Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001

Empirical data on the rate of euthanasia, physician-assisted suicide, and other end-of-life decisions have greatly contributed to the debate about the role of such practices in modern health care. In the Netherlands, the continuing debate about whether and when physician-assisted dying is acceptable seems to be resulting in a gradual stabilisation of end-of-life practices. We replicated interview and death-certificate studies done in 1990 and 1995 to investigate whether end-of-life practices had altered between 1995 and 2001. Since 1995, the demand for physician-assisted death has not risen among patients and physicians, who seem to have become somewhat more reluctant in their attitude towards this practice.     

Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers

BACKGROUND: Terminal illness imposes substantial burdens--economic and otherwise--on patients and caregivers. The cause of these burdens is not understood. OBJECTIVE: To determine the mechanism for economic and noneconomic burdens of terminal illness and to identify potential ameliorating interventions. DESIGN: In-person interviews of terminally ill patients and their caregivers. SETTING: Six randomly selected U.S. sites: Worcester, Massachusetts; St. Louis, Missouri; Tucson, Arizona; Birmingham, Alabama; Brooklyn, New York; and Mesa County, Colorado. PARTICIPANTS: 988 terminally ill patients and 893 caregivers. MEASUREMENTS: Needs for transportation, nursing care, homemaking, and personal care; subjective perception of economic burden; expenditure of more than 10% of household income on health care costs; caregiver depression and sense of interference with his or her life; and patient consideration of euthanasia or physician-assisted suicide. RESULTS: Of all patients, 34.7% had substantial care needs. Patients who had substantial care needs were more likely to report that they had a subjective sense of economic burden (44.9% compared with 35.3%; difference, 9.6 percentage points [95% CI, 3.1 to 16.1]; P = 0.005); that 10% of their household income was spent on health care (28.0% compared with 17.0%; difference, 11.0 percentage points [CI, 4.8 to 17.1]; P < or = 0.001); and that they or their families had to take out a loan or mortgage, spend their savings, or obtain an additional job (16.3% compared with 10.2%; difference, 6.1 percentage points [CI, 1.4 to 10.6]; P = 0.004). Patients with substantial care needs were more likely to consider euthanasia or physician-assisted suicide (P = 0.001). Caregivers of these patients were more likely to have depressive symptoms (31.4% compared with 24.8%; difference, 6.6 percentage points [CI, 0.4 to 12.8]; P = 0.01) and to report that caring for the patients interfered with their lives (35.6% compared with 24.3%; difference, 11.3 percentage points [CI, 5.0 to 17.7]; P = 0.001). Caregivers of patients whose physicians listened to patients' and caregivers' needs had fewer burdens. CONCLUSIONS: Substantial care needs are an important cause of the economic and other burdens imposed by terminal illness. Through empathy, physicians may be able to ameliorate some of these burdens.     

A comparison of characteristics of Kevorkian euthanasia cases and physician-assisted suicides in Oregon

PURPOSE: The sociodemographic and clinical characteristics of Kevorkian euthanasia cases were compared with Oregon physician-assisted suicide (PAS) cases and U.S. mortality data. DESIGN AND METHODS: Two hundred variables were coded from medical examiner reports on all 69 Kevorkian euthanasia cases who died and were autopsied by the Oakland County Medical Examiner. Data on the 43 Oregon PAS cases in the first two years and U.S. mortality data were obtained from published sources. RESULTS: Only 25% of patients euthanized by Kevorkian were terminally ill as compared to 100% of Oregon PAS cases. PAS cases were significantly more likely to have cancer (72%) than euthanasia cases (29%). Women and those who were divorced or had never married were significantly more likely to seek euthanasia than would have been predicted by national mortality statistics. IMPLICATIONS: Gender and marital status appeared to influence decisions to seek an assisted death, and research on the role of these factors in end-of-life decision making is merited.     

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.     

Patients’ views about physician participation in assisted suicide and euthanasia

OBJECTIVE: To elucidate the effect of physician participation in physician-assisted suicide and euthanasia on the physician-patient relationship. DESIGN: A questionnaire administered to 228 adult patients. SETTING: A university-based family practice training program. PATIENTS/PARTICIPANTS: We approached 230 individuals of at least 18 years of age who were patients in the study practice. These individuals were selected on the basis of age and gender to ensure a heterogeneous study population. Of these, 228 agreed to participate and completed the questionnaire. RESULTS: The majority of subjects felt that a physician who assists with suicide or performs euthanasia is capable of being a caring person (91% and 88%, respectively) and would still be able to offer emotional support to surviving family members (85% and 76%, respectively). Most also felt that a physician assisting in suicide or euthanasia would be as trustworthy as a nonparticipating physician to care for critically ill patients (90.5% and 84.6%, respectively). Five percent “likely would not” continue to see their physician if it was known that he or she assisted in suicide and 7.8% “likely would not” continue seeing their physician if it was known that this physician performed euthanasia. No individuals stated that they “definitely would not” continue seeing their doctor under either circumstance. Individuals who supported the ideas of physician-assisted suicide and euthanasia were more likely to think that a physician who assisted with suicide and euthanasia could perform well in the tasks noted above and would be more likely to continue seeing such a physician (p=.001) CONCLUSION: Participating in physician-assisted suicide and euthanasia does not markedly adversely affect the physician-patient relationship. This work was supported by a grant from the Department of Family Practice at the University of Iowa.     

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.     

Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful?

BACKGROUND: Discussing end-of-life issues with terminally ill patients is often considered distressing and harmful. This study was conducted to assess whether interviewing terminally ill patients and their caregivers about death, dying, and bereavement is stressful and/or helpful. METHODS: Patients from 6 sites in the United States who were estimated to have 6 months or less to live were interviewed in person and reinterviewed 2 to 6 months later. Their caregivers were interviewed separately. At the end of the interviews, patients and caregivers were asked how stressful and how helpful the interview had been. Of 1131 eligible patients, 988 (87.4%) were interviewed, and of 915 eligible caregivers, 893 (97.6%) were interviewed. RESULTS: At the end of the first interview, 1.9% of the patients reported having experienced a great deal of stress, 7.1% some stress, and 88.7% little or no stress from the interview. Among the caregivers, 1.5% reported a great deal of stress, 8.4% some stress, and 89.7% little or no stress. Slightly more stress was reported to have been caused by the reinterview. Overall, 16.9% of the patients reported the initial interview as very helpful, 29.6% as somewhat helpful, and 49.6% as offering little or no help. Among the caregivers, 19.1% reported the initial interview as very helpful, 34.3% as somewhat helpful, and 44.9% as offering little or no help. The reported helpfulness of the second interview was slightly less. Patients experiencing pain (odds ratio [OR], 1.26; 95% confidence interval [CI], 1.02-1.56), more personal meaning in dying (OR, 3.05; 95% CI, 2.02-4.59), and less ease with talking about the end of life (OR, 1.32; 95% CI, 1.09-1.60) were significantly more likely to report stress. Patients who were from an ethnic minority (OR, 1.85; 95% CI, 1.31-2.63), anxious about the end of their life (OR, 1.39; 95% CI 1.16-1.67), more spiritual (OR, 1.30; 95% CI, 1.06-1.61), and serene (OR, 1.25; 95% CI, 1.08-1.45) were significantly more likely to report the interview helpful. There was no relationship between stress and helpfulness. CONCLUSIONS: Terminally ill patients and their caregivers can discuss death, dying, and bereavement in a structured interview with minimal stress and report that the interview was helpful. Institutional review boards should not preemptively restrict surveys with terminally ill patients without reliable evidence that they will be stressful or otherwise harmful.     

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.     

Characteristics of patients requesting and receiving physician-assisted death

BACKGROUND: Surveys have shown that physicians in the United States report both receiving and honoring requests for physician assistance with a hastened death. The characteristics of patients requesting and receiving physician aid in dying are important to the development of public policy. OBJECTIVE: To determine patient characteristics associated with acts of physician-assisted suicide. DESIGN: Physicians among specialties involved in care of the seriously ill and responding to a national representative prevalence survey on physician-assisted suicide and euthanasia were asked to describe the demographic and illness characteristics of the most recent patient whose request for assisted dying they refused as well as the most recent request honored. RESULTS: Of 1902 respondents (63% of those surveyed), 379 described 415 instances of their most recent request refused and 80 instances of the most recent request honored. Patients requesting assistance were seriously ill, near death, and had a significant burden of pain and physical discomfort. Nearly half were described as depressed at the time of the request. The majority made the request themselves, along with family. In multivariate analysis, physicians were more likely to honor requests from patients making a specific request who were in severe pain (odds ratio, 2.4; 95% confidence interval, 1.01-5.7) or discomfort (odds ratio, 6.5; 95% confidence interval, 2.6-16.1), had a life expectancy of less than 1 month (odds ratio, 4.3; 95% confidence interval, 1.7-10.8), and were not believed to be depressed at the time of the request (odds ratio, 0.2; 95% confidence interval, 0.1-0.5). CONCLUSION: Persons requesting and receiving assistance in dying are seriously ill with little time to live and a high burden of physical suffering.     

The influence of physician race, age, and gender on physician attitudes toward advance care directives and preferences for end-of-life decision-making.

OBJECTIVE: To determine whether physicians' preferences for end-of-life decision-making differ between blacks and whites in the same pattern as patient preferences, with blacks being more likely than whites to prefer life-prolonging treatments. DESIGN: A mailed survey. SETTING AND PARTICIPANTS: American Medical Association (AMA) and National Medical Association (NMA) databases. To enrich the sample of black physicians, we targeted physicians in the AMA database practicing in high minority area zip codes and graduates of the traditionally black medical schools. MAIN OUTCOME MEASURES: Self-reported physician attitudes toward end-of-life decision-making and preference of treatment for themselves in persistent vegetative state or organic brain disease compared by race, controlling for age and gender. RESULTS: The 502 physicians (28%) who returned the questionnaire included 280 white and 157 black physicians. With regard to attitudes toward patient care, 58% of white physicians agreed that tube-feeding in terminally ill patients is "heroic," but only 28 % of black physicians agreed with the statement (P < .001). White physicians were more likely than black physicians to find physician-assisted suicide an acceptable treatment alternative (36.6% vs 26.5% of black physicians) (P < .05). With regard to the physicians preferences for future treatment of themselves for the persistent vegetative state scenario, black physicians were more than six times more likely than white physicians to request aggressive treatments (cardiopulmonary resuscitation, mechanical ventilation, or artificial feeding) for themselves (15.4% vs 2.5%) (P < .001). White physicians were almost three times as likely to want physician-assisted suicide (29.3% vs 11.8%) (P < .001) in this scenario. For a state of brain damage with no terminal illness, the majority of all physicians did not want aggressive treatment, but black physicians were nearly five times more likely than white physicians (23.0% vs 5.0%) (P < .001) to request these treatments. White physicians, on the other hand, were more than twice as likely to request physician-assisted suicide (22.5% vs 9.9%), P < .001 in this scenario. CONCLUSIONS: Physicians preferences for end-of-life treatment follow the same pattern by race as patient preferences, making it unlikely that low socioeconomic status or lack of familiarity with treatments account for the difference. Self-denoted race may be a surrogate marker for other, as yet undefined, factors. The full spectrum of treatment preferences should be considered in development of guidelines for end-of-life treatment in our diverse society.     

Attitudes of Italian doctors to euthanasia and assisted suicide for terminally ill patients

Among Italian hospital physicians and general practitioners, 17.9% endorsed euthanasia or assisted suicide for terminally ill patients and 79.4% endorsed withholding or withdrawal of treatment. Need for attention to quality of life and pain control also emerged.     

Dying with advanced dementia in the nursing home

BACKGROUND: Nursing homes are important providers of end-of-life care to persons with advanced dementia. METHODS: We used data from the Minimum Data Set (June 1, 1994, to December 31, 1997) to identify persons 65 years and older who died with advanced dementia (n = 1609) and terminal cancer (n = 883) within 1 year of admission to any New York State nursing home. Variables from the Minimum Data Set assessment completed within 120 days of death were used to describe and compare the end-of-life experiences of these 2 groups. RESULTS: At nursing home admission, only 1.1% of residents with advanced dementia were perceived to have a life expectancy of less than 6 months; however, 71.0% died within that period. Before death, 55.1% of demented residents had a do-not-resuscitate order, and 1.4% had a do-not-hospitalize order. Nonpalliative interventions were common among residents dying with advanced dementia: tube feeding, 25.0%; laboratory tests, 49.2%; restraints, 11.2%; and intravenous therapy, 10.1%. Residents with dementia were less likely than those with cancer to have directives limiting care but were more likely to experience burdensome interventions: do-not-resuscitate order (adjusted odds ratio [OR], 0.12; 95% confidence interval [CI], 0.09-0.16), do-not-hospitalize order (adjusted OR, 0.33; 95% CI, 0.16-0.66), tube feeding (adjusted OR, 2.21; 95% CI, 1.51-3.23), laboratory tests (adjusted OR, 2.53; 95% CI, 2.01-3.18), and restraints (adjusted OR, 1.79; 95% CI, 1.23-2.61). Distressing conditions common in advanced dementia included pressure ulcers (14.7%), constipation (13.7%), pain (11.5%), and shortness of breath (8.2%). CONCLUSIONS: Nursing home residents dying with advanced dementia are not perceived as having a terminal condition, and most do not receive optimal palliative care. Management and educational strategies are needed to improve end-of-life care in advanced dementia.     

Attitudes and practices concerning the end of life: a comparison between physicians from the United States and from The Netherlands

BACKGROUND: This study compares attitudes and practices concerning the end-of-life decisions between physicians in the United States and in the Netherlands, using the same set of questions. METHODS: A total of 152 physicians from Oregon and 67 from the Netherlands were interviewed using the same questions about (1) their attitudes toward increasing morphine with premature death as a likely consequence, physician-assisted suicide (PAS), and euthanasia; and (2) their involvement in cases of euthanasia, PAS, or the ending of life without an explicit request from the patient. Odds ratios, with 95% confidence intervals, were calculated to investigate relation between attitudes and various characteristics of the respondents. RESULTS: American physicians found euthanasia less often acceptable than the Dutch, but there was similarity in attitudes concerning increasing morphine and PAS. American physicians found increasing morphine and PAS more often acceptable in cases where patients were concerned about becoming a burden to their family. There was a discrepancy between the attitudes and practices of Dutch physicians concerning PAS. The proportions of physicians having practiced euthanasia, PAS, or ending of life without an explicit request from the patient differ more between the countries than do their attitudes, with American physicians having been involved in these practices less often than the Dutch. CONCLUSIONS: In this study of American and Dutch physicians, 2 important differences emerge: different attitudes toward the patient who is concerned over being a burden, and different frequency of euthanasia and PAS in the two countries.     

The value of disease severity in predicting patient readiness to address end-of-life issues

BACKGROUND: Although patient-physician discussion is the most important tool for end-of-life planning, less than 30% of seriously ill patients have held these discussions. While physicians use objective disease severity and recent clinical events to trigger end-of-life discussions, it is not known if such findings predict patient readiness. We evaluated the ability of disease severity measures and recent clinical events to predict patient readiness for end-of-life discussions in patients with chronic lung disease. METHODS: The desire for discussion about end-of-life care was evaluated in 100 outpatients with a diagnosis of chronic lung disease presenting for pulmonary function testing. Objective disease severity was indicated by the percentage of the predicted forced expiratory volume, use of oral corticosteroids, a functional status score, frequency of recent hospitalizations, and required use of mechanical ventilation. RESULTS: In multivariate analysis, patient desire for an end-of-life discussion with the physician was not associated with percentage of predicted forced expiratory volume in 1 second (odds ratio [OR], 0.99; 95% confidence interval [CI], 0.96-1.03), oral corticosteroid use (OR, 1.34; 95% CI, 0.40-4.54), functional status score (OR, 1.37; 95% CI, 0.34-5.56), hospitalizations in the past year (OR, 0.33; 95% CI, 0.09-1.20), or previous mechanical ventilation (OR, 1.37; 95% CI, 0.34-5.56). CONCLUSIONS: Patients appear no more or less interested in end-of-life discussions at later stages of chronic lung disease. Physicians cannot use disease severity measures or recent clinical events to accurately predict when patients desire end-of-life discussions. Focusing on physician skill in using specific communication strategies for patients at all stages of illness may be the most promising approach to increasing end-of-life discussions.     

Life-sustaining treatment and assisted death choices in depressed older patients

OBJECTIVES: The major purpose of this study was to examine the effect of depressed mood in older, medically ill, hospitalized patients on their preferences regarding life-sustaining treatments, physician-assisted suicide (PAS), and euthanasia and to determine the degree to which financial constraints affected their choices. DESIGN: Cross-sectional study. SETTING: General medical hospital. PARTICIPANTS: One hundred fifty-eight medically hospitalized, nondemented patients age 60 or older, mean age 74.1 (range 60-94). The sample was divided, based on Center for Epidemiologic Studies-Depression (CES-D) scores, into a depressed group (n = 71) and a nondepressed control group. MEASUREMENTS: Subjects underwent a structured interview evaluating their life-sustaining treatment choices and whether they would accept or refuse PAS or euthanasia under a variety of hypothetical conditions. These choices were reevaluated with the introduction of financial impact. In addition, assessment included measures of depression, suicide, cognition, social support, functioning, and religiosity. RESULTS: Depression was found to be highly associated with acceptance of PAS and euthanasia in most hypothetical clinical scenarios in addition to patients' current condition. Compared with nondepressed people, depressed respondents were 13 times as likely to accept PAS when considering their current condition (95% confidence interval [CI] 1.68-110.98), and over twice as likely to accept PAS when facing a hypothetical terminal illness or coma. Depression alone was weakly associated with life-sustaining treatment choices but, when financial impact was introduced, significantly more depressed subjects refused treatment options they had previously desired than did nondepressed subjects. The presence of suicidal ideation, even passive ideation, was strongly predictive of life-sustaining treatment refusals and increased interest in PAS and euthanasia. Depression's effect on acceptance of PAS was confirmed by logistic regression, which also showed that religious coping was significantly correlated with less interest in PAS in two hypothetical scenarios. CONCLUSION. Depressed subjects and even subjects with subtle, passive suicidal ideation were markedly more interested in PAS and euthanasia than nondepressed subjects in hypothetical situations. Depressed subjects were also particularly vulnerable to rejecting treatments if financial consequences might have resulted.