Palliative treatments of last resort: choosing the least harmful alternative. University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel

Comprehensive palliative care, as exemplified by many state-of-the-art hospice programs, is the standard of care for the dying. Although palliative care is very effective, physicians, nurses, patients, families, and loved ones regularly face clinically, ethically, legally, and morally challenging decisions throughout the dying process. This is especially true when terminally ill patients are ready to die in the face of complex, difficult-to-treat suffering and request assistance from their health care providers. Although physician-assisted suicide has received the most attention as a potential last-resort response, this practice remains illegal in the United States except in Oregon, and even there it is relatively infrequent. More commonly, decisions are made about accelerating opioid therapy for pain, foregoing life-sustaining therapy, voluntarily stopping eating and drinking, and administering terminal sedation in response to unacceptable suffering. The moral distinctions between these practices are critical to some but relatively inconsequential to others. This paper illustrates, through summaries of real clinical cases, how each of these practices might be used in response to patients in particular clinical circumstances, keeping in focus the patient's values as well as those of families, other loved ones, and health care providers. The challenge is to find the least harmful solution to the patient's problem without abandoning patients and their loved ones to unacceptable suffering or to acting in a more deleterious way on their own.     

Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine

When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death want reassurance that they can escape if their suffering becomes intolerable. In addition, a small percentage of terminally ill patients receiving comprehensive care reach a point at which their suffering becomes severe and unacceptable despite unrestrained palliative efforts; some of these patients request that death be hastened. This paper presents terminal sedation and voluntary refusal of hydration and nutrition as potential last resorts that can be used to address the needs of such patients. These two practices allow clinicians to address a much wider range of intractable end-of-life suffering than physician-assisted suicide (even if it were legal) and can also provide alternatives for patients, families, and clinicians who are morally opposed to physician-assisted suicide. This paper will define the two practices, distinguish them from more standard palliative care interventions and from physician-assisted suicide, illustrate them with a real clinical scenario, provide potential guidelines and practicalities, and explore their moral and legal status. Although medicine cannot sanitize dying or provide perfect answers for all challenging end-of-life clinical problems, terminal sedation and voluntary refusal of hydration and nutrition substantially increase patients' choices at this inherently challenging time.     

The role of guidelines in the practice of physician-assisted suicide. University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel

Oregon has legalized and implemented physician-assisted suicide, while observers argue about the moral import of attempting to formulate guidelines; the utility any set of guidelines can have for physician practice, health care providers, patients, or families; and whether guidelines can really protect against harm or abuse. What were once theoretical questions have taken on new urgency. The debate over the value and power of guidelines includes the following questions: What has been the experience of efforts to implement physician-assisted suicide using consensus guidelines? What goals are guidelines intended to serve? Who should formulate guidelines? What features should be reflected in any proposed guidelines to make them practical and to permit achievement of their goals? Are there any fundamental obstacles to the creation or implementation of guidelines? Is dying a process that is amenable to direction under guidelines, be they issued by physicians, departments of health, blue ribbon panels, or other regulatory bodies? This paper explores these questions as physician-assisted suicide becomes legal.     

UK geriatricians' attitudes to active voluntary euthanasia and physician-assisted death.

AIM: To describe the views of British geriatricians on active voluntary euthanasia and physician-assisted death. METHOD: Postal questionnaire to 742 consultant members of the British Geriatrics Society. RESULTS: 81% considered active voluntary euthanasia never to be justified ethically, although 23% supported legalization in some situations and 13% would be willing to administer active voluntary euthanasia in some situations. With regard to physician-assisted death, 68% opposed it on ethical grounds and 24% supported its legalization in some instances, with 12% stating they would be willing to provide such assistance in some situations. Free text comments frequently cited good palliative care as an important response to such issues in clinical practice.     

Physician-assisted suicide

Medical professional codes have long prohibited physician involvement in assisting a patient's suicide. However, despite ethical and legal prohibitions, calls for the liberalization of this ban have grown in recent years. The medical profession should articulate its views on the arguments for and against changes in public policy and decide whether changes are prudent. In addressing such a contentious issue, physicians, policymakers, and society must fully consider the needs of patients, the vulnerability of particular patient groups, issues of trust and professionalism, and the complexities of end-of-life health care. Physician-assisted suicide is prominent among the issues that define our professional norms and codes of ethics. The American College of Physicians-American Society of Internal Medicine (ACP-ASIM) does not support the legalization of physician-assisted suicide. The routine practice of physician-assisted suicide raises serious ethical and other concerns. Legalization would undermine the patient-physician relationship and the trust necessary to sustain it; alter the medical profession's role in society; and endanger the value our society places on life, especially on the lives of disabled, incompetent, and vulnerable individuals. The ACP-ASIM remains thoroughly committed to improving care for patients at the end of life.     

Physician-assisted suicide

Tremendous debate surrounds the acceptability of physician-assisted suicide in the United States. Progress requires carefully mapping the relationship of this practice to termination of life-sustaining treatment, appropriate pain relief and palliative care, and euthanasia. Arguments that have been offered in favor of permitting physicians to aid suicide include the importance of patient autonomy, the claim that patients need this option to cope with symptoms at the end of life, and the assertion that practices already accepted involve intentionally ending life. Arguments that have been offered against include the potential for abuse, the claim that forbidding intentional killing is essential to the ethics of medicine, and the assertion that patients can be provided good and humane care at the end of life without assisting suicide. Addressing the demand for physician-assisted suicide requires improvement in end-of-life care and continued discussion attentive to emerging empirical data.     

Physicians' responses to patients' requests for physician-assisted suicide

BACKGROUND: Studies show that patient requests for physician-assisted suicide (PAS) are a relatively common clinical occurrence. The purpose of this study was to describe how experienced physicians assess and respond to requests for assisted suicide. METHODS: Focused ethnography in the offices of 11 acquired immunodeficiency syndrome physicians, 8 oncologists, and 1 hospice physician who had received requests for assisted suicide in their practice. Ten had facilitated PAS. RESULTS: Informants had a similar approach to evaluating patients who requested assisted suicide, often asking, "Why do you want to die now?" Reasons for requests fell into 3 broad categories: physical symptoms, psychological issues, and existential suffering. Physicians thought they competently addressed patients' physical symptoms, and this obviated most requests. They treated depression empirically and believed they did not assist depressed patients with assisted suicide. Physicians had difficulty addressing patients' existential suffering, which led to most facilitated requests. Informants rarely talked to colleagues about requests for assisted suicide, suggesting a "professional code of silence." CONCLUSIONS: Regardless of divergent attitudes about PAS, physicians respond similarly to requests for assisted suicide from their patients, creating a common ground for professional dialogue. Our sample addressed physical suffering aggressively, treated depression empirically, but struggled with requests arising from existential suffering. A professional code of silence regarding PAS creates professional isolation. Clinicians do not share knowledge or receive social support from peers about their decisions regarding assisted suicide. Educational strategies drawing on approaches used by experienced clinicians may create an atmosphere that enables physicians with divergent beliefs to discuss this difficult subject.     

Attitudes and practices of U.S. oncologists regarding euthanasia and physician-assisted suicide

BACKGROUND: The practices of euthanasia and physician-assisted suicide remain controversial. OBJECTIVE: To achieve better understanding of attitudes and practices regarding euthanasia and physician-assisted suicide in the context of end-of-life care. DESIGN: Cohort study. SETTING: United States. PARTICIPANTS: 3299 oncologists who are members of the American Society of Clinical Oncology. MEASUREMENTS: Responses to survey questions on attitudes toward euthanasia and physician-assisted suicide for a terminally ill patient with prostate cancer who has unremitting pain, requests for and performance of euthanasia and physician-assisted suicide, and sociodemographic characteristics. RESULTS: Of U.S. oncologists surveyed, 22.5% supported the use of physician-assisted suicide for a terminally ill patient with unremitting pain and 6.5% supported euthanasia. Oncologists who were reluctant to increase the dose of intravenous morphine for terminally ill patients in excruciating pain (odds ratio [OR], 0.61 [95% CI, 0.48 to 0.77]) and had sufficient time to talk to dying patients about end-of-life care issues (OR, 0.79 [CI, 0.71 to 0.87]) were less likely to support euthanasia or physician-assisted suicide. During their career, 3.7% of surveyed oncologists had performed euthanasia and 10.8% had performed physician-assisted suicide. Oncologists who were reluctant to increase the morphine dose for patients in excruciating pain (OR, 0.58 [CI, 0.43 to 0.79]) and those who believed that they had received adequate training in end-of-life care (OR, 0.86 [CI, 0.79 to 0.95]) were less likely to have performed euthanasia or physician-assisted suicide. Oncologists who reported not being able to obtain all the care that a dying patient needed were more likely to have performed euthanasia (P = 0.001). CONCLUSIONS: Requests for euthanasia and physician-assisted suicide are likely to decrease as training in end-of-life care improves and the ability of physicians to provide this care to their patients is enhanced.     

Views of united states physicians and members of the American medical association house of delegates on physician-assisted suicide

OBJECTIVE: To ascertain the views of physicians and physician leaders toward the legalization of physician-assisted suicide. DESIGN: Confidential mail questionnaire. PARTICIPANTS: A nationwide random sample of physicians of all ages and specialties, and all members of the American Medical Association (AMA) House of Delegates as of April 1996. MEASUREMENTS: Demographic and practice characteristics and attitude toward legalization of physician-assisted suicide. MAIN RESULTS: Usable questionnaires were returned by 658 of 930 eligible physicians in the nationwide random sample (71%) and 315 of 390 eligible physicians in the House of Delegates (81%). In the nationwide random sample, 44.5% favored legalization (16.4% definitely and 28.1% probably), 33.9% opposed legalization (20.4% definitely and 13.5% probably), and 22% were unsure. Opposition to legalization was strongly associated with self-defined politically conservative beliefs, religious affiliation, and the importance of religion to the respondent (P <.001). Among members of the AMA House of Delegates, 23.5% favored legalization (7.3% definitely and 16.2% probably), 61.6% opposed legalization (43.5% definitely and 18.1% probably), and 15% were unsure; their views differed significantly from those of the nationwide random sample (P <.001). Given the choice, a majority of both groups would prefer no law at all, with physician-assisted suicide being neither legal nor illegal. CONCLUSIONS: Members of the AMA House of Delegates strongly oppose physician-assisted suicide, but rank-and-file physicians show no consensus either for or against its legalization. Although the debate is sometimes adversarial, most physicians in the United States are uncertain or endorse moderate views on assisted suicide.     

Palliative care for advanced dementia

Dementia is a common, devastating, and ultimately fatal illness. Although no cure exists for most causes of dementia, palliative interventions for the predictable complications of the illness can effectively reduce the suffering of patients and families. Care of patients with end-stage dementia is clinically and conceptually consistent with hospice and palliative care, and this approach to care for patients with terminal dementia is preferred. Although the 6-month risk for mortality can be predicted (to satisfy current American hospice eligibility requirements), palliative care interventions are appropriate much earlier in the course of deterioration from dementia.     

Need for hospice and palliative care services in patients with end-stage heart failure treated with intermittent infusion of inotropes

BACKGROUND: Hospice and palliative care programs to relieve suffering and optimize management of terminally ill patients have grown rapidly in the United States. However, there are no data on the need for these services among patients with end-stage heart failure receiving intermittent infusion of intravenous inotropes. HYPOTHESIS: The need for hospice and palliative care programs among patients in end-stage heart failure who receive intermittent infusion of inotropes is investigated. METHODS: The study included all stable patients with refractory heart failure symptoms treated with inotropes in our outpatient unit. A total of 73 patients (65 +/- 12 years; left ventricular ejection fraction 22 +/- 9%; New York Heart Association class 3.6 +/- 0.4) were seen during a 49-month period. Of these, 35 patients (48%) met hospice or palliative care evaluation criteria upon referral but were offered, and accepted, the alternative of parenteral inotropes. In all, 1,737 individual outpatient treatment sessions were given, with a mean of 24 +/- 19 sessions per patient (range 5 to 118 sessions), representing a minimum of 9,948 h of inotrope therapy. RESULTS: A total of 18 (25%) patients died, 6 (8%) patients were withdrawn from the program (3 by their primary physicians and 3 because of significant travel limitations); 4 (5%) patients required continuous intravenous home therapy; and 44 (61%) patients were discharged with significant improvement in their heart failure symptoms. Only 7 of the 18 patients who died had received hospice or palliative care intervention, mainly for the sake of comfort and to ease the transition among family members. The rest of the patients were comfortable and had accepted the natural evolution of their disease; they were not interested in or did not require hospice or palliative care intervention. Of the patients discharged from the outpatient cardiac infusion unit, the interval free of heart failure symptoms after the final infusion treatment ranged from 201 to 489 days, with no need for hospitalization or emergency room visits. CONCLUSION: Our results demonstrate that intermittent infusion of intravenous inotropes can be safely administered and can improve symptoms in a significant number of patients, probably by slowing the natural progression of heart failure. Although the full clinical impact of inotrope therapy in an outpatient setting has not been fully defined, other nonhemodynamic-related benefits should be sought and investigated. Our results suggest that intermittent infusion of intravenous inotropes is one of the prominent variables that requires particular attention. In our experience, the institution of intermittent infusions of intravenous inotropes can, in fact, modify end-stage heart failure symptoms that, in most patients, are currently perceived to lead to a terminal event. Thus, appropriate use of intermittent infusion of intravenous inotropes may not only improve functional class and symptoms in a significant number of patients identified as terminal by their poor response to conventional therapy, but it may also facilitate better utilization of hospice and palliative care resources among patients with end-stage heart failure. Furthermore, the need for hospice and palliative care in patients with heart failure should be revisited in view of adjuvant treatment options such as intermittent infusion of intravenous inotropes.     

Palliative and end-of-life care for patients with cardiopulmonary diseases: American College of Chest Physicians position statement

Acute and chronic pulmonary and cardiac diseases often have a high mortality rate, and can be a source of significant suffering. Palliative care, as described by the Institute of Medicine, "seeks to prevent, relieve, reduce or soothe the symptoms of disease or disorder without effecting a cure... Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs." The American College of Chest Physicians strongly supports the position that such palliative and end-of-life care of the patient with an acute devastating or chronically progressive pulmonary or cardiac disease and his/her family should be an integral part of cardiopulmonary medicine. This care is best provided through an interdisciplinary effort by competent and experienced professionals under the leadership of a knowledgeable and compassionate physician. To that end, it is hoped that this statement will serve as a framework within which physicians may develop their own approach to the management of patients requiring palliative care.     

Attitudes and preferences of Korean-American older adults and caregivers on end-of-life care

A growing body of literature suggests that diverse attitudes toward the end of life exist across and within ethnic minority groups. This focus-group pilot study examined social and cultural factors influencing views of Korean-American older adults and caregivers on advance care planning and hospice care. A total of 20 older adults and 16 caregivers in west central Florida participated in one of four focus groups. This study found diverse attitudes among Korean Americans toward end-of-life care and cultural and structural barriers to advance care planning and hospice use. Older adults and caregivers both expressed a lack of knowledge about advance care planning and hospice and agreed that the family would make the final decision about the end-of-life care, while acknowledging the challenge of initiating communications about treatment preferences. They interpreted the Korean value of filial piety to support both curative and palliative treatment. The traditional norm of home death and importance of physician communication influenced preferences for hospice and advance care planning, respectively. Future outreach and education efforts should include development of culturally sensitive educational and communication tools and collaboration with ethnic community organizations and healthcare providers in the dissemination and education of these instruments.     

AIDS caregivers struggling with assisted suicide

A short case study of a man who chose suicide over continuing to live with AIDS introduces this discussion of assisted suicide. Oregon is the only state where physician-assisted suicide is legal; in most other states it is explicitly illegal or the law is unclear. "Rational suicide" is a commonly thought about and discussed topic among AIDS patients, and the rate of suicide in this population is more common than death certificates indicate. A Seattle-based group, Compassion in Dying, provides support and advice to dying patients who want to hasten their deaths. Before providing assistance to persons who are willing to follow its lengthy procedures, the group urges patients to explore other avenues of better pain management. The National Association of Social Workers has issued a policy supporting the presence of a social worker at an assisted suicide if requested by the client.     

Emergency physicians and physician-assisted suicide, Part II: emergency care for patients who have attempted physician-assisted suicide.

Part I of this article reviewed key terms, events, and arguments in the heated national debate regarding physician-assisted suicide (PAS). Part II of the article examines the role of emergency physicians in caring for patients who present to the emergency department after an incomplete or unsuccessful attempt at PAS. The article considers the analogous cases of emergency care for other patients who have attempted suicide and care for terminally ill patients who refuse life-sustaining treatment. Morally relevant features of these situations are identified, including the decisionmaking capacity and the choices of the patient, the opinions of the patient's family or other surrogate decisionmakers, the presenting condition and medical history of the patient, the nature of the patient's suicide attempt, and the physician's own moral convictions. The article evaluates the 3 management options: aggressive intervention to preserve life, palliative care only, and assistance in completing the suicide. It concludes with several general recommendations for addressing these situations.     

Integrating palliative care into heart failure care

Heart failure is a condition for which both palliative care and hospice care can be appropriate. The disease's increasing prevalence and predilection for elderly patients with significant comorbidity underscore the need to integrate these modes of care with the acute care approach that has dominated heart failure treatment. We propose integration of a palliative care approach early in the course of heart failure treatment and a tiered process for selecting patients for hospice care. A transition of the focus to palliative care rather than mortality reduction should occur over time, when clinical status deteriorates and advanced therapeutic options become inappropriate or ineffective. Failure to respond to the need for palliative care puts at risk the mandate to treat the patient with heart failure during the entire course of illness.     

Integrating palliative care in severe chronic obstructive lung disease

Palliative care services for patients with chronic obstructive pulmonary disease (COPD) have been limited in most health care schemes despite the significant impact its symptoms can have on quality of life (QOL). Palliative care must be integrated to address physical and emotional distress and QOL deterioration more effectively. Multi-factorial barriers in current health care systems impede the provision of palliative care, including the lack of familiarity among health care professionals. There are sparse evidence-based studies and guidelines for clinicians to better recognize the need for palliative care in COPD patients compared to the large experience and resources available to cancer patients and hospice care. The multidisciplinary approach of palliative care should help COPD patients navigate through the continuum of chronic disease management. Highest QOL, not necessarily the highest physiologic goals, with relief of physical and emotional suffering, are most important to patients. Hospice care, the last phase of palliative care, can be offered to COPD patients when their goal of care has changed from life-prolonging therapies to comfort treatment. We suggest a scheme for identifying COPD patients for palliative care and for delivering simultaneous disease-directed care to help patients live life to the fullest. Pulmonary rehabilitation offers the best venue for incorporating palliative care. We review the need for, barriers to, and key activities for integrating palliative care into the current health care management of patients living with COPD.     

Unobvious wounds: the suffering of hospice patients

Background: The suffering of palliative care patients is ordinarily thought of in terms of symptoms, and these are identified by medical terms (pain, nausea, depression). The problematic issue of relief of patients’ pain meaning the same thing as the ‘relief of the suffering and distress of terminally ill patients’ has been raised. Aim: The aim of this study was to estimate the frequency with which medically defined suffering matched the reported suffering of our patients. Methods: One hundred patients admitted to a hospice were asked ‘In what way are you suffering?’ The patients’ diagnoses, their pain scores and the reasons for admission as defined by the treating clinicians were recorded. The mean age of the patients was 68 years (range 28?93 years), 92 had advanced malignant disease and 51 were women. Results: Twenty‐four patients were unable to state the reason for hospice admission, but none had any uncertainty in identifying the nature of their own suffering. There was a weak correlation between the patient's view of their suffering and the reason for admission. The identification of pain as the cause of suffering was weakly correlated with pain scores. Some patients with pain scores of 8?10/10 did not mention pain as a cause of suffering, and others with scores of 0/10 did identify pain as the cause of suffering. Conclusion: Asking hospice patients about suffering in a simple open‐ended way can expose a different dimension of distress, and the views of the 100 patients of this study support the statement that relief of pain and relief of suffering are not the same. (Intern Med J 2004; 34: 604?607)     

A Cross-Cultural Comparison of Hospice Development in Japan,South Korea,and Taiwan

By 2050, one out of four people in Eastern Asia will be aged 65 and above. Thus, preparing to care for an older population is imperative. Addressing quality care for elders includes consideration of palliative and end-of-life care. A comparative study of the development of hospice and palliative care services in Japan, South Korea, and Taiwan, is presented, based on an extensive literature review. Both commonalities and differences were found. This article provides information on the origins and administration of hospice services in these three cases, as well as the degree of government involvement. Cultural and religious aspects are also considered, and obstacles to the spread of hospice services are discussed. This review compares experiences with hospice services and identifies factors that influence people’s perceptions and adoption of hospice. Stronger financial support for hospice and palliative care through the government and insurance programs would help increase the availability and use of services. Also, the need for continuing education of healthcare providers, patients, families, and the community is urgent. However, promotion of understanding of better pain management and the worth of hospice and palliative care must be conducted in ways that are sensitive to the cultural values and traditions in Japan, South Korea, and Taiwan. Only when hospice and palliative care can be viewed as an admirable choice for one’s loved ones, overcoming issues of truth telling, filial piety, worries about how one is judged, and religious considerations, will it become more widely accepted.