Dying and Palliative Care

Dying and Palliative Care

The management of the dying patient is the focus of many ethical issues in medicine in general and neurology in particular. Ethical issues arise frequently in the care of dying and critically ill patients because technological advances in life-sustaining therapies have introduced new questions, particularly how, when, and for whom these therapies should be administered. Life-saving technologies are marvelous when they succeed in restoring a critically ill patient’s health and function. But when they fail, paradoxically they may worsen the care of dying patients, especially when they interfere with the provision of good palliative care.

In this chapter, I consider ethical issues surrounding management of the dying patient and focus on how to optimize the patient’s palliative care. I discuss the goal of a “good death,” explain how the principles of palliative care can achieve it, and discuss the barriers preventing physicians from implementing it. I conclude with a discussion of palliative sedation, the principal ethical controversy in palliative care. I discuss the related subjects of refusal of life-sustaining therapy, patient refusal of hydration and nutrition, physician-assisted suicide, euthanasia, and medical futility in subsequent chapters in this section.


During the past century in the United States, we have witnessed enormous changes in the demographics of dying. In the 19th century, most Americans died at home under the care of family members, as a result of acute illnesses, particularly infections. Today, by contrast, most Americans die in hospitals or nursing homes, isolated from their families. They usually die as a result of a progressive, chronic illness following a period of failing health. The change in the demographics of dying results partly from the marked increase in the average life expectancy of Americans over the past century, steadily increasing from approximately 49 years at the turn of the 20th century to approximately 77 years at the turn of the 21st century. The increase in mean longevity is a consequence of fewer deaths in infancy; improvements in public health, preventive health, and nutrition; successful treatment of infections and other acute illnesses; and advances in workplace safety. Most Americans now can look forward to a long life terminated by a chronic illness.1

The change in the demographics of dying in America also reflects a profound sociological phenomenon: the growth of the technological, professional, and institutional process of the care of the dying.2 In our time, the care of dying patients largely has been relegated to institutions and away from families and homes. Thus, approximately 80% of Americans now die in hospitals or nursing homes whereas a century ago an institutional location for death was uncommon.3

The reasons for this phenomenon reflect the prevailing American societal attitudes about dying. First, we embrace a technological and interventionalist imperative: we value the use of
technology to extend our lives as long as possible. This attitude is evidenced in the greater utilization of diagnostic testing, surgery, intensive care unit treatment, chronic hemodialysis, chemotherapy, and other life-sustaining interventions by Americans as compared to other cultures.4 One cultural explanation for the technological imperative is the quintessential American heroic-positivist philosophy of medicine that celebrates the intrinsic value of action and preferentially values “doing something” rather than nothing, even if that something is not beneficial or even harmful.5

Second, our culture is “death-denying.” Daniel Callahan observed that our culture treats death “as a kind of accident, a contingent event that greater prevention, proven technology, and further research could do away with.” He notes further that Americans, compared to people in other cultures, show “an unwillingness to let nature take its course” that in many cases tragically leads to “death in a technological cocoon.”6 In her famous book On Death and Dying, Elizabeth Kubler-Ross outlined some of the psychological reasons for the contemporary phenomenon of denying death.7 Robert Burt explained how American cultural factors also shape our public policies about death and dying.8

Third, our prevailing attitude is that death should be “medicalized.” We believe that the messy process of dying and the frightening event of death are handled best by trained professionals within institutions, not by family members at home.9 Although there is evidence that these attitudes now are changing with the rise of the palliative care and hospice movements,10 the care of the dying patient remains largely consigned to institutions. Despite our institutionalization of death and dying, polls of Americans of all ages consistently reveal that 90% of people say they would prefer to be cared for at home during the last six months of their lives.11 One study, however, surveying community-dwelling elderly patients about their preferred site of death found 48% chose the hospital, 43% preferred home, and 9% were unsure.12 These findings may indicate that the proximity of death in the elderly generates a more realistic concern about stresses on family members caring for a dying patient at home. This concern may lead some patients to prefer to die in the hospital. Family members of patients who died at home report more favorable dying experiences than family members of institutionalized dying patients, who are more likely to report unmet needs for symptom control, physician communication and emotional support.13 Programs have been established to optimize palliative care within long-term institutions.14

Prevailing practices in hospitals largely shape the end of life for dying inpatients. In an ethnographic study of dying in American hospitals, Sharon Kaufman found that hospitals organized dying through acculturated behaviors that shaped medical practices. She found that shared medical rhetoric frames decision making about dying patients and cultural factors shape the way death occurs in the hospital, even governing which patients whom physicians and nurses consider to be dying. Today, death usually is orchestrated by professionals in hospitals and no longer is waited for, a transition that has markedly shortened the “waiting time” for dying. Hospital procedures and bureaucracy produced an imperative to “move things along,” mandating health-care professionals to expedite decision making and produce the conditions for death. The American hospital system and the social processes of American hospital subculture shape the end of life for dying inpatients.15


Implicit in the optimal care of the dying patient is an understanding of the physiology of dying. Some of the conceptual errors made by lay people and the treatment errors made by medical professionals stem from their failure to understand the important physiological differences between the dying patient and the healthy patient. The physiology of dying has not been the subject of many recent investigations but enough scientific information is known to make a few rational recommendations.

Involution of thirst and hunger is a normal part of the dying process. The reduction in thirst and hunger drives result from a gradual reduction in gastrointestinal peristalsis and a
decrease in intravascular volume.16 A well-meaning but poorly informed physician who observes that a patient dying of widely metastatic cancer is not eating and drinking “normally” (in comparison to what would be expected for a healthy person) may consider treating the patient by inserting a nasogastric feeding tube and infusing tube feedings, or inserting an intravenous line and infusing crystalloid hydration. However, these measures could create discomfort to the patient in addition to the direct discomfort of the tubes themselves. Forced nutrition in the presence of diminished peristalsis produces nausea and vomiting. Forced hydration in the presence of a diminished plasma volume produces fluid overload, pulmonary edema, and dyspnea. Thus, well-meaning but misdirected attempts to compensate for the normal reduction of food or fluid intake in dying patients paradoxically increase their discomfort.

Indeed, studies of patients dying in hospices who have refused food and water clearly show that, despite progressive dehydration, inanition, and weight loss, dying patients experience little or no suffering from feeling parched nor do they have a marked sensation of thirst or hunger.17 Proper mouth care to keep the lips moist helps preserve mouth comfort in dying patients.18 Understanding these few physiological principles helps guide physicians providing palliative care to prescribe only those measures that will contribute to dying patients’ comfort.


Several studies and case reports of the quality of dying in hospitals 19 and published personal anecdotes by affected family members recounting the horrors of the deaths of hospitalized loved ones20 attest to the unfortunate reality that the dying experience of many hospitalized patients is far from ideal. Many patients receive unwanted life-sustaining treatment and other aggressive therapy, but fail to receive adequate palliative care. Similarly, most children who die in the hospital die in the intensive care unit (ICU) following a prolonged hospitalization during which they received aggressive rather than palliative therapy.21 These studies and anecdotes portray dying hospitalized patients trapped in a medical system that ignores their wishes and victimizes and degrades them, while failing to provide basic human contact and comfort. These studies and anecdotes clearly reveal cases of bad deaths. What then constitutes a good death?

To answer this question, Karen Steinhauser and colleagues conducted a series of focus groups with health-care workers, dying patients, and family members of recently deceased patients. They identified six common components of a good death as perceived by these interviewees. First, there should be adequate management of pain and other distressing symptoms of dying. The confidence of dying patients that they will not suffer adds immeasurable comfort to their final days. Second, to the fullest extent possible, the patients should remain in control of decision making with their thinking unclouded by medications. The assurance that physicians will permit them to remain in control also is comforting. Third, they should be adequately prepared for the event of death. They need to know what to expect so they can plan accordingly. Fourth, they need the opportunity for personal completion. Completion encompasses spirituality and meaning at the end of life, life review, spending time with family, resolving disagreements, and saying good-bye. Fifth, they need the opportunity to contribute to the well-being of others. This contribution can be in the form of a gift, time spent, knowledge and wisdom imparted, or volunteered participation in a clinical trial or other research study for the good of others. Sixth, they need affirmation as a whole and unique person. They want to be treated not as a disease but as a person in the context of their lives, values, and preferences.22

In a similar vein, Daniel Callahan offered a personal reflection on the qualities of a peaceful death. It should be meaningful. The dying patient should be treated with respect and sympathy. The patient’s death should matter to others. Patients should not be abandoned by family or friends. The patient should not be an undue burden on others. Our society should not dread death but accept it. The patient
should remain conscious as long as possible. The death should occur quickly and not be drawn out. There should be minimal pain and suffering.23 These two sets of characteristics of a good death create reasonable goals for a program of palliative care of the dying patient.

Elizabeth Vig and colleagues surveyed terminally ill men about their views on good and bad deaths. They found consensus in the obvious desire to avoid suffering and die in one’s sleep if possible, but variability in their responses about whether other people should be present and where patients prefer to die. The authors advocated an individualized approach: each patient’s view of what constitutes a “good death” should be used to plan terminal arrangements to assure that they conform with the patient’s wishes.24


The modern history of palliative care is relatively short. Until the 20th century, the diagnosis and treatment of the dying patient always had been part of traditional medicine. For example, in his famous text, The Principles and Practice of Medicine (1892), Sir William Osler described in detail the recognition of the terminal stages of various diseases and their management. Over a decade later, Osler published a series of 486 sequential deaths he personally studied at the Johns Hopkins Hospital, detailing the symptoms and signs of death and treatments that helped comfort the dying patient.25 As the 20th century progressed, however, and medical textbooks became increasingly scientific, there was a commensurate reduction in the emphasis on the diagnosis and treatment of the dying patient. Until recently, most contemporary textbooks of internal medicine and neurology contained little mention of the care of the dying patient.26 Similarly, medical society treatment practice guidelines for life-limiting diseases offered little guidance in end-of-life care.27 Some physicians continue to record their personal experiences treating dying patients28 including dying physicians.29

Although some institutions dedicated to care of the dying patient have operated for a millennium, the modern palliative care movement began in 1967 with the founding of St. Christopher’s Hospice in London by Dame Cicely Saunders.30 The first freestanding American hospice was founded in Connecticut in 1974. Hospice philosophy, according to Saunders, is holistic, encompassing adequate symptom control, care of the patient and family as a unit, the use of an interdisciplinary approach, the use of volunteers, providing a continuum of care including home care and continuity of care across different settings, and follow-up on family members after death.31

Hospice philosophy quickly spread across the United Kingdom, the United States, Canada, and other developed countries. In 1982 in the United States, Medicare began offering a hospice benefit through Medicare Part A that reimbursed approved hospices for care of dying patients. A Medicare beneficiary electing the hospice benefit must be diagnosed as terminally ill, which means the patient’s life expectancy is judged by a physician to be under six months.32 The Medicare hospice benefit includes a range of non-curative medical benefits and medical and support services, many of which would not be covered otherwise, including physicians’ services, nursing care, pharmaceuticals, medical appliances, short-term hospitalization, services of homemakers and health aides, physical, occupational, and speech therapy, psychological counseling, and social services.33 Physicians continue mostly to refer dying cancer patients to hospice; approximately 89% of enrolled hospice patients have cancer.34 By 2004, more than 3,200 hospice programs in the United States cared for more than 900,000 patients.35

Although Dame Cicely Saunders was a physician, much of the hospice movement was developed by nurses and volunteers. In a parallel development, much of hospice’s philosophy and many of its goals were incorporated into a new branch of medicine called palliative medicine. Physicians in England and Canada spearheaded this movement and developed palliative care services in hospitals primarily treating dying cancer patients. The pioneering
palliative care service at the Royal Victoria Hospital in Montreal was opened in 1975 by Dr. Balfour Mount, who coined the term “palliative medicine.” Currently, over 20% of American hospitals have palliative care units or services.36

Palliative medicine comprises most but not all elements of hospice philosophy.37 The two disciplines differ in their patient domains. Hospice provides palliative care to dying patients. Palliative medicine widens its focus to also include patients suffering from chronic illnesses to attempt to reduce their symptom burden and improve their quality of life. In neurology, palliative medicine has been applied not just to patients dying of ALS and malignant gliomas but also to patients chronically ill with multiple sclerosis, Parkinson’s disease, Alzheimer’s disease, muscular dystrophy, and epilepsy.38 One palliative practice merits particular attention because of its ethical and legal implications: the opioid treatment of patients with chronic pain not caused by cancer.39 The American Academy of Neurology Ethics, Law & Humanities Committee published a practice advisory for neurologists asserting that treatment of such patients falls within the scope of neurological practice and outlining the ethical responsibilities neurologists have to diagnose and treat such patients properly.40

The palliative care movement now is an established branch of organized medicine.41 There are numerous textbooks on palliative medicine,42 five journals specializing in palliative medicine or palliative care,43 numerous courses at medical society meetings teaching palliative medicine, and courses on palliative medicine directed to medical students44 and house officers. Palliative medicine is an accredited medical specialty in the United States.

Within the field of neurology, special issues of the Journal of Neurology 45 and Neurologic Clinics46 have been devoted to palliative care in neurology and a comprehensive textbook on that topic was published by Oxford University Press.47 The American Medical Association developed a training program in palliative medicine called Education for Physicians on End-of-Life Care (EPEC) that functions as a “train the trainer” course. The goal of EPEC is to educate every practicing physician in the United States on the principles of palliative medicine. EPEC has been converted to an independent organization organized through Northwestern University that charges a fee for its educational services.48 Similar excellent teaching information is available at several free websites.49 In 2008, the American Board of Medical Specialties plans to offer a subspecialty certificate in hospice and palliative medicine to neurologists through the American Board of Psychiatry and Neurology.


The World Health Organization defined palliative care in 1982 as “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families.”50 In a similar vein, one of the leaders of the field, Neil MacDonald, defined palliative medicine in 1991 as “the study and management of patients with active, progressive, far advanced disease, for whom the prognosis is limited and the focus of care is the quality of life.”51 In 2002, the World Health Organization amended their definition to “Palliative care is an approach which improves quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”52

Palliative care addresses the quality of life, not its quantity. Palliative care affirms life and strives to help patients live as actively as possible until death. The intent of palliative care is neither to lengthen nor shorten life but to allow the patient’s inevitable death to occur with the least suffering and the greatest meaning. The goal of palliative care, in short, is to maximize the quality of the patient’s remaining life and to permit a good death, as outlined
previously. The principal distinction between palliative medicine and hospice care is that whereas the latter is generally limited to dying patients, the former is applicable also to patients with progressive, incurable illnesses.53 Thus, most of the principles of palliative medicine are applicable to the majority of patients living with chronic neurological diseases.54

I identify 10 cardinal principles of palliative medicine and palliative care:

  • Palliative care, like hospice, is not a building, department, or program but is an approach to patient care embodying an attitude to improve the quality of the patient’s remaining life. This principle highlights one difficulty in its implementation: that physicians need to alter their conceptualization of their professional responsibility to dying patients by replacing the traditional curative model of treatment with a palliative care model.55 Thus, physicians need to accept that they have an important professional responsibility in managing the dying patient and actively helping their patient experience a good death. They need to learn to value the time they spend on improving their patient’s quality of life by attending to small details that may seem clinically inconsequential (bowel care, for example) but can produce great improvements in the patient’s quality of life. They also should try to learn to derive satisfaction from knowing that their medical intervention improved the quality of the patient’s remaining life and death.

  • Physicians need to acquire a working technical knowledge of opiate, benzodiazepine, and barbiturate pharmacology, and training in the ordering of pharmacological and other measures to suppress distressing symptoms in dying patients. Palliative medicine requires knowledge of the right drug, in the right dosage, with the right dosage interval, and through the right route of administration. Physicians need to understand pharmacological concepts such dose-response curves, time-action curves, and the development of tolerance to drugs. For management of patients on ventilators, this pharmacological knowledge should include the use of neuromuscular blocking drugs to induce paralysis. Treatment of pain is of particular importance. Physicians needs to know that, contrary to opinion, oral or parenteral dosages of opioid drugs that are adequate to palliate pain do not accelerate the moment of death.56 Textbooks of palliative medicine can be consulted for specific treatment regimens recommended to suppress other unpleasant symptoms of dying patients, such as nausea56a, cough, hiccups, dyspnea,57 agitation, confusion,58 anxiety, anorexia, fatigue,59 constipation, and xerostomia.60

  • Physicians need to address the psychological, emotional, and spiritual needs of the dying patient. Depression and anxiety require identification and treatment in a palliative care plan. Depression is common in dying patients61 and along with demoralization (morbid existential distress)62 frequently contributes to their decisions to withdraw treatment or request physician-assisted suicide.63 The issue of dying patients’ spiritual needs usually encompasses their search for the meaning of their lives in the face of death. Many dying patients can make their lives whole by completing this spiritual journey, and thereafter face their death with serenity and peace.64 This process of spiritual growth during dying can be transcendently meaningful.65 Chaplains, families, and friends can help provide spiritual support. Alan Astrow and colleagues pointed out that to care for a person, the physician must first learn to be a person, thus physicians should cultivate and deepen their own spiritual lives.66

  • Physicians should try to identify and relieve all sources of suffering, in addition to those produced by pain, depression, and anxiety. Suffering is an intensely personal, existential experience that also encompasses anguish, fear, apprehension, helplessness, hopelessness, despondency, dependency, and meaninglessness. In his monograph, Eric Cassell pointed out that the treatment of patients’ suffering is the primary goal of medicine. Suffering is the final common pathway of all negative physical,
    psychological, and spiritual human experiences. The essence of suffering is the perception of a threat to the integrity of the person.67 Other common sources of suffering in dying patients include exhaustion, anhedonia, cachexia, unpleasant odors, helplessness, and loss of dignity.68 Max Chochinov described what he calls “dignity-conserving care” as the essence of palliative care.69 He and his colleagues found that dying patients’ perceived loss of dignity was correlated to their psychological and symptom distress, heightened dependency, and loss of the will to live.70 Although existential suffering may not be immediately amenable to palliative care, not all patients’ existential concerns cause suffering.71

  • Palliative medicine uses a team approach to the care of the patient. In many hospitals, palliative care is provided by an interdisciplinary care team led by a palliative care physician. The team should freely request consultations from colleagues in other fields who can contribute specialized knowledge. Thus, for example, anesthesiologists and neurosurgeons may be helpful in suppressing intractable pain while maintaining normal consciousness by using indwelling intraspinal opiate pumps. Physical, occupational, and speech therapists can help improve motor and communicative function. Social workers can help optimize interactions with the family. Chaplains can address spiritual and religious needs. Nurses can address the needs of the whole patient and help integrate the care team. Despite the desirability of a team approach, each member of the team should retain a personal ethical responsibility and accountability to the patient.

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Aug 2, 2016 | Posted by in NEUROLOGY | Comments Off on Dying and Palliative Care
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