Ethical analysis of withdrawal of pacemaker or implantable cardioverter-defibrillator support at the end of life

OBJECTIVE: To describe a series of terminally ill patients who requested (or whose surrogates requested) withdrawal of pacemaker or implantable cardioverter-defibrillator (ICD) support and the ethical issues pertaining to these requests. PATIENTS AND METHODS: We performed a retrospective review of the medical records of patients seen at the Mayo Clinic in Rochester, Minn, between January 1996 and June 2002 and identified 6 terminally ill patients who requested (or whose family members requested) withdrawal of pacemaker or ICD support. Potential interventions were an ethics consultation and subsequent withdrawal of pacemaker or ICD support. The study's main outcome measures were death and the context in which it occurred. RESULTS: The mean age of the 6 patients (3 men, 3 women) was 75.5 years. Five had pacemakers, and 1 had an ICD. Five patients had advance directives that indicated a desire to withdraw medical interventions if death was inevitable. Two patients and 4 surrogates requested withdrawal of pacemaker or ICD support. One patient died without withdrawal of support despite an ethics consultation that endorsed its permissibility. Another died while an ethics consultation was in progress. The request to withdraw support was granted in 4 patients, all of whom died within 5 days of withdrawal of support. CONCLUSIONS: Granting terminally ill patients' requests to withdraw unwanted medical support is legal and ethical. Death after withdrawal of support is attributable to the patient's underlying pathology and is not the same as physician-assisted suicide or euthanasia. Clinician familiarity with these concepts may lead to more expeditious withdrawal of unwanted medical support from terminally ill patients.     

Do-not-resuscitate decision making for terminally ill older patients in the emergency department: An explorative,descriptive inquiry of Chinese family members

Many terminally ill older adults depend on family members to make medical decisions in China. Many family members find it difficult to make do-not-resuscitate (DNR) decisions in emergency departments (ED). Currently, factors that affect DNR decision making by family members for older adults needing emergency care have not been well studied. This qualitative inquiry explores factors influencing DNR decision-making among family members of terminally ill older adults in ED. Semi-structured in-depth interviews were conducted for a 12-family member of terminally ill older adults at ED in China. Results of the conventional content analysis showed that family members made DNR decisions based on a wide of reasons: (a) subjective perception of family members, (b) conditions of the terminally ill older adults, (c) external environmental factors, and (d) internal family factors. The findings of this study expand our knowledge and understanding of factors influencing DNR decision-making by family members of terminally ill older adults in ED.     

A Hospital Bestiary

From contraception to cloning, when the progress of medicine collides with complex ethical and legal issues, the reflexive cry from readily identifiable quarters about the newest medical advance is “Ban it!” Such a collision is occurring as the US Supreme Court considers two cases from opposite coasts of the country that address such a complex fundamental issue-the right of competent terminally ill adults to seek physician assistance in choosing the time and place of their death. This collision between life-sustaining medical technologies and life-ending medical decisions has profound ethical and legal implications.     

Scientific, legal, and ethical challenges of end-of-life organ procurement in emergency medicine

Aim

We review (1) scientific evidence questioning the validity of declaring death and procuring organs in heart-beating (i.e., neurological standard of death) and non-heart-beating (i.e., circulatory-respiratory standard of death) donation; (2) consequences of collaborative programs realigning hospital policies to maximize access of procurement coordinators to critically and terminally ill patients as potential donors on arrival in emergency departments; and (3) ethical and legal ramifications of current practices of organ procurement on patients and their families.

Data sources

Relevant publications in peer-reviewed journals and government websites.

Results

Scientific evidence undermines the biological criteria of death that underpin the definition of death in heart-beating (i.e., neurological standard) and non-heart-beating (i.e., circulatory-respiratory standard) donation. Philosophical reinterpretation of the neurological and circulatory-respiratory standards in the death statute, to avoid the appearance of organ procurement as an active life-ending intervention, lacks public and medical consensus. Collaborative programs bundle procurement coordinators together with hospital staff for a team-huddle and implement a quality improvement tool for a Rapid Assessment of Hospital Procurement Barriers in Donation. Procurement coordinators have access to critically ill patients during the course of medical treatment with no donation consent and with family or surrogates unaware of their roles. How these programs affect the medical care of these patients has not been studied.

Conclusions

Policies enforcing end-of-life organ procurement can have unintended consequences: (1) erosion of care in the patient's best interests, (2) lack of transparency, and (3) ethical and legal ramifications of flawed standards of declaring death.     

The viability of pediatric hospices: A case study

This paper identifies the special characteristics needed by hospices caring for terminally ill children. It is based on a feasibility study conducted in 1979 for a pediatric hospital in New York City. From the analysis of statistical data and confidential interviews with health care professionals in the hospital and in the community, the study concludes that the needs of terminally HI children and their families are not being met currently and that the hospice is as appropriate for children as for adults. Three major differences in emphasis are noted, however. First, support of the family suffering the death of a child is of prime importance, because the grief is devastating and long lasting and because the number of family members affected is usually large. Second, the hospice emphasis on home care is even more imperative for children than for adults as it more significantly benefits both child and family; home care can be facilitated through supplementary care components such as day care. Third, there is a major need for both professional and public education in caring for terminally ill children and their families and in coping with childhood death. The author concludes that further research is needed in all aspects of pediatric terminal care.     

Cardiac pacemakers and implantable defibrillators in terminal care.

The use of cardiac pacemakers and arrhythmia control devices is increasingly common. The presence of a previously placed pacemaker or implantable cardioverter-defibrillator (ICD) in a terminally ill patient may result in medical and ethical issues for the patient, family, and healthcare provider. Two cases are presented to illustrate the complex issues that may arise in the terminally ill with a pacemaker or an ICD. Based on these cases and a review of published data, it is likely that the disabling of a previously placed pacemaker will neither hasten nor prolong the natural history of the underlying illness in most instances. There are uncommon but potentially severe adverse effects of disabling the pacemaker; therefore, pacemakers should generally be left intact in terminally ill patients. It is more difficult to generalize as to whether deactivation of an ICD is appropriate; in this case death may be hastened and the decision concerning an ICD will depend on the specific clinical scenario. Patient and family education regarding palliative care treatment goals and the function of pacemakers and other implanted arrhythmia control devices can help to alleviate anxiety surrounding the impact of this technology at the end of life.     

Access to care

In the twenty years since the National Hospice Organization began, hospice has grown tremendously. However, it still only serves a small percentage of terminally ill patients. This is because access to hospice services is limited by various restrictions to care. These barriers to care include societal attitudes towards death, diversity issues, socioeconomic issues, and eligibility issues. In order to develop and serve more of the population, hospice agencies must be flexible, creative, and use ingenuity to bridge the gaps that occur for some terminally ill patients.     

Nurses' attitudes about end-of-life referrals

Changes in the causes of death and advances in medical technology are leading nurses today to become more involved with end-of-life care than previously. Yet, terminally ill patients and their families have reported dissatisfaction with end-of-life care. One reason for the dissatisfaction may be attitudes among nurses about end-of-life care and hospice referral. Attitudes about end of life affect nurses' ability to care for and communicate with patients and families facing these issues. For this reason, it is important to examine nurses' attitudes about end-of-life care, specifically hospice referral, to improve care to patients and families facing death.     

Care for dying patients – German legislation

Caring for dying patients appears to be one of the most difficult challenges in modern medicine. Apart from respective medical standards, such care is influenced by legal stipulations, economic resources, societal values, and ethical principles. In Germany, legal provisions prohibit actively hastening a patient's death. Although passive and indirect means of assistance to die are permitted for terminally ill patients, they appear to be implemented only with hesitation. Probably, the authority of advance directives needs further clarification. More importantly, however, physicians' deficits in knowledge as well as their conceptual and psycho-emotional barriers need comprehensive improvement in order to foster end-of-life care.     

Nursing and the Terminally Ill: Beliefs,Attitudes, and Perceptions of Practitioners

When care of the terminally ill takes place in a hospice, rather than in an acute-care setting, there is a shift in overall care from the medical staff to supportive nursing care. To better understand nurses' perceptions about providing care for the terminally ill, an investigation into the salient beliefs about providing nursing care for the terminally ill was undertaken with 97 nurses practicing in a midwestern metropolitan area. For the total sample, 13 of the 20 beliefs identified from a literature review were found to be salient. A salient belief was identified as an accurate statement by the nurses participating in the study. The 13 beliefs were analyzed according to six practice settings: adult intensive care, cardiology intensive care, pediatric intensive care, oncology, psychiatric, and hospice.     

Dying at home: Experience of the Verdun local community service centre

ObjectiveTo demonstrate that it is possible for a team of palliative care nurses in an urban centre to care for more than 50% of their terminally ill patients at home until they die, and that medical care delivered in the home is a determining factor in death at home versus death in a hospital.DesignAnalysis of place of death of terminally ill patients who died in 2012 and 2013 (N = 212) and who had been cared for by palliative care nurses, by type of medical care.SettingThe centre local de services communautaires (CLSC) in Verdun, Que, an urban neighbourhood in southwest Montreal.ParticipantsA total of 212 terminally ill patients.ResultsOf the 212 patients cared for at home by palliative care nurses, 56.6% died at home; 62.6% received medical home care from CLSC physicians, compared with 5.0% who did not receive medical home care from any physician.ConclusionCombined with a straightforward restructuring of the nursing care delivered by CLSCs, development of medical services delivered in the home would enable the more than 50% of terminally ill patients in Quebec who are cared for by CLSCs to die at home—something that most of them wish for.Many articles have been published about the factors that influence the possibility of dying at home for terminally ill patients. When brought together, these factors create a “complete” team of palliative home care professionals, with nursing and medical expertise in palliative home care, 24-hour access to nursing and medical care, access to social workers and occupational therapists able to work with palliative care patients in the home, and home supports, as needed.^1,2 The centre local de services communautaires (CLSC) in Verdun, Que, created such a team.Quebec has a vast network of CLSCs that offer general nursing care; the services of social workers, occupational therapists, and physiotherapists; and various forms of practical support in the home. Very few CLSCs offer dedicated palliative nursing care and even fewer offer medical care in the home to terminally ill patients, in spite of the fact that most of these patients want to remain at home and that access to a palliative home care team reduces hospitalizations and in-hospital deaths of terminally ill patients while providing comparable quality of care.³     

End-of-life challenges: honoring autonomy

Patients' end-of-life decisions challenge nurses to improve palliative care, symptom management, and patient advocacy, and examine ethical issues. When terminally ill patients take charge of the last stages of life, they may challenge nurses to reexamine attitudes about lifesaving technology and autonomy and values about preserving life. Staff members can become benevolent and believe that they know what is best despite the patient's independent decisions. When patients unsuccessfully decline continued aggressive, life prolonging strategies, they may decide to hasten dying rather than accept a natural death. Researchers (Breitbart WS et al. JAMA. 2000;284:2907-2911) defined desire for hastened death as a unifying construct underlying requests for assisted suicide, euthanasia, and withdrawal of food and fluids. When a terminally ill patient considers a hastened death, the nurse needs to examine the patient's mental health, symptom management, advance directives, and decision making. Medical and psychological symptoms and spiritual distress often trigger thoughts of hastening death even when pain and symptoms have been treated (Breitbart WS et al. JAMA. 2000;284:2907-2911). Ethical issues and guidelines for management of patients and evaluation of rationality are presented.     

End-of-life care for terminally ill participants in clinical research

Efforts to improve end-of-life care in the United States have paid little attention to the unique concerns of participants in clinical research who are terminally ill. In this paper we focus attention on and offer an analysis of how to meet the needs of these individuals. To address their concerns, we consider how to reconcile two important tasks: providing optimal end-of-life care and conducting clinical research. First, we examine the inherent tension between the goals of medicine and the goals of science. Second, we focus more specifically on the tensions between a good death and conducting clinical research in patients with a short life expectancy. We examine six domains that have been suggested for measuring a good death: physical symptoms; psychological and cognitive symptoms; economic and caregiving needs; social relationships; spiritual beliefs; hopes and expectations. For each of these domains we examine how the goals of clinical research may conflict or coincide with taking care of a patient with a terminal illness. Finally, we offer suggestions to address these tensions: (1) modify the informed consent discussion for terminally ill participants in research; (2) build a palliative care component into clinical trials; (3) attend to the needs of family caregivers of terminally ill research subjects; (4) arrange for continuity of care so that dropping out of a trial does not jeopardize medical care; (5) train clinical investigators in end-of-life care; (6) develop a counseling strategy for terminally ill participants in clinical research.     

Prehospital care: emergency medical services

Emergency medical services are becoming an increasingly important aspect of health care delivery. Prehospital care providers, termed paramedics, follow established protocols and work under a medical director in implementing treatment on the scene. Special problems include the physician on the scene, issues of consent and liability, and the treatment of terminally ill patients.     

A quarter century of end-of-life issues in U.S. medical schools

This study examined medical school offerings on end-of-life issues between 1975 and 2000. Five national surveys of US medical schools were conducted in 1975, 1980, 1985, 1995, and 2000 (response rates of 95%, 96%, 9 0%, 93%, and 92%, respectively). Results revealed that between 1975 and 2000, the offerings in death and dying increased. A multidisciplinary-team approach continued over the 25-year period. In 2000,palliative care was directly addressed in 87% of medical schools responding, and the majority of students were exposed to a hospice patient.The increased attention to death and dying in medical schools should enhance the medical student's relationship with terminally ill patients. An awareness of, and acquired knowledge about, these issues in the medicalization of students should result in end-of-life concerns being more tolerable for both patients, their families, and physicians.     

Artificial nutrition and hydration at the end of life.

Patients who are terminally ill do not respond to administration of artificial nutrition and hydration in the same way as patients who have potential for recovery. Knowledge of end-stage disease and ethical and legal parameters are necessary for health care team members to make clinically and morally sound therapeutic decisions in conjunction with the patient and family.     

Bioethical issues concerning death: death, dying, and end-of-life rights

Ethical issues about death, dying, and a person's right to make end-of-life decisions have become one of the most legally complex and culturally sensitive areas to emerge in our time. Sensitive issues associated with a terminally ill individual's right to make end-of-life decisions and the disposition of those who are unable to make such decisions for themselves will keep healthcare professionals, medical ethicists, counselors, families, lawyers, judges, and legislators busy for years to come. Americans find it difficult to deal with end-of-life issues and would rather focus on what more can be done to save a life.     

Death during transfer of a palliative care patient

This short report illustrates the potential confusion that exists when terminally ill patients die during transfer between places of care. The report documents the legal requirements necessary if a terminally ill patient dies during transfer and raises the debate regarding what policies and practice currently exist, within the UK, for transfer of terminally ill patients.