Missed opportunities: saving lives through organ donation following voluntary assisted dying

Organ donation after voluntary assisted dying (VAD) in Australia may potentially increase organ transplant rates. Despite significant international experience with donation after VAD, there has been little discussion of this in Australia. We review potential ethical and practical concerns relating to donation after VAD and advocate action to establish programmes in Australia that ensure safe, ethical and effective donation after VAD.     

Responding to legal requests for physician-assisted suicide. University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel

In 1998, 15 terminally ill Oregon residents ended their lives with overdoses of medications supplied legally by their physicians. Many more people consider this possibility. This paper examines the ways in which the physician's response to requests for assisted suicide may change in an era of legalization, articulates some of the resulting conceptual challenges, and provides practical advice to physicians facing such requests. In areas where it is legal, assisted dying becomes one of the many options that can be freely considered for terminally ill patients with extreme suffering. Some patients even view assisted death as a right that can be expected on demand. We consider the ethical implications of disclosing assisted dying to patients as an option of last resort and suggest that physicians working in environments where assisted dying is legal are obliged to do so. However, we conclude that physicians should not encourage patients to hasten death even when practicing in jurisdictions that allow assisted dying. Furthermore, without abandoning the model, we suggest that strict informed consent does not fully address patients' needs at this time. Physicians must also focus on patients' broader biopsychosocial concerns and help them identify solutions through empathic listening and emotional support. We provide a framework and vocabulary for physicians to use when responding to requests for assisted suicide. Physicians should clarify the request, explore and address the patient's concerns, achieve a shared understanding of the goals of treatment, search for less harmful alternatives, express to the patient what they are willing to do, discuss the relevant legal issues, and share their decision making with colleagues.     

There is hope for the future: national survey results reveal that geriatric medicine fellows are well-educated in end-of-life care

OBJECTIVES: To assess the status of geriatric medicine (GM) fellows' training experiences in end-of-life care via self-report. DESIGN: Anonymous surveys completed by mail, Web access, and telephone. SETTING: U.S. accredited GM fellowship training programs. PARTICIPANTS: Two hundred ninety-six surveys were sent to graduating GM fellows in 1- and 2-year programs across the Unites States. MEASUREMENTS: Measurements assessed self-reported attitudes, quantity and quality of end-of-life care education, preparation to provide care, and perceived value of caring for dying patients. RESULTS: Response rate was 74%. Ninety-five percent or more of respondents held positive views about physicians' responsibility and ability to help dying patients. Seventy percent of fellows had completed a rotation focused on end-of-life care. Fellows who had done such rotations rated their end-of-life care education as highly as their overall geriatrics training. Fellows frequently received teaching in many end-of-life care topics, with lower rates of teaching how to say goodbye and responding to requests for assisted suicide. Overall, fellows felt well prepared to care for dying patients. Four factors independently predicted such preparedness: having had a palliative or end-of-life care rotation, being female, having been taught how to say goodbye to patients, and perceiving that it is important to attending physicians that fellows learn to care for dying patients. CONCLUSION: GM fellows feel their end-of-life care education is excellent and feel prepared to take care of dying patients. It is critical that geriatricians in training have access to and take advantage of palliative and end-of-life care rotations.     

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.     

Family participation during resuscitation: an option

We began to question the fairness of a policy to exclude close family members from the treatment room during attempted resuscitation of cardiac arrest victims in 1982 after 13 of 18 surviving relatives (72%) who were surveyed about their experiences during the attempted resuscitation of a family member responded that they would have liked to have been present during the resuscitation. We report the results of a program instituted at that time that allowed selected family members to be present during resuscitation efforts. Family members were asked by a chaplain or nurse if they wished to be present in the resuscitation room, and those accepting were accompanied by a supporting emergency staff member who explained the milieu of the code room. None of the participants interfered with resuscitation efforts. Seventy persons who participated were later contacted by one of the chaplains and asked to complete a survey form. Forty-four of 47 respondents (94%) who had been present during resuscitation believed that they would participate again. Thirty-six (76%) thought that adjustment to the death or grieving was facilitated by their witnessing the resuscitation; 30 (64%) felt that their presence was beneficial to the dying family member. We conclude that lay person may wish to be with family members who may be dying even though resuscitation efforts are being made, and that it is reasonable to inquire about this wish. This experience has assisted the grieving process for many and has not interrupted or adversely affected medical efforts at resuscitation.     

Technology and “natural death”: A study of older people

This paper reports a qualitative study in which the aim was to examine older peoples' beliefs and risk perceptions regarding the use of innovative health technologies in end-of-life care and to relate these beliefs to their ideas about 'natural death'. Pictures, story boards and media extracts were used during interviews and focus groups, and the research team was assisted by an advisory group which included participants. Seventy-seven older people from three age cohorts (65-74; 75-84; 85 years and over) and from three contrasting areas of Sheffield, UK took part. Key messages are for the need to ensure that 'life prolonging' and 'basic care' technologies are provided in ways that respect a variety of understandings about love, comfort, obligation and burden during dying. The study highlights: the role that older people have in caring for the dying and their needs for support and training; information needs about issues of ethics, clinical practice and advance care planning; and the willingness of older research participants to discuss these matters and to enjoy the process of so doing. Developing a programme of public education and information was identified as an issue which should be addressed urgently if older people and their family carers are to be better equipped to make informed choices about these aspects of care. The study draws together issues previously considered under the largely separate remits of palliative care and gerontology. It is being used to provide advice on palliative and end-of-life care, especially to nursing and medical practitioners and to voluntary sector organisations as they begin to assess the need for action in this field.     

HIV, the right to die, and control

The issue of the right to die in cases involving patients with HIV/AIDS is examined. Physician-assisted suicide is addressed along with issues pertaining to control and choice in the assisted dying debate. In particular, it is noted that there is an increasing awareness of an overriding desire for self-determination in most patients requesting an assisted death. The author argues that because death concentrates the mind and strips away superfluous concerns, the person dying probably knows which choices are best for him or her, and therefore, should be granted the final say.     

Effects of intermittent negative pressure ventilation on respiratory muscle function in patients with severe chronic obstructive pulmonary disease

The reduced respiratory muscle strength and increased work of breathing in patients with severe chronic obstructive pulmonary disease (COPD) may predispose these patients to the development of respiratory muscle fatigue and consequent respiratory failure. To test the hypothesis that these patients may be experiencing chronic respiratory muscle fatigue, we studied the effects of resting the respiratory muscles in a group of patients with severe COPD. Fifteen stable patients with severe COPD were randomized into study and control groups. In 8 study group patients (Group B), breathing was assisted with a negative pressure ventilator 3 to 6 h daily for 3 consecutive days. The remaining 7 patients served as controls (Group A) and did not receive any intervention. Baseline lung function was evaluated by spirometry and arterial blood gas determinations. Respiratory muscle strength and endurance were evaluated by maximal inspiratory and expiratory pressures (MIP and MEP, respectively) and the maximal duration that isocapnic hyperventilation equal to 50 and 70% of the 12-s maximal voluntary ventilation could be sustained (DSV). Baseline DSV was determined as the best effort of several practice trials. All measurements were repeated on the final day of assisted ventilation approximately 2 to 3 h after its discontinuation. After assisted ventilation, the DSV at 50 and 70% of the maximal voluntary ventilation improved significantly (p less than 0.05). Maximal inspiratory pressure and MEP increased to 114% (p less than 0.05) and 112% (p = 0.05) of baseline values, respectively. Mean arterial PCO2 in the hypercapnic subgroup of Group B patients decreased from 60 mm Hg before to 52 mm Hg after assisted ventilation (p less than 0.05).(ABSTRACT TRUNCATED AT 250 WORDS)     

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.     

Pain, dyspnea, and the quality of dying in long-term care

OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the quality of dying in long-term care.
DESIGN: After-death interviews.
SETTING: Stratified random sample of 111 nursing homes and residential care and assisted living facilities in four states.
PARTICIPANTS: Paired interviews from facility staff and family caregivers for 325 deceased residents.
MEASUREMENTS: The outcome variable was the Quality of Dying in Long-Term Care (QOD-LTC), a psychometrically sound, retrospective scale representing psychosocial aspects of the quality of dying, obtained from interviews with family caregivers. Facility staff reported the presence, frequency, and severity of pain and dyspnea.
RESULTS: During the last month of life, nearly half of residents experienced pain or dyspnea. QOD-LTC scores did not differ for residents with and without pain (4.15 vs 4.02, P =.16). Overall, residents with dyspnea had better QOD-LTC scores than those without dyspnea (4.20 vs 3.99, P =.006). The association between dyspnea and a better QOD-LTC score was strongest in cognitively impaired residents and for those dying in residential care and assisted living facilities.
CONCLUSION: For residents dying in long-term care, pain and dyspnea were not associated with a poorer quality of dying as perceived by families of deceased residents. Instead, dyspnea may alert staff to the need for care. Initiatives to improve the quality of dying in long-term care should focus not only on physical symptoms, but also on the alleviation of nonphysical sources of suffering at the end of life.     

Open regulation and practice in assisted dying

The Netherlands, Oregon and Switzerland are the only areas in the world where assistance in dying has legally been practised in recent years. This article provides a detailed comparison of the history of the origins, legislation, monitoring systems and the extent of assistance in dying in these three places. It shows that the actual practice in Switzerland which, unlike Oregon, also allows assistance in suicide by means of infusions or gastric tubes, can today be technically quite similar to the permitted practice of active euthanasia on request in the Netherlands. Considering the preconditions restricting these practices, Swiss regulations are the most open, in that the law requires neither a medical second opinion (as in both the Netherlands and Oregon) nor the existence of a terminal illness (as in Oregon) as prerequisite to assistance in dying. In 2001, the proportion of assisted deaths (as reported to the authorities) in all deaths was almost ten times higher in the Netherlands (1.5% of all deaths) then in Oregon (<0.1% of all deaths) or Switzerland (0.2% of all deaths). The analysis of the different normative concepts underlying legislation reveals that in the Netherlands the basis for non-prosecution lies in the conflict of the physician's duties to respect life versus relief of suffering, while in the USA and in Switzerland the right-to-die concept plays a major role. These two concepts allow appreciation of distinctions between the roles of the physician in end-of-life practices and between assisted suicide and voluntary active euthanasia.     

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.     

Symptom experience of dying long-term care residents

OBJECTIVES: To describe the end-of-life symptoms of nursing home (NH) and residential care/assisted living (RC/AL) residents, compare staff and family symptom ratings, and compare how staff assess pain and dyspnea for cognitively impaired and cognitively intact residents.
DESIGN: After-death interviews.
SETTING: Stratified random sample of 230 long-term care facilities in four states.
PARTICIPANTS: Staff (n=674) and family (n=446) caregivers for dying residents.
MEASUREMENTS: Interview items measured frequency and severity of physical symptoms, effectiveness of treatment, recommendations to improve care, and staff report of assessment.
RESULTS: Decedents' median age was 85, 89% were white, and 77% were cognitively impaired. In their last month of life, 47% had pain, 48% dyspnea, 90% problems with cleanliness, and 72% symptoms affecting intake. Problems with cleanliness, intake, and overall symptom burden were worse for decedents in NHs than for those in RC/AL. Treatment for pain and dyspnea was rated very effective for only half of decedents. For a subset of residents with both staff and family interviews (n=331), overall ratings of care were similar, although agreement in paired analyses was modest (kappa=−0.043–0.425). Staff relied on nonverbal expressions to assess dyspnea but not pain. Both groups of caregivers recommended improved application of treatment and increased staffing to improve care.
CONCLUSION: In NHs and RC/AL, dying residents have high rates of physical symptoms and need for more-effective palliation of symptoms near the end of life.     

Hemochromatosis patients as voluntary blood donors.

The present study was designed to investigate hemochromatosis patients' suitability as blood donors as well as their perceptions and experience with the current public donation system. Participants were gathered from a list of current hemochromatosis patients (n=120) and members of the Canadian Hemochromatosis Society (n=1000). Of the 1120 surveys mailed out to these groups, 801 surveys were returned completed. The sample respondents had a mean age of 57.44 years (SD=12.73; range 19 to 87 years), and 57% were men. It was found that 20% (160) of the respondents have donated blood since their diagnosis; however, only 12% of the respondents indicated that they use voluntary blood donation as a means of maintaining their iron levels. Forty per cent of the respondents indicated that they had been refused from voluntary donation. Despite the fact that in May 2001 the Canadian Blood Services, in collaboration with the Canadian Hemochromatosis Society, began a promotion campaign to encourage hemochromatosis patients to become voluntary blood donors, the present study found that 15% of the respondents reported having been refused from the voluntary blood donation service due to the diagnosis of hemochromatosis. With respect to quality of life, it was found that individuals who donate blood were generally healthier with respect to physical functioning and bodily pain, however, these findings may indicate that hemochromatosis patients who are healthier are better able to donate at public blood banks, rather than that voluntary blood donation has an effect on the donors' physical functioning over phlebotomy clinic users. These study findings suggest that although there may be other medical factors limiting individuals from donating, hemochromatosis patients are interested in being voluntary blood donors and this potential resource is currently under-used.     

Non-medical palliative care and education to improve end-of-life care at geriatric health services facilities: A nationwide questionnaire survey of chief nurses

Background:   Geriatric health services facilities (GHSF) are expected to assume a growing role in caring for the dying elderly. However, research in this area has so far been scant. The purpose of the present study is to reveal the status of non-medical palliative care and staff education aiming at improving and enhancing end-of-life care at GHSF.
Methods:   The subjects were 2876 chief nurses of GHSF. Data was collected through a mailed questionnaire in 2003. The questionnaire covered the following: (i) staff perception of end-of-life care policies; (ii) staff education; and (iii) available non-medical care. To evaluate the factors correlated with end-of-life care policies at GHSF, we divided the facilities into two groups.
Results:   We analyzed the answers collected from 313 facilities with a progressive policy toward end-of-life care (PP group) and 818 with a regressive policy toward it (RP group). It was found that staff training was conducted more frequently among PP facilities. Generally, nurses in the PP facilities were more confident that they could provide comprehensive on-site end-of-life care and grieving support, but did not feel so sure about their ability to provide better end-of-life environments for dying residents and family by organizing outside support from voluntary and/or governmental organizations and religious organization for healing and to pursue appropriately a written follow-up communication with the bereaved family.
Conclusions:   Our results suggest that providing GHSF staff with education about end-of-life issues or setting up collaboration with the outside is an important factor to enhance overall end-of-life care at these facilities.     

Inflammatory bowel disease meets fertility: A physician and patient survey

Background and aimsInflammatory bowel disease (IBD) can affect patients during their childbearing years. Literature evidence is scarce regarding the level of knowledge among health care professionals (HCPs) and patients about the impact of IBD on fertility. The aim of this survey was to investigate HCPs' and patients' knowledge on fertility, pregnancy, and sexual function, to evaluate how HCPs approach this topic and to report patients’ reproductive outcomes.MethodsSubjects were invited to anonymously complete an online questionnaire collecting data on demographics, patients' disease characteristics, Crohn's and colitis pregnancy-specific disease-related knowledge (CCPKnow), family planning, reason of childlessness, pregnancy outcomes, need for assisted reproductive technology, impact on sexual function, and availability of patients’ information regarding IBD and pregnancy.ResultsA total of 257 HCPs from 40 countries and 793 patients (615 females, 176 males and 2 who preferred not to disclose their gender; 396 (50%) with ulcerative colitis, 381 (48%) with Crohn's disease, 14 (1.8%) with undetermined IBD) from 4 countries completed the survey. In total, 98.4% of HCPs had good or very good pregnancy-specific knowledge according to CCPKnow score, compared to only 29.3% of patients. Of the women surveyed, 56.3% had no children (14.1% due to a voluntary choice). A total of 427 pregnancies and 401 live births were reported in 266 women. Twenty-four pregnancies (5.6%) in 22 women required assisted reproductive technologies (ART). There were no more complications in pregnancies resulting from ART compared with spontaneous conception (5/24; 20.8% vs 81/401; 20.2%). Three quarters of IBD patients (75.6%) had breastfed. An impaired sexual function was found in one-fifth (21.9%) of men with IBD, while two-thirds (66.1%) of the women reported sexual function impairment. Surprisingly, 63% of patients reported not having received any information about IBD and pregnancy, and only 10% of patients had received information from their IBD specialist. In addition, 42.1% and 36% of HCPs had already referred a patients to a medically assisted reproduction center to receive general information about their reproductive health and about options of fertility preservation (e.g., cryopreservation), respectively.ConclusionIBD patients have a poor knowledge about the impact of IBD on fertility and pregnancy and HCPs do not sufficiently inform their patients. More information on these topics is needed for IBD patients.     

Understanding Pediatric Inner-City Asthma: An Explanatory Model Approach

Explanatory models (EMs) for asthma among inner-city school-age children and their families were examined as a means of better understanding health behaviors. Children and parents were interviewed about their concepts of asthma etiology, asthma medications, and alternative therapies. Drawings were elicited from children to understand their beliefs about asthma. Nineteen children with 17 mothers from a variety of cultural backgrounds were interviewed. Among children, contagion was the primary EM for asthma etiology (53%). Twenty-five percent of children reported fear of dying from asthma, while fear of their child dying from asthma was reported by 76% of mothers. Mothers reported a variety of EMs, some culturally specific, but the majority reported biomedical concepts of etiology, pathophysiology, and triggers. Although 76% of mothers knew the names of more than one of their children's medications, 47% thought their child's medications all had similar functions. Thirty-five percent of families used herbal treatments and 35% incorporated religion into asthma treatment. Seventy-one percent of families had discontinued medications and 23% reported currently not giving anti-inflammatory medication. Reasons for discontinuing daily medications included fears of unknown side effects (53%), addiction (18%), tachyphylaxis (18%), and feeling that their child was being given too much medicine (23%). The traditional focus of asthma education is not sufficient to ensure adherence. Asthma education for children should address their views of etiology and fears about dying from asthma. Conversations with parents about their EMs and beliefs about medications and alternative therapies could assist in understanding and responding to parental concerns and choices about medications and help achieve better adherence.     

Understanding pediatric inner-city asthma: an explanatory model approach.

Explanatory models (EMs) for asthma among inner-city school-age children and their families were examined as a means of better understanding health behaviors. Children and parents were interviewed about their concepts of asthma etiology, asthma medications, and alternative therapies. Drawings were elicited from children to understand their beliefs about asthma. Nineteen children with 17 mothers from a variety of cultural backgrounds were interviewed. Among children, contagion was the primary EM for asthma etiology (53%). Twenty-five percent of children reported fear of dying from asthma, while fear of their child dying from asthma was reported by 76% of mothers. Mothers reported a variety of EMs, some culturally specific, but the majority reported biomedical concepts of etiology, pathophysiology, and triggers. Although 76% of mothers knew the names of more than one of their children's medications, 47% thought their child's medications all had similar functions. Thirty-five percent of families used herbal treatments and 35% incorporated religion into asthma treatment. Seventy-one percent of families had discontinued medications and 23% reported currently not giving anti-inflammatory medication. Reasons for discontinuing daily medications included fears of unknown side effects (53%), addiction (18%), tachyphylaxis (18%), and feeling that their child was being given too much medicine (23%). The traditional focus of asthma education is not sufficient to ensure adherence. Asthma education for children should address their views of etiology and fears about dying from asthma. Conversations with parents about their EMs and beliefs about medications and alternative therapies could assist in understanding and responding to parental concerns and choices about medications and help achieve better adherence.     

Direct care workers' response to dying and death in the nursing home: a case study

OBJECTIVES: This paper is based on research that explored the cultural construction of dying and death in nursing homes and assisted living facilities in a large Northeastern city. It focuses on direct care workers' responses to elders' dying and death within the facility. METHODS: Data were gathered in a multiyear, multisite study through formal ethnographic interviews, informal conversations, and on-site observations of staff members. RESULTS: We introduce the case of Jayson, an activities director in a for-profit nursing home. We show how his belief system and experiences outside the facility, especially those concerning dying and death, shape his view of the nature and content of his work and his reaction to residents' deaths. DISCUSSION: We suggest caretaking at the intersection of gender, race, socioeconomic status, and the inside and outside life of direct care workers as topics for future research.