goals of care with other providers who may not be part of the formal interdisciplinary palliative care team but are nonetheless involved with the patient’s care. Palliative care is most effective when aiding in the management of symptoms and challenges brought on by serious illness or in the transition toward the end of life as the disease progresses and treatment options become more limited. Moreover, as the benefits of palliative care become clearer, efforts are being made to expand its tenets of valueoriented care and enhancing quality of life to longterm chronic disease care long before death is imminent. Figure 241 shows the ideal delivery of care offered at the time of diagnosis with increasing palliation over the course of disease progression Downloaded 2024218 9:31 A Your IP is 63.247.225.21 as curative interventions become less effective. As the field of palliative care grows, there will be continued innovations, including outpatient palliative Page 5 / 15 Chapter 24: Care of the Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley care services that will move this care further upstream. ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Figure 241. involved with the patient’s care. Mount Saint Vincent College by: Palliative care is most effective when aiding in the management of symptoms and challenges brought on by serious illnessAccess or in Provided the transition toward the end of life as the disease progresses and treatment options become more limited. Moreover, as the benefits of palliative care become clearer, efforts are being made to expand its tenets of valueoriented care and enhancing quality of life to longterm chronic disease care long before death is imminent. Figure 241 shows the ideal delivery of care offered at the time of diagnosis with increasing palliation over the course of disease progression as curative interventions become less effective. As the field of palliative care grows, there will be continued innovations, including outpatient palliative care services that will move this care further upstream. Figure 241. Continuum of care. (Adapted from Lynn J. Living long in fragile health: The new demographics shape end of life care. Hastings Cent Rep 2005; Spec No:S14S18.) Clinical Practice Guidelines for Quality Palliative Care Care of the dying requires a multidisciplinary team approach to address the physical, psychosocial, spiritual, and practical needs of patients. A consortium of US hospice and palliative care organizations partnered to develop the National Consensus Project (http://nationalconsensusproject.org/) and establish evidencebased clinical practice guidelines for quality multidisciplinary care.24,25 These guidelines address care issues in the following domains: structures and processes; physical care; psychological and psychiatric care; social aspects; spiritual, religious, and existential issues; cultural aspects; care of the imminently dying patient; and ethical and legal aspects of care (see “Core Competency”). The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is realized through management of pain and symptoms, psychosocial distress, spiritual issues, and practical needs throughout the continuum of care. However, the physical and existential suffering associated with serious and eventually fatal conditions are only one part of the overwhelming stressors with which the vulnerable patient must contend. The guidelines also emphasize the need to share information with the patient and family about changing conditions and treatment options. Language and literacy barriers may make information exchange particularly challenging. Although the gold standard of palliative care strives to ensure genuine coordination and continuity of care across settings, health care for the disenfranchised may be fragmented or delivered in emergency rooms or other clinical settings where time and resources are constrained. Lastly, the guidelines emphasize the value of preparing both the patient and family for the dying process, and for death, when it can be anticipated. However, a disproportionate number of vulnerable persons suffer sudden death, precluding the ability to prepare. These examples illustrate the stark contrast between the goals of palliative care and the realities of the dying vulnerable. HOSPICE CARE SERVICES Hospice care is designed to give supportive care to people in the final phase of a terminal illness and focuses on comfort and quality of life, rather than cure. It can be delivered at home or as an inpatient. It was the first comprehensive model to address the multidisciplinary needs of the dying in a coordinated fashion. Downloaded 2024218 9:31 AStates Your through IP is 63.247.225.21 Although funding in the United the Medicare program has included hospice coverage provisions since 1983, certain requirements can Chapter 24: Care of the Dying Patient, Jeffrey treatments Stoneberg; or Tracy Schrider; M.are Crawley create barriers to its use. For example, curative transfers to theLaVera hospital not covered and eligibility requires a prognosis ofPage likely6 / 15 ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility death within 6 months. New demonstration programs that allow Medicare funding for both curative and palliative care are being piloted in some states in the United States.26 Such systems are already in place in the United Kingdom and other countries. Another limit is that Medicare coverage is geared HOSPICE CARE SERVICES Mount Saint Vincent College Hospice care is designed to give supportive care to people in the final phase of a terminal illness and focuses on comfort and quality ofby:life, rather than Access Provided cure. It can be delivered at home or as an inpatient. It was the first comprehensive model to address the multidisciplinary needs of the dying in a coordinated fashion. Although funding in the United States through the Medicare program has included hospice coverage provisions since 1983, certain requirements can create barriers to its use. For example, curative treatments or transfers to the hospital are not covered and eligibility requires a prognosis of likely death within 6 months. New demonstration programs that allow Medicare funding for both curative and palliative care are being piloted in some states in the United States.26 Such systems are already in place in the United Kingdom and other countries. Another limit is that Medicare coverage is geared toward home care, which presumes that patients have adequate housing and an athome caregiver. Vulnerable patients who are homeless, who live in substandard housing, or who live alone are disadvantaged by this requirement. Many hospitals have developed palliative care services that are available as an adjunct to, or as an alternative to curative care, thus overcoming some of the barriers of hospice eligibility. ADVANCED ILLNESS MANAGEMENT For those patients in the United States who suffer from advanced illness who are receiving disease modifying or curative treatment, do not yet meet the US Medicare standards for hospice admission, or are not yet mentally or spiritually ready to accept hospice, there are emerging programs to provide a level of support that includes a multidisciplinary team approach with attention to comfort and quality of life. They also provide structures to aid in treatment adherence as well as communication between the patient and the medical team. As they are not bound by the same inclusion criteria as hospice or home care, these programs can often assist with more complicated regimens outside of the hospital, such as total parenteral nutrition or management of an outpatient patientcontrolled analgesia device. These specifically trained teams also assist in care and in education and support of endoflife decision making through the transition of decline toward hospice. Innovative programs such as Sutter Health System’s award winning AIM27 and the Hospice of Michigan’s leading edge @HOMe Choices28 programs are emerging throughout the United States. They have been shown to provide highquality care, improve referrals to hospice, and lower costs for patients with advanced illnesses.29 OTHER COMMUNITYBASED PROGRAMS Vulnerability due to homelessness or social isolation can present multiple challenges to patients who might otherwise benefit from hospice or other palliative care services. Alternative systems are needed to address the special needs of these atrisk populations. An example is the partnership between a Mission Hospice and the Ottawa Inner City Health Project that brings costeffective hospice and palliative care directly into homeless shelters. These services allow homeless persons who may be mistrustful of institutional living to receive needed care in more familiar environments.30,31 Potential social isolation of the elderly has been addressed in the Program of AllInclusive Care of the Elderly (PACE) model of care that provides comprehensive services to disabled and nursinghome eligible elderly. Although not considered an endoflife care provider, per se, these community based programs have the benefit of providing continuity care and support to allow vulnerable elders to live outside of institutions. Their success may result from the “allinclusiveness” provision: patients are enrolled for the duration of their life and all medical, social, rehabilitation, psychological, and other services must be obtained through the program. Clarifying patient preferences regarding endoflife care begins at the time of intake and is regularly reviewed as part of the PACE treatment plan. As their enrollees face the end of life, coordinated comprehensive care is available to meet their needs. CLINICAL ISSUES: PAIN AND SYMPTOM MANAGEMENT Mr. Smith is discharged to his room in a boarding facility. Seeing his rapid decline over the ensuing weeks, a friend who resides in his boarding home calls an ambulance to transport him to the hospital. Upon arrival, the paramedics note that Mr. Smith is extremely weak and unable to stand. He is admitted to the hospital. The palliative care team reestablishes contact and does a thorough reevaluation, revealing that his pain has been poorly controlled for the past several days; they institute aggressive pain management. HEALTH SYSTEM BIAS The elderly, poor, and other vulnerable persons are at greater risk of their pain being misdiagnosed, inadequately assessed, or poorly managed compared to patients who are more privileged. In many countries, opiate medications are simply not available to the majority of patients suffering moderate or severe pain.1 In the United States, formularies for less expensive healthcare plans may make accessing some medications, transdermal Downloaded 2024218 9:31 A Your IP is 63.247.225.21 preparations, for example, next to impossible. Physicians may fear regulatory scrutiny from federal and state agencies, or they may worry about drug Page 7 / 15 Chapter 24: Care of the Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley diversion and thus may fail to prescribe opioids for patients with serious pain (see Chapter 38). These fears, along with the lack of physician training, ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility however, do not account for the extent of inequities in pain treatment for minority patients in nursing homes, emergency rooms, cancer centers, and community pharmacies in the United States. Many studies have implicated provider and health system bias directed against racial and ethnic HEALTH SYSTEM BIAS Mount Saint Vincent College Access Provided by: The elderly, poor, and other vulnerable persons are at greater risk of their pain being misdiagnosed, inadequately assessed, or poorly managed compared to patients who are more privileged. In many countries, opiate medications are simply not available to the majority of patients suffering moderate or severe pain.1 In the United States, formularies for less expensive healthcare plans may make accessing some medications, transdermal preparations, for example, next to impossible. Physicians may fear regulatory scrutiny from federal and state agencies, or they may worry about drug diversion and thus may fail to prescribe opioids for patients with serious pain (see Chapter 38). These fears, along with the lack of physician training, however, do not account for the extent of inequities in pain treatment for minority patients in nursing homes, emergency rooms, cancer centers, and community pharmacies in the United States. Many studies have implicated provider and health system bias directed against racial and ethnic minorities as a potential root of these inequities.32 PHYSICIAN BARRIERS Although many physician barriers exist to the implementation of a safe and effective pain regimen, patient and caregiver bias also can contribute to achieving adequate pain control. Some patients may refuse to take certain medications for pain due to their recognition of drugs of abuse within their community, or even because of a prior experience with a particular medication and a perceived poor outcome. For example, patients may refuse to take morphine because their spouse received morphine elixir minutes before their death and they carry a strong belief or fear that the morphine is what caused the end of their life. It is important to identify and address these issues. Furthermore, pain regimens should be kept as simple as possible and the role for each medication explained in a way the patient and caregivers can understand, as this will greatly increase adherence. In addition to concerns with providing adequate pain relief, providers must attend to a range of other constitutional, organ system, and psychiatric symptoms that are part of the underlying disease or that arise during the active dying process. Dyspnea, the awareness of breathlessness, is a common distressing symptom at the end of life that may worsen as death progresses. Although it is a subjective sensation, like pain, it may result from underlying pulmonary, cardiovascular, or renal disease, or may be caused or exacerbated by anxiety. Other common symptoms at the end of life include nausea and vomiting, constipation or diarrhea, anorexia, and dysphagia. Anxiety, delirium, and agitation may also be present because of drugs, metabolic disturbances, infection, or brain lesions. When the causes of any of these symptoms are not apparent or easily determined, further identification of their underlying etiology may be difficult and in some cases unwarranted. For example, patients who are imminently dying should not be subjected to a battery of invasive tests whose results may take days to weeks to return. However, appropriate management of symptoms with the goal of improving the quality of life as well as quality of dying is an absolute, inviolable priority throughout the continuum of care. COMMON PITFALLS Social injustice contributes to early death and increased suffering in poor, underserved, and minority patients. Millions of people worldwide are in need of palliative care at the end of life. Dying in pain and without dignity is considered tantamount to torture. Healthcare providers avoid discussing death or do so in language that is not understood. Cultural and social issues, critical to the lived experiences of vulnerable patients, are often ignored in endoflife discussions. Trustworthiness of providers and institutions, an essential element to these discussions, may be a concern for underserved patients. Dying patients, particularly those from minority groups, are at greater risk for undertreatment of pain and other symptoms. Healthcare providers wait too long before instituting palliative care measures and referring patients to hospice. Palliative care is not widely available to those with longterm, chronic illnesses but who are still pursuing curative care. Patients, families, and healthcare providers are not fully aware of the range of palliative care services and options available to them. APPROACHES TO THE CARE OF THE DYING PATIENT Once Mr. Smith’s pain and other symptoms are adequately managed, the palliative care team discusses his limited prognosis with him. He continues Downloaded 2024218 A Your IP his is 63.247.225.21 to demonstrate capacity9:31 to understand condition and to make informed decisions. He asked the doctor, “What would you do in my situation?” Page 8 / 15 Chapter 24: Care of the Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley The doctor replies Mr. Smith is clearly too weak to return to hisPolicy prior living situation and recommends placement in a skilled nursing facility. ©2024 McGraw Hill.that All Rights Reserved. Terms of Use Privacy Notice Accessibility She also recommends hospice care, and a referral is initiated. Resuscitation status is readdressed, and Mr. Smith agreed that, given his decline, a focus on comfort over aggressive interventions is his preference. A DoNotAttempttoResuscitate order is written and a POLST is completed prior Patients, families, and healthcare providers are not fully aware of the range of palliative care services and options available to them. Mount Saint Vincent College Access Provided by: APPROACHES TO THE CARE OF THE DYING PATIENT Once Mr. Smith’s pain and other symptoms are adequately managed, the palliative care team discusses his limited prognosis with him. He continues to demonstrate capacity to understand his condition and to make informed decisions. He asked the doctor, “What would you do in my situation?” The doctor replies that Mr. Smith is clearly too weak to return to his prior living situation and recommends placement in a skilled nursing facility. She also recommends hospice care, and a referral is initiated. Resuscitation status is readdressed, and Mr. Smith agreed that, given his decline, a focus on comfort over aggressive interventions is his preference. A DoNotAttempttoResuscitate order is written and a POLST is completed prior to his discharge to the nursing facility. He also asks the social worker to inform his friends at the boarding home where he was moving. VALUES CLARIFICATION: PATIENT AND PROVIDER Consumer groups have sought to empower patients to participate in decisions regarding their care. The Five Wishes (available through Aging with Dignity at http://www.agingwithdignity.org/) is one such program, developed to encourage patients to address their medical, personal, emotional, and spiritual values with their family and physicians. Recognized in most states to meet the legal requirement of an advance directive, the five wishes ascertain (1) the patient’s proxy for healthcare decisions; (2) what medical treatment, including life support, the patient wants; (3) desired comfort measures (regarding pain and symptom control); (4) desired care from other nonmedical personnel; and (5) disclosure parameters (i.e., what information can be disclosed and to whom). Perhaps the first step in caring for the dying is for providers to recognize their own mortality and to explore how their life experiences influence interactions with patients. Indeed, personal selfawareness is a critical element in achieving cultural competence. Providers may ask personnel from local hospices or other palliative care organizations for support resources to identify and address their anxieties and fears. Providers with access to more than 320 healthcare facilities around the United States that conduct Schwartz Center Rounds® may wish to avail themselves to their programs, which foster open and honest discussions on the social and emotional issues that arise in caring for patients.33 Clinicians would benefit from asking themselves the questions comprising the Five Wishes. In many family meetings, families will ask the provider, “What would you do?” Providers need to respond to this question with authenticity and appropriate selfdisclosure. They should also become aware of the values they hold regarding the range of ethical issues that might arise in care for the dying. What is their own position regarding such issues as patient autonomy, truthtelling, and disclosure? They should consider how their stance might conflict with persons whose cultural values and preferences differ from their own. For example, it is important that a clinician acknowledge his or her own feelings before facing an immigrant patient’s family who insists that the patient be shielded from a terminal diagnosis. SOCIOCULTURAL COMPETENCE Many hospice and palliative care organizations have felt the impact of changing demographic characteristics (increasing numbers of older, multicultural, and multiethnic populations) and have responded with efforts to increase the cultural competence of the palliative care workforce.34 Providers should become aware of the unique cultural, economic, sociopolitical, and historical backgrounds of the populations they serve. This will contribute to a better understanding of clinical issues, and may provide an opportunity for patients to tell their own story and to feel cared about. It may also enhance the perception of provider trustworthiness, an essential element in the provider–patient relationship. In turn, it is incumbent on the provider to examine negative attitudes they may hold toward certain populations and to strive to eliminate behavior that may be discriminatory. Strategies for culturally appropriate communication are appropriate in the care of vulnerable patients, as well. In general, when language barriers arise, the use of trained medical interpreters is crucial (see Chapter 31). Even when patients and providers share the same language, it is important that the provider make explicit inquiries to check if understanding is present. Often, asking patients to offer their explanatory model of their illness can reveal gaps in health literacy that can then be addressed. CLINICAL COMPETENCE Until recently, the skills needed to manage pain and other distressing symptoms, coordinate care in interdisciplinary teams, communicate effectively with patients and families, and assess grief and loss were not part of standard US medical education. Fortunately, this is changing, as demonstrated by new mandates in many states for continuing education in pain and palliative care as a requirement for physician license renewal. Downloaded 2024218 9:31 A Your IP is 63.247.225.21 Several educational programs have been developed to improve the full range of endoflife care skills and competencies. The American Medical Page 9 / 15 Chapter 24: Care of the Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley Association’s Education Physicians on EndofLife (http://epec.net/) available online, combines multimedia presentations, ©2024 McGraw Hill. All for Rights Reserved. Terms of Care Use (EPEC) Privacy Policy Notice program, Accessibility exercises, and discussions emphasizing communication, ethical decision making, palliative care, psychosocial concerns, and symptom management. Training sessions are available in most major US cities or online. EPEC has been adapted for use in specific populations such as African American or for CLINICAL COMPETENCE Mount Saint Vincent College Access Provided by: Until recently, the skills needed to manage pain and other distressing symptoms, coordinate care in interdisciplinary teams, communicate effectively with patients and families, and assess grief and loss were not part of standard US medical education. Fortunately, this is changing, as demonstrated by new mandates in many states for continuing education in pain and palliative care as a requirement for physician license renewal. Several educational programs have been developed to improve the full range of endoflife care skills and competencies. The American Medical Association’s Education for Physicians on EndofLife Care (EPEC) (http://epec.net/) program, available online, combines multimedia presentations, exercises, and discussions emphasizing communication, ethical decision making, palliative care, psychosocial concerns, and symptom management. Training sessions are available in most major US cities or online. EPEC has been adapted for use in specific populations such as African American or for the elderly35,36 (http://epec.net/adaptations.php). Other educational programs targeting clinicians are also available, such as the American Academy of Hospice and Palliative Medicine selfstudy UNIPAC (http://aahpm.org/selfstudy/unipacs) curriculum. Programs such as EPEC have also been adapted for other healthcare providers. An equivalent educational resource for nurses with international outreach is available through the EndofLife Nursing Education Consortium (ELNEC)37 (http://www.aacn.nche.edu/ELNEC/). The Institute for Palliative Care at California State University in San Marcos has developed a series of training courses for nurses, social workers, and chaplains.38 A Webbased comprehensive database of peerreviewed educational materials is available through the Center to Advance Palliative Care (https://www.capc.org/fast facts/). This includes Fast Facts files: continuously updated, peer reviewed, onepage outlines of key information on important endoflife clinical topics for endoflife educators and clinicians.39 CONCLUSION Mr. Smith died in the nursing home 2 weeks later, surrounded by a hospice chaplain and nurse and a friend from his boarding home. Among the disenfranchised who are at risk for dying anonymously and alone, the need for companionship at the time of death is an important consideration. Personalized programs on palliative and endoflife care for vulnerable population groups are becoming more readily available to maintain patient dignity and provide compassionate care for the dying vulnerable.40 With the advent of the hospice movement over 30 years ago, and more recently, through grassroots, philanthropic, and special interest advocacy, care of the dying has undergone transformation in most developed countries. Globally, there is increasing recognition of palliative care needs as a public health issue.41,42,43 Yet, to date, only 8% of countries have integrated palliative care into their healthcare system.1,44 In the United States, practice guidelines and continuing educational programs are available to improve clinician endoflife care skills and competencies. The unique concerns of the vulnerable dying can be addressed by advocating for reforms in healthcare delivery and for financing that eliminates the barriers to quality care. KEY CONCEPTS Strategies for EndofLife Care for Vulnerable Persons Identified Problems Values clarification Strategies Become aware of personal anxieties and fears regarding death; refer to palliative care teams if necessary and available or seek support from local hospice or other organizations that care for the dying. Complete a living will, Five Wishes, or other advance directive to be aware of concerns patients raise when asked to do the same. Conflicting values Identify personal values regarding ethical principles. Elicit patient’s expectations for care. Identify shared values. Downloaded 2024218 9:31 A Your IP is 63.247.225.21 Chapter 24: Care of the Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Be willing to modify own position to reach a mutually acceptable approach. Page 10 / 15 Conflicting values Identify personal values regarding ethical principles. Mount Saint Vincent College Access Provided by: Elicit patient’s expectations for care. Identify shared values. Be willing to modify own position to reach a mutually acceptable approach. Seek consultation or assistance from other healthcare workers, institutional ethics committee, or community or religious leaders when necessary. Communication: general Be alert for problems, even when patient and physician share the same language or use local dialects. concerns Check explicitly that patient and physician have understood each other. Language barriers Use trained medical interpreters. Links to low literacy and other When possible, avoid using family or friends of patient to translate. languages Caring for specific populations: Increase knowledge of the cultural, economic, sociopolitical, and historical contexts through guidebooks, inequities and social justice community representatives, religious leaders, or professional colleagues. Honestly examine negative attitudes held toward certain populations and strive to eliminate behavior that may be discriminatory. Respectfully inquire about past or present incidents that may have engendered mistrust. Listen to the patient’s story and acknowledge his or her experience. Address issues that the patient identifies as important. Clinical issues Follow clinical practice guidelines developed to improve quality care. Maintain continuing education in pain and palliative care. Encourage interdisciplinary engagement to provide comprehensive care across medical, social, cultural, and spiritual domains. CORE COMPETENCY Delivering Bad News Steps Rationale 1. Setting up: Prepare beforehand Attending to the environment in advance enhances the comfort of all parties and ensures privacy. Downloaded 2024218 9:31 A Your IP is 63.247.225.21 Page 11 / 15 Chapter 24: Care of the Dying Patient, JeffreyDetermine Stoneberg; Tracy Schrider; LaVera M. Crawley in advance who should be present, making sure to include significant members of the patient’s ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility family or social network. Make sure all members from the healthcare team who are present are informed of the goals of the conversation. Mount Saint Vincent College Delivering Bad News Access Provided by: Steps Rationale 1. Setting up: Prepare beforehand Attending to the environment in advance enhances the comfort of all parties and ensures privacy. Determine in advance who should be present, making sure to include significant members of the patient’s family or social network. Make sure all members from the healthcare team who are present are informed of the goals of the conversation. 2. Find out how much the patient and Questions such as “What have you been told about your condition?” and “What is your understanding of their family already knows. what is happening medically for you?” can identify any misunderstandings and assess the patient or family’s comprehension of medical concepts. 3. Find out how much the patient wants Asking “What information would be most helpful to you at this point?” allows you to tailor the to know. conversation to their specific information needs. 4. Deliver the information in a Avoiding medical jargon, share the information requested compassionately and directly (e.g., “I’m sorry to straightforward manner, allowing say that your test results show that the cancer has spread”). adequate time for discussion. 5. Once the news is delivered, give the Do not rush to fill the silence. Allow for sadness, grief, or shock. Offer empathic responses (e.g., “I’m sorry patient time to take it in, and allow for that this isn’t the news we wanted to hear.”) emotional reactions. 6. Lastly, make plans for followup Strategize a plan for future followup. This includes identifying any emotional support needed after the meeting as well as summarizing next steps. Working in Interdisciplinary Teams to Provide Care for the Dying Steps Rationale 1. Identify staff across medical, social, Independent or autonomous management of a case may limit the overall efficiency of care delivery. emotional, and spiritual disciplines that are relevant to patient needs and care goals. 2. Gather these staff members for the Clinical practice guidelines for palliative care assert that comprehensive and timely interdisciplinary purpose of sharing assessments of the assessment of the patient and family should form the basis of the plan of care. patient and/or family needs and to identify an overall plan of care. 3. Minimize hierarchical or power Allowing each person to identify their area of expertise can enhance appreciation by others of their unique differentials in the team. and important contributions to the team. Creating an atmosphere where all persons feel comfortable to talk and share ideas can foster team building. One example is to rotate leadership roles (e.g., leading discussions) to keep all members involved and engaged. 4. Coordinate specific responsibilities for Disciplinary responsibilities may sometimes overlap. Coordinating responsibilities ensures that care plans each team member. are followed through. 5. Encourage ongoing discussion and Regularly scheduled team meetings ensure effective and timely communication about patient needs and collaboration care plans. DISCUSSION QUESTIONS Downloaded 2024218 9:31 A Your IP is 63.247.225.21 Page 12 / 15 Chapter 24: Care of the Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley An McGraw elderly homeless man has a recent diagnosis adenocarcinoma lung. Given the grim prognosis of this disease, what structures and ©2024 Hill. All Rights Reserved. Terms ofof Use Privacy Policyof the Notice Accessibility processes of care are needed to ensure the patient’s quality of life? 5. Encourage ongoing discussion and Regularly scheduled team meetings ensure effective and timely communication about patient needs and collaboration care plans. Mount Saint Vincent College Access Provided by: DISCUSSION QUESTIONS An elderly homeless man has a recent diagnosis of adenocarcinoma of the lung. Given the grim prognosis of this disease, what structures and processes of care are needed to ensure the patient’s quality of life? What ethical principles should be considered in contemplating the Do Not Resuscitate (DNR) status for a patient in a persistent vegetative state if no prior advance directive is available? How might you assess the patient’s values and preferences if he or she is unable to express them? In such cases, which principle, substituted judgment versus best interest, would trump the other in making that decision? How can barriers to hospice referrals and utilization be overcome to make this service more widely available? What alternative delivery models for quality palliative care are available? How can providers and their professional organizations advocate for changes in the healthcare system that meet the needs of dying patients? RESOURCES Aging with Dignity Five Wishes Program: http://www.agingwithdignity.org/5wishes.html. American Academy of Hospice and Palliative Medicine: http://www.aahpm.org/. Center for the Advancement of Palliative Care: http://www.capc.org. End of Life Nursing Education Consortium (ELNEC): http://www.aacn.nche.edu/ELNEC/. EPEC(c): The Education in Palliative and EndofLife Care Curriculum: http://www.epec.net/. Frontline: Being Mortal: http://www.pbs.org/wgbh/pages/frontline/beingmortal/. National Consensus Project: http://www.nationalconsensusproject.org. National Hospice and Palliative Care Organization: http://www.nhpco.org/. REFERENCES 1. World Health Organization, Worldwide Palliative Care Alliance. Global Atlas of Palliative Care at the End of Life. Available at http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf?ua=1. Accessed June 2, 2014. 2. Brennen F. Palliative care as an international human right. J Pain Symptom Manage 2007;33(5):494–499. [PubMed: 17482036] 3. Committee on Economic, Social and Cultural Rights (CESCR) General Comment 14, para. 25. Available at http://www.ohchr.org/Documents/Issues/Women/WRGS/Health/GC14.pdf. 4. MacWilliams J, Bramwell M, Brown S, O’Connor M. Reaching out to Ray: Delivering palliative care services to a homeless person in Melbourne, Australia. Int J Palliat Nurs 2014;20(2):83–88. [PubMed: 24577214] 5. Moore G, Manias E, Gerdtz MF. Complex health service needs for people who are homeless. Aust Health Rev 2011;35(4):480–485. [PubMed: 22126953] 6. Song J, Bartels DM, Ratner ER, Alderton L, Hudson B, Ahluwalia JS. Dying on the streets: Homeless persons’ concerns and desires about end of life care. J Gen Intern Med 2007;22(4):435–441. [PubMed: 17372789] 7. Hanratty B, Holmes L. Social inequality in dying. In: Oliviere D, Monroe B, Payne S, eds. Death, Dying, and Social Differences. New York: Oxford University Press; 2011:19–31. Downloaded 2024218 9:31 A Your IP is 63.247.225.21 8. Warm 24: EJ. Fast Concepts #30: Prognostication ed). AvailableLaVera at http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_030.htm. Page 13 / 15 Chapter CareFacts of theand Dying Patient, Jeffrey Stoneberg;(2nd Tracy Schrider; M. Crawley ©2024 McGraw All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Accessed June 2,Hill. 2014. 9. Glare P, Virik K, Jones M et al. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ 26 2003;327(7408):195– 6. Song J, Bartels DM, Ratner ER, Alderton L, Hudson B, Ahluwalia JS. Dying on the streets: Homeless persons’ concerns and desires about end of life Mount Saint Vincent College care. J Gen Intern Med 2007;22(4):435–441. [PubMed: 17372789] Access Provided by: 7. Hanratty B, Holmes L. Social inequality in dying. In: Oliviere D, Monroe B, Payne S, eds. Death, Dying, and Social Differences. New York: Oxford University Press; 2011:19–31. 8. Warm EJ. Fast Facts and Concepts #30: Prognostication (2nd ed). Available at http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_030.htm. Accessed June 2, 2014. 9. Glare P, Virik K, Jones M et al. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ 26 2003;327(7408):195– 198. [PubMed: 12881260] 10. Lamont EB, Christakis NA. Complexities in prognostication in advanced cancer: “To help them live their lives the way they want to”. JAMA 2003;290(1):98–104. [PubMed: 12837717] 11. Zibelman M, Xiang Q, Muchka S, Nickoloff S, Marks S. Assessing prognostic documentation and accuracy among palliative care clinicians. J Palliat Med 2014;17(5):521–526. [PubMed: 24720384] 12. Schattner A. What do patients really want to know? QJM 2002;95(3):135–136. [PubMed: 11865167] 13. Davis AJ. The bioethically constructed ideal dying patient in USA. Med Law 2000;19(1):161–164. [PubMed: 10876312] 14. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. JAMA 1995;274(10):820–825. [PubMed: 7650806] 15. Lapine A, WangCheng R, Goldstein M, Nooney A, Lamb G, Derse AR. When cultures clash: Physician, patient, and family wishes in truth disclosure for dying patients. J Palliat Med 2001;4(4):475–480. [PubMed: 11798479] 16. Buckman R. How to Break Bad News: A Guide for Health Care Professionals. Baltimore, MD: Johns Hopkins University Press, 1992. 17. Beauchamp TL, Childress JF. Respect for Autonomy. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press, 2012:57–104. 18. Doukas DJ, McCullough LB. The values history: The evaluation of the patient’s values and advance directives. J Fam Pract 1991;32:145–153. [PubMed: 1990042] 19. McCabe MS, Storm C. When doctors and patients disagree about medical futility. J Oncol Pract Jul 2008;4(4):207–209. [PubMed: 20856774] 20. Jox RJ, Schaider A, Marckmann G, Borasio GD. Medical futility at the end of life: The perspectives of intensive care and palliative care clinicians. J Med Ethics Sep 2012;38(9):540–545. [PubMed: 22562948] 21. Wilkinson D, Savulescu J. Knowing when to stop: Futility in the intensive care unit. Curr Opin Anaesthesiol 2011;24(2):160–165. [PubMed: 21293267] 22. Hanratty B, Holmes L. Social inequality in dying. In: Oliviere D, Monroe B, Payne S, eds. Death, Dying, and Social Differences. New York: Oxford University Press, 2011:19–31. 23. Grant, RW, Finnocchio, LJ. California Primary Care Consortium Subcommittee on Interdisciplinary Collaboration. Interdisciplinary collaborative teams in primary care: a model curriculum and resource guide. San Francisco: Pew Health Professions Commission, 1995. 24. National Consensus Project Task Force. Clinical Practice Guidelines for Quality Palliative Care (2nd Edition). Available at http://www.nationalconsensusproject.org/Guideline.pdf. Accessed June 5, 2014. 25. Herman C. National Consensus Project Updates Palliative Care Guidelines. Aging Today Online. Available at http://asaging.org/blog/national consensusprojectupdatespalliativecareguidelines. Accessed June 2, 2014. 26. Dooley DS. California State Health Care Innovation Plan. Available at http://www.chhs.ca.gov/PRI/CalSIM%20State%20Health%20Care%20Innovation%20Plan_Final.pdf. Accessed May 18, 2014. Downloaded 2024218 9:31 A Your IP is 63.247.225.21 Page 14 / 15 Chapter 24:for Care of the & Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley 27. Centers Medicare Medicaid Services. Health Care Innovation Awards. Available at http://innovation.cms.gov/initiatives/HealthCare ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility InnovationAwards/California.html. Accessed June 1, 2014. 28. Hospice of Michigan. At Home Choices. Available at http://www.hom.org/ourservices/athomechoices/. Accessed June 1, 2014. Mount Saint Vincent College 25. Herman C. National Consensus Project Updates Palliative Care Guidelines. Aging Today Online. Available at http://asaging.org/blog/national Access Provided by: consensusprojectupdatespalliativecareguidelines. Accessed June 2, 2014. 26. Dooley DS. California State Health Care Innovation Plan. Available at http://www.chhs.ca.gov/PRI/CalSIM%20State%20Health%20Care%20Innovation%20Plan_Final.pdf. Accessed May 18, 2014. 27. Centers for Medicare & Medicaid Services. Health Care Innovation Awards. Available at http://innovation.cms.gov/initiatives/HealthCare InnovationAwards/California.html. Accessed June 1, 2014. 28. Hospice of Michigan. At Home Choices. Available at http://www.hom.org/ourservices/athomechoices/. Accessed June 1, 2014. 29. Ciemins EL, Stuart B, Gerber R, Newman J, Bauman M. An Evaluation of the Advanced Illness Management (AIM) Program: Increasing hospice utilization in the San Francisco Bay area. J Palliat Med Dec 2006;9(6):1401–1411. [PubMed: 17187548] 30. Gehlert S, Moro T. Palliative care with vulnerable populations. In: Altilio T, OtisGreen S, eds. Oxford Textbook of Palliative Social Work. New York: Oxford University Press, 2011. 31. Podymow T, Turnbull J, Coyle D. Shelterbased palliative care for the homeless terminally ill. Palliat Med Mar 2006;20(2):81–86. [PubMed: 16613403] 32. Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare. Washington, DC: National Academies Press, 2003. 33. Schwartz Center Rounds®. Available at http://www.theschwartzcenter.org/supportingcaregivers/schwartzcenterrounds.aspx. Accessed May 24, 2014. 34. Crawley LM, Marshall PA, Lo B, Koenig BA. Strategies for culturally effective endoflife care. Ann Intern Med May 7 2002;136(9):673–679. [PubMed: 11992303] 35. EPEC Adaptations. Available at http://epec.net/adaptations.php. Accessed April 18, 2014. 36. EPEC Education in Palliative and Endoflife Care. Available at http://epec.net. Accessed April 18, 2014. 37. EndofLife Nursing Education Consortium (ELNEC). Available at http://www.aacn.nche.edu/elnec. Accessed May 9, 2014. 38. California State University at San Marcos. Courses for Professionals. Available at http://www.csupalliativecare.org/programs/index.html. Accessed May 18, 2014. 39. Fast Facts and Concepts. Available at https://www.capc.org/fastfacts/. Accessed February 17, 2015. 40. McCreaddie M. Communication, information, and support. In: Oliviere D, Monroe B, Payne S, eds. Death, Dying, and Social Differences. New York: Oxford University Press, 2011:45–56. 41. Sallnow L, Kumar S, Kellehear A. International perspectives on public health and palliative care. New York: Routledge, 2012. 42. Crawley LM. Racial, cultural, and ethnic factors influencing endoflife care. J Palliat Med 2005;8(Suppl 1):S58–S69. [PubMed: 16499470] 43. Cohen J, Deliens L. A Public Health Perspective on End of Life Care. New York: Oxford University Press, 2012. 44. Economist Intelligence Unit. The quality of death: Ranking endoflife care across the world. Available at http://www.lifebeforedeath.com/pdf/Quality_of_Death_Index_Report.pdf. Accessed June 2, 2014. Downloaded 2024218 9:31 A Your IP is 63.247.225.21 Chapter 24: Care of the Dying Patient, Jeffrey Stoneberg; Tracy Schrider; LaVera M. Crawley ©2024 McGraw Hill. All Rights Reserved. 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