This article considers proposals to reform the law in response to recent high profile cases concerning the medical treatment of children, currently before Parliament in the Access to Palliative Care and Treatment of Children Bill 2019–21. It considers the proposed procedural change, to introduce a requirement for mediation before court proceedings, and argues that dispute resolution processes should be a matter of good practice rather than enshrined in law. It argues that the proposed substantive change to determination (...) of best interests would not result in different outcomes because the best interests analysis co-exist with the legal and professional duties of doctors to children in their care. It argues that if there is to be reform of the law it needs to follow from a comprehensive review of all the issues in which the minimum standards imposed by law fit together with good practice standards and not in response to individual cases. (shrink)

Background: Recent research demonstrates that people sometimes make different medical decisions for others than they would make for themselves. This finding is particularly relevant to end-of-life decisions, which are often made by surrogates and require a trade-off between prolonging life and maintaining quality of life. We examine the impact of decision role, patient age, decision maker age and multiple individual differences on these treatment decisions. Methods: Participants read a scenario about a terminally ill cancer patient faced with (...) a choice between an aggressive chemotherapy regimen that will extend life by two years and palliative treatments to control discomfort for one remaining month. Participants were randomly assigned to one of three decision roles (patient, physician, or an abstract other) and the scenario randomly varied whether the patient was described as 25 or 65-years old. Results: When deciding for a 65-year old patient, approximately 60% of participants selected aggressive chemotherapy regardless of decision role. When deciding for a 25-year old patient, however, participants were more likely to select chemotherapy for a patient (physician role) or another person (abstract other) than for themselves (70%, 67%, and 59%, respectively). In addition, confidence that powerful others (eg, physicians) control one’s health, as well as respondents’ age and race, consistently predicted treatment choices. Conclusions: Patient age appears to influence medical decisions made for others but not those that we make for ourselves. These findings may help to explain the discord that often occurs when younger cancer patients refuse life-extending treatments. (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)

Background: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations”, aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. Objectives: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and (...) investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses’ current end-of-life care practices. Design: Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética. Ethical procedures are thoroughly described. Findings: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Discussion: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients’ preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. Conclusion: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses’ involvement and practices in end-of-life decision-making. (shrink)

Background Nurses have an essential role in caring for end-of-life patients. Nevertheless, the nurse’s involvement in the passive euthanasia decision-making process is insufficient and lower than expected. Objectives To explore factors associated with nurses’ intention to be involved in non-treatment decisions (NTD) regarding passive euthanasia decision-making versus their involvement in the palliative care of patients requesting euthanasia, using the Theory of Planned Behavior (TPB) framework. Design A cross-sectional study utilizing a random sample. Participants and research context (...) The study was conducted in one of the largest hospitals in Israel among 125 nurses employed in internal and surgical care wards. Data was collected through face-to-face interviews between March and April 2019. Method A closed structured questionnaire was developed according to TPB instructions. A paired sample t test and two multiple hierarchical regressions were conducted. Variance explained (R2) and the significance of F change were calculated for each regression. The study used the STROBE statement guideline. Ethical considerations The study was approved by the hospital’s Helsinki Committee (#20.11.2017). Findings A paired sample t test revealed that nurses’ involvement in the palliative care of patients requesting passive euthanasia was significantly higher than in NTD regarding euthanasia. Regression analyses revealed that nurses’ position and attitudes explain their intention to be involved in decision-making; attitudes and perceived behavioral control explain nurses’ intention to be involved in the care of patients requesting euthanasia. Conclusions According to the TPB, nurses’ attitudes explained their intention to participate in decision-making regarding passive euthanasia. It is recommended to enhance open discussion of this complex issue to encourage nurses’ willingness to participate in NTD decision-making regarding euthanasia. (shrink)

The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth interviews. The participants were thirteen (...) paediatric oncologists, 13 parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City. The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process. The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice. (shrink)

Background The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. Methods Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth interviews. The participants (...) were thirteen paediatric oncologists, 13 parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City. Results The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process. Conclusion The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice. (shrink)

Background Decision making regarding the treatment of neonates with poor prognoses is difficult for healthcare staff working in the neonatal intensive care unit. This study aimed to investigate the attitudes of physicians and nurses about the value of life and ethical decision making when encountering neonates with poor prognosis in the NICU. Methods This cross-sectional study was conducted in five NICUs of five hospitals in Tehran city, Iran. The attitudes of 144 pediatricians, gynecologists and nurses were assessed (...) using the questionnaire of attitude toward the value of life and agreement on intensive care management based on three hypothetical case scenarios of neonates with poor prognosis. Data were analyzed using descriptive and inferential statistics via the SPSS software. Results The negative agreement on the no initiation of intensive care measures and the discontinuation of resuscitation in neonates with poor prognosis was more than the positive agreement. Also, various factors influenced the participants’ decision making for the provision of care to neonates. Regarding the case scenarios, the participants agreed on the provision of aggressive, conservative, and palliative care with various frequencies. This study confirms the importance of healthcare providers’ perspectives and their impacts on ethical decision making. The participants favored the value or sacredness of life and agreed on the use of all therapeutic measures for saving the lives of neonates with poor prognosis. Conclusion More studies are required to improve our understandings of factors influencing ethical decision making by healthcare providers when encountering neonates with poor prognosis in NICUs. (shrink)

German legislation demands that decisions about the treatment of mentally incompetent patients require an ‘informed consent’. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of the (...) person under his/her care. This includes ‘end-of-life decisions’. Deviations from this procedure are only allowed in acute emergencies or cases of ‘medical futility’. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical ‘end of life-decisions’ and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like• the assessment of mental competence• the options for exercising patient self-determination via advance directives and durable powers of attorney• the improvement of palliative care facilities,• the clarification of formal procedures for surrogate decision-making in health care and towards the end of life• and the possibilities and their limitations of controlling these decision-making processes ‘externally’ (e.g., by Guardianship Courts or committees).The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction and the European traditions of philosophy of health care and bioethics. (shrink)

Most models of patient-physician communication take decision-making as a central concept. However, we found that often the treatment course of metastatic cancer patients is not easy to describe in straightforward terms used in decision-making models but is instead frequently more erratic. Our aim was to analyse these processes as trajectories. We used a longitudinal case study of 13 patients with metastatic colorectal and pancreatic cancer for whom palliative chemotherapy was a treatment option, and analysed 65 (...) semi-structured interviews. We analysed three characteristics of the treatment course that contributed to the ‘erraticness’ of the course: (1) The treatment (with or without chemotherapy) contained many options; (2) these options were not stable entities to be decided upon, but changed identity over the course of treatment, and (3) contrary to the closure (option X means no option Y, Z, etc.) a decision implies, the treatment course was a continuous process in which options instead remained open. When the treatment course is characterised by these many and changeable options that do not result in closure, the shared decision-making model should take these into account. More attention needs to be paid to the erratic character of the process in which the doctor has to provide continuous information that is related to the changing situation of the patient; also, flexibility in dealing with protocols is warranted, as is vigilance about the overall direction of the process. (shrink)

It has recently been proposed to incorporate the use of a “Patient Preference Predictor” (PPP) into the process of making treatment decisions for incapacitated patients. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Including a PPP in the shared decision-making process between clinicians and surrogates has the potential to better realize important ethical goals (...) for making treatment decisions for incapacitated patients. However, developing and implementing a PPP poses significant practical challenges. The present paper discusses these practical challenges and considers ways to address them. (shrink)

In clinical practice, and in the medical literature, severe congenital malformations such as trisomy 18, anencephaly, and renal agenesis are frequently referred to as ‘lethal’ or as ‘incompatible with life’. However, there is no agreement about a definition of lethal malformations, nor which conditions should be included in this category. Review of outcomes for malformations commonly designated ‘lethal’ reveals that prolonged survival is possible, even if rare. This article analyses the concept of lethal malformations and compares it to the problematic (...) concept of ‘futility’. We recommend avoiding the term ‘lethal’ and suggest that counseling should focus on salient prognostic features instead. For conditions with a high chance of early death or profound impairment in survivors despite treatment, perinatal and neonatal palliative care would be ethical. However, active obstetric and neonatal management, if desired, may also sometimes be appropriate. (shrink)

AimIn case of extremely rare diseases, case reports are often the only experience to draw from for evidence-based management. Carmi syndrome is a rare, mostly lethal combination of junctional epidermolysis bullosa and pyloric atresia. During an ethical board, there were differences in perception of mortality rate. We tested the hypothesis that the cumulative mortality of single case reports is lower than that of multiple case series.CaseA baby girl was born at 33 weeks gestation with Carmi syndrome. The treatment options (...) discussed in an interdisciplinary ethics board were a palliative approach versus surgical gastrojejunostomy. Because about one third of operated children described in case reports survived, we opted for surgical treatment. The patient died a painful death 4 weeks later.MethodsThe PubMed database was systematically searched for reports of Carmi syndrome. Single case reports were compared to case series in terms of outcome.ResultsA total of 102 cases of Carmi syndrome were identified in the literature. Mortality of single case reports was 17 out of 27 patients (63%), while that of case series was higher at 62 out of 74 patients (84%,p = 0.036).ConclusionsSelection and publication bias may lead to inflation of survival rates in single case reports because successful cases are more likely to be published in the literature. These biases may lead to inappropriately aggressive treatment in futile cases. Clinicians should be cautious when discussing prognosis and making decisions based on the cumulative experience of case reports of extremely rare or novel diseases. (shrink)

Objectives To determine the frequencies and types of limitation of medical treatment performed by physician members of the German Society for Palliative Medicine and to analyse the findings with respect to clinical and ethical aspects of end-of-life practices. Design Cross-sectional postal survey. Setting Data collection via the secretary of the German Society for Palliative Medicine using the German language version of the EURELD survey instrument. Subjects All 1645 physician members of the German Society for Palliative Medicine. (...) Main outcome measures Types and frequencies of limitation of treatment and possible determinants. Results 901 physicians participated in the study (response rate 55.8%). Participants reported limitation of treatment in 69.1% of cases. These decisions most often affected artificial nutrition (19%), chemotherapy (14%), antibiotics (11%) and medication other than antibiotics (11%). In the majority of eligible cases, physicians estimated the life-shortening effect of limitation of treatment to be <7 days. However, estimations differ depending on the medical measures in question. Bivariate statistical analysis indicated that withholding of treatment was performed significantly more frequently for patients aged ≥65 years (p=0.019). In addition, there were significant associations between the incidence of limitation of treatment and the different diseases reported by respondents as the underlying cause of death. Conclusion The findings of this study provide information on the current state of an ethically and clinically challenging aspect of clinical practice and can serve as a starting point for further interdisciplinary research on normative and empirical aspects of treatment decision-making at the end of life. (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)

For those with advanced life-limiting illness, the optimization of quality of life and avoidance of nonbeneficial treatments at the end of life are key ethical concerns. This article evaluates the efficacy of an Interdisciplinary Ethics Panel (IEP) approach to decision making at the end of life for unbefriended nursing home residents who lack decisional capacity and have advanced life-limiting illness, through the use of a ninestep algorithm developed for this purpose. We reviewed the outcomes of three quality-of-care phased initiatives (...) conducted in our facility, a large public nursing home in New York City, between June 2016 and February 2020, which indicated that this IEP approach promoted advance-care planning, as palliative measures were endorsed to optimize quality of life for this vulnerable population at the end of life. We also examined another quality-of-care initiative when this IEP approach was applied to end-of-life decision making for nursing home residents who had a surrogate during the COVID-19 pandemic. This application appeared to be beneficial in adding more residents to our Palliative Care Program while it improved rates of advance-care planning. When all of the above findings are considered, we believe this novel IEP approach and algorithm have the potential to be applied elsewhere after appropriate assessment. (shrink)

When patients cannot make their own treatment decisions, surrogates typically step in to do it for them. Surrogate decision‐making is far from ideal, of course, as the surrogate may not know what the patient prefers or what best promotes her interests. One way to improve it would be to arm surrogates with information about what patients in similar circumstances tend to prefer, allowing them to make empirically grounded predictions about what their patient would want.

The paper discusses inappropriate (futile) treatment by analyzing the casuistics of palliative patients in the terminal stage of illness who are hospitalized at the Department of Internal Medicine and Geriatrics of the Faculty hospital with policlinic (FNsP). Our research applies the principles of palliative care in the context of bioethics. The existing clinical conditions of healthcare in Slovakia are characteristic of making a taboo of the issues of inappropriate treatment of palliative patients. Inductive-deductive and normative (...) clinical bioethics methods of palliative care and ethical strategy are applied for defining issues found in inappropriate hemodialysis treatment. An algorithm of hemodialysis treatment requires the definition of those lege artis criteria which, in the context of a patient’s autonomy and his/her decision, precondition the avoidance of the situation in which hemodialysis treatment is inappropriate (futile). Futile treatment in a terminal condition is ethically inappropriate medical treatment that extends the suffering of patients and their relatives. Its definition is determined by the relevant legislation and the methods of bioethics. An active palliative strategy is aimed at managing the process of incurable diseases in the patient’s bio-psycho-socio-spiritual continuity in the process of special bioethics. The global bioethical objective of general bioethics for palliative care is based on the paradigm of social harmony and solidarity in the context of an authentic modus of the patient’s existence as a constitutive principle for the phenomenon of the patient’s being to finite being (death). (shrink)

Introduction: Decisions to withdraw or withhold curative or life-sustaining treatment can have a huge impact on the symptoms which the palliative-care team has to control. Palliative-care patients and their relatives may also turn to palliative-care physicians and nurses for advice regarding these treatments. We wanted to assess Indian palliative-care nurses and physicians’ attitudes towards withholding and withdrawal of curative or life-sustaining treatment. Method: From May to September 2008, we interviewed 14 physicians and 13 nurses (...) working in different palliative-care programmes in New Delhi, using a semi-structured questionnaire. For the interviews and analysis of the data we followed Grounded-Theory methodology. Results: Withholding a curative or life-sustaining treatment which may prolong a terminal cancer patient’s life with a few weeks but also has severe side-effects was generally considered acceptable by the interviewees. The majority of the interviewees agreed that life-sustaining treatments can be withdrawn in a patient who is in an irreversible coma. The palliative-care physicians and nurses were of the opinion that a patient has the right to refuse life-saving curative treatment. While reflecting upon the ethical acceptability of withholding or withdrawal of curative or life-sustaining treatment, the physicians and nurses were concerned about the whole patient and other people who may be affected by the decision. They were convinced they can play an important advisory role in the decision-making process. Conclusion: While deciding about the ethical issues, the physicians and nurses do not restrict their considerations to the physical aspects of the disease, but also reflect upon the complex wider consequences of the treatment decisions. (shrink)

Three common ethical principles for establishing the limits of parental authority in pediatric treatment decision making are the harm principle, the principle of best interest, and the threshold view. This paper consider how these principles apply to a case of a premature neonate with multiple significant comorbidities whose mother wanted all possible treatments, and whose health care providers wondered whether it would be ethically permissible to allow him to die comfortably despite her wishes. Whether and how these principles (...) help to understand what was morally right for the child is questioned. The paper concludes that the principles were of some value in understanding the moral geography of the case, but that the case reveals common bioethical principles for medical decision making are problematically value-laden because they are inconsistent with the widespread moral value of medical vitalism. (shrink)

BackgroundDecisions about appropriate treatment at the end of life are common in modern healthcare. Non-treatment decisions (NTDs), comprising both withdrawal and withholding of (potentially) life-prolonging treatment are in principle accepted in Norway. However, in practice they may give rise to significant moral problems for health professionals, patients and next of kin. Here, patient values must be considered. It is relevant to study the moral views and intuitions of the general population on NTDs and special areas of contention (...) such as the role of next of kin in decision-making.MethodsElectronic survey to members of a nationally representative panel of Norwegian adults. Respondents were presented with vignettes describing patients with disorders of consciousness, dementia, and cancer where patient preferences varied. Respondents answered ten questions about the acceptability of non-treatment decision making and the role of next of kin.ResultsWe received 1035 complete responses (response rate 40.7%). A large majority, 88%, supported the right of competent patients to refuse treatment in general. When an NTD was in line with the patient’s previously expressed preferences, more respondents tended to find NTDs acceptable. More respondents would accept NTDs for themselves than for the vignette patients. In a scenario with an incompetent patient, clear majorities wanted the views of next of kin to be given some but not decisive weight, and more weight if concordant with the patient’s wishes. There were, however, large variations in the respondents’ views.ConclusionThis survey of a representative sample of the Norwegian adult population indicates that attitudes to NTDs are often in line with national laws and guidelines. However, the high variance among the respondents and relatively large weight given to next of kin’s views, indicate a need for appropriate dialogue among all stakeholders to prevent conflicts and extra burdens. Furthermore, the emphasis given to previously expressed opinions indicates that advance care planning may increase the legitimacy of NTDs and prevent challenging decision-making processes. (shrink)

Over the past decade, the ideal model of shared decision-making has been increasingly promoted as the preferred standard of doctor-patient communication in medical consultation. The model advocates a treatment decision-making process in which the doctor and his patient are considered coequal partners that carefully negotiate the treatment options available in order to ultimately reach a treatment decision that is mutually shared. Thereby, the model notably leaves room for—and stimulates—argumentative discussions to arise in the context (...) of medical consultation. A paradigm example of a discussion that often emerges between doctors and their patients concerns antibiotics as a method of treatment for what is presumed to be a viral infection. Whereas the doctor will generally not encourage treatment with antibiotics, patients oftentimes prefer the medicine to other methods of treatment. In this paper, two cases of such antibiotic-related discussions in consultation are studied using insights gained in the extended pragma-dialectical theory to argumentation. It is examined how patient and physician maneuver strategically in order to maintain a balance between dialectical reasonableness and rhetorical effectiveness, as well as an equilibrium between patient participation and evidence-based medication, while arguing a case for and against antibiotics respectively. (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)

Case studies are used to reflect on the treatment of patients with dementia hospitalized at the Geriatric Department of the Faculty hospital in Prešov, emphasizing human dignity in clinical practice. The discussion is focused on the palliative care of patients with severe dementia. The biomedical method, which respects human dignity is defined by means of inductive, deductive, and normative bioethical methods. They make it possible to provide guidelines for palliative care and individualized prognosis strategy. An analysis of (...) health status of individuals with severe dementia enables us to offer a clinical definition of purposeful treatment based on normative justice and decision-making that reflects the patient’s best interest, thus respecting their dignity. An evaluation of a patient’s care is based on a biomedical method that considers the dementia stage. Applying a bioethical model in a holistic context preconditions the human rights of patients with dementia. (shrink)

During goals of care conversations, palliative care clinicians help patients and families determine priorities of care and align medical care with those priorities. The style and methods of communicating with families and negotiating a care plan can range from paternalistic to entirely patient driven. In this paper, we describe a case in which the palliative care clinician approached decision-making using a paradigm that is intuitive to many clinicians and which seems conceptually sound, but which has not been (...) fully explored in the bioethics literature. This paradigm, termed maternalism, allows the clinician to direct decision-making within a relationship such that best interests and autonomy are mutually reinforced, thus reflecting relational autonomy as opposed to individual autonomy. We explore whether this method is appropriate in this case and explain how it captures significant ethical features of the case that might be missed by other approaches. (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 their article, Navin, Brummett, and Wasserman (2022) advance the idea that there are qualitatively different types of decision-making capacity (DMC) for treatment refusals. Departing from what t...

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 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)

Competent adults should be permitted to determine the course of their own lives. We may try to influence them. We may ask them, perhaps even implore them, to change their minds. But in the end, they are in charge of their lives. They get to choose their careers, whether and whom to marry, whether to exercise, and whether to have surgery.This emphasis on respect for patients’ autonomy may seem to imply that allowing patients to make their own decisions should always (...) take precedence over other considerations. Given this presumption, there has been almost no discussion in the medical literature or elsewhere about how important this value is and whether it should sometimes be balanced against and give way to other values. This absence of guidance is especially problematic in cases where respect for patient autonomy conflicts with promoting patients’ clinical interests. (shrink)

Objectives—To investigate the factors considered by staff, and the practicalities involved in the decision making process regarding the withdrawal or withholding of potential life-sustaining treatment in a children's hospital. To compare our current practice with that recommended by the Royal College of Paediatrics and Child Health guidelines, published in 1997.Design—A prospective, observational study using self-reported questionnaires.Setting—Tertiary paediatric hospital.Patients and participants—Consecutive patients identified during a six-month period, about whom a formal discussion took place between medical staff, nursing staff and (...) family regarding the withholding or withdrawal of potentially life-sustaining treatments. The primary physician and primary nurse involved in the discussion were identified.Method—Two questionnaires completed independently by the primary physician and nurse.Results—Twenty-two patients were identified . In 20 cases treatment was withdrawn or withheld, in two cases treatment was continued. Nursing staff considered family wishes and family perceptions of patient suffering as significantly more important factors in decision making than medical staff, who considered prognostic factors as most important. In only two cases were the patient's expressed wishes apparently available. In most cases staff considered the patient's best interests were served and the process would not be enhanced by the involvement of an independent ethics committee. The exceptions were those cases in which treatment was continued following disagreement between parties.Conclusions—Our current practice is consistent with that recommended by the RCPCH. The contribution of the patient, provision of staff counselling and general practitioner involvement were identified as areas for improvement. (shrink)

There are marked differences between countries with regard to reimbursement decision-making, yet few studies have tried to understand this process and its consequences by a detailed analysis of the local context and decision-making structure. This article describes reimbursement decision-making and subsequent prescribing patterns of new pharmaceuticals by means of a case study on glitazones in treatment of type 2 diabetes mellitus patients in Denmark. The study shows that institutional arrangements, providing the context in which evidence is (...) used, are highly important for understanding the reimbursement decision-making process. In particular the Danish Medicines Agency (DMA) has shaped the decision to reimburse glitazones on the basis of physician-mediated requests of individual patients. Relatively few patients have been prescribed glitazones since their introduction in 2000, suggesting that individual reimbursement may be an effective instrument in controlling overall expenditure of selected pharmaceuticals, although in the case of glitazones this has likely been achieved at the expense of equality in access to the products. The discussion focuses on the generalizability of the findings to both other pharmaceuticals in the individual reimbursement scheme in Denmark, and to other countries that are trying to balance the need to control overall pharmaceutical care expenditure with the need to secure equality in access to new drugs with therapeutic added value. (shrink)

In this article, we discuss the case of Michael Johnson, an African-American man who sought treatment for respiratory distress due to COVID-19, but who was adamant that he did not want to be intubated due to his belief that ventilators directly cause death. This case prompted reflection about the ways in which a false belief can create uncertainty and complexity for clinicians who are responsible for evaluating decision-making capacity (DMC). In our analysis, we consider the extent to which (...) Mr. Johnson demonstrated capacity according to each of Appelbaum’s criteria. Although it was fairly clear that Mr. Johnson lacked DMC on the basis of both understanding and appreciation, we found ourselves reflecting upon the false belief that seemed to motivate his refusal. This led us to further consider the ways in which our current social and political environment can complicate evaluations of patients’ preferences and reasons for declining life-sustaining interventions. In particular, we consider the impact of the role of misinformation and systemic racism in preparing the grounds for false beliefs. (shrink)

Volume 20, Issue 6, June 2020, Page 80-82.

Psychiatric disorders can pose problems in the assessment of decision-making capacity (DMC). This is so particularly where psychopathology is seen as the extreme end of a dimension that includes normality. Depression is an example of such a psychiatric disorder. Four abilities (understanding, appreciating, reasoning and ability to express a choice) are commonly assessed when determining DMC in psychiatry and uncertainty exists about the extent to which depression impacts capacity to make treatment or research participation decisions.

In this article, we explore alternative conflict resolution strategies to assist families and clinicians in cases of intractable dissent in paediatric health care decision-making. We focus on the ethical and legal landscape using cases from the Australian jurisdiction in New South Wales, while referencing some global sentinel cases. We highlight a range of alternative means of addressing conflict, including clinical ethics support, and contrast and contextualise facilitative or interest-based mediation, concluding that legal intervention via the courts can be protracted (...) and distressing and should be a ‘last resort’. We acknowledge many might view this as the current status quo, but we go further to recommend strategies optimal for all parties to recognise early signs of conflict and prevent its harmful escalation. While more empirical research is needed, we contend that interest-based mediation may be a valuable adjunctive method of conflict resolution. If judiciously distinguished from and utilised with clinical ethical support, it can be an effective tool to address dissent and its negative sequelae in paediatric healthcare decision-making. (shrink)

This paper examines a number of questions about the degree to which the clinical practice of medicine is affected, if at all, by the legal systems in four countries: Chile, Germany, Japan and the United States. The focus on these four countries in four different regions of the world offers a unique perspective within which to examine medical treatment decisions made by patients and their proxies or surrogates, the potential role for universal written instruments such as advance directives, the (...) cross-professional tensions between clinical and legal concerns in very distinct cultures, and the degree to which legal activities can change or affect clinical realities in the context of these different political and health care systems. We have incorporated, whenever relevant, the insights of many disciplines, including the social sciences, in analyzing the existing interrelations between law and behavior in this specific context. Der Beitrag untersucht, inwieweit die klinische Praxis in vier Ländern mit unterschiedlichen Rechtssystemen und Berufskulturen durch Rechtsnormen oder das Verständnis von Recht beeinflußt wird. Es wird gefragt, welche Funktion rechtliche Interventionen bei der Veränderung von Verhaltensnormen in unterschiedlichen Gesundheitssystemen haben können. Folgende Themenbereiche werden diskutiert: Entscheidungen über die medizinische Behandlung, die von Patienten und ihren Angehörigen oder Stellvertretern getroffen werden; die mögliche Rolle umfassender schriftlicher Verfügungen wie z.B. der Patiententestamente ; die berufsübergreifenden Spannungen zwischen medizinischen und rechtlichen Belangen in sehr unterschiedlichen Kulturen; der Einfluß, den gesetzgeberische Aktivitäten im Kontext der verschiedenen politischen und Gesundheitssysteme auf die medizinische Wirklichkeit haben. Bei ihrer Analyse der in diesem Zusammenhang bestehenden Beziehungen im Verhältnis von Recht und Verhalten haben die Autoren die Erkenntnisse vieler Disziplinen unter Einschluß der Sozialwissenschaften, soweit sie als relevant erscheinen, in ihren Beitrag eingearbeitet. (shrink)

Decision-Making Capacity First published Tue Jan 15, 2008; substantive revision Fri Aug 14, 2020 In many Western jurisdictions the law presumes that adult persons, and sometimes children that meet certain criteria, are capable of making their own medical decisions; for example, consenting to a particular medical treatment, or consenting to participate in a research trial. But what exactly does it mean to say that a subject has or lacks the requisite capacity to decide? This question has to do (...) with what is commonly called “decisional capacity”, a central concept in health care law and ethics, and increasingly an independent topic of philosophical inquiry. -/- Decisional capacity can be defined as the ability of subjects to make their own medical decisions. Somewhat similar questions of capacity arise in other contexts, such as capacity to stand trial in a court of law and the ability to make decisions that relate to personal care and finances. However, the history behind the more general legal notions of capacity to stand trial and capacity to manage one’s life is different and operates somewhat differently in law (Roth, Meisel, & Litz 1977; Zapf & Roesch 2005). For the purposes of this discussion the notion of decisional capacity will be limited to medical contexts only; most notably, those where decisions to consent or to refuse treatment or participation in clinical research are concerned. (shrink)

This paper explores the ethical and conceptual implications of the findings from an empirical study (reported elsewhere) of decision-making capacity in anorexia nervosa. In the study, ten female patients aged thirteen to twenty-one years with a diagnosis of anorexia nervosa, and eight sets of parents, took part in semistructured interviews. The purpose of the interviews was to identify aspects of thinking that might be relevant to the issue of competence to refuse treatment. All the patient-participants were also tested (...) using the MacArthur Competence Assessment Tool—Treatment test of competence. This is a formalized, structured, interviewer-administered test of competence, which is a widely accepted clinical tool for determining capacity. The young women also completed five brief, self-administered questionnaires to assess their levels of psychopathology. The issues identified from the interviews are described under two headings: difficulties with thought processing and changes in values. The results suggest that competence to refuse treatment may be compromised in people with anorexia nervosa in ways that are not captured by traditional legal approaches. (shrink)

Background Cancer patients are at risk of developing blood clots in their veins - venous thromboembolism - which often takes the form of a pulmonary embolism or deep vein thrombosis. The risk increases with advanced disease. Evidence based treatment is low molecular weight heparin by daily subcutaneous injection. The aim of this research is to explore the barriers for doctors in the UK when diagnosing and treating advanced cancer patients with VTE. Method Qualitative, in-depth interview study with 45 doctors. (...) Doctors were from three specialties: oncology, palliative medicine and general practice, with a mixture of senior and junior staff. Framework analysis was used. Results Doctors opinions as to whether LMWH treatment was ethically appropriate for patients who were symptomatic from VTE but at end of life existed on a shifting continuum, largely influenced by patient prognosis. A lack of immediate benefit coupled with the discomfort of a daily injection had influenced some doctors not to prescribe LMWH. The point at which LMWH injections should be stopped in patients at the end of life was ambiguous_._ Some perceived ‘overcaution’ in their own and other clinicians’ treatment of patients_._ Viewpoints were divergent on whether dying of a PE was considered a “good way to go”. The interventionalism and ethos of palliative medicine was discussed. Conclusions Decisions are difficult for doctors to make regarding LMWH treatment for advanced cancer patients with VTE. Treatment for this patient group is bounded to the doctors own moral and ethical frameworks. (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)

With narrow exception, physicians’ treatment of incapacitated patients requires the consent of health surrogates. Although the decision-making authority of surrogates is appropriately broad, their moral authority is not without limits. Discerning these bounds is particularly germane to ethically complex treatments and has important implications for the welfare of patients, for the professional integrity of clinicians, and, in fact, for the welfare of surrogates. Palliative sedation is one such complex treatment; as such, it provides a valuable model (...) for analyzing the scope of surrogates’ moral authority. Guidelines for palliative sedation that present it as a “last-resort” treatment for severe and intractable suffering yet require surrogate consent in order to offer it are ethically untenable, precisely because the moral limits of surrogate authority have not been considered. (shrink)