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Bast RC Jr, Kufe DW, Pollock RE, et al., editors. Holland-Frei Cancer Medicine. 5th edition. Hamilton (ON): BC Decker; 2000.

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Holland-Frei Cancer Medicine. 5th edition.

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Chapter 73Palliative Care

, MD and , MD.

Palliative care is an emerging specialty focusing on the management of symptoms that interfere with quality of life. It is an interdisciplinary model of care and is defined by the World Health Organization (WHO) Expert Committee of the Cancer and Palliative Care Unit as “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families.”1 The need for palliative care may occur at any time in the cancer patient’s illness. Control of symptoms and psychological support are important aspects of active disease-oriented therapies. For the patient whose tumor has not responded to tumor-directed treatment, symptom control and quality of life are central aspects of end-of-life care. Some authors have used the term “supportive care” to describe symptom control and treatment of side effects in a continuum of curative and palliative therapies. They define supportive care as concern with the optimal well-being of the cancer patient in all stages of disease.2 The Multinational Association of Supportive Care in Cancer was founded in 1991 with the goal of improving supportive care in cancer through mutual education and cancer research. There are numerous national and international associations of palliative care (e.g., The American Academy of Hospice and Palliative Care Medicine). For the purposes of this chapter, palliative care is defined broadly to include patient care from diagnosis to death.

In the United States, 1,400 cancer patients die each day, and 50% of American patients diagnosed with cancer will eventually die of their disease. The WHO Cancer and Palliative Care Unit strongly recommends that palliative care be an integral part of all national cancer control programs, recognizing that palliative care plays different roles for different countries. For example, in developing countries with limited resources and limited medical care, patients with advanced cancer should at least have access to adequate treatment of pain and other disabling symptoms. In developed countries, such as the United States, the WHO proposes a more integrated approach. Many countries, including Great Britain, France, Canada, Australia, Japan, and the Philippines, have made palliative care an integral aspect of their government-supported cancer control programs. In this way, they have demonstrated a strong commitment to addressing the care of the dying. In the United States, increased attention has focused on the inadequate provision of humane compassionate care at the end of life. A recent Institute of Medicine report outlines the problems, explores the issues, and provides a series of recommendations arguing strongly for the need to improve the care of the dying3(Table 73.1).

Table 73.1. Institute of Medicine Recommendations for End-of-Life Care.

Table 73.1

Institute of Medicine Recommendations for End-of-Life Care.

The curative model has been ingrained in the institutional culture of cancer care in the United States. As noted by Billings and Block, “The culture of the academic health center remains highly invested in ‘aggressive’ treatment of terminal disease and the notion that death represents medical failure, and tends to neglect psychosocial issues in illness. These messages constitute a ‘hidden curriculum’ that undermines many of the attitudes that form the basis for effective and compassionate care of the dying.”4 Palliative care inpatient teams improve outcomes for cancer patients compared with the outcomes of conventional care in many areas, including the amount of time spent at home by patients, satisfaction of patients and their caregivers, symptom control, the number of in-hospital days, overall cost, and the likelihood of dying in the locale preferred by the patient.5 These data suggest that a clarification of the role of the oncologist as a provider of total care, both curative and palliative, would represent a significant advance in the delivery of competent and compassionate cancer treatment.

End-of-life care for cancer patients is perhaps better defined than it is for other common causes of death in the United States such as cardivoscular disease ad dementia. This chapter adresses the importance of palliative care as a fundamental aspect of cancer and the need for broad professional and public education to make palliative care a priority. This field is rapidly evolving with the development of specialized inpatient palliative care units, specially fellowships, faculty scholar development awards, and specially organization. Both the American Medical Association and the American Board of Internal Medicine have recently developed initiatives in continuing education for physicians in practice and competency criteria for residents-in-training.6,7

The Role of the Oncologist

In 1998, the American society of Clinical Oncology (ASCO) Task Force on Cancer Care at the End of Life developed a statement strongly supporting the need to provide excellent end-of-life care for patients with cancer. The task force identified key barriers, including inappropriate attitudes of patients and health-care professionals toward death, ineffective communication, fragmentation of care, unrealistic expectations in treatment options, and lack of knowledge and education about palliative care on the part of health-care professionals. In order to remove these barriers, ASCO emphasizes "a human system of cancer" care based on the following principles:

1.

Cancer care is centered around the longstanding and continuous relationship between the primary oncologist (or other physician with training and interest in end-of-life care) and the patient.

2.

Cancer care is responsive to the patient’s wishes and to the parents’ wishes if the patient is a child.

3.

Cancer care is based on truthful, sensitive, empathic communication with the patient, and in the case of pediatric patients, that care is both family-centered as well as child-focused.

4.

Cancer care optimizes quality of life throughout the course of an illness through meticulous attention to the myriad physical, spiritual, and psychosocial needs of the patient and family.8

For many patients. the medical oncologist is often the primary provider of cancer treatment and is therefore in a unique position to coordinate not only the delivery of antitumor therapies but also the wide range of care when cure is not possible. Cherny and Catane9 argue strongly for oncologists to develop expertise in end-of-life care and have divided the role of the medical oncologist into the following areas: preventative oncology, diagnostic evaluation, communication, symptom control, optimization of social supports, and care of the dying patient.

Communication is vital to the development of a relationship between the treating oncologist and the patient and family. Communication regarding treatment options, prognosis, advanced directives, and patient and family support must be intergrated into the oncologist's management of the patient from the time of diagnostic evaluation. A major tenet of the practice of palliative medicine is that the physician will remain involved in every aspect of a patient's care upto and beyound the moment of death. If properly communicated, this promise will assure the patient that the physician will not abandon him or her should antitumor therapies fail, but will provide vigilant attention ti symptom control and quality of life for the patient and support for the family in every stage of illness.

Communicating with cancer patients and their families, particularly in the setting of advanced disease, may be hampered by lack of physician training in communication with dying patients. Fallowfield and colleagues reported that among 178 oncologists who attended a recent course on communication skills, fewer than 35% had received any previous communications training. Although time, experience, and seniority alone had not improved their skills prior to the course, 95% of the physicians in attendance reported significant changes in their clinical practice following the seminars. In addition, 75% began to teach other faculty memebers what they had learned about communication.10

Breaking Bad News

One of the greatest challenges oncologists face is knowing when and how to tell the patient and the family that the treatments are not working, and that the patient is dying. This is a stressful task that requires skill and sensitivity. Patients’ requirements for knowledge vary greatly.11 For some patients, candid supportive discussion enables participation in the planning of their remaining time until death while for others, the news comes as a crushing blow from which they do not have the coping resources to recover. For the latter patients, truth can be an assault.12 Buckman has outlined protocols (Table 73.2) for breaking bad news and for effective patient communication. They include the following elements:13

Table 73.2. Guide to Communication Skills.

Table 73.2

Guide to Communication Skills.

1.

The setting should be private and quiet. The patient should have the opportunity to invite other significant family members to join in the discussion. The physician should sit at or below the eye level of the patient.

2.

Ascertain the patient’s current level of knowledge and how much the patient wants to know, and share information consistent with the patient’s desire for knowledge. When patients say that they know nothing at all, or when there is a major discrepancy between their impression and the actual facts, this may indicate that they wish to maintain their coping mechanism of denial.

3.

Respond to the patient’s feelings. Supportive and empathic listening skills are critical in this interaction. The quality of the physician-patient relationship, and whether it will be a supportive one is largely determined by the way in which the oncologist responds to the patient’s feelings in this sort of dialogue.

4.

Organize and plan. Buckman suggests reviewing the patient’s problem list, distinguishing between remediable and nonremediable problems, proposing therapeutic solutions to solvable problems, identifying and re-inforcing the patient’s coping resources, and identifying other sources of support that can be integrated into the care plan.

Symptom Management

Control of pain and other physical symptoms, of psychological issues, and of existential distress are the major goals of palliative care. Portenoy and colleagues have developed a validated tool to assess symptom prevalence, intensity, and frequency, and to evaluate the impact of these symptoms on patients’ quality of life.14 Using the Memorial Symptom Assessment Scale. They reported that among 246 patients receiving active treatment, independent of tumor type, 40 to 80% experienced pain, drowsiness, dry mouth, insomnia, lack of energy, or psychological distress. The mean number of symptoms per patient was 11.5.15 Multiple surveys of cancer patients have demonstrated a high prevalence of pain, fatigue, weakness, dyspnea, delirium, nausea, vomiting, adjustment disorders, depression, and anxiety.16–18 The prevalence of symptoms in cancer patients 4 weeks and 1 week before death is shown in Table 73.3.19 The management of pain and the psychiatric complications of cancer are thoroughly discussed elsewhere. Dyspnea, nausea and vomiting, and delirium are briefly considered in the following section.

Table 73.3. Prevalence of Symptoms Volunteered by Advanced Cancer Patients*.

Table 73.3

Prevalence of Symptoms Volunteered by Advanced Cancer Patients*.

Dyspnea

Dyspnea is a major symptom that commonly increases in prevalence in dying patients. The prevalence of dyspnea in the cancer patient with advanced disease varies between 29 and 74%.20 It is frequently one of the most difficult symptoms to treat, and for many patients, there may be no more frightening sensation than that of air hunger. The causes of dyspnea in cancer patients are outlined in Table 73.4.21

Table 73.4. Causes of Dyspnea in Cancer Patients.

Table 73.4

Causes of Dyspnea in Cancer Patients.

Both antitumor and palliative therapies are available and often need to be combined. Treatment of dyspnea must in part be dictated by the underlying cause. For example, chemotherapy, radiation therapy,or surgery may be the most helpful in providing lasting relief if the symptom is caused by tumor. Raduitherapy may relieve a blocked bronchial passage after a single treatment22 and may be useful not only as an antitumor agent but also in the pallation of breathlessness. The majority of cases of superior vena cava obstrucion are seen in lung cancer patient(75%) although the conditions may be seen in patients with lymphoma and breast or other chest tumors.23 The extrinsic compression of the large veins to the heart, causing impaired venous return, soft- tissues swelling, cerebral congestion, and possibly microembolism, should be treated aggressively as an oncologic emergency. Corticisteroids should be implemented early to manage the localilzed edema and improve respiratory comfront.24 Radiotherapy and chemotherapy may also be very useful in shrinking the tumor mass that led to the obstruction.

Palliative approaches to dyspnea include the use of bronchodilators,corticosteroids, intravenous morphine, nebulized morphine, and sedation if the patient is imminently dying. Low-dose intravenous morphine is the treatment of choice, with the goal of striking a balance between the patient's level of comfort and sedation.

Nausea and Vomiting

The National Hospice Study found that nausea and vomiting occurred in 62% of cancer patients in the last 6 months of life.25 The management of these symptoms requires vigilant attention to the patient’s environment, as well as likely pharmacologic intervention. Avoidance of bothersome food and perfume odors and the provision of fresh air, small portions of food, and distractions in the form of conversation, music, or television all may be helpful in alleviating these symptoms. In addition, there are multiple antiemetics that may be very beneficial although the prescribing clinician must observe the patient closely for the development of possible side effects. Algorithms for the management of intractable vomiting in the dying patient have been published and include surgical intervention when appropriate, the use of percutaneous draining gastrostomies, a reduction in oral intake, and a variety of medications for symptomatic relief, among other interventions. Nasogastric tubes should be avoided.26 Useful medications may include opioid analgesics, antiemetics, corticosteroids, and continuous subcutaneous infusion of octreotide (0.3–0.6 mg/24 h).27 Octreotide, a somatostatin analogue, reduces the volume of gastrointestinal secretions by decreasing the secretion of water, sodium, and chloride and by stimulating the absorption of water and other electrolytes.28

Delirium

Delirium is common in patients with advanced cancer at or near death. In one series, 75% of patients dying of cancer developed delirium.29 Symptoms include a waxing and waning level of consciousness, disturbance in the sleep-wake cycle, disorientation, visual or auditory hallucinations, and memory and language disturbances. Several assessment scales have been developed, including the Delirium Rating Scale, which is a 10-item clinician-rated measurement.30 Delirium is most commonly due to complications of cancer such as treatment side effect, infection, poor nutrition, etc. The primary disease may also be responsible, either at the primary site or as a result of metastases to other organs. Management generally involves discontinuing all medications that are not absolutely necessary, especially psychoactive drugs. Haloperidol, starting at 0.5 mg b.i.d., is the drug of choice; it may be titrated upward safely for clinical effect. Other useful neuroleptic drugs include chlorpromazine, risperidone, and olanzapine. Careful attention to the evaluation of common symptoms and the applications of detailed specific algorithms is described in palliative care textbooks.1,31,32

Suffering in the Patient, Family, and Physician

In addition to meticulous attention to symptom assessment and mangement, an appreciation of the suffering of the cancer patient as distinct from his or her disease or other distressing symptoms (e.g.,pain) is of paramount importance. Cherny and colleagues have defined suffering as "an aversive emotional experience characterized by the perception of personal distress that is generated by adverse factors undermining the quality of life."33 Cherny and colleagues have developed a taxonomy of factors that may contribute to distress among patients,families, and physicians. These factors are presented briefly in Tables73.573.673.7

Table 73.5. Factors Contributing to Patient Distress.

Table 73.5

Factors Contributing to Patient Distress.

Table 73.6. Factors Contributing to Distress in Family Members.

Table 73.6

Factors Contributing to Distress in Family Members.

Table 73.7. Factors Contributing to Distress among Health-Care Providers.

Table 73.7

Factors Contributing to Distress among Health-Care Providers.

Caring for dying patients may be particularly stressful for medical oncologists whose professional goals and intellectual engencies have been spent seeking curative therapeies34Table 73.8A survey of 81 general practitioners in France found that 86% agreed that encounters with death were a cause of physician suffering35 In that study, the major causes of physician suffering were (a) the ending of the doctor-patient relationship(58%), (b) Feeling of uselessness(55%) and failure(38%), (c) increased awareness of the physician's own mortality (49%), and (d) the presence of questions without answers(31%). At the beside of the dying patient, the feelings most commonly reported by the physicians in that study were sadness (94%), helplessness(89%), failure (61%), disappointment(59%), and loneliness(51%). Eric Cassel explains: "Suffering is experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity. Suffering can include physical pain but is by no means limited to it. The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick."36

Table 73.8. Contributing Factors to Physician Distress in the Care of Dying Patients.

Table 73.8

Contributing Factors to Physician Distress in the Care of Dying Patients.

Cassem described nine features required of physicians in the care of dying patients:37

1.

Clinical competence. Adequate training and experience in the management of pain and other symptoms that are widely prevalent in terminally ill cancer patients is critical. Patients have a reasonable right to expect from the medical oncologist a high level of clinical competence in the care of the dying.

2.

Compassion. Demonstrating compassion acknowledges that what is happening to the patient is of critical importance not only to the patient but also to the physician and assures the patient that the physician will not abandon him or her in the final hours of life.

3.

Comfort. Adequate relief of physical and psychological symptoms must be provided.

4.

Communication. Talking with dying patients reaffirms their ongoing worth as living human beings and provides an opportunity to identify concerns and problems that can and should be addressed. Communication is more than verbal; a hand on the shoulder, a hand to hold, a wave, a smile, and, on occasion, an embrace communicate care and concern.

5.

Visits from children. Visits from child relatives re-inforce the continuity of the personhood of the dying patient and are a potential source of significant consolation and pleasure.

6.

Family cohesion and integration. By facilitating the support of family members for one another, feelings of being a burden are mitigated, and the potential for improved relations (when necessary) can be enhanced.

7.

Cheerfulness. Dying persons have no particular desire for depressed and doleful company. At the other extreme, inappropriate flippancy or frivolity that is insensitive to the mood and situation of the patient can increase a dying person’s feeling of isolation. The physician or other visitor should take the cue from the patient.

8.

Consistency and perseverance. Dying patients have a realistic fear of abandonment and isolation. Regular visits or telephone contact provide reassurance of continued support and concern. Cassem points out that patients are quick to identify those who show interest at first but gradually disappear from the scene.

9.

Equanimity. Clinician nervousness undermines patient security. Clinicians who display composure in the presence of a dying person convey reassurance to both the patient and the family.

Guidelines in the Care of the Dying Patient

In recent years, multiple guidelines have been developed to assist physicians in the care of dying patients.1,32,34,38–44 All of the guidelines are predicated on the following assumptions: (1) patients who are dying are living human beings, and there is an ethical imperative to offer care and to provide adequate relief of suffering; (2) dying patients should not be subjected to ineffectual primary cancer treatments that are causing further distress; (3) all patients have a right to adequate relief of physical and psychological symptoms and to social support; and (4) all patients have the right to care that allows them the best possible life given the constraints of the prevailing circumstances.34

A recent study identified five domains that from the patient perspective are considered critical to assuring quality end-of-life care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones.45 Competent care of the dying patient requires a dedicated multidisciplinary team with expertise in the delivery of palliative care services. Such a team includes a physician, a nurse clinician, a social worker, a case manager, and a pastoral counselor if indicated.

Medical Decision Making

For patients to make appropriate decisions, they need to know the facts of their illness, yet many patients are ambivalent about learning such information. Current data suggest that patients’ knowledge of their prognoses will directly impact on their medical decision making.46–48 Increased attention to the care of the dying patient has focused on the need to improve communication about decisions at the end of life. In a survey of patients admitted to a palliative care service, patients reported a preference to discuss end-of-life care issues with their families rather than with their doctors for fear that their physicians might give up too soon.49 Chochinov and colleagues reported that knowledge of prognosis did not necessarily have an impact on dying patients’ degree of hope.50 Further study of the impact of information on the patient’s coping abilities and quality of life is central to facilitate better end-of-life care. Addressing advance care planning, the role of a do-not-resuscitate order, and the understanding of and desire for the withholding and withdrawal of care, are critical elements in the competent care of dying patients.

The Patient Self-Determination Act guarantees the right of patients to determine the kinds of medical care they will and will not accept should they lose the capacity to participate in decision making by virtue of disease progression or any other cause.51 If this contingency arises, the presence of the advance directive substantially reduces the burden of decision making for the patient's preferences are respected. Patients should be encouraged to prepare a written advance directives, and to discuss their wishes with their physician and family.

Close attention to symptom management and quality of life should be an integral part of patient care from the time of diagnosis. However, critical to the care of the dying patient is a transition from a curative to a palliative approach. As patients are transitioned from curative therapies to symptomatic treatments and possible alternative living arrangements(e.g., hospice placement), there is a renewed opportunity to estblish the goals of care. This is best accomplished by arranging a family meeting, if appropriate, to set these goalsand to develop strategies for their implementation. Ideally, this should be done before an emergency arises.

Role of Nutrition and Hydration

The provision of artificial nutrition and hydration is a controversial topic. In patients who are facing imminent death, there are no data to support or negate a benefit from these interventions. Some authors suggest that cessation of intravenous fluids decreases pulmonary secretions and coughing and reduces the need for suctioning.32 Similarly, there are no data to support the proposition that enteral or parenteral nutrition makes patients more comfortable at the moment of death. Hypodermoclysis (e.g., 500–1,500 mL/24 h) has been reported to reduce delirium in a palliative care population.52 For some families, there is great symbolic meaning to the provision of food and water, and the withholding and withdrawal of such support may be associated with feelings of guilt or abandonment. Some authors have equated refusal of nutrition with suicide53 although cachexia and anorexia in dying patients is most often multifactorial and calls for not only a detailed medical assessment but also a full understanding of the relevant psychosocial factors. Open discussion of this difficult issue is critical to assure comfort for patients and their families.54,55 Sensitivity to cultural and religious beliefs and practices is essential. In all cases, religious beliefs or culturally based reservations regarding the discontinuation of nutritional support should be discussed and respected. The current national ethical and legal guidelines support the patient’s right to refuse artificial nutrition and hydration and support withdrawal in those patients who are no longer competent but who previously expressed their wish not to receive such interventions.

Options for the Care of the Dying Patient

Many patients and their families prefer that care be delivered at home rather than in an institutional setting.56 In the setting of disease progression and increasing care needs, patient and family attitudes regarding preferred place of death frequently change.57 Contingency plans for inpatient respite care or ongoing care and for what would trigger admission to a hospice are critical. Current options for the care of the dying patient include hospital, home, home care programs, home or inpatient hospice, and nursing home. Multiple models have been developed for the delivery of care to dying patients. The Memorial Sloan-Kettering Cancer Center (MSKCC) model is a nurse-centered palliative care model that provides 24-hour expertise to patients with complex medical and psychosocial problems at home.58 The Cleveland Clinic has developed an inpatient palliative care unit attached to an outpatient home care and hospice unit,59 and the North Shore Hospital Oncology Division provides chemotherapy, supportive therapy, and palliative care via a mobile van.60 The Medicare hospice benefit is a capitated system of care. The availability of hospice services varies widely from state to state in the United States and from country to country.

A study to identify reasons for admitting terminally ill cancer patients to the hospital found that the two major reasons were the requirement of special medical and nursing care unavailable in the home (40%) and the need to provide care for some patients with no family or friend support(27%).61 A recent study of the quality of life of 182 terminal cancer patients in two palliative care units compared with that of terminal cancer patients in the general hospital found that patients in the specialized palliative care units showed less indirectly expressed abger, more positive feelings, and less anxiety about isolation; however. they had more anxiety about death than those cared for in an acute cae ward.62 Whether in a palliative or acute care ward. adequate private provisions should be made for the patient and family.

Sedation in the Imminently Dying

For the vast majority of cancer patients, even in the setting of terminal disease, close adherence to established symptom management guidelines will provide symptom relief. Balancing symptom control while maintaining full consciousness is sometimes difficult to achieve in dying patients.63 Recent controversy has focused on the role of sedation in the care of the dying, with some authors suggesting that it is a form of “slow euthanasia.”64 However, The U.S. Supreme Court strongly endorsed sedation in the imminently dying as appropriate palliative care and distinguished it from physician-assisted suicide and euthanasia65,66 (see below). Many have argued that sedation is a standard of good palliative care and is ethically valid, being derived from the principle of “double effect.” This principle supports the use of medication that may risk respiratory depression to the point of death if such doses are required for symptomatic relief.67 The major tenet of double effect is that there is a critical distinction between a foreseen but unintended outcome and a primary intended outcome. The primary intention is relief of suffering although foreseen but unavoidable consequences may result in sedation or death.

The offer of sedation as an available therapeutic option is often received as an empathic acknowledgement of the degree of the severity of patient suffering. When sedation is desired by a patient who is already receiving an opioid for pain or dyspnea, an attempt is usually made first to escalate the opioid dose. Although some patients will benefit from this intervention, inadequate sedation or the development of neuroexcitatory side effects such as myoclonus or agitated delirium often necessitates the addition of a second agent. A benzodiazepine drug with a short half-life, such as midazolam or lorazepam, is generally preferred.68,69 Rarely, benzodiazepine drugs can cause a paradoxical agitation; in such instances, the use of barbiturates may be helpful.70 Drugs used to control intractable symptoms should be titrated accord to the distress and level of consciousness of the patient. Continuous infusions rather than bolus injections are preferable to prevent acute rebound or breakthrough pain, dyspnea, or agitation. Ventafridda and colleagues reported that 50% of patients followed in an Italian home-based palliative care program required sedation to control intractable symptoms.71

Oncology centers need to develop guidelines for the use of sedative agents in the management of dying patients. Such guidelines must include the parameters for the choice of drug and dosage and a titration method correlated to symptom assessment and individualized to the major symptom complex. Dose titration without clear indications should not occur, to protect the professional and moral integrity of all involved. Family members may pressure the clinical staff to hurry the process of dying for the patient. The staff should directly address these requests with a family conference to define the goals of care and the role of sedation in providing comfort, not in hastening death. Some patients may linger for days or weeks in sedation or after the withdrawal of life support. Increased attention should focus on supporting the family and the staff throughout the dying process. Families need to be assured that the patient is not suffering, and the staff needs to clearly define how they are assessing the quality of care.

Recent data on patients requiring sedation have demonstrated that patients who received morphine during withdrawal of ventilatory support lived longer than those who did not receive morphine, suggesting that morphine protected the patients from the acute stressors of critical illness.72 In studies comparing patients who were sedated for symptom control versus those who were not—in both hospital and home-based palliative care units—there were no significant differences in the patients’ time to death nor any correlation between the opioid dose and time of death. Furthermore, the opioid doses commonly used to sedate critically ill patients are significantly lower than the doses used to treat pain in postoperative patients.

In short, sedation in the imminently dying patient occurs in a complicated and challenging clinical setting. Surveys of physicians, nurses, and specialty physician groups suggest that clinicians are uncertain about the application of legal and ethical guidelines and about the role of sedation in the care of imminently dying patients.73,74 Physicians who lack knowledge about the use of analgesics and sedative agents in such patients may confuse their lack of knowledge and experience with their ambivalence about the role of sedation in patient care. Open discussion about these unique challenges and the acknowledgement of ambivalence are essential in order to care competently for dying patients.

Spiritual Needs

The competent practice of palliative care medicine includes exploration of the patient’s spiritual concerns.75 One author developed a systematic approach by suggesting that caregivers explore (a) spiritual suffering (interpersonal and/or intrapsychic anguish of unspecified origin), (b) inner-resource deficiency (diminished spiritual capacity), (c) belief system problems (lack of conscious awareness of a personal meaning system), and (d) religious requests specifically expressed by dying patients.76 The hospital chaplain and/or local clergy can play a critically important role not only in the care of dying patients but also as a source of support for the family and sometimes for the team of caregivers.

Facing Death

The role of the oncologist at the bedside of the dying patient is to provide adequate pain relief for the patient and support for grieving family and friends. The physician should attend not only to the patient’s symptoms to assure comfort at the moment of death but also to the family’s grief and suffering. Families vary in the degree of professional support and guidance they require. It is the obligation of the oncologist to understand and be sensitive to the particular needs and dynamics of the patient’s family and to provide that level of care that would be most helpful at such a difficult and sad time. Some families may be grateful for the constant presence of the physician; others may prefer privacy with the knowledge that the physician is available (though in the background) in accordance with the family’s particular needs. Physicians should ascertain whether family members wish them to be present.

It is important for families to know what to expect when the patient is imminently dying, particularly in regard to agonal respirations and the frequent pooling of pharyngeal secretions often called the “death rattle.” Atropine can be useful in drying the secretions, which can be a source of significant distress to family members at the bedside. If it is clear that death is imminent, it is often appropriate to indicate this to the family, with the reassurance that the patient appears comfortable. The clinician should tell the family when death has occurred and offer support and condolences. Some families may need to talk and cry at the bedside of the dead person, kissing or hugging him or her. Adequate provision for time and privacy should always be made.

Personal contact with the family who has suffered loss of a loved one is often helpful not only for the family but also for the treating physician. All members of the care team may require some degree of emotional recuperation and may benefit from meeting together to review the patient’s life, illness, and death, to express emotions, and to address any outstanding issues or concerns. The opportunity to assure a comfortable and dignified death and sensitivity and kindness toward the grieving family may provide not only permanent meaning for the family but an incomparable sense of usefulness and reward for the clinician. If the physician is not present at the time of death, families find great meaning in receiving cards or telephone calls expressing condolences.

A Legal Mandate for Palliative Care

The U.S. Supreme Court has firmly established the right of patients to have their life-sustaining medical treatment withheld or withdrawn.77 In 1996, the Court addressed two additional fundamental questions: is there a constitutional right to assistance in suicide, and is the right to refuse treatment the same as the right to receive assistance in committing suicide?78 In Compassion in Dying versus Washington, the plaintiff argued that the state’s law prohibiting physician-assisted suicide (PAS) should be overturned, based on a violation of the liberty clause of the Fourteenth Amendment to the U.S. Constitution.65 The plaintiff claimed that a person has a fundamental right to determine the time and manner of his or her own death, and because of this “liberty interest” in securing this right, the state law making PAS illegal is unconstitutional. In Quill versus Vacco in the State of New York, the plaintiff cited the equal-rights clause of the Fourteenth Amendment to argue that laws against PAS deny equal protection to all dying patients.66 Dr. Quill, who had publicly acknowledged assisting a patient in suicide,79 argued that withholding or withdrawing life-sustaining treatment is synonymous with PAS, and since the former is legal, the latter must be as well making New York’s law prohibiting PAS unconstitutional.

Regarding the Washington case, the Court ruled that there is no fundamental constitutional right to assisted suicide, stating, “We certainly gave no intimation that the right to refuse treatment could be somehow transmuted into a right to assistance in committing suicide.”80 In the New York case, the Court upheld the right to refuse care as entirely distinct from the receipt of a lethal prescription. Justice O’Connor wrote, “The parties and amici agree that in these States a patient who is suffering from a terminal illness and who is experiencing great pain has no legal barriers to obtaining medication, from qualified physicians, to alleviate that suffering, even to the point of causing unconsciousness and hastening death.”81 In the opinion of one constitutional legal scholar, by authoritatively supporting the role of sedation in the imminently dying as distinct from assisted suicide, the Court supported a constitutional right to palliative care.82

At the present time, PAS is permitted in Oregon and is illegal in 49 states. A recently published study regarding the stability of attitudes regarding PAS and voluntary euthanasia (VE) among oncologists, oncology patients, and the general public revealed that up to one-third of the participants changed their views over a 6- to 12-month period.83 Physician opposition to PAS and VE increased over time when faced with patients with unremitting pain, suggesting an increasing awareness of the importance of competent pain control and symptom management in dying patients. While the ASCO would neither condemn nor condone PAS in their statement on cancer care at the end of life, its task force noted, “The most important response to the PAS debate is to take every responsible measure to assure that all physicians are well trained in optimal end-of-life care and to remove all barriers to delivery of such care.”8

Conclusion: The Need for Education and Training in End-of-Life Care

The American Medical Association's Graduate Medical Education Report for 1993 noted that only 26% of United States residency programs offered a formal course in end-of-life care. Only five United States medical schools offered as sepeate required course in the care of dying patients.84 Despite some notable exceptions,85 the opportunities for palliative care education are most often hidden in other courses, offered as electives, provided only in lecture format, and frequently provided only in the preclinical years. There have been no national standards proposed by accrediting organizations for medical education in end-of-life care. In one study of medical students after completion of their third-year clerkships, 41% were never present when an attending physician talked with a dying person, 35% never discussed with an attending physician how to deal with a terminally ill patient, 73% had never been present during a surgical rotation when a surgeon had to tell the family bad news after an operation, and one-third could not identify problems that would be encountered by a family when a dying relative was discharged to home.86,87 A recent survey of medical school deans revealed that while 89% of medical schools offer some formal teaching in the subject, only 11% offer full-term courses, and 30% offer one or two lectures as part of another course. In 83% of the courses, the lecture is the primary format.88

In a recently published review of end-of-life care in four medical textbooks—Harrison's Principles of Internal Medicine, 13th ed.; the Merck Manual, 16th ed.; Scientific American Medicine on CD-ROM, 1994 ED.; and theWashington Manual of Medical Therapeutics, 28th ed.—Carron and colleagues reviewed the chapters on 12 leading causes of death in the United States, paying particular attention to the coverage of end-of-life issue.89 The authors of this study note, "Throughout the textbooks, grankness about death was strikingly absent.... Sometimes dead persons were termed'nonsurvivors.' Often, the physician was vaguely advised that 'supportive care is all that can be offered at this point." of note, the editors of the Merck Manual and of Scientific American Medicine responded to this study by lauching improvement efforts in this area. Reviewers of the end-of-life care content in 50 medical textbooks(including the 4th edition of Cancer Medicine,among six oncology texts) gave the highest ratings for coverage to texts in family medicine, psychiatry, and geriatrics. The lowest rating were in textbooks on qcquired immunodeficiency syndrome (AIDS), surgery, neurology, and oncology.90 The text were analyzed for the presence of various domains of end-of-life care, including epidemiology, natural history, symptom management, psychological issues,ethics and law, physicians' responsibilities, and physicians' roles.

The World Health Organization has challenged training institutions to ensure that palliative care is

1.

compulsory in courses leading to a basic professional qualification;

2.

accepted as suitable subject testing by examination boards;

3.

recognized by universities and professional bodies as an appropriate subject for study, dissertations, certificates, diplomas, and advanced degrees;

4.

included in postgraduate programs of continuing professional education; and recognized as an appropriate subject for scholarships, fellowships, and

5.

grants by academic institutions and research-funding bodies.1

Responding to urgent need for improvement in end-of-life care, The American Board of Internal Medicine has identified core competencies expected of board-certified internists in the care of dying patients ( (Table 73.9).

Good care of the dying requires mastery of the emerging science of palliavtive medicine, a dedication to further research, and a compassionare concern for patient care at each stage of illness. Palliative care at its best is concerned not with death but with life until they die, care for and supported by competent clinnicians. In its recent document entitled "Insureing Quality Care." The National Cancer Policy Board recommendations for quality end-of-life care and suported the development of a focused national effort to improve the care of the dying cancer patient.91

Table 73.9. ABIM Physician Competencies for the Care of Dying Patients.

Table 73.9

ABIM Physician Competencies for the Care of Dying Patients.

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