This article deals with making decisions about starting terminal care. The results are part of a larger survey on nurses’ conceptions of terminal care in community health centres in Finland. The importance, frequency and timing of decision making as well as communication and the number of investigations and procedures carried out are examined. The relationship between decision making and the size of a health centre’s catchment population is also discussed. The results (...) make it possible to compare the current situation in Finland with the national law on patients’ rights. The sample consisted of 328 nurses who worked on the wards of 32 community health centres. The data were collected by means of a structured questionnaire and processed with the Statistical Package for Social Sciences software. The nurses agreed that explicit decision making and documentation about starting terminal care were necessary, but it was highlighted that the practice had many shortcomings. Decisions were often made too late and the patients were not always aware of their situation; family members and the nursing staff were mostly better informed. It was noted that many investigations and other procedures were carried out on terminally ill patients, often at the request of family members. Decision making was found to have some relationship to the size of a health centre’s catchment area. (shrink)

Background Ethical decision making in intensive care is a demanding task. The need to proceed to ethical decision is considered to be a stress factor that may lead to burnout. The aim of this study is to explore the ethical problems that may increase burnout levels among physicians and nurses working in Portuguese intensive care units . A quantitative, multicentre, correlational study was conducted among 300 professionals.Results The most crucial ethical decisions made by professionals working (...) in ICU were related to communication, withholding or withdrawing treatments and terminal sedation. A positive relation was found between ethical decision making and burnout in nurses, namely, between burnout and the need to withdraw treatments , to withhold treatments and to proceed to terminal sedation . This did not apply to physicians. Emotional exhaustion was the burnout subdimension most affected by the ethical decision. The nurses' lack of involvement in ethical decision making was identified as a risk factor. Nevertheless, in comparison with nurses , it was the physicians who more keenly felt the need to proceed to ethical decisions in ICU.Conclusions Ethical problems were reported at different levels by physicians and nurses. The type of ethical decisions made by nurses working in Portuguese ICUs had an impact on burnout levels. This did not apply to physicians. This study highlights the need for education in the field of ethics in ICUs and the need to foster inter-disciplinary discussion so as to encourage ethical team deliberation in order to prevent burnout. (shrink)

Locked-in syndrome (LIS) is one of the most dramatic neurological outcomes and has a profound impact on patients and their families. Most patients have intact cognition and intellectual ability and perception. Communication is possible with eyelid and/or eyeball movement. According to the literature, the wish to die is not an important issue in acute and chronic LIS. This study describes and analyses the ethical decision-making process in two opposite cases of LIS in the intensive care unit. One (...) patient expressed the wish to prolong her life for as long as possible; the other patient asked for deliberate termination of life. Both wishes were honoured. In conclusion, most patients with LIS are competent and intellectually intact. In The Netherlands the autonomy of the patient is respected by law. In respecting this autonomy, medical choices can be different in comparable patients. (shrink)

Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision-making (...) triad that also includes the parents or guardians. The multifactorial nature of these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient. (shrink)

Case studies and first-person stories about decision-making, written by professionals in the field, bring a uniquely personal touch to this valuable text.

BackgroundAlthough nurses are crucial to ensure patients’ peaceful death in hospitals, many nurses experience various ethical conflicts during end-of-life care. Therefore, research on nurses’ entire ethical decision-making process is required to improve nurses’ ethical decision-making in end-of-life care. This study aimed to identify Korean nurses’ ethical decision-making process based on their moral sensitivity to end-of-life patients.MethodsIn total, 171 nurses caring for terminal patients responded to the survey questionnaire. To measure the participants’ (...) moral sensitivity and ethical decision-making process, we used the Korean version of the Moral Sensitivity Questionnaire and Nurses’ Ethical Decision-Making around End of Life Care Scale. Finally, multiple linear regression analysis was used to investigate the effect of moral sensitivity on nurses’ ethical decision-making.ResultsThe mean of moral sensitivity was 4.8 ± 0.5 (out of 7), and that of ethical decision-making was 4.6 ± 0.5 (out of 6). Among the sub-dimensions of ethical decision-making, the highest score was in perceived professional accountability (5.2 ± 0.5), and the lowest in moral reasoning and moral agency (3.9 ± 0.6); the score of moral practice was 4.4 ± 0.7. In the multiple linear regression model, moral sensitivity (β = 0.852, p <.001), clinical department (β = − 7.018, p =.035), ethics education (β = 20.450, p <.001), job satisfaction (β = 5.273, p <.001), and ethical conflict (β = − 2.260, p = 0.031) were influential ethical decision-making factors.ConclusionsThis study revealed a gap between nurses’ thoughts and practices through the ethical decision-making process. They failed to lead their thought to moral practice. It also implies that moral sensitivity could positively affect nurses’ ethical decision-making. To make nurses morally sensitive, exposing them to various clinical cases would be helpful. Additionally, ethics education and clinical ethics supporting services are valuable for improving nurses’ ethical decision-making. If nurses improved their ethical decision-making regarding end-of-life care, their patients could experience a better quality of death. (shrink)

Every one of us will die, and the processes we go through will be our own - unique to our own experiences and life stories. End-of-Life Care and Pragmatic Decision Making provides a pragmatic philosophical framework based on a radically empirical attitude toward life and death. D. Micah Hester takes seriously the complexities of experiences and argues that when making end-of-life decisions, healthcare providers ought to pay close attention to the narratives of patients and the communities (...) they inhabit so that their dying processes embody their life stories. He discusses three types of end-of-life patient populations - adults with decision-making capacity, adults without capacity, and children - to show the implications of pragmatic empiricism and the scope of decision making at the end of life for different types of patients. (shrink)

This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's energy and vigour contributed to the clinician's judgements about life expectancy and the continuation or termination of medical treatment. In this paper we will discuss the normative importance of vitality as a diagnostic cue and will argue that vitality, as a sign (...) perceived by doctors and nurses, has moral significance and represents a legitimate contribution to clinical decision-making in difficult cases where the child's life is at stake. We will argue that these clinical intuitions can be justified on a moral basis but only with certain qualifications that accounts for a certain objectivity and intersubjective reliability in the therapeutic judgements. (shrink)

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high-risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision-making capacity. In this (...) essay, we discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision-making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient. (shrink)

Recent advances in life-sustaining treatments and technologies, have given rise to newly-emerged, critical and sometimes, controversial questions regarding different aspects of end-of-life decision-making and care. Since religious values are among the most influential factors in these decisions, the present study aimed to examine the Islamic scholars' views on end-of-life care. A structured interview based on six main questions on ethical decision-making in end-of-life care was conducted with eight Shiite experts in Islamic studies, and (...) was analyzed through deductive content analysis. Analysis revealed certain points in Islamic views on the definition of death and the persons making decisions about end-of-life care. According to the participants, in addition to conventional criteria such as absence of heartbeat and respiration, the irreversible cessation of human voluntary acts are considered to be the criteria in establishing death. The participants also recognized physicians as the main authorities in verifying signs of death. Furthermore, it was emphasized that life preservation and continuation of care must be sensible, and the patient can request not to have death-prolonging procedures started or continued. In the view of participants, patient's autonomy cannot be the sole basis for all measures, but Islamic ethical and jurisprudential principles should be relied upon to make correct and sensible decisions whether to continue or stop terminal patients' care. Final decisions should be made by a team of experts, and physicians must be at the center of such a team. Finally, we suggest that a guideline in keeping with Islamic norms on human life and death, purpose of life, God's will, boundaries of man's authority, and the physician's ethical duties and obligations should be developed. (shrink)

" Journal of the American Medical Association "Walton has made a successful attempt to write about medical concerns without ever leaving the layperson to ...

Holding life and death in their hands -- Is this for me? -- The intensive care unit. Personnel ; Rhythms ; Economics -- Actors. Patients ; Friends, family, and significant others ; Health care professionals -- Decisions. Informed consent ; Venues ; Affect ; Conflict -- Prognosis. Evidence ; Timing ; Mixed messages ; Negotiation ; Accuracy ; Prognostic framing -- Decision-making scripts. The legal script ; Cognitive scripts ; Conflicts of interest ; Law at the (...) bedside -- Improvisation: decisions in the real world. The patient should decide ; Reprising patient instructions ; Standing in the patient's shoes ; Beneficence ; It's God's decision ; What we want ; Denial, opting out -- Making a difference? The role of physicians ; Opting for a trajectory ; Outcomes ; I thought the law would take care of this ; Does any of this matter? -- The end. Implications ; Before it's too late ; When it's too late ; When "this" happens to me. (shrink)

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative descriptive (...) design with analysis of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (shrink)

Objective Explore parents’ point of view about forgoing life sustaining treatment in terminal critically ill children and factors affecting their decisions. Method This was a qualitative study using in-depth interviews with parents whose child died between 6–12 months old in pediatric intensive care unit of a university-affiliated teaching hospital. Interviews were audiotaped and transcribed. Data were analyzed using interpretive description method. Result A total of 7 parents of 5 children decided to withhold or withdraw LST. Five parents from (...) 4 children decided to sign the do not attempt resuscitation, and none choose to withdrew the LST, including mechanical support. Factors influenced their decision were communication, value of children, child best interest, intuition, religious belief, and emotions. Economic factors did not influence the decision-making. Conclusion Most parents decided to sign the DNAR, none choose to withdrew mechanical support. Communication was the most important factor that influenced parents to make a forgoing LST decision. (shrink)

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed (...) with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of ‘DNR’ to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed. (shrink)

Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor–patient relationship. The study aims to explore the Roma’s beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two (...) Romanian counties participated in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the “silence conspiracy” being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient’s autonomy. We identified ethical dilemmas concerning autonomy, lack of patients’ real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient’s right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community. (shrink)

Se realiza un estudio de los principios básicos o tradicionales de la bioética y su influencia en la práctica de la limitación del esfuerzo terapéutico en las Unidades de Cuidados Intensivos, como condicionante que favorece su aplicación en los pacientes en estado terminal. Se aborda la necesidad de una bioética no importada de otros países, que se corresponda a las características de la realidad latinoamericana y a cada contexto sociocultural. El trabajo tiene como objetivo fundamental resaltar la importancia de (...) estos principios básicos en la discusión ético-clínica para la toma de decisiones, a partir de una bioética que se corresponda a la realidad de los sistemas imperantes. A study of basic or traditional principles of bioethics and its influence in the practice of the limits of the therapeutic effort in the intensive care units, as a requirement that favors its application in terminal ill patients was carried out. The need of having bioethics principles that match Latin-American reality and each sociocultural context, not imported ones from other countries, was stated. This paper main objective is to highlight the importance of these basic principles in ethic-clinic discussion for decision-making, taking as the starting point a bioethics that corresponds to the reality of the dominant system. (shrink)

BackgroundHospitalized older adults frequently have impaired cognition and must rely on surrogates to make major medical decisions. Ethical standards for surrogate decision making are well delineated, but little is known about what factors surrogates actually consider when making decisions.ObjectivesTo determine factors surrogate decision makers consider when making major medical decisions for hospitalized older adults, and whether or not they adhere to established ethical standards.DesignSemi-structured interview study of the experience and process of decision making.SettingA (...) public safety-net hospital and a tertiary referral hospital in a large city in the Midwest United States.ParticipantsThe study included 35 surrogates with a recent decision-making experience for an inpatient aged 65 or older.MeasurementsThe key factors that surrogates considered when making decisions. Interview transcripts were coded and analyzed using the grounded theory method of qualitative analysis.ResultsSurrogates considered patient-centered factors and surrogate-centered factors. Patient-centered factors included: respecting the patient’s input, using past knowledge of the patient to infer the patient’s wishes, and consider ing what is in the patient’s best interests. Some surrogates expressed a desire for more information about the patient’s prior wishes. Surrogate-centered factors included: surrogate’s wishes as a guide, surrogate’s religious beliefs and/or spirituality, surrogate’s interests, and family consensus.ConclusionOur study indicates that surrogate decision making is more complex than the standard ethical models, which are limited to considerations of the patient’s autonomy and beneficence. Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences, models of surrogate decision making must account for these additional considerations. Surrogates’ desire for more information about patients’ preferences suggests a need for greater advance care planning. (shrink)

In recent years there has been an explosion of interest in Artificial Intelligence (AI) both in health care and academic philosophy. This has been due mainly to the rise of effective machine learning and deep learning algorithms, together with increases in data collection and processing power, which have made rapid progress in many areas. However, use of this technology has brought with it philosophical issues and practical problems, in particular, epistemic and ethical. In this paper the authors, with backgrounds (...) in philosophy, maternity care practice and clinical research, draw upon and extend a recent framework for shared decision-making (SDM) that identified a duty of care to the client's knowledge as a necessary condition for SDM. This duty entails the responsibility to acknowledge and overcome epistemic defeaters. This framework is applied to the use of AI in maternity care, in particular, the use of machine learning and deep learning technology to attempt to enhance electronic fetal monitoring (EFM). In doing so, various sub-kinds of epistemic defeater, namely, transparent, opaque, underdetermined, and inherited defeaters are taxonomized and discussed. The authors argue that, although effective current or future AI-enhanced EFM may impose an epistemic obligation on the part of clinicians to rely on such systems' predictions or diagnoses as input to SDM, such obligations may be overridden by inherited defeaters, caused by a form of algorithmic bias. The existence of inherited defeaters implies that the duty of care to the client's knowledge extends to any situation in which a clinician (or anyone else) is involved in producing training data for a system that will be used in SDM. Any future AI must be capable of assessing women individually, taking into account a wide range of factors including women's preferences, to provide a holistic range of evidence for clinical decision-making. (shrink)

Palliative care is a recent branch of health care. The doctors, nurses, and other professionals involved in it took their inspiration from the medieval idea of the hospice, but have now extended their expertise to every area of health care: surgeries, nursing homes, acute wards, and the community. This has happened during a period when patients wish to take more control over their own lives and deaths, resources have become scarce, and technology has created controversial life-prolonging treatments. (...) Palliative care is therefore faced with more ethical problems that other areas of health care. This book, by a clinician, teacher, and writer on health care ethics, has been written to provide all those who care for the terminally ill--doctors, nurses, social workers, clergymen, physiotherapists--with the concepts and principles which will assist them with difficult decisions. It challenges many received doctrines of palliative care, but its well-illustrated central theme is that technical expertise must be controlled by humane, non-technical judgments. (shrink)

This is a new edition of a classic textbook in health care ethics, one that offers an alternative to the principle-based approach from Beauchamp and Childress (Principles of Biomedical Ethics, now in its seventh edition from OUP) and traditional Catholic approaches of Ashley and O'Rourke. In the early chapters Devettere spells out the meaning of ethics and the importance of prudential reasoning in seeking the good life. The rest of the book deals with issues and cases, including determinations of (...) life and death, reproduction and research and genetics, and the distribution of health care. In this fourth edition Devettere updates all chapters and adds new cases and new sections on the following: neuroscience, social psychology, overriding advance directives, studies on the fetus, the palliative care movement, cardiopulmonary resuscitation, pharmacists and reproductive issues, prenatal life and abortion, neonatal testing and mandatory vaccinations, the US governments' STD research in Guatemala, the emergence of biobanks, facial transplantations, genetic testing, legal issues around the Affordable Care Act, and more. This is an accessible and comprehensive textbook covering all aspects of the field. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Helping a Muslim Family to Make a Life–and–Death Decision for Their Beloved Terminally Ill FatherBahar BastaniI live in a city in the Midwest with a population of around two million people. There are an estimated 2,000 Iranians living in this city, the vast majority of which belong to Shia sect of Islam. [End Page 190] However, the vast majority is also not very religious. Over the past two (...) decades that I have been living in this city, professionally in the capacity of a physician and university faculty at a school of medicine, and socially as one of the community leaders with a particular role in religious matters, I have acquired the trust of my community. Following one of my yearly routine travels to my homeland, Iran, I had just returned to work when I received a phone call from one of the Iranian community members. He informed me that his father was very ill and was hospitalized, and that the physicians had introduced the idea of stopping life support. The family was experiencing a significant emotional, moral and religious dilemma as to whether they could consent to this. I was requested by the patient’s children to help them make the right decision.I requested that the oldest son, who had called me, to ask the three other siblings and their mother to be present at the bedside of the patient that night, so that we could discuss the matters face–to–face. That same night, all requisite family members and myself gathered at the bedside of this 88–year–old husband and father, who had developed multi–organ failure, which commenced with an infection following a heart valve replacement, followed by bacteremia and sepsis. Moreover, the patient was hypotensive, had developed respiratory failure requiring intubation and artificial ventilation, and had also developed hematologic coagulation abnormalities secondary to sepsis. Because of the sepsis, hypotension, and multiple drugs, including antibiotics and vasopressors, his kidneys had also failed, and there was a need to start hemodialysis if his life was to be maintained. After speaking with the intensive care physicians who were taking care of this elderly gentleman, it became clear to me that further care was futile, and there was absolutely no hope for him to recover from his multiple organ failure. I presented all the facts that I had acquired to the family members, and expressed my own viewpoint that I agreed with those physicians and that further care of their beloved, terminally ill husband and father was futile and only extended his dying. My assurances made it easier for the family members, particularly for his four sons who were present, to come to the decision to withdraw life support. After I informed the intensive care physicians of the family’s decision, the patient was heavily sedated with morphine, and the intravenous fluids, antibiotics, vasopressors, and the ventilator machine were all stopped. Over the next several minutes, the patient developed agonal breathing, his blood pressure dropped to zero, and his heart stopped. During the last few minutes of his life, I held the hands of the family members, we all prayed Islamic prayers to bless his soul while departing from his body. The next day, I supported the family with funeral services that included the Islamic prayers for the dead, the ceremonial religious washing of the body of the deceased, and the ceremonial religious burial.The dilemma that this family faced was multi-factorial: (1) the children had spent all of their adult life in America, and were unfamiliar with Islamic end of life and funeral traditions; (2) they had been asked by their father’s physicians to make a decision regarding the withdrawal of life support, which posed a moral and ethical dilemma; (3) they did not know whether it was religiously acceptable to withdraw life support; and (4) they did not know what type of funeral service would be acceptable to the religious beliefs of their deceased father.My presence as a trusted community leader, physician and religious leader was reassuring to the family members that the decision to stop life support for their loved one with a terminal illness and multiple organ... (shrink)

Most countries appear to believe that their health system is in a state of semi-crisis with expenditures rising rapidly, with the benefits of many services unknown and with pressure from the public to ensure access to a comprehensive range of services. But whose values should inform decision-making in the health area, and should the influence of different groups vary with the level of decision-making? These questions were put to 54 members of the public and health professionals (...) in eight focus groups. Adopting a different perspective from other studies, participants were not asked if particular groups should be involved in decisions but rather through deliberation and discussion nominated their own potential decision makers. This delivered a clear message that participants saw a legitimate role for a broad range of stakeholders in priority-setting decisions so as to incorporate a diversity of expertise and opinion. Companion themes were the acknowledgment that decisions involve ethical judgments and are not purely technical, that the power of special interest groups (such as clinicians) should be kept in check, and that the process by which decisions are reached is important. The results suggest that qualitative methods of investigation have the potential to improve the legitimacy of policy decisions by contributing to a better understanding of the values of the public and health professionals, and by expanding the range of options available for further research. (shrink)

Next SectionObjectives A statute enacted in 2005 modified the legislative framework of the rights of terminally ill persons in France. Ten years after the EURONIC study, which described the self-reported practices of neonatal caregivers towards ethical decision-making, a new study was conducted to assess the impact of the new law in neonatal intensive care units (NICU) and compare the results reported by EURONIC with current practices. Setting and design The study was carried out in the same two (...) NICU as in the EURONIC qualitative study. A third centre was added to increase the sample size. From February to October 2007, 19 physicians and 17 nurses participated in semistructured interviews very similar to those for EURONIC. Content analysis identified the recurring themes emerging from the interviews. Results Compared with the EURONIC results, the caregivers reported that they pay greater attention to the views of parents and provided respectful support to the neonates when life-sustaining treatment is withdrawn. Active termination of life has become exceptional. The possibility of withdrawal of treatment, the administration of sedatives to control pain even at the risk of hastening death, the emphasis on sparing parents the burden of decision, and the relative ignorance of the law were very similar to the EURONIC findings. Conclusion Both the medical and the legal regulation of practices has allowed more dialogue with the parents and more humane care for dying newborns. A new European study is necessary to investigate the possible changes in practices and attitudes also in other countries. (shrink)

This paper considers ways of involving consumers in decisions regarding the allocation of scarce health service resources. Specifically, two levels of consumer participation are highlighted and discussed. These are: (1) at the level of deciding whether or not a particular service should be introduced or its scale changed; and (2) at the level of deciding how best to provide a service once it has been decided that the servicewill be provided. The limitations of the current methods of involving consumers are (...) outlined and two alternative approaches discussed. These are willingness to pay and conjoint analysis. (shrink)

The decision-making environment in intensive care units (ICUs) is influenced by the transformation of intensive care medicine, the staffing situation and the increasing importance of patient autonomy. Normative implications of time in intensive care, which affect all three areas, have so far barely been considered. The study explores patterns of decision making concerning the continuation, withdrawal and withholding of therapies in intensive care. A triangulation of qualitative data collection methods was chosen. Data (...) were collected through non-participant observation on a surgical ICU at an academic medical centre followed by semi-structured interviews with nurses and physicians. The transcribed interviews and observation notes were coded and analysed using qualitative content analysis according to Mayring. Three themes related to time emerged regarding the escalation or de-escalation of therapies: influence of time on prognosis, time as a scarce resource and timing in regards to decision making. The study also reveals the ambivalence of time as a norm for decision making. The challenge of dealing with time-related efforts in ICU care results from the tension between the need to wait to optimise patient care, which must be balanced against the significant time pressure which is characteristic of the ICU setting. (shrink)

Shared decision-making involves health professionals and patients/clients working together to achieve true person-centred health care. However, this goal is infrequently realized, and most barriers are unknown. Discussion between philosophers, clinicians, and researchers can assist in confronting the epistemic and moral basis of health care, with benefits to all. The aim of this paper is to describe what shared decision-making is, discuss its necessary conditions, and develop a definition that can be used in practice to (...) support excellence in maternity care. Discussion between the authors, with backgrounds in philosophy, clinical maternity care, health care management, and maternity care research, assisted the team to confront established norms in maternity care and challenge the epistemic and moral basis of decision-making for caesarean section. The team concluded that shared decision-making must start in pregnancy and continue throughout labour and birth, with equality in discourse facilitated by the clinician. Clinicians have a duty of care for the adequacy of women's knowledge, which can only be fulfilled when relevant knowledge is offered freely and when personal beliefs and biases that may impinge on decision-making (defeaters) are disclosed. Informed consent is not shared decision-making. Key barriers include existing cultural norms of “the doctor knows best” and “patient acquiescence” that prevent defeaters being acknowledged and discussed and can lead to legal challenges, overuse of medical intervention and, in some areas, obstetric violence. Shared decision-making in maternity care can thus be defined as an enquiry by clinician and expectant woman aimed at deciding upon a course of care or none, which takes the form of a dialogue within which the clinician fulfils their duty of care to the client's knowledge by making available their complete knowledge (based on all types of evidence) and expertise, including an exposition of any relevant and recognized potential defeaters. Research to develop measurement tools is required. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon (...) which decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

Hospice is the premiere end of life program in the United States, but its requirement that patients forgo disease-directed therapies and that they have a prognosis of 6 months or less means that it serves less than half of dying patients and often for very short periods of time. Palliative care offers careful attention to pain and symptom management, added support for patients and families, and assistance with difficult medical decision making alongside any and all desired medical (...) treatments, but it does not include a comprehensive system of care as is provided by hospice. The practice of palliative care and hospice is filled with sometimes overt (requests for hastened death in an environment where such acts are legally prohibited) and other times covert (the delay in palliative care referral because the health care team believes it will undermine disease directed treatment) ethical issues. The contributors to this volume use a series of case presentations within each chapter to illustrate some of the palliative care and hospice challenges with significant ethical dimensions across the three overarching domains: 1) care delivery systems; 2) addressing the many dimensions of suffering; and 3) difficult decisions near the end of life. The contributors are among the most experienced palliative care, hospice and ethics scholars in North America and Western Europe. Each has been given relatively free reign to address what they feel are the most pressing ethical challenges within their domain, so a wide range of positions and vantage points are represented. As a result, the volume provides a very diverse ethical exploration of this relatively young field that can deepen, stretch, and at times confront any simple notion of the challenges facing patients, their families, professional caregivers, and policy makers. (shrink)

In the UK, current policies and services for people with mental disorders, including those with intellectual disabilities (ID), presume that these men and women can, do, and should, make decisions for themselves. The new Mental Capacity Act (England and Wales) 2005 (MCA) sets this presumption into statute, and codifies how decisions relating to health and welfare should be made for those adults judged unable to make one or more such decisions autonomously. The MCA uses a procedural checklist to guide this (...) process of substitute decision-making. The personal experiences of providing direct support to seven men and women with ID living in residential care, however, showed that substitute decision-making took two forms, depending on the type of decision to be made. The first process, ‘strategic substitute decision-making’, paralleled the MCA’s legal and ethical framework, whilst the second process, ‘relational substitute decision-making’, was markedly different from these statutory procedures. In this setting, ‘relational substitute decision-making’ underpinned everyday personal and social interventions connected with residents’ daily living, and was situated within a framework of interpersonal and interdependent care relationships. The implications of these findings for residential services and the implementation of the MCA are discussed. (shrink)

This text provides a comprehensive and timely examination of the most pertinent factors affecting institutional ethics committees, for ethicists, trustees, administrators, physicians, clergy, nurses, social workers, attorneys and others with an interest in ethics committees.

Background: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ experiences regarding (...) class='Hi'>care decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations. (shrink)

Bester offers powerful arguments for why the harm principle cannot replace the best interest standard (BIS) as a guide for, and limit on, surrogate healthcare decision making (Bester 2018). Since B...

Philosophers of science have insisted that evidence of underlying mechanisms is required to support claims about the effects of medical interventions. Yet evidence about mechanisms does not feature on dominant evidence-based medicine “hierarchies.” After arguing that only inferences from mechanisms (“mechanistic reasoning”)—not mechanisms themselves—count as evidence, I argue for a middle ground. Mechanistic reasoning is not required to establish causation when we have high-quality controlled studies; moreover, mechanistic reasoning is more problematic than has been assumed. Yet where the problems can (...) be overcome, mechanistic reasoning can and should be used as evidence. (shrink)

In this paper I examine the debate between ‘protectionists’ and ‘liberationists’ concerning the appropriate role of minors in decision-making about their health care, focusing particularly on disagreements between the two sides regarding adolescents. Protectionists advocate a more traditional, paternalistic approach in which minors have relatively little input into the healthcare decision-making process, and decisions are made for them by parents or other adults, guided by a commitment to the patient's best interests. Liberationists, on the other (...) hand, argue in favour of expanded participation by minors in treatment decisions, and decision-making authority for at least some adolescents. My examination of the debate includes discussion of liberationist shifts that have taken place in the medical community as well as in legal policy and practice, and consideration of recent research on adolescent development. In the final section of the paper, I propose a moderate position that addresses both liberationist and protectionist concerns. (shrink)

The purpose of this overview of published articles on decision making in paediatric care was to identify important aspects of its possible use in clinical practice and to obtain a base for future research. A literature review was undertaken utilizing snowball sampling to identify articles because of the diversity present within the area of decision making in paediatric care. The databases PubMed and CINAHL were used. The search was limited to articles published in English (...) during the period 1994-2004. The analysis entailed a series of comparisons across articles, focusing on major areas of enquiry and patterns of results. Various levels of decision making are described because these seem to form a basis for how decisions are made. Concepts found to be of importance for decision making are described under the following headings: competence, the child’s best interests, knowledge, values and attitudes, roles and partnership, power, and economy. Further research is suggested. (shrink)

Aristotle’s ethical system was guided by his vision of human flourishing (also, but potentially misleadingly, translated as happiness). For Aristotle, human flourishing was a rich holistic concept about a life lived well until its ending. Both living a long life and dying well were integral to the Aristotelian ideal of human flourishing. Using Aristotle’s concept of human flourishing to inform the goals of medicine has the potential to provide guidance to clinical decision-makers regarding the provision of burdensome treatments, such (...) as intensive care treatment, where pursuing a chance of survival must be balanced against the risk of exposing patients to a negative dying experience. By conceptually uniting potentially competing goals of medicine, such as prolonging life and the promotion of peaceful deaths, Aristotle’s understanding of human flourishing creates an argument for the integration of palliative care considerations into intensive care decision-making and for advanced care planning with healthy patients. (shrink)

How is a terminally ill patient treated by the surrounding people in the U.S. and Japan? How does a terminally ill patient decide on his or her own treatment? These questions will be examined in a study of intensive medical care, received by a terminally ill Japanese cancer patient in the U.S. and Japan. This casereflects the participant observation by a Japanese anthropologist for about 8 years in the United States and Japan on one patient who was hospitalized in (...) both countries on and off for about eight years. The objective of this study is to illuminate the different concept of personhood between the U.S. and Japan that appeared in different cultural practices of both countries and in the subject’s own decision making process. The significant differences appeared between theU.S. and Japan in the concepts of (1) science, (2) suffering, (3) Power of Attorney and Doisho (Consent Form), and (4) organized care. The interpretation of such differences indicates that seemingly universal practices across countries suggest cultural specific concepts and their management. Therefore, ethical norms appeared differently accordingly to each country. (shrink)

Decision making is a crucial element in the field of medicine. The physician has to determine what is wrong with the patient and recommend treatment, while the patient has to decide whether or not to seek medical care, and go along with the treatment recommended by the physician. Health policy makers and health insurers have to decide what to promote, what to discourage, and what to pay for. Together, these decisions determine the quality of health care (...) that is provided. Decision Making in Health Care is an up-to-date, comprehensive overview of the field of medical decision making. It includes quantitative theoretical tools for modeling decisions, psychological research on how decisions are actually made, and applied research on how physician and patient decision making can be improved. (shrink)

The best interests principle is commonly utilized in acute care settings to assist with decision making about life-saving and life-sustaining treatment. This ethical principle demands that the decision maker refers to some conception of quality of life that is relevant to the individual patient. The aim of this article is to describe the factors that are required to be incorporated into an account of quality of life that will provide a morally justifiable basis for making (...) a judgement about the future quality of life, and therefore the best interests, of critically ill patients who are mentally incompetent. This account consists of three major components - pain and suffering, body functioning, and autonomy - and is applicable in situations where very limited information is available to guide decision making. This framework helps to make decisions about the provision of life-saving treatment that are as consistent as possible in all patient situations. (shrink)

There is a curious asymmetry in cases where the use of religious language involves a breakdown in communication and leads to a seemingly intractable dispute. Why does the use of religious language in such cases almost always arise on the side of patients and their families, rather than on the side of clinicians or others who work in healthcare settings? I suggest that the intractable disputes arise when patients and their families use religious language to frame their problem and the (...) possibilities of solution. Unlike clinicians, they are not bilingual and thus lack the capacity to understand and negotiate differences in terms that are responsive to those who work in healthcare settings. After considering a representative case, I explore whether an ethics consultant or chaplain can function as a translator and suggest that, at best, such efforts at mediation depend on contingent aspects of a case and will only be partially successful. To appreciate limits on the role for bilingual translators, I consider a futility dispute where a parent using religious language demands that everything be done for a permanently unconscious child. I challenge the traditional interpretation that says the parent values “mere duration of biological life irrespective of quality.” From a religious perspective, human life is never “merely biological.” This effort to slot the dispute into standard philosophical schemas misses what is crucial in the dispute. I suggest that a better interpretation views the dispute at a meta-level as one about whether withholding and withdrawing care is morally distinguishable from killing. Curiously, this interpretation makes the advocate of futile care into an ally of those “quality of life” advocates who also challenge this distinction. The crux of their dispute now rests on the normative ethics of killing. While I think my interpretation comes much closer to the views of many who demand ‘futile care,’ I suggest that it still falls short because of the way it reconstructs the religious concerns in nonreligious terms. I close by considering an analogy between the language of suffering and the language of faith, suggesting that both require a much richer understanding of the narratives that orient the lives of patients and their families. (shrink)

The aim of this study was to investigate factors associated with seriously ill patients’ preferences for their family and physicians making resuscitation decisions on their behalf. Using SUPPORT II data, the study revealed that, among 362 seriously ill patients who were experiencing pain, 277 (77%) answered that they would want their family and physicians to make resuscitation decisions for them instead of their own wishes being followed if they were to lose decision-making capacity. Even after controlling for (...) other variables, patients who preferred the option of undergoing cardiopulmonary resuscitation (CPR) in the future were twice as likely, and those who had had ventilator treatment were four-fifths less likely, to rely on their family and physicians than those who did not want CPR (odds ratio (OR)-2.28; 95% confidence interval (CI) 1.18-4.38) or those who had not received ventilator treatment (OR-0.23; 95% CI 0.06-0.90). Psychological variables (anxiety, quality of life, and depression), symptomatic variables (severity of pain and activities of daily living) and the existence of surrogates were not significantly associated with patients’ preferences for having their family and physicians make resuscitation decisions for them. Age was not a significant factor for predicting the decision-making role after controlling for other variables. (shrink)

Disorders of consciousness and the permanent vegetative state -- Legal and political wrangling over Terri's life -- In context--law and ethics -- Terri's wishes -- The limits of evidence -- The implications of surrogacy -- Qualities of life -- Feeding -- The preservation of life -- Respect and care : an alternative framework.

The family, like so many other modern institutions, often looks more like an arena of competing wills than an ordered life in common. If we hope, therefore, to protect the special role that parents should have in relation to their children, and that the family in general should have in relation to its members, we will need a much more developed account of the goods that are at stake and why we think they are important enough to require authority, even (...) when members of the family oppose the decisions of that authority. This essay develops an older account of authority, one rooted in the thought of Aristotle and St. Thomas Aquinas, and applies this account to our present difficulties concerning the authority of the family over its members in health care decision making. (shrink)

Background: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses’ attitudes and involvement in end-of-life decisions are available. Research question/aim: To investigate neonatal nurses’ attitudes and involvement in end-of-life decisions and the relation to their socio-demographic and work-related background data. Research design: A survey was carried out in 28 neonatal intensive care units between September 2018 and January 2019. A structured questionnaire was distributed by post. Participants and (...) research context: The questionnaire was answered anonymously by 312 nurses and returned to the investigators. Ethical considerations: The study was approved by the Bioethics and Research Committee of Aretaieio Hospital in accordance with the Helsinki Declaration. Findings: Nurses more often reported involvement in various end-of-life decisions, such as continuation of treatment without adding further therapeutic interventions for terminally ill neonates, while less reported were mechanical ventilation withdrawal and drug administration to end life. Nurses with a high attitude score, reflecting a more quality-of-life approach, were more likely to be involved in setting limits to intensive care. α low score was consistent with life preservation. Nurses’ religiousness, parenthood, involvement in daily practice, and position on the existing legal framework influenced their attitude score. Discussion: The likelihood of nurses to support interventions in neonates with poor prognosis in neonatal intensive care units was related to their attitudes. After adjusting for potential confounders, the most important predictors for nurses’ attitudes were parenthood, involvement in daily practice, and position supporting current legislation reform. Conclusion: Variability in involvement in end-of-life decisions among nurses exists on a national level. (shrink)

Life saving or life sustaining treatment may not be instigated in the clinical setting when such treatment is deemed to be futile and therefore not in the patient’s best interests. The concept of futility, however, is related to many assumptions about quality and quantity of life, and may be relied upon in a manner that is ethically unjustifiable. It is argued that the concept of futility will remain of limited practical use in making decisions based on the best interests (...) principle because it places such high demands on the individual responsible for decision making. This article provides a critical analysis of futility (in the context of the best interests decision-making principle), and proposes an ethically defensible notion of futility. (shrink)