Forgoing artificial nutrition or hydration in patients nearing death in six European countries

Whether or not artificial nutrition or hydration (ANH) may be forgone in terminally ill patients has been the subject of medical and ethical discussions. Information about the frequency and background characteristics of making decisions to forgo ANH is generally limited to specific clinical settings. The aim of this study was to compare the practice of forgoing ANH in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. In each country, random samples were drawn from death registries. Subsequently, the reporting physician received a questionnaire about the medical decisions that preceded the patient's death. The total number of deaths studied was 20,480. The percentage of all deaths that were preceded by a decision to forgo ANH varied from 2.6% in Italy to 10.9% in The Netherlands. In most countries, decisions to forgo ANH were more frequently made for female patients, patients aged 80 years or older, and for patients who died of a malignancy or disease of the nervous system (including dementia). Of patients in whom ANH was forgone, 67%-93% were incompetent. Patients in whom ANH was forgone did not receive more potentially life-shortening drugs to relieve symptoms than other patients for whom other end-of-life decisions had been made. Decisions to forgo ANH are made in a substantial percentage of terminally ill patients. Providing all patients who are in the terminal stage of a lethal disease with ANH does not seem to be a widely accepted standard among physicians in Western Europe.     

Baxter v. Montana,Libertarianism, and End-of-Life: The Ripe Time for a Paradigm Shift

ABSTRACT

Baxter v. Montana (2009 WL 5155363 [Mont. 2009]) is a recent decision from the Montana Supreme Court that provides new legal insight into the societal issue of aid in dying. This case involves interests of persons with terminal illness, medical practitioners, law enforcement, legislative and judicial bodies, as well as the citizens of Montana. A summary judgment ruling at the Montana district court level was based almost entirely on a constitutional fundamental rights analysis. In contrast, the Montana Supreme Court affirming decision was based almost entirely on a statutory rights analysis. Both rulings from the Montana courts support the position that licensed prescribers in Montana who provide aid in dying assistance to terminally ill patients have some immunity from criminal prosecution. Each side in the case argued what they believed to be the intents and purposes of the people of Montana. Baxter v. Montana illustrates different methods to determine the will of the people concerning aid in dying and public policy. This case very subtly suggests a paradigm shift may be occurring in aid in dying policy.     

End-of-life care in hospital: current practice and potentials for improvement

From July until September 2004, all deaths were registered prospectively in all departments of Freiburg University Hospital, Germany, a large teaching hospital with approximately 55,000 inpatient admissions per year. A retrospective chart review was done for all patients who died during this time period using a tool validated in two American and Australian projects. Main outcome measures were patients' identification as dying by medical staff, Do-Not-Resuscitate (DNR) orders, and the presence of comfort care plans. The cohort comprised 226 consecutive death events. Seven percent of patients had a written advance directive. DNR orders were available for 65% of patients and were entered into the charts on average 5.9 days prior to death. Thirty-eight percent of charts had evidence that staff recognized that the patients were dying. This prognosis was noted on average 3.8 days prior to death. According to chart notes, clinicians documented cancer patients as dying more frequently than patients with cardiovascular disease (P = 0.029). In the chart entries, comfort care plans were completed fully for 14% and partially for 27% of patients. On average, comfort care plans were put in place nine days prior to death. Cancer patients had significantly more frequent comfort care plans than patients with cardiovascular diseases (P < 0.001). In 59% of medical charts, there was no evidence of a comfort plan. Approximately one-third of dying patients received active life-sustaining treatment at time of death. These data highlight the need for systematic strategies to monitor patients' needs and to improve quality of care, especially during the last four days before death.     

Caring for dying patients—what are the attitudes of medical students?

Students entering medical school today will encounter an ageing population and a higher incidence of patients with terminal and life threatening illness. This study was carried out to determine the attitudes of pre-clinical medical students towards the care of patients for whom a cure is not possible. All students were invited to complete a 23-item questionnaire prior to any teaching in palliative care. Of the 186 students who participated in the study, 151 (79%) completed the pre-teaching questionnaire (males=59; females 90; median age 20 years; range 19–27]. Attitudes towards chronically ill and dying patients were generally positive. When comparing age with attitudes it was found that increasing age was associated with a more positive view of caring for patients with chronic or terminal illness, a more positive view of listening to patients reminisce and a more positive view of patients dying at home. Caring for patients at the end of life can be one of the most rewarding aspects of being a doctor. This study suggests that the majority of medical students have a positive attitude towards patients with chronic and terminal illness—the trend for encouraging older students to enter medicine may be an influencing factor.     

Involvement of palliative care in patients requesting medical assistance in dying

ObjectiveTo determine the level of palliative care involvement before and after medical assistance in dying (MAID) requests, and to compare the differences between those who completed MAID and those who requested but did not complete MAID.DesignRetrospective chart review.SettingThe Ottawa Hospital (TOH) in Ontario.ParticipantsNinety-seven patients who requested MAID at TOH between February 6, 2016, and June 30, 2017.Main outcome measuresCompletion of MAID.ResultsEighty-four patients were included in the study. Fifty patients (59.5%) completed MAID. The most common reasons for not completing MAID were death before completion of the required assessments (47.0%), ineligibility (26.5%), and loss of capacity (14.7%). The most common diagnoses were cancer (72.6%) and neurologic disease (11.9%). The most frequent reasons for requesting MAID were physical suffering (77.4%), loss of autonomy (36.9%), and poor quality of life (27.4%). Patients who completed MAID in this study were more likely to report physical suffering as the reason for their request than those who did not complete MAID (84.0% vs 67.6%; P = .08), yet only 23.8% of all patients requesting MAID had an Edmonton Symptom Assessment Scale completed. Before MAID request, 27.4% of patients had a community palliative care physician and 59.5% had palliative care involvement in any setting. The TOH palliative care team was involved in 46.4% of patients who requested MAID.ConclusionThere is still inadequate provision of palliative care for those requesting MAID. Guidelines, legislation, and guidance are needed to help physicians ensure patients are aware of and understand the benefits of palliative care in end-of-life decisions. However, the involvement of palliative care with patients who completed MAID was similar to those who did not complete MAID. Multicentre studies are needed to further explore the MAID process and clarify the role of palliative care in that process.     

Physicians' preferences and attitudes about end-of-life care in patients with an implantable cardioverter-defibrillator

Clinical guidance is deficient regarding deactivation of implantable cardioverter-defibrillators (ICDs) in patients with terminal illnesses. We hypothesized that many physicians are apprehensive about discussing ICD deactivation with their dying patients. Thus, we conducted an anonymous survey of all the physicians in the Department of Medicine at Unity Health System in Rochester, NY. The survey collected information about the knowledge and preferences of these physicians regarding the medical, ethical, and legal issues involved in caring for patients with an ICD and terminal illness. Of the 204 surveys distributed, 87 (43%) were returned. Among the physicians who responded, 64 (74%) reported experience caring for a patient with an ICD and terminal illness. Forty physicians (46%) either thought it was illegal or were not sure if it was legal to deactivate an ICD in these circumstances. However, if reassured about the legality of discontinuing ICD therapy, 79 (91%) of these same respondents said that they would be willing to discuss voluntary ICD deactivation with their dying patients. With increased knowledge about managing the withdrawal of this potentially life-prolonging therapy, physicians are likely to become more skilled at caring for dying patients with an ICD.     

Dying at home or in an institution: perspectives of Dutch physicians and bereaved relatives

Introduction Previous studies have shown that most people prefer to die at their own home. We investigated whether physicians or bereaved relatives in retrospect differently appreciate the dying of patients in an institution or at home. Materials and methods Of 128 patients with incurable cancer who were followed in the last phase of their lives, 103 passed away during follow-up. After death, physicians filled out a written questionnaire for 102 of these patients, and 63 bereaved relatives were personally interviewed. Results Of 103 patients, 49 died in an institution (mostly a hospital), and 54 died at home (or in two cases in a home-like situation). Patients who had been living with a partner relatively often died at home. Bereaved relatives knew of the patient’s wish to die at home in 25 out of 63 cases; 20 of these patients actually died at home. Thirty-one patients had no known preference concerning their place of dying. Most symptoms and the care provided to address them were equally prevalent in patients dying in an institution and patients dying at home. Bereaved relatives were in general quite satisfied about the provision of medical and nursing care in both settings. Conclusion We conclude that most patients’ preferences concerning the place of dying can be met. In about half of all cases, patients do not seem to have a clear preference concerning their place of dying, which is apparently not a major concern for many people. We found no indication that dying in an institution or at home involves major differences in the process and quality of dying.     

Documenting patients' end-of-life decisions

The anguish families experience when they are asked to make health care decisions for incompetent members has stimulated the search for an adequate procedure to document patients' end-of-life decisions. This study explores a method of recording competent patients' wishes via a "value history," a questionnaire that can guide families and the health care team during an incompetent person's terminal illness. Questions addressed were these: Can a primary care physician gather information from competent patients about their care before they become incompetent? Can a nurse practitioner gather the information as efficiently as a physician? Do patients want this information recorded in their charts? and, Is the primary care office as well as the patient's home an appropriate location to obtain a value history? Four hundred patients were invited to record their wishes for future care. Patients expressed that they wanted to be told the truth about their health and their health care, and they wanted to participate in decision-making, even while dying. The majority did not want to be maintained indefinitely on life-support systems. Patient responses were similar regardless of whether the NP or physician conducted the interview. A primary care office or patient's home are both suitable for filling out the value history. Because of the enthusiastic patient responses, the authors recommend that value histories become a routine part of a patient's medical record.     

Health professionals' resistance to euthanasia and assisted suicide: a personal view

This commentary evaluates the motives of health professionals' opposition to the legislation of assisted dying. We argue that there are no rational or justifiable grounds for such opposition in the case of patients who are suffering unbearably and whose request to be helped to die is competent, enduring and voluntary. We then engage in plausible speculation about what other, more hidden motives of health professionals might lead to them reject the legislation of assisted dying. We assert that, while these hidden motives are understandable from a psychological perspective, they also suffocate the self-determination of palliative patients. Therefore, the challenge is for health professionals to reconsider extending their own limits in order to fully support their patients' needs. Finally we discuss the consequences of NOT legalising assisted dying, and conclude that this position might be more detrimental than legalising it.     

End-of-life care in hospitalized adults with complex congenital heart disease: care delayed, care denied

Adults with congenital heart disease represent a growing patient population. Notwithstanding dramatic improvements in survival and life expectancy over recent decades, many of these patients remain at risk of premature death from progressive heart disease and would benefit from the principles of palliative and end-of-life care. Data on end-of-life care in this patient group are, however, lacking. We report a retrospective study of 48 patients with congenital heart disease who died while admitted to our hospital (mean age at death 37 ± 14 years). We describe circumstances of death, end-of-life discussions, and the provision of end-of-life care. The majority of patients had complex congenital heart disease and were considered to be in the end stage of their disease. Despite this, only a minority of patients had documented end-of-life discussions prior to their terminal admission and most received continuing aggressive medical treatment up to their demise. Advanced palliative and end-of-life care strategies should be developed for and provided to this group of patients, with the dual aims of reduction of unwarranted therapies and enhancement of the quality of death and dying.     

Factors influencing preferences for place of terminal care and of death among cancer patients and their families in Korea

Goals of work This study examined cancer patient and family member preferences—and the reasons for the preferences—regarding place of terminal care and of death.Patients and methods We constructed a questionnaire that included demographic, clinical, and support network data for 371 patients who were treated at any of the seven university hospitals or the National Cancer Center in Korea and 281 of their family members.Main results About half of the interviewed patients and half of the family members expressed a preference for the patient being cared for and dying at home. The preference reflected a wish for patients to live out their lives in privacy and to be with their family when their life ended. Those who expressed a preference to be cared for or to die in a hospital wanted to get medical treatment during the last days of life and to relieve their families of the burden of caring for them. Of the variables examined, support network factors and some sociodemographic factors (sex, family members age, and place of residence) were strongly predictive of preferences.Conclusion A majority of cancer patients preferred to receive terminal care at home. Cancer patients and family members with strong support groups were more likely to prefer the home as the place of terminal care and dying. Hence, improving support networks might increase the proportion of patients receiving home care and dying at home.     

Hospice and ESRD: knowledge deficits and underutilization of program benefits

Although hospice care for dying patients on dialysis has been recommended in clinical practice guidelines and policy statements of professional nephrology organizations, only a minority of dying patients on dialysis currently receive hospice services. This retrospective qualitative study investigated a variety of factors contributing to the low referral rate for patients with end stage renal disease (ESRD). Interviews (N=338) were conducted with dialysis facility professionals (RN staff nurses, social workers, nurse managers) in ESRD networks 1, 5, and 12 using a standardized telephone survey. The sample (N=448) consisted of patients who discontinued dialysis and died between September 2005 and February 2006. The study illuminated a striking variation by discipline in the understanding of Medicare ESRD benefits and Medicare hospice benefits as they apply to patients with ESRD. Social workers were more knowledgeable that patients on dialysis were eligible for the Medicare hospice benefit while continuing dialysis with a non-kidney-related terminal diagnosis than RN staff nurses or nurse managers (79% of social workers, 64% of nurse managers, and 48% of RN staff nurses were knowledgeable [p < 0.001]). Nurses were significantly more likely than social workers to be uncertain about the process of hospice referral (28% of nurse managers, 17% of RN staf nurses, and 9% of social workers [p < 0.001]). Additionally, the study found that depending on geographic region, hospice programs varied in accepting patients who wish to continue dialysis treatment. This study identified multiple barriers to referral to hospice care ofpatients with ESRD who are dying. It illustrates that hospice organizations, dialysis facilities, and dialysis unit nurses need education regarding the eligibility for Medicare hospice benefits in conjunction with a patient receiving the Medicare ESRD benefit.     

居家老年临终患者主要照顾者照护需求的调查

目的 调查居家老年临终患者主要照顾者照护需求并探究其影响因素.方法 对214名居家老年临终患者主要照顾者采用Katzs ADL量表和自设居家老年临终患者主要照顾者照护需求调查表进行问卷调查.结果 居家老年临终患者主要照顾者照护需求总分为(94.86±10.03)分,各维度中以医疗照护需求得分最高,约为(27.04±3.32)分,精神慰藉需求得分最低,约为(21.95±3.01)分;性别、家庭照护负担程度及自感健康状况是影响居家老年临终患者主要照顾者照护需求的主要影响因素(均P<0.01).结论 居家老年临终患者主要照顾者照护需求呈中上水平,且受多个因素影响.医护人员应进行综合评估,制定个性化服务方案以满足居家老年临终患者主要照顾者的照护需求,共同提高老年临终患者及主要照顾者的生活质量.     

The role of the mental health professional in helping significant others of persons who are assisted in death

The involvement of mental health professionals with people who are considering assisted death due to a terminal illness is beginning to be discussed more frequently in the professional literature; however , one neglected area is working with the significant others of the person who is suffering. This article covers ways both before and after the death that counselors can help significant others cope with the dying process , the decision to request assisted death , and the death itself .     

Assisted dying and end-of-life symptom management

This qualitative study aimed to describe symptom management strategies oncology nurses have used in responding to and preventing requests of terminally ill patients with cancer for assisted dying (AD). The study involved secondary analysis of written stories from 36 nurses who agreed to describe their experiences with a request for assisted dying. Of the 36 nurses, 12 refused to support patient requests for AD and described their attempts to control the circumstances of dying by controlling symptoms. The remaining 24 nurses denied ever receiving requests for AD and described symptom management practices believed to prevent such requests. Data were analyzed using Denzin's process of interpretive interactionism. Two themes emerged from the participant's stories: alternative strategies for AD and prevention of requests for AD. The participants shared many examples of clinical interventions and other features of nursing responses to relieve or prevent suffering including physical, emotional, and spiritual care practices; comfort and medication management; and service as teacher-advocate. Both the nurses who had received requests for AD and those who had not used a variety of similar symptom management approaches to alleviate suffering. In doing so, these nurses upheld current standards of both their professional and specialty organizations.     

Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients

OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical decision making. We sought to determine how physicians view the role of family interests in surrogate medical decision making. DESIGN: Cross-sectional mail survey. SETTING: Remote study.PATIENTS: Surveyed were neonatologists, pediatric intensivists, and medical intensivists affiliated with American medical schools. MEASUREMENTS AND MAIN RESULTS: A total of 327 (55%) of 596 surveys were returned; 35% of respondents were pediatric intensivists, 39% were neonatologists, and 26% were medical intensivists. The majority of respondents believed that family interests should be considered in decisions for incompetent patients, even if those interests are not necessarily important interests of the patient. Less than 10% preferred the traditional model in which the physician-patient relationship is exclusive and family interests are excluded. Medical intensivists, and those who described themselves as more religious, more opposed to healthcare rationing, and more protective of patients, tended to prefer patient-centered surrogate decision-making models. Physicians who treat children, especially neonatologists, were more accepting of family-centered surrogate decision-making models than were physicians who exclusively treat adults. CONCLUSIONS: A majority of the academic intensivists in our study believed that family interests should play an important role in medical decision making for incompetent patients. Our findings suggest that the traditional view of the physician-patient relationship may represent an overly simplistic model for medical decision making.     

Palliative care in district general hospitals: the nurse's perspective

Most patients with a terminal illness die in hospital, yet the opinions of their prime carers are largely ignored. This study investigated registered nurses' perceptions of palliative care in district general hospitals. A random sample of 263 nurses was surveyed, using a pre-piloted questionnaire, and results showed that 70% of general ward nurses believe that managing care of the dying is an integral part of hospital care. However, their dissatisfaction with the care they give is reflected in the mere 8% who consider hospital an ideal setting for patients who are dying. Although nurses are confident in their physical/clinical role, dealing with psychosocial issues is more problematic. A minority feel confident in discussing death and dying with the patient. Barriers to optical palliative care on general wards were perceived as lack of appropriate education and training, work pressures, and lack of support from medical colleagues and managers.     

Patient Preference for Medical Information in the Emergency Department: Post-Test Survey of a Random Allocation Intervention

IntroductionHealth literacy can create barriers for ED staff attempting to communicate important information to patients. Video discharge instructions may address some of these barriers by improving patients’ comprehension of medical information and addressing health literacy challenges.MethodsOne hundred ninety-six patients diagnosed with either hypertension, asthma, congestive heart failure, or diabetes were randomly assigned to 1 of 2 interventions: watching video medical information followed by reviewing written discharge instructions or written instructions first, followed by video education. After the interventions, patients from both groups completed surveys assessing their preferences for receiving medical information.ResultsWe found that 44% (n = 86/196) of ED patients preferred receiving medical information in video format, whereas 18% (n = 35/196) favored the written format, and 38% (n = 75/196) of the sample preferred receiving both formats. Fifty-five percent of men (n = 38/69) preferred the video format, whereas 42% (n = 51/122) of women indicated a preference for both video and written formats. Learning something new from the video was associated with patient preference for receiving medical instructions, (χ2 [1] = 9.39, P = 0.01) and the desire to watch medical videos or read information at home via the Internet (χ2 [1] = 18.46, P < 0.001).DiscussionThe majority of ED patients in this study preferred medical information in video or video plus written formats, compared with written-only format.     

The medicalisation of the dying self: The search for life extension in advanced cancer

Although many studies have previously examined medicalisation, we add a new dimension to the concept as we explore how contemporary oncological medicine shapes the dying self as predominantly medical. Through an analysis of multiple case studies collected within a comprehensive cancer centre in Ontario, Canada, we examine how people with late‐stage cancer and their healthcare providers enacted the process of medicalisation through engaging in the search for oncological treatments, such as experimental drug trials, despite the incurability of their disease. The seven cases included 20 interviews with patients, family, physicians and nurses, the analysis of 30 documents and 5 hr of field observation. A poststructural perspective informed our study. We propose that searching for life extension enacts medicalisation by shaping the dying person afflicted with terminal cancer into new medical subjectivities that are knowledgeable, active, entrepreneurial and curative. Participants initially took up medical thinking from the formal oncology system, but then began to apply and internalise medical rationalities to alter their personhood, thereby generating new curative possibilities for themselves. For people seeking life extension, the embodied and day‐to‐day experiences of suffering and being close to death became expressed and moderated in fundamentally medicalised terms.