Background: Coercion can cause harm to both the patient and the patient’s family. Few studies have examined how the coercive treatment of a close relative might affect young next-of-kin. Research questions: We aimed to investigate the views and experiences of health professionals being responsible for supporting young next-of-kin to patients in mental health care in relation to the needs of these young next-of-kin in coercive situations and to identify ethical challenges. Research design: We conducted a qualitative study (...) based on semistructured, focus group interviews and an individual interview. Participants and research context: We held three focus group interviews with six to seven children-responsible staff in each group and one individual interview with a family therapist. The participants were recruited from three hospital trusts in the eastern part of Norway. Ethical considerations: The study was approved by the National Data Protection Official for Research and based on informed consent and confidentiality. Findings: Coercion was not a theme among the participants in relation to their work with young next-of-kin, and there was much uncertainty related to whether these young people need special support to deal with the coercive treatment of their close relative. Despite the uncertainty, the study indicated a need for more information and emotional support among the youth. Discussion: Few studies have addressed the potential impact of coercive treatment of a close family member on young next-of-kin. The findings were consistent with existing research but highlighted disagreement and uncertainty among the children-responsible staff about to what extent the young next-of-kin should visit and whether they should enter the ward unit or not. We identified ethical challenges for the children-responsible staff related to the principle of not inflicting harm. Conclusion: From the perspective of children-responsible staff, it appears that the coercive treatment of a close family member entails a need for extra support of young relatives both in relation to information and the facilitation of visits, but more systematic knowledge about these issues is needed. (shrink)

BackgroundNorway has extensive and detailed legal requirements and guidelines concerning involvement of next of kin during involuntary hospital treatment of seriously mentally ill patients. However, we have little knowledge about what happens in practice. This study explores NOK’s views and experiences of involvement during involuntary hospitalisation in Norway.MethodsWe performed qualitative interviews-focus groups and individual-with 36 adult NOK to adults and adolescents who had been involuntarily admitted once or several times. The semi-structured interview guide included questions on experiences with and (...) views on involvement during serious mental illness and coercion.ResultsMost of the NOK were heavily involved in the patient’s life and illness. Their conceptions of involvement during mental illness and coercion, included many important aspects adding to the traditional focus on substitute decision-making. The overall impression was, with a few exceptions, that the NOK had experienced lack of involvement or had negative experiences as NOK in their encounters with the health services. Not being seen and acknowledged as important caregivers and co sufferers were experienced as offensive and could add to their feelings of guilt. Lack of involvement had as a consequence that vital patient information which the NOK possessed was not shared with the patient’s therapists.ConclusionsDespite public initiatives to improve the involvement of NOK, the NOK in our study felt neglected, unappreciated and dismissed. The paper discusses possible reasons for the gap between public policies and practice which deserve more attention: 1. A strong and not always correct focus on legal matters. 2. Little emphasis on the role of NOK in professional ethics. 3. The organisation of health services and resource constraints. 4. A conservative culture regarding the role of next of kin in mental health care. Acknowledging these reasons may be helpful to understand deficient involvement of the NOK in voluntary mental health services. (shrink)

Our recent publication in Neuroethics re-constructed the perspectives of family caregivers of patients with disorders of consciousness on functional neurodiagnostics. Two papers criticized some of our methodological decisions and commented on some conclusions. In this commentary, we would like to further explain our methodological decisions. Despite the limitations of our findings, which we readily acknowledged, we continue to think they entail valid hypotheses that need further investigation. We conclude that some caregivers with high hopes for the recovery of their loved (...) ones with DOC will most likely not consider results of functional neuroimaging as guiding information for treatment decisions, despite efforts taken to deliver information to them. Caregivers of that type might argue that such test-results are not a reliable source of information for the judgement of whether their loved one is likely going to recover or not. We introduce the concept of epistemic beliefs to formulate this hypothesis and suggest that future qualitative studies in this area should be aware of such beliefs when investigating the effects of functional neurodiagnostics on knowledge communication and shared decision making for patients with DOC. (shrink)

In their contribution ‘Ethics of the algorithmic prediction of goal of care preferences’1 Ferrario et al elaborate a from theory to practice contribution concerning the realisation of artificial intelligence (AI)-based patient preference prediction (PPP) systems. Such systems are intended to help find the treatment that the patient would have chosen in clinical situations—especially in the intensive care or emergency units—where the patient is no longer capable of making that decision herself. The authors identify several challenges that complicate their effective development, (...) application and evaluation—and offer solutions to them. One of these issues is the question of who should ultimately use said systems. While it is undisputed that clinicians should use these AI systems for their decision-making process, there is an ongoing debate about whether next of kin should use them as well. The authors advocate that ‘’access should be provided to both clinicians and loved ones with due explanations and as desired’. We will disagree with this assessment and explain in our commentary why it is important that surrogates provide their own assessments with as little external (AI) influence as possible. Why do next of kin actually participate in the process of preference finding and treatment decision-making? A key reason is that clinicians usually …. (shrink)

BackgroundEthically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.MethodsWe performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.ResultsThe doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. In conflict situations, (...) many doctors were more concerned about the opinion of next of kin than ensuring the patient’s best interest.ConclusionsMany end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient’s values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed. (shrink)

BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic (...) and health-related data for observational research.MethodsWe conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues.ResultsSudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives.ConclusionsSudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well. (shrink)

BackgroundFunctional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome and the minimally conscious state. It remains unclear how it informs surrogate decision-making.ObjectiveTo explore how the next of kin of patients with disorders of consciousness interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.Methods and SampleWe conducted problem-centered interviews with seven next of kin of patients with DOC who had undergone a functional HD-EEG (...) examination at a neurological rehabilitation center in Germany. The examination included an auditory oddball paradigm and a motor imagery task to detect hidden awareness. We analyzed the interview transcripts using structuring qualitative content analysis.ResultsRegardless of the diagnostic results, all participants were optimistic of the patients’ meaningful recovery. We hypothesize, that participants deal with the results of examinations according to their belief system. Thus, an unfavorable evaluation of the patient’s state had the potential to destabilize the participant’s belief system. To re-stabilize or to prevent the destabilization of their belief system, participants used different strategies. Participants accepted a “positive” HD-EEG result since it stabilized their belief system.ConclusionWe hypothesize, that a group of next of kin of patients with DOC deals with functional neurodiagnostics results on the basis of the result’s value and their high hope that the patient will recover meaningfully. A psychological mechanism seems to moderate the impact of functional neurodiagnostics on surrogate treatment decisions. (shrink)

This study focuses on the meaningful encounters of patients and next of kin, as seen from their perspective. Identifying the attributes within meaningful encounters is important for increased understanding of caring and to expand and develop earlier formulated knowledge about caring relationships. Caring theory about the caring relationship provided a point of departure to illuminate the meaningful encounter in healthcare contexts. A qualitative explorative design with a hermeneutic narrative approach was used to analyze and interpret written narratives. The phases (...) of the analysis were naïve interpretation, structure analysis on two different levels (narrative structure, and deep structure through metaphors) and finally a dialectic interpretation. The narratives revealed the meaning of the meaningful encounter as sharing, a nourishing fellowship, common responsibility and coming together, experienced as safety and warmth, that gives, by extension, life‐changing moments, a healing force and dissipated insight. The meaningful encounter can be seen as a complex phenomenon with various attributes. Understanding the meaningful encounter will enable nurses to plan and provide professional care, based on caring science, focusing on patient and next‐of‐kin experiences. (shrink)

In the context of deceased organ donation, donors are routinely tested for HIV, to check for suitability for organ donation. This article examines whether a donor’s HIV status should be disclosed to the donor’s next of kin.On the one hand, confidentiality requires that sensitive information not be disclosed, and a duty to respect confidentiality may persist after death. On the other hand, breaching confidentiality may benefit third parties at risk of having been infected by the organ donor, as it (...) may permit them to be tested for HIV and seek treatment in case of positive results.We conclude that the duty to warn third parties surpasses the duty to respect confidentiality. However, in order to minimize risks linked to the breach of confidentiality, information should be restrained to only concerned third parties, that is, those susceptible to having been infected by the donor. (shrink)

FEX A, FLENSNER G, EK A‐C and SÖDERHAMN O. Nursing Inquiry 2011; 18: 336–347 Living with an adult family member using advanced medical technology at homeAn increased number of chronically ill adults perform self‐care while using different sorts of advanced medical technology at home. This hermeneutical study aimed to gain a deeper understanding of the meaning of living with an adult family member using advanced medical technology at home. Eleven next of kin to adults performing self‐care at home, either (...) using long‐term oxygen from a cylinder or ventilator, or performing peritoneal or haemodialysis, were interviewed. The qualitative interviews were analysed using a Gadamerian methodology. The main interpretation explained the meaning as rhythmical patterns of connectedness versus separation, and of sorrow versus reconciliation. Dependence on others was shown in the need for support from healthcare professionals and significant others. In conclusion, next of kin took considerable responsibility for dependent‐care. All next of kin were positive to the idea of bringing the technology home, even though their own needs receded into the background, while focusing on the best for the patient. The results were discussed in relation to dependent‐care and transition, which may have an influence on the self‐care of next of kin and patients. The study revealed a need for further nursing attention to next of kin in this context. (shrink)

We explore the ethics of using motivational interviewing, an evidence-based, client-centred and directional counselling method, in conversations with next of kin about deceased solid organ donation. After briefly introducing MI and providing some context around organ transplantation and next of kin consent, we describe how MI might be implemented in this setting, with the hypothesis that MI has the potential to bring about a modest yet significant increase in next of kin consent rates. We subsequently consider the (...) objection that using MI in this context would be manipulative. Although we cannot guarantee that MI would never be used in a problematically manipulative fashion, we conclude that its use would, nevertheless, be permissible as a potential means to increase next of kin consent to deceased solid organ donation. We propose that MI be trialled in consent situations with next of kin in nations where there is widespread public support for organ donation. (shrink)

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of substitute decision making will be highlighted: (1) (...) Should there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

The influence of conscience on nurses in terms of guilt has frequently been described but its impact on care has received less attention. The aim of this study was to describe nurses' conceptions of the influence of conscience on the provision of inpatient care. The study employed a phenomenographic approach and analysis method. Fifteen nurses from three hospitals in western Sweden were interviewed. The results showed that these nurses considered conscience to be an important factor in the exercise of their (...) profession, as revealed by the descriptive categories: conscience as a driving force; conscience as a restricting factor; and conscience as a source of sensitivity. They perceived that conscience played a role in nursing actions involving patients and next of kin, and was an asset that guided them in their efforts to provide high quality care. (shrink)

The U.S. National Institute of Allergies and Infectious Diseases and the National Institute of Mental Health have a new research priority: inclusion of terminally ill persons living with HIV in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life HIV cure research is relatively new, the scientific community has a timely opportunity to (...) examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders. EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable. (shrink)

BackgroundCase consultation performed by clinical ethics committees (CECs) is a complex activity which should be evaluated. Several evaluation studies have reported stakeholder satisfaction in single institutions. The present study was conducted nationwide and compares clinicians’ evaluations on a range of aspects with the CEC’s own evaluation.MethodsProspective questionnaire study involving case consultations at 19 Norwegian CECs for 1 year, where consultations were evaluated by CECs and clinicians who had participated.ResultsEvaluations of 64 case consultations were received. Cases were complex with multiple ethical (...) problems intertwined. Clinicians rated the average CEC consult highly, being both satisfied with the process and perceiving it to be useful across a number of aspects. CEC evaluations corresponded well with those of clinicians in a large majority of cases. Having next of kin/patients present was experienced as predominantly positive, though practised by only half of the CECs. The educational function of the consult was evaluated more positively when the CEC used a systematic deliberation method.ConclusionsCEC case consultation was found to be a useful service. The study is also a favourable evaluation of the Norwegian CEC system, implying that it is feasible to implement well-functioning CECs on a large scale. There are good reasons to involve the stakeholders in the consultations as a main rule. (shrink)

Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better. Respondents in 90 family pairs rank-ordered 47 end-of-life statements as life-story narrative measure and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view and predicted pair’s view. They also scored their confidence in (...) surrogate’s decision-making and familiarity with pair’s healthcare-preferences. Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts and between respondent-surrogate and pair-personal Q-sorts before and after controlling for correlation with respondent-personal scores, and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity. Mean age was 35.4 years, 69% were females, and 73 and 80% reported ≥ very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 and 75% were ≥ familiar with pair’s healthcare-preferences. Mean projection, simulation, and adjusted-simulation correlations were 0.68, 0.42, and 0.26, respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score. There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts and percent agreement on healthcare-outcomes acceptability. Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background. (shrink)

BackgroundAll hospital trusts in Norway have clinical ethics committees. Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.MethodsTen next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care (...) personnel who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.ResultsAll next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.ConclusionsNone of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion. (shrink)

Background: Current practice relies on patient-designated and next-of-kin surrogates, in consultation with clinicians, to make treatment decisions for patients who lose the ability to make their own decisions. Yet there is a paucity of data on whether this approach is consistent with patients' preferences regarding who they want to make treatment decisions for them in the event of decisional incapacity. Methods: Self-administered survey of patients at a tertiary care center. Results: Overall, 1169 respondents completed the survey (response rate = (...) 59.8%). Of the 229 respondents who had previously designated a surrogate, 78.2% wanted their surrogate to make treatment decisions in the event of decisional incapacity, whereas 21.8% wanted their doctors to make treatment decisions. Of the 822 respondents who had not designated a surrogate, 66.1% wanted their family to make treatment decisions, whereas 33.9% wanted their doctors to make treatment decisions. The most common explanation provided for why respondents wanted their surrogate or family to make treatment decisions for them in the event of decisional incapacity was the belief that loved ones knew the patient's treatment preferences. Conclusions: Contrary to current practice, 33.9% of respondents who had not designated a surrogate and 21.8% of those who had designated a surrogate indicated that they wanted their doctors to make treatment decisions for them in the event of decisional incapacity. Moreover, many of those who wanted their surrogates or family members to make treatment decisions explained this preference by citing a belief that loved ones knew the patient's treatment preferences. This belief is undermined by prior research that suggests that surrogates and family members frequently are unable to predict which treatments their charges would want. Future research should assess these two concerns with current practice and, where necessary, identify approaches to address them. (shrink)

When a patient lacks decision-making capacity and has not left a clear advance directive, there is now widespread agreement that patient-designated and next-of-kin surrogates should implement substituted judgment within a process of shared decision-making. Specifically, after discussing the “best scientific evidence available, as well as the patient's values, goals, and preferences” with the patient's clinicians, the patient-designated or next-of-kin surrogate should attempt to determine what decision the patient would have made in the circumstances. To the extent that this (...) approach works, it seems to provide about as much respect for the autonomy of incapacitated patients as we could ask for. But, as articles in this issue of the Report by Jeffrey Berger and by Ellen Robinson and colleagues emphasize, reality presents challenges. (shrink)

If ethics consultation services influence medical decisions it is important to evaluate how ethical dilemmas are dealt with by clinical ethics committees (CECs). Such evaluation is rare. This study presents a feasible and practical method of evaluating case discussions in CECs and the results emerging from the use of this method. A written presentation of an end-of-life dilemma was sent to all Norwegian ethics committees. The committees were asked to deal with the case as they would do if it was (...) a real case, and to prepare a written report of the discussion. A majority of the committees approached the case systematically. All emphasized the importance of good communication with the next of kin. However, their conclusions varied, medical facts were interpreted differently, possible patient suffering was dealt with differently, and some committees revealed insufficient legal knowledge. Such findings are useful in the future education of committee members. (shrink)

In India, there has been a shift from using unclaimed bodies to voluntary body donation for anatomy dissections in medical colleges. This study used in-depth qualitative interviews to explore the deeper intent, values and attitudes towards body donation, the body and death, and expectations of the body donor, as well as their next of kin and representative religious scholars. All donors had enrolled in a body bequest programme in a medical school in South India. This study concludes that body (...) donors are philanthropists with deep-rooted values of altruism and service, who are often willing to forgo traditional religious and cultural death rituals. The next of kin are often uncomfortable with the donor’s decision, and this suggests that it is important that dialogue/counselling occurs at the time of the bequest, if the donor’s wishes are to be respected. Religious injunctions are often misinterpreted; this implies that religious leaders/scholars can play a significant role in addressing these misconceptions which are barriers to body donation. Body bequest programmes in India may be enhanced by positioning body donation as ‘daana’—giving without any expectation of return for a higher purpose, including ceremonies of respect in medical colleges. Furthermore, increased public engagement and awareness about body bequest programmes are also important to enhance participation. When medical students internalise what body donors expect of them, i.e. altruism, empathy with patients and becoming ‘good doctors’, it will help to ensure that the donation was not in vain and that the dead truly teach the living. (shrink)

In our recent article ‘The Ethics of the Algorithmic Prediction of Goal of Care Preferences: From Theory to Practice’1, we aimed to ignite a critical discussion on why and how to design artificial intelligence (AI) systems assisting clinicians and next-of-kin by predicting goal of care preferences for incapacitated patients. Here, we would like to thank the commentators for their valuable responses to our work. We identified three core themes in their commentaries: (1) the risks of AI paternalism, (2) worries (...) about attacks to our humanity stemming from the use of AI and (3) the possibility of designing AI systems for more relevant use cases than the one we consider in our work. We shall focus on these themes, leaving aside some other interesting suggestions, given the limited space available for our response. Diaz Milian and Bhattacharyya discuss the risks of AI paternalism highlighting how the use of an AI to predict goal of care preferences may incentivise clinicians and surrogates to shift the burden of decision making to the machine.2 In particular, ‘[i]f the AI-generated response is given priority above the other agents’2 and the AI makes decisions autonomously, then ‘AI paternalism’ would emerge.2 Against this possibility, the authors suggest four safeguards to be implemented in the AI life-cycle.2 These are procedures that may improve the trustworthiness of the AI and human control over it.3 We agree that it is important …. (shrink)

The discovery and invention of new medical applications may be considered blessings to humankind. However, some applications which might be the only remedy for certain diseases may contain ingredients or involve methods that are not in harmony with certain cultural and religious perspectives. These situations have raised important questions in medical ethics; are these applications completely prohibited according to these perspectives, and is there any room for mitigation? This paper explores the concept of darurah and its deliberation in the formulation (...) of fatwas on medicine issued by the National Fatwa Council of Malaysia. Darurah has explicitly been taken into consideration in the formulation of 14 out of 45 fatwas on medicine thus far, including one of the latest fatwas regarding uterine donation and transplantation. These fatwas are not only limited to the issues regarding the use of unlawful things as remedies. They include issues pertaining to organ transplantation, management of the corpse and treatment of brain dead patients. While deliberation of darurah in medicine may vary from issue to issue, darurah applies in a dire situation in which there are no lawful means to prevent harm that may be inflicted upon human life. Nevertheless, other aspects must also be taken into the deliberation. For example, consent must be obtained from the donor or his next of kin to conduct a cadaveric organ transplantation. (shrink)

Goal: To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe. -/- Methods: A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and data collection (...) were performed by two or more independent reviewers for each record. -/- Results: Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background. -/- Conclusions: Public views on the authority of the family in organ donation decision-making require further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation. (shrink)

The aim of this study was to describe nurses' conceptions of decision making with regard to life-sustaining treatment for dialysis patients. Semistructured interviews were conducted with 13 nurses caring for such patients at three hospitals. The interview material was subjected to qualitative content analysis. The nurses saw decision making as being characterized by uncertainty and by lack of communication and collaboration among all concerned. They described different ways of handling decision making, as well as insufficiency of physician—nurse collaboration, lack of (...) confidence in physicians, hindrances to patient participation, and ambivalence about the role of patients' next of kin. Future research should test models for facilitating communication and decision making so that decisions will emerge from collaboration of all concerned. Nurses' role in decision making also needs to be discussed. (shrink)

Informed consent is a vital part of ethical research. In emergency health care research environments such as ambulance services and emergency departments, it is sometimes necessary to conduct trial interventions or observations without patient consent. At times where treatment is time critical, it may be impossible or inappropriate to seek consent from next of kin. Emergency medicine is one of the few areas where the process of informed consent can be waived to allow research to proceed without patient consent. (...) This article will explore the ethics of informed consent in the prehospital emergency research context. This will include an overview of current Australian guidelines for ethical research, and recent changes in law internationally which have affected the conduct of international emergency health research. An overview of the ethical reasoning behind the waiver of informed consent in emergency research is presented, also addressing issues relating to emergency health research such as proxy consent, unconscious patients, and patient decision making capacity. The unusual circumstances encountered in the prehospital ambulance environment will also be discussed, including the dependent and coercive relationship between patients and ambulance professionals, and a lack of alternatives for care and transport for patients who refuse consent. The conflict arising from differences in medical culture and values between patients and health care professionals will also briefly be discussed. It will be argued that, while emergency care research should not require informed consent due to the restrictions of time and dependent nature of the relationship between patient and health professional, emergency health researchers still have a responsibility to consider the patients’ perspective when considering the ethical issues of an emergency research project, particularly in the prehospital environment. (shrink)

Few qualitative studies explore the phenomenon of positive ethical climate and what actions are perceived as promoting it. Therefore, the aim of this study was to explore and describe actions that acute care ward nurses perceive as promoting a positive ethical climate. The critical incident technique was used. Interviews were conducted with 20 nurses at wards where the ethical climate was considered positive, according to a previous study. Meeting the needs of patients and next of kin in a considerate (...) way, as well as receiving and giving support and information within the work group, promoted a positive ethical climate. Likewise, working as a team with a standard for behaviour within the work group promoted a positive ethical climate. Future research should investigate other conditions that might also promote a positive ethical climate. (shrink)

Background: Ought nursing homes to establish clinical ethics committees? An answer to this question must begin with an understanding of how a clinical ethics committee might be beneficial in a nursing home context – to patients, next of kin, professionals, managers, and the institution. With the present article, we aim to contribute to such an understanding. Aim: We ask, in which ways can clinical ethics committees be helpful to stakeholders in a nursing home context? We describe in depth a (...) clinical ethics committee case consultation deemed successful by stakeholders, then reflect on how it was helpful. Research design: Case study using the clinical ethics committee’s written case report and self-evaluation form, and two research interviews, as data. Participants and research context: The nursing home’s ward manager and the patient’s son participated in research interviews. Ethical considerations: Data were collected as part of an implementation study. Clinical ethics committee members and interviewed stakeholders consented to study participation, and also gave specific approval for the publication of the present article. Findings/results: Six different roles played by the clinical ethics committee in the case consultation are described: analyst, advisor, support, moderator, builder of consensus and trust, and disseminator. Discussion: The case study indicates that clinical ethics committees might sometimes be of help to stakeholders in moral challenges in nursing homes. Conclusions: Demanding moral challenges arise in the nursing home setting. More research is needed to examine whether clinical ethics committees might be suitable as ethics support structures in nursing homes and community care. (shrink)

Background Equal access to healthcare is a core principle in Norway’s public healthcare system. The COVID-19 pandemic challenged healthcare systems in the early phase – in particular, related to testing and hospital capacity. There is little knowledge on how older people experienced being infected with an unfamiliar and severe disease, and how they experienced the need for healthcare early in the pandemic Aim To explore the experiences of older people infected by COVID-19 and their need for testing and hospitalisation. Research (...) design An explorative and descriptive approach, with qualitative interviews conducted in October 2020. Participants and research context Seventeen participants above 60 years of age hospitalised due to COVID-19 during spring 2020 were recruited 6 months after discharge. Ethical considerations Ethical approval was granted by the Regional Committee for Medical and Health Research Ethics in South-Eastern Norway (155425). Findings The main finding was that the informants experienced vulnerability and arbitrariness. This finding was supported by three sub-themes: experiences with a severe and unfamiliar disease, the strict criteria and the importance of someone advocating needs. Discussion Participants described varying access to healthcare. Those who did not meet the national criteria to be tested or hospitalised struggled against the system. Findings reveal arbitrary access to healthcare, in contrast to Norway’s ethical principle of fair and just access to health services. Moreover, to access and receive necessary healthcare, informants were dependent on their next-of-kin’s advocacy. Conclusion Even when dealing with an unfamiliar disease, health professionals’ assessments of symptoms must be performed with an ethical obligation to applicate competent appraisal and the exercise of discernment; this is in line with care ethics and ethical standards for nurses. These perspectives are a significant part of caring and the intension of doing good. (shrink)

Background The interaction of health personnel with relatives is linked to the quality of care results in nursing homes. However, there is limited knowledge of how relatives perceive being an integral part of the nursing home context. This secondary analysis has its starting point in an ethical concern about relatives’ experiences in a previous study. Aim To critically discuss relatives’ experiences of suffering when their next of kin live in a nursing home in a rural arctic context. Research Design, (...) Participants and Context The critical hermeneutic stance is informed by Habermas. The secondary analysis is conducted on original data from five semi-structured focus groups with 18 relatives of residents of two nursing homes in a rural part of Norway. The theoretical framework concerning dignity, well-being, and suffering, as developed by Galvin and Todres, contrasts the analysis. Ethical Considerations The study followed the principles of the Helsinki Declaration. It was approved by the Norwegian Center for Research Data (NSD) (reg. no. 993360). Findings The main theme of this study is: suffering while resigning to an unacceptable violation of dignity. This theme is deepened by two subthemes: (a) suffering while adapting to a relationship of dependence and (b) suffering while accepting the unacceptable. Conclusions Relatives experience suffering as a cross-pressure in their struggle to interact responsibly with health personnel in nursing homes. This may have a negative outcome, where relatives end up adapting to being silent witnesses to missed care and a violation of dignity. (shrink)

The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses’ power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and (...) the predominant discursive practice can be explained with an ideology of paternalism, in which the nurses used biomedical explanations and the ethical principle of benefice to justify their actions. The second can be explained with an ideology of participation, in which the nurses used ethical narratives as a way to let the patients participate in the treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy for the next of kin in the difficult end-of-life decisions. (shrink)

When people die suddenly and unexpectedly ethical issues often come to the fore. The aim of the study was to describe experiences of members of stroke teams in stroke units of ethical problems and how the teams manage the situation when caring for patients faced with sudden and unexpected death from stroke. Data were collected through four focus group interviews with 19 team members in stroke-unit teams, and analysed using interpretive content analysis. Three themes emerged from the analysis characterized by (...) information, decisions about care and support for the next-of-kin in the changing and uncertain situation, with mutual trust as the core. Mutual trust, both within the stroke team and with next-of-kin was seen by the stroke-team members as a way of handling ethical problems by administering care with the patient’s best interest at heart. (shrink)

To investigate how bereaved families felt about the explanation received before and after forensic autopsies, the authors conducted a cross-sectional survey of the bereaved families whose next of kin underwent a forensic autopsy at the two Departments of Forensic Medicine and a few bereaved families of crime victims. Of 403 questionnaires sent, 126 families responded. Among 81.5% of the respondents who received an explanation from policemen before the autopsy, 78.8% felt that the quality of the explanation was poor or (...) improper. In Japan, the law has restricted disclosure of information from a forensic autopsy. Despite legal restrictions, 82% wanted to hear from the person who conducted the autopsy. However, police explained the results of autopsy to 65.2% of respondents. Among the families whose frustration and anger increased after autopsy, 86.4% had not been satisfied with the explanation before the autopsy. Additionally, 57.7% had not been informed on the autopsy findings at the time of the questionnaire when more than 2 years had passed after the autopsy. These results reminded us of the importance of an explanation before and shortly after a forensic autopsy for a better understanding and acceptance by bereaved families. (shrink)

Objective: To develop an approach for seeking informed consent to examine tissues retained from a previous study of sudden infant death syndrome as part of a study on asthma, and to document responses and participation rate.Design: Pilot open-ended approach to 10 volunteer SIDS parents, followed by staged approach to seek consent from the target SIDS families for the asthma study.Participants: Parents of SIDS infants known to SIDS and Kids Victoria and parents of SIDS infants from the 1991–2 SIDS in Victoria (...) case–control study.Main outcomes: Qualitative responses of the piloted parents and study parents, and participation rates.Results: The pilot group responses were used to refine the written material to be provided. Of the 72 families for which contact details were available, 45 gave verbal consent for contact by the Victorian Institute of Forensic Medicine regarding the asthma study, three refused and 24 did not respond to two letters. Thirty-three completed consent forms, all positive for participation in the asthma study, giving a positive response rate of 73% .Conclusions: The use of postmortem tissue for research is acceptable to the next of kin when an approach is sensitive to their concerns and needs and is made by experienced counsellors from a familiar organisation. Despite the painful memories evoked by the approach of the research group, the acceptance rate among those who could be contacted was high. (shrink)

The Last Gift is an observational HIV cure-related research study conducted with people with HIV at the end of life (EOL) at the University of California San Diego. Participants agree to voluntarily donate blood and other biospecimens while living and their bodies for a rapid research autopsy postmortem to better understand HIV reservoir dynamics throughout the entire body. The Last Gift study was initiated in 2017. Since then, 30 volunteers were enrolled who are either (1) terminally ill with a concomitant (...) condition and have a prognosis of 6 months or less or (2) chronically ill with multiple comorbidities and nearing the EOL.Multiple ethical and logistical challenges have been revealed during this time; here, we share our lessons learnt and ethical analysis. Issues relevant to healthcare research include surrogate informed consent, personal and professional boundaries, challenges posed conducting research in a pandemic, and clinician burnout and emotional support. Issues more specific to EOL and postmortem research include dual roles of clinical care and research teams, communication between research personnel and clinical teams, legally required versus rapid research autopsy, identification of next of kin/loved ones and issues of inclusion. Issues specific to the Last Gift include logistics of body donation and rapid research autopsy, and disposition of the body as a study benefit.We recommend EOL research teams to have clear provisions around surrogate informed consent, rotate personnel to maintain boundaries, limit direct contact with staff associated with clinical care and have a clear plan for legally required versus research autopsies, among other recommendations. (shrink)

Mrs. K is a thirty-one-year-old Russian-speaking mother of two, who was brought in by ambulance after attempting suicide by jumping in front of train. Probable depression x months. Stressor: lost custody battle over older child. Current status: deep coma, ventilator-dependent, and prognosis grim. Next of kin is estranged husband; he demands participation in medical decision making. Legal proxy is patient's boyfriend; forcibly removed from the intensive care unit for agitated behavior and alcohol intoxication.I magine the difficulty for the ICU (...) staff as it tries to patch together the broken body of Mrs. K, described above. If, as appears likely, the physicians’ efforts begin to fail, who will speak for this patient, who can no longer speak for herself, and determine the appropriate goals and limits of intensive medical care? (shrink)

This article aims to identify and describe the ethical dilemmas that are involved in the care of patients with incurable cancer. The data were collected in semistructured focused interviews with 32 patients, 13 nurses and 13 doctors from two central hospitals and four community health centres. The interviews were tape-recorded and transcribed verbatim. Interpretation was based on the method of content analysis. Ethical dilemmas occurred at the time of diagnosis, in connection with telling the truth, in providing information, in the (...) treatment of pain, and in decision-making situations concerning active treatment. Dilemmas of active treatment concerned chemotherapy, intravenous infusions, blood transfusions and antibiotics. There were also problems in relationships between nursing staff and next of kin, as well as a lack of co-operation between nurses and doctors. (shrink)

Introduction Death is an inevitable part of clinical practice and affects, in its very own way, not only next of kin and friends but also the members of the clinical team, in particular physicians and nurses, as those who take care of a patient in the very last moments of his or her life. Nevertheless, in clinical everyday life, it is no matter of course to meet the end of human life not only on a physical but also metaphysical (...) level. Definition of the problem In Western sociocultural contexts, silence is commonly regarded as an adequate expression of respect in the context of death. Considering that time is a more than limited resource in Western healthcare systems, it can, however, be challenging for the clinical team to pause and pay respect to the life that has passed and to generally deal with the unfathomability of human finiteness. Instead, death tends to become drowned out by a strident clinging to the common routines of patient care, in the course of which everyday clinical noises can turn into a roaring, almost inhuman cacophony—a cacophony that may not do justice to the dignity of the deceased, the relatives, or the clinic team. Objective With that said, this article focuses on forms of bidding farewell in clinical patient care, with an emphasis on post-mortem silence. Drawing on examples from literature, medical ethics, and the law, I will plead for a moment of silence in everyday clinical practice as a possible means to interrupt the noise of medicine in the immediate aftermath of death to honor the dignity of both the dead and the living. (shrink)

One response to the chronic shortage of organs for transplant in the United States has been the passage of laws establishing first-person authorization for donation of organs, providing legal grounds for the retrieval of organs and tissues from registered donors, even over the objections of their next of kin. The ethical justification for first-person authorization is that it is a matter of respecting the donor’s wishes. The objection of some next of kin may be that the donor would (...) not have wished for his or her loved ones to have their preferences overridden, had they considered that possibility. This article examines the basis of the conflict and suggests a remedy grounded in the provision of donor-intent options that have the ability to clarify the donor’s wishes. (shrink)

Typically, the determination of death by neurological criteria follows a very specific protocol. An apnea test is performed with further confirmation as necessary, and then mechanical ventilation is withdrawn with the consent of the family after they have had an opportunity to “say goodbye,” and at such a time to permit organ retrieval (with authorization of the patient or consent of the next of kin). Such a process maximizes transparency and ensures generalizability. In exceptional circumstances, however, it may be (...) necessary to deviate from this protocol in order to spare family members unnecessary suffering and to reduce moral distress felt by clinical staff. It may also be appropriate, we argue, to refrain from even inquiring about organ donation when the next-of-kin is not only certain to refuse, but lacks the decision-making capacity to potentially consent. The case described in this article calls into question generally reliable assumptions about determination of death by neurological criteria, where the best the clinical team could do for the patient and his family was “the least bad option.”. (shrink)

Background/Aim: The law on consent has changed in Scotland with the introduction of the Adults with Incapacity Act 2000. This Act introduces the concept of proxy consent in Scotland. Many patients in intensive care are unable to participate in the decision making process because of their illness and its treatment. It is normal practice to provide relatives with information on the patient’s condition, treatment, and prognosis as a substitute for discussion directly with the patient. The relatives of intensive care patients (...) appeared to believe that they already had the right to consent on behalf of an incapacitated adult. The authors’ aim was to assess the level of knowledge among relatives of intensive care patients of both the old and new law using a structured questionnaire.Methods: The next of kin of 100 consecutive patients completed a structured questionnaire. Each participant had the questions read to them and their answers recorded. Patients were not involved in the study.Results: Few were aware of the changes. Most thought that they previously could give consent on behalf of an incapacitated adult. Only 13% have ever discussed the preferences for life sustaining treatment with the patient but 84% felt that they could accurately represent the patient’s wishes.Conclusions: There appeared to be a lack of public awareness of the impending changes. The effectiveness of the Act at improving the care of the mentally incapacitated adult will depend largely on how successful it is at encouraging communication and decision making in advance of incapacity occurring. (shrink)

As a patient approaches death, family members often are asked about their loved one’s preferences regarding treatment at the end of life. Advance care directives may provide information for families and surrogate decision makers; however, less than one-third of Americans have completed such documents. As the U.S. population continues to age, many surrogate decision makers likely will rely on other means to discern or interpret a loved one’s preferences. While many surrogates indicate that they have some knowledge of their loved (...) one’s preferences, how surrogates obtain such knowledge is not well understood. Additionally, although research indicates that the emotional burden of end-of-life decision making is diminished when surrogates have knowledge that a loved one’s preferences are honored, it remains unclear how surrogates come to know these preferences were carried out. The current study examined the ways that next of kin knew veterans’ end-of-life preferences, and their ways of knowing whether those preferences were honored in Veteran Affairs Medical Center inpatient settings. (shrink)

Mrs. K is a thirty-one-year-old Russian-speaking mother of two, who was brought in by ambulance after attempting suicide by jumping in front of train. Probable depression x months. Stressor: lost custody battle over older child. Current status: deep coma, ventilator-dependent, and prognosis grim. Next of kin is estranged husband; he demands participation in medical decision making. Legal proxy is patient's boyfriend; forcibly removed from the intensive care unit for agitated behavior and alcohol intoxication.I magine the difficulty for the ICU (...) staff as it tries to patch together the broken body of Mrs. K, described above. If, as appears likely, the physicians’ efforts begin to fail, who will speak for this patient, who can no longer speak for herself, and determine the appropriate goals and limits of intensive medical care? (shrink)

The investigations reported here are the result of three lucky events. The first occurred in 1986. I had recently done the work reported in Pesetsky (1987), and received in the mail a copy of Kiss (1986). Since I had argued at length that D-linked wh-phrases do not display Superiority effects. I was astonished by a paradigm reported by Kiss, which appears here as example (98). These facts remained stubbornly in my mind for the next decade as an unsolved puzzle. (...) Kiss did not publish this paper in the form that I received — and, in fact, did not even recall discovering the crucial facts when she heard this work presented as a talk in 1998. But the facts are hers nonetheless. (shrink)

This article aims to identify and describe the ethical dilemmas that are involved in the care of patients with incurable cancer. The data were collected in semistructured focused interviews with 32 patients, 13 nurses and 13 doctors from two central hospitals and four community health centres. The interviews were tape-recorded and transcribed verbatim. Interpretation was based on the method of content analysis. Ethical dilemmas occurred at the time of diagnosis, in connection with telling the truth, in providing information, in the (...) treatment of pain, and in decision-making situations concerning active treatment. Dilemmas of active treatment concerned chemotherapy, intravenous infusions, blood transfusions and antibiotics. There were also problems in relationships between nursing staff and next of kin, as well as a lack of co-operation between nurses and doctors. (shrink)