Background: Attitudes of nurses towards death and related concepts influence end-of-life care. Determining nurses’ views and attitudes towards these concepts and the factors that affect them are necessary to ensure quality end-of-life care. Objectives: The purpose of this study was to determine nurses’ views and attitudes about death, dying patient, euthanasia and the relationships between nurses’ characteristics. Methods: Participants consist of the nurses who volunteered to take part in this descriptive study from 25 hospitals (n = 340) which has (...) a paediatric or adult intensive care unit and located within the boundaries of Ankara, Turkey. ‘Nurse Information Form’ and ‘Attitude Scale about Euthanasia, Death and Dying Patients (DAS)’ were used as data collection tool. Ethical consideration: Written permissions were received from the ‘Noninterventional Clinical Researches Ethics Board’ of authors’ university and education councils of each hospital. Informed consent was obtained from participants. Findings: It is found that there are statistically significant difference among the factors of marital status, having a child, years of experience, bereavement experience, affected by working with dying patient, definition of euthanasia, views about patients who are appropriate for euthanasia, views about patients who desire to die and feeling need for counselling on these concepts according to the mean total score of nurses’ attitudes about euthanasia, death and dying patient (p < 0.05). Conclusion: The results indicate that nurses are negatively affected to face the concepts of death, euthanasia and work with dying patient. This is reflected in their attitude. In order to gain positive attitude towards death, dying patient and euthanasia, the implementation of training and consulting services to nurses at appropriate intervals during both education and professional life are required. (shrink)

Philip Reed (2023) argues that discrimination against (non-acutely) dying patients constitutes a unique kind—which he calls terminalism—because their status as persons with terminal illness marks them with a socially salient identity which, by means of direct and indirect discrimination, limits their sets of choices and resources, such as in hospice care or organ transplant policies. 1 Importantly, Reed also argues that while terminalism is an increasingly prevalent normative phenomenon, it has been overlooked in the literature, ‘hiding in plain (...) sight’ as even though we are ‘aware of it at some level’." 1 What could explain this paradox? Drawing from Jeffrey Bishop, Giorgio Agamben, and T. Kenny Fountain, I argue that an institutional episteme and operating assumption of medicine, from the training of medical students, discursively disciplines terminally ill persons as bare life, between medicine’s dichotomy of bodies: neither ‘biovaluable’ (the surplus value of separated human bodily material... (shrink)

BackgroundIn Saudi clinical settings, benevolent family care that reflects strongly held sociocultural values is commonly used to justify overriding respect for patient autonomy. Because the welfare of individuals is commonly regarded as inseparable from the welfare of their family as a whole, these values are widely believed to obligate the family to protect the welfare of its members by, for example, giving the family authority over what healthcare practitioners disclose to patients about their diagnoses and prognoses and preventing them (...) from making informed decisions about their healthcare.DiscussionFamily dominance over the healthcare decisions of competent patients is ethically problematic when the family prevent healthcare practitioners from disclosing diagnoses and prognoses to patients who have the capacity to consent and make decisions in their own best interests. Thus, the author holds that sociocultural values ought to be respected only when they do not prevent competent patients from knowing their diagnoses and prognoses or prevent them from making their own decisions.ConclusionHealthcare practitioners should not allow patients’ families to control what can or cannot be disclosed to competent patients. This is particularly important when patients are approaching death so that they may address their material and spiritual wishes—among other needs—as they prepare for death. Justification for this position is drawn from the Maqasid Al-Shariah-based Islamic bioethics approach, from which it is possible to argue that the harm of withholding diagnoses and prognoses from patients who are imminently dying outweighs the potential benefits. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Lisa’s StoryLisa P. (wife of patient) and Jeanne KerwinMy husband suffered from sudden onset of heart failure with a very low ejection fraction and was on IV Milrinone at the age of 47. One of the most powerful things he told me was that he was not afraid to die and therefore did not want to move forward with Milrinone. He eventually “did it for the kids.” After the (...) Milrinone drip was no longer working, he was offered an LVAD (left ventricular assist device) to keep him alive. He refused, but the doctor again convinced him to “do it for your kids” and said, “we put these devices in 80-year-olds.” He did not have time to explore any other options and reluctantly accepted the LVAD. It was implanted in May of 2014 in a very long and complicated surgery with a long and difficult recovery. He was in the hospital for a long time, and then he refused to go to rehab upon discharge, making it difficult for our family to manage, as he was extremely weak and needed care of his wound dressing. He worried about the financial [End Page 7] impact of a heart transplant and the medications required, as we were already struggling with the medical bills. He refused to have more surgery with the potential complications and never agreed to get on the transplant waiting list.After the implanted LVAD, my husband was not able to do most of what he loved in life. He couldn’t work (he was a truck driver), he couldn’t go fishing or swimming in the ocean, he couldn’t go hunting and fishing, and his overall physical condition was so poor that he couldn’t cook, garden and, most aggravating to him, he could not take a regular hot shower. The LVAD had to be covered with plastic in order to avoid getting the drive-line area wet, so bathing was a complicated process. He had trouble with stairs, had neuropathic pain in his legs from diabetes, and because of the pain medications, he felt cloudy and dizzy and slept most of the day in his recliner. I took care of him, even after I had to go back to work, and at the same time, I managed our two children (ages 9 and 12 at the time of LVAD).After almost two years of living with the LVAD, multiple hospitalizations for GI bleeds then seizures, more medications, and weekly blood draws for INR1, my husband requested that the LVAD be de-activated and that he be allowed to die of his heart failure. He described his life as “miserable.” He watched as his misery impacted his children and me. He suffered daily and had none of the joys that made life worth living for him. When we approached the cardiac team that implanted and monitored his LVAD with his request, they said “no.” They would not de-activate the LVAD because it was working. It was keeping him alive and he had no other terminal illness. His palliative doctor, who was treating his pain, also heard his request and told us to call for an “ethics consult” to determine if he would be “allowed” to have the LVAD de-activated. We got the number and called on March 31, 2016.At the time of the call to Ethics, we had no idea what “Ethics” was, other than a general definition of the word ethics as in professional behaviors and such. We did not know what to expect but we called. We would never have known to call “Ethics” if the palliative doctor had not advised us to do so, and my husband might have suffered a longer, more painful life both mentally and physically prolonged by the LVAD.We explained the request to the ethics consultant. She listened to my husband describe his daily living and his dissatisfaction with the quality of his life, his physical and emotional suffering, and his wish to rid himself of the LVAD and allow nature to take its course. There was actually no decision to be made on his part. He had already made up... (shrink)

Abstract This article explores interview data from a study of 50 Norwegian generalist nurses' focus group accounts of caring for dying patients in the hospital and care home. An eclectic discourse analytic approach was applied to nurses' accounts of the patient and three discursive contexts of reference to the patient were identified: the 'taken as read' patient, the patient paired with particular characteristics and the patient as psychologically present. Talk about the patient falls mainly into the first two (...) contexts, which position the patient in relation to three closely related discursive processes: individualization, anonymization and objectification. The third context presents the patient as a person with a particular identity. The analysis is discussed in a broader philosophical and sociological context in which we return to some of the theoretical work on death and dying of the 1990s and the topic of sequestration. We suggest that nurses' talk about the patient can be heard to participate in a continuing sequestration of the dying patient in healthcare institutions focused on 'result-oriented' care. (shrink)

Purpose: To determine motives and attitudes towards life-sustaining treatments by clinical and preclinical medical students. Methods: This was a scenario-based questionnaire that presented patients with a limited life expectancy. The survey was distributed among 455 medical students in preclinical and clinical years. Students were asked to rate their willingness to perform LSTs and rank the motives for doing so. The effect of medical education was then investigated after adjustment for age, gender, religion, religiosity, country of origin, and marital status. (...) Results: Preclinical students had a significantly higher willingness to perform LSTs in all cases. This was observed in all treatments offered in cases of a metastatic oncologic patient and an otherwise healthy man after a traumatic brain injury. In the case of an elderly woman on long-term care, preclinical students had higher willingness to supply vasopressors but not perform an intubation, feed with a nasogastric tube, or treat with a continuous positive air-pressure ventilator. Both preclinical and clinical students had high willingness to perform resuscitation on a twelve-year-old boy with a TBI. Differences in motivation factors were also seen. Discussion: Preclinical students had a greater willingness to treat compared to clinical students in all cases and with most medical treatments offered. This is attributed mainly to changes along the medical curriculum. Changes in reasons for supplying LSTs were also documented. (shrink)

Objective: Cognitive impairment is a common neurological complication in patients with end-stage renal disease undergoing maintenance hemodialysis. Brain network analysis based on graph theory is a promising tool for studying CI. Therefore, the purpose of this study was to analyze the changes of functional brain networks in patients on MHD with and without CI by using graph theory and further explore the underlying neuropathological mechanism of CI in these patients.Methods: A total of 39 patients on MHD (...) and 25 healthy controls matched for age, sex, and years of education were enrolled in the study. Resting-state functional magnetic resonance imaging and T1-weighted high-resolution anatomical data were obtained, and functional brain networks for each subject were constructed. The brain network parameters at the global and regional levels were calculated, and a one-way analysis of covariance was used to compare the differences across the three groups. The associations between the changed graph-theory parameters and cognitive function scores in patients on MHD were evaluated using Spearman correlation analysis.Results: Compared with HCs, the global parameters [sigma, gamma, and local efficiency ] in both patient groups decreased significantly. The clustering coefficient in patients with CI was significantly lower than that in the other two groups. The regional parameters were significantly lower in the right superior frontal gyrus, dorsolateral and gyrus rectus of patients with CI than those of patients without CI; however the nodal local efficiency in the left amygdala was significantly increased. The global Cp and regional parameters in the three brain regions were significantly correlated with the cognitive function scores.Conclusion: This study confirmed that the topology of the functional brain network was disrupted in patients on MHD with and without CI and the disruption of brain network was more severe in patients with CI. The abnormal brain network parameters are closely related to cognitive function in patients on MHD. (shrink)

During an initial palliative care assessment, a dying man discloses that he had killed several people whilst a young man. The junior doctor, to whom he revealed his story, consulted with senior palliative care colleagues. It was agreed that legal advice would be sought on the issue of breaching the man’s confidentiality. Two legal opinions conflicted with each other. A decision was made by the clinical team not to inform the police.In this article the junior doctor, the palliative medicine (...) specialist, a medical ethicist, and a lawyer consider the case from their various perspectives. (shrink)

Based on Nathan Goldstein’s case report, “But I have a pacer…there is no point in engaging in hypothetical scenarios”: A Non-imminently Dying Patient’s Request for Pacemaker Deactivation, it is reasonable to conclude that it was, all-things-considered, ethically appropriate to grant the patient’s request to deactivate her pacemaker. Philosophically, and as a clinical bioethicist, I support the team’s decision to honor the patient’s request for pacemaker deactivation. However, it is worth exploring a bit further whether the distress on the part (...) of the outside hospital’s ethics committee and providers—who declined to honor the patient’s request for pacemaker deactivation—may actually track something of moral significance. Might their discomfort around deactivation be “truth-tracking” in moral terms? (shrink)

BackgroundAt present, adherence to antipsychotic treatment is often poor, leading to the recurrence of symptoms. This increases the likelihood of the patient experiencing disability and thus increases the disease burden for the patient, their family, and society as a whole. However, to date, there is no clear evidence regarding the effect of medication adherence interventions on outcomes for patients with schizophrenia. Moreover, the traditional intervention methods are limited by manpower and resources in low- and middle-income countries. Recent studies have (...) demonstrated that increasing a patient’s level of self-compassion may improve their treatment adherence. Online mental health care interventions have advantages in terms of feasibility and acceptability for patients with schizophrenia. In this regard, a WeChat-based self-compassion training protocol to improve patient treatment adherence was designed in this study and will be evaluated in the future to determine its impact on patients with schizophrenia.MethodsThe protocol for the randomized controlled trial is based on the SPIRIT 2013 statement. This parallel RCT will aim to recruit 392 patients with schizophrenia who will be randomized at a 1:1 ratio into a 3-week intervention or control group. Both groups will receive routine care. The intervention group will also receive WeChat-based self-compassion training, which requires participants to complete three tasks every day, including a reading task, a meditation task, and a self-compassion journal task. The control group will receive WeChat-based psychological health education, which will only require participants to read positive articles about psychological health every day. Medication adherence, self-compassion, stigma, and social support will be measured at baseline, immediately after the intervention, and 3 weeks after the intervention. Program feasibility will be evaluated throughout the course of the study, and acceptability will be measured immediately after the intervention.Expected results:The intervention described here will address the barriers to accessing mental health care for people with schizophrenia, including patients’ desire for independent management, difficulty accessing providers, and concerns about privacy and stigma. The current study provides guidance for clinical nurses to carry out psychological intervention, with the ultimate aim of addressing the problems associated with a shortage of psychological professionals in low- and middle-income countries. (shrink)

Non-therapeutic research with imminently dying patients in intensive care presents complex ethical issues. The vulnerabilities of the imminently dying, together with societal disquiet around death and dying, contribute to an intuition that such research is beyond the legitimate scope of scientific inquiry. Yet excluding imminently dying patients from research hinders the advancement of medical science to the detriment of future patients. Building on existing ethical guidelines for research, we propose a framework for the (...) ethical design and conduct of research involving the imminently dying. To enable rapid translation to practice, we frame the approach in the form of eight ethical questions that researchers and research ethics committees ought to answer prior to conducting any research with this patient population. (1) Does the study hypothesis require the inclusion of imminently dying patients? (2) Are non-therapeutic risks and burdens minimised consistent with sound scientific design? (3) Are the risks of these procedures no more than minimal risk? (4) Are these non-therapeutic risks justified insofar as they are reasonable in relation to the anticipated benefits of the study? (5) Will valid informed consent be obtained from an authorised surrogate decision maker? (6) How will incidental findings be handled? (7) What additional steps are in place to protect families and significant others of research participants? (8) What additional steps are in place to protect clinical staff and researchers? Several ethical challenges hinder research with imminently dying patients. Nonetheless, provided adequate protections are in place, non-therapeutic research with imminently dying patients is ethically justifiable. Applying our framework to an ongoing study, we demonstrate how our question-driven approach is well suited to guiding investigators and research ethics committees. (shrink)

It is evident, in the face of the COVID-19 pandemic that has physicians confronting death and dying at unprecedented levels along with growing data suggesting that physicians who care for dying patients face complex emotional, psychological and behavioural effects, that there is a need for their better understanding and the implementation of supportive measures. Taking into account data positing that effects of caring for dying patients may impact a physician’s concept of personhood, or “what makes (...) you, ‘you’”, we adopt Radha Krishna’s Ring Theory of Personhood (RToP) to scrutinise the experiences of physicians working in intensive care units (ICU) using a fictional scenario that was inspired by real events. The impact of death and dying, its catalysts, internal constituents, external factors, dyssynchrony, and buffers, specific to ICU physicians, were identified and explored. Such a framework allows for ramifications to be considered holistically and facilitates the curation of strategies for conflict resolution. This evaluation of the RToP acknowledges the experience and wide-ranging effects it has on ICU physicians. As such, our findings provide insight into their specific needs and highlight the importance of support on a personal and organisational level. Although further research needs to be conducted, the RToP could serve as the basis for a longitudinal assessment tool supported by the use of portfolios or mentorship due to their provision of personalised, appropriate, specific, timely, accessible and long-term support. (shrink)

Background Supporting physicians in Intensive Care Units s as they face dying patients at unprecedented levels due to the COVID-19 pandemic is critical. Amidst a dearth of such data and guided by evidence that nurses in ICUs experience personal, professional and existential issues in similar conditions, a systematic scoping review is proposed to evaluate prevailing accounts of physicians facing dying patients in ICUs through the lens of Personhood. Such data would enhance understanding and guide the provision (...) of better support for ICU physicians. Methods An SSR adopts the Systematic Evidenced Based Approach to map prevailing accounts of caring for dying patients in ICUs. To enhance the transparency and reproducibility of this process, concurrent and independent use of tabulated summaries, thematic analysis and directed content analysis is adopted. Results Eight thousand three hundred fifty-eight abstracts were reviewed from four databases, 474 full-text articles were evaluated, 58 articles were included, and the Split Approach revealed six categories/themes centered around the Innate, Individual, Relational and Societal Rings of Personhood, conflicts in providing end of life care and coping mechanisms employed. Conclusion This SSR suggests that caring for dying patients in ICU impacts how physicians view their personhood. To resolve conflicts within individual concepts of personhood, physicians use prioritization, reframing and rely on accessible, personalized support from colleagues to steer coping strategies. An adapted form of the Ring Theory of Personhood is proposed to direct timely personalized, appropriate and holistic support. (shrink)

Background: Frailty is a common syndrome among older adults and patients with several comorbidities. Grip strength is a representative parameter of frailty because it is a valid indicator of current and long-term physical conditions in the general population and patients with severe mental illnesses. Physical and cognitive capacities of people with SMIs are usually impaired; however, their relationship with frailty or social functioning have not been studied to date. The current study aimed to determine if GS is a (...) valid predictor of changes in cognitive performance and social functioning in patients with type-2 diabetes mellitus and SMIs. Methods: Assessments of social functioning, cognitive performance, and GS were conducted in 30 outpatients with type 2 diabetes mellitus, 35 with major depressive disorder, 42 with bipolar disorder, 30 with schizophrenia, and 28 healthy controls, twice during 1-year, follow-up period. Descriptive analyses were conducted using a one-way analysis of variance for continuous variables and the chi-squared test for categorical variables. Differences between groups for the motor, cognitive, and social variables at T1 and T2 were assessed using a one-way analysis of covariance, with sex and age as co-variates. To test the predictive capacity of GS at baseline to explain the variance in cognitive performance and social functioning at T2, a linear regression analysis was performed. Results: Predictive relationships were found among GS when implicated with clinical, cognitive, and social variables. These relationships explained changes in cognitive performance after one year of follow-up; the variability percentage was 67.7%, in patients with type-2 diabetes mellitus and 89.1% in patients with schizophrenia. Baseline GS along with other variables, also predicted changes in social functioning in major depressive disorder, bipolar disorder, and schizophrenia, with variability percentages of 67.3, 36, and 59%, respectively. Conclusion: GS combined with other variables significantly predicted changes in cognitive performance and social functioning in people with SMIs or type-2 diabetes mellitus. Interventions aimed to improve the overall physical conditions of patients who have poor GS could be a therapeutic option that confers positive effects on cognitive performance and social functioning. (shrink)

Background Coping with end-of-life issues is a major challenge for governments and health systems. Despite progress in legislation, many barriers exist to its full implementation. This study is aimed at identifying these end-of-life barriers in relation to Israel. Methods Qualitative in-depth interviews using professionals and decision makers in the health-care and related systems were carried out, along with two focus groups based on brainstorming techniques consisting of nurses and social workers. Data was managed and analyzed using Naralyzer software. Results Qualitative (...) analysis showed identification of six primary barriers: 1) law, procedures, and forms; 2) clinical aspects; 3) human aspects; 4) knowledge and skills of medical teams; 5) communication; and 6) resource allocation. These were further divided into 44 sub area barriers. Conclusions This study highlights the role of the family doctor in end-of-life by training physicians in decision-making workshops and increasing their knowledge in the field of palliative medicine. Effectively channeling resources, knowledge, and support for medical teams, by accounting for the structure and response of the units for home treatment will improve patient’s access to information on and support for end-of-life laws, as well as reduce legislative barriers in other countries that face the same issues. (shrink)

The Liverpool Care Pathway for the Dying Patient (LCP) was an integrated care pathway for patients in the final days or hours of life, developed at the Royal Liverpool University Hospital in conjunction with the Marie Curie Palliative Care Institute, Liverpool. The LCP became increasingly the normative style of care for patients in the terminal stage across NHS England from the 1990s onwards. Following significant questions raised in Parliament, by the media and other stakeholders, an independent review (...) panel was established under Baroness Neuberger in 2013 to investigate the LCP. The findings of the panel were published as More Care Less Pathway: a Review of the Liverpool Care Pathway identifying significant failings in the delivery of the LCP thus leading to it being phased out some six months later. Rather than being euthanasia through the backdoor, many of the criticisms of the LCP and its poor implementation are indicative of poor communication, limited knowledge of the dying process and a paucity of death education. (shrink)

This paper examines the reactions of physicians and other health-professionals when they become involved in decisions about the death of their patients. The way people understand the condition of death has a profound influence on attitudes towards death and dying issues. Four traditional views of death are explored. The problem that physicians have in helping patients die is analyzed. Physicians, in dealing with such patients, must be mindful of their own, and their patients beliefs as (...) well as mindful of the community in which such dying takes place. They must try to reconcile these often divergent views but can neither paternalistically deny patients their rational will, hide themselves behind an appeal to the law or go against their own deeply held moral views. When such views cannot be reconciled, compassionate transfer to a more compatible physician may be necessary. (shrink)

Caring for seriously ill and dying patients plays a key role in the patient-physician story. The emotional experience, while at times gratifying, can also be quite burdensome. In “The Inner Lives o...

The aim of the present study was to corroborate or undermine a previously presented conjecture that physicians’ estimations of others’ opinions are influenced by their own opinions. We used questionnaire based cross-sectional design and described a situation where an imminently dying patient was provided with alleviating drugs which also shortened life and, additionally, were intended to do so. We asked what would happen to physicians’ own trust if they took the action described, and also what the physician estimated would (...) happen to the general publics’ trust in health services. Decrease of trust was used as surrogate for an undesirable action. The results are presented as proportions with a 95 % Confidence Interval. Statistical analysis was based on inter-rater agreement -test as well as χ2 test and Odds Ratio with 95 % CI. We found a moderate inter-rater agreement between what would happen with the physicians’ own trust in healthcare and their estimations of what would happen with the general population’s trust. We identified a significant difference between being pro et contra the treatment with double intentions and the estimation of the general population’s trust. Focusing on either decreasing or increasing own trust and being pro or contra the action we identified a strong association [OR 79 ]. Although the inter-rater agreement in the present study was somewhat weaker compared to a study about the explicit use of the term ‘physicians assisted suicide’ we found that our hypothesis—physicians’ estimations of others’ opinions are influenced by their own opinions—was corroborated. This might have implications in research as well as in clinical decision-making. We suggest that Merton’s ideal of disinterestedness should be highlighted. (shrink)

Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well described. In this study, we explored the lived experiences of family members who consented to non-therapeutic research participation on behalf of an imminently dying patient. We interviewed 33 family members involved in surrogate research consent decisions for dying patients in intensive care. Non-therapeutic research involved continuous physiological (...) monitoring of dying patients prior to and for 30 min following cessation of circulation. At some study centres participation involved installation of bedside computers. At one centre electroencephalogram monitoring was used with a subset of participants. Aside from additional monitoring, the research protocol did not involve deviations from usual end-of-life care. Thematic analysis of interviews suggests most family members did not perceive this minimal-risk, non-therapeutic study to affect their time with patients during the dying process, nor did they perceive research consent as an additional burden. In our analysis, consenting for participation in perimortem research offered families of the dying an opportunity to affirm the intrinsic value of patients’ lives and contributions. This opportunity may be particularly important for families of patients who consented to organ donation but did not proceed to organ retrieval. Our work supports concerns that traditional models of informed consent fail to account for possible benefits and harms of perimortem research to surviving families. Further research into consent models which integrate patient and family perspectives is needed. All data relevant to the study are included in the article. (shrink)

In this paper, we offer a phenomenological and hermeneutical perspective on the presence of clinicians who care for the suffering and dying patients in the context of end-of-life care. Clinician presence is described as a way of (1) being present to the patient and to oneself, (2) being in the present moment, and (3) receiving and giving a presence (in the sense of a gift).We discuss how presence is a way of restoring human beings’ relational and dialogical nature. (...) To inform a different perspective on relational ethics, we also discuss how accompaniment refers to the clinician’s awareness of the human condition and its existential limits. (shrink)

In this case report, we describe a woman with advancing dementia who still retained decisional capacity and was able to clearly articulate her request for deactivation of her implanted cardiac pacemaker—a scenario that would result in her death. In this case, the patient had the autonomy to make her decision, but clinicians at an outside hospital refused to deactivate her pacemaker even though they were in unanimous agreement that the patient had capacity to make this decision, citing personal discomfort and (...) a belief that her decision seemed out of proportion to her suffering. We evaluated her at our hospital, found her to have decision-making capacity, and deactivated her pacer resulting in her death about 9 days later. While some clinicians may be comfortable discussing patient preferences for device deactivation in patients who are imminently dying, we can find no reports in the literature of requests for device deactivation from patients with terminal diagnoses who are not imminently dying. (shrink)

Multiprofessional teams have become in recent years one of the distinguishing features of services, where professionals with different competences work together. The core of our interest is addressed to the équipe of a palliative care ward; in particular, to that series of working activities that consists of communicative acts, as équipe meetings, for instance. Our research focuses on the analysis of the process by which the development of knowledge in multiprofessional practice is built to establish more information on recurrent patterns (...) in the interaction and connect them to the specific context that these are shaped by. In this sense we will underline how components of knowing are shared among team members in constructing medical prognosis and we will analyse the connection among language processes, cognitive activities and social structures. More specifically, we will study the role of language and the context in the definition of linguistic acts in cognitive activities and in hierarchies involved in decision-making processes by exploring and pointing out how it is organised and structured. In particular through the study of talk-in-interaction where interchange of information is realised, we will emphasise how, in the multiprofessional équipe meeting, the realisation of practices and the knowledge useful to collaborative management of ward working life are established. To reach this aim, we adopted an ethnographic approach connected to the analysis of the situated interaction. (shrink)

The Roman Catholic theological approach to euthanasia is radically prohibitive. The main theological argument for this prohibition is the so-called “stewardship argument”: Christians cannot escape accounting to God for stewardship of the bodies given them on earth. This contribution presents an alternative approach based on European existentialist and philosophical traditions. The suggestion is that exploring the fullness of our relational responsibility is more apt for a pluralist – and even secular – debate on the legitimacy of euthanasia.

In the latter half of the 20th century, Western medicine moved death from the home to the hospital. As a result, the process of dying seems to have lost its spiritual dimension, and become a matter of prolonging material life by means of medical technology. The novel quandaries that arose led in turn to medico-legal regulation. This paper describes the recent regulation of dying in Israel under its Dying Patient Law, 2005. The Law recognizes advance directives in (...) principle, but limits their effect and form through complex medico-legal artifices. It reflects a culture that places high value on both scientific medicine and the sanctity of life as such, and illustrates a medical culture that pitches battle against death. At the same time, the Law constructs the will of the individual in a medico-legal language that is alien to the lay person. The paper suggests an alternative approach to advance care planning that is patient-centred and addresses the psycho-social needs of the individual in terms of her relational autonomy. From this perspective, advance care planning becomes an opportunity to extract the patient from the medical context and allow her to speak about her approaching death with close ones in her own terms of reference. To this end, there is a need for facilitation of an intimate encounter where patients can speak about their concerns with their loved ones. The paper also presents a methodological approach of attentive listening, which can be applied across diverse cultures and circumstances. (shrink)

BackgroundIn the ruling inY[2018], the UK Supreme Court has confirmed that there is no general requirement for the courts in England and Wales to authorise the withdrawal of clinically assisted nutrition and hydration from patients with prolonged disorders of consciousness. The perceived requirement, which originated in a court ruling in 1993, encompassed those in the vegetative state and those in the minimally conscious state. The ruling inYconfirms that the court may still be approached to decide difficult or contested cases, (...) but there is otherwise no routine requirement that the judges be approached.Main bodyThere is much to welcome in this ruling, particularly as it means that these decisions for these patients are no longer (unusually) singled out for a judicial decision, with all the financial and emotional costs that court proceedings can entail. However, there is also a risk that the ruling might have unwelcome consequences. First, there is the possibility that patients might die too soon, particularly if doctors should now adopt the courts’ previous reasoning, which has suggested that patients in the vegetative state lack interests, so treatment may – perhaps must – be withdrawn. Secondly, there is the converse possibility that patients might live too long, since empirical research suggests that – whether intentionally or not – patients’ families, clinicians, and the health system appear to promote treatment-by-default.ConclusionRather than adopt general positions, which may be contestable and potentially risky, this article argues, on a pluralistic basis, that the individual patient should be the focus of any decision made in his or her ‘best interests’. The existing legal framework in England and Wales, which is provided by the Mental Capacity Act 2005, already points in this direction, although more efforts may be needed to ensure that those involved in making these decisions are suitably educated and supported. Fortunately, new guidance from the British Medical Association could help clinicians and families to make decisions in the future, which are appropriate for the incapacitated individual patient in question. (shrink)

Background: Debates over legalisation of physician-assisted suicide or euthanasia often warn of a “slippery slope”, predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period.Methods: The data from Oregon comprised all annual and cumulative Department of Human Services reports 1998–2006 and three independent studies; the data from the Netherlands comprised all (...) four government-commissioned nationwide studies of end-of-life decision making and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought.Results: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured , people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups.Conclusions: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges. (shrink)

A governing principle in medical ethics is respect for patient autonomy. This principle is commonly drawn upon in order to argue for the permissibility of assisted dying. In this paper I explore the proper role that respect for patient autonomy should play in this context. I argue that the role of autonomy is not to identify a patient’s best interests, but instead to act as a side-constraint on action. The surprising conclusion of the paper is that whether or not (...) it is in the best interests for the patient to die is a morally objective matter. This allows for the possibility that it can be in the best interests of the patient to die even if she autonomously considers it to be in her best interest to continue living. I argue that concerns about ‘mandatory’ euthanasia can be met when patient autonomy is respected as a side-constraint on action. Ultimately, this means that assisted dying is permissible, not because the autonomous patient views her suffering to be unbearable, but because it is in her objective best interests and she permitted it via her consent. (shrink)

This book examines when it is morally appropriate for medical intervention to hasten the dying process. The authors’ overriding goal is to humanize the dying process by expanding patient centered autonomous control.

Background Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying. Methods 28 semi-structured interviews were conducted with (...) 32 family caregivers and one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically. Results Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient’s illness; progression or state of a patient’s illness; patient’s geographical location; and the capability and assertiveness of a patient and/or caregiver. Conclusions Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria’s existing policy approach appears to preference institutional positions over patient’s choice given existing power dynamics. (shrink)

Objective: Little empirical evidence exists to support either side of the ongoing debate over whether legalising physician aid in dying would undermine patient trust.Design: A random national sample of 1117 US adults were asked about their level of agreement with a statement that they would trust their doctor less if “euthanasia were legal [and] doctors were allowed to help patients die”.Results: There was disagreement by 58% of the participants, and agreement by only 20% that legalising euthanasia would cause (...) them to trust their personal physician less. The remainder were neutral. These attitudes were the same in men and women, but older people and black people had more agreement that euthanasia would lower trust. However, overall, only 27% of elderly people and 32% of black people thought that physician aid in dying would lower trust. These views differed with physical and mental health, and also with education and income, with those having more of these attributes tending to view physician aid in dying somewhat more favourably. Again, however, overall views in most of these subgroups were positive. Views about the effect of physician aid in dying on trust were significantly correlated with participants’ underlying trust in their physicians and their satisfaction with care. In a multivariate regression model, trust, satisfaction, age, and white/black race remained independently significant.Conclusion: Despite the widespread concern that legalising physician aid in dying would seriously threaten or undermine trust in physicians, the weight of the evidence in the USA is to the contrary, although views vary significantly. (shrink)

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. (...) Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care. (shrink)

In this article we will be arguing in favour of legislating to protect doctors who bring about the deaths of PVS patients, regardless of whether the death is through passive means or active means. We will first discuss the ethical dilemmas doctors and lawmakers faced in the more famous PVS cases arising in the US and UK, before exploring what the law should be regarding such patients, particularly in Australia. We will continue by arguing in favour of allowing (...) euthanasia in the interests of PVS patients, their families, and finally the wider community, before concluding with some suggestions for how these ethical arguments could be transformed into a set of guidelines for medical practice in this area. (shrink)

The aim of this paper is to ponder the intricate issue of the right to die in dignity by focusing attention on the role of the patient's beloved people. I first provide critical examination of some of the arguments advanced by Ronald Dworkin. I proceed by contemplating relevant scenarios and examining three American court decisions: Saikewicz, Spring and Gray. The first case, Saikewicz, concerns a patient who had no family or other beloved people. I observe that this fact had a (...) significant bearing on the court's ruling not to provide him treatment. The second case, Spring, involves a patient whose family wanted to withhold treatment from him. I argue that we should be cautious of incidents in which the best interests of the patient's beloved people come at the expense of the best interests of the patient. Spring is an example of such a case. The third case, Gray, serves as an example whereby the best interests of the patient coincide with the best interests of her beloved people. I conclude by arguing that attention has to be given to the question of whether the patient's close-ones demonstrate a unified position in regard to the destiny of the patient. Gegenstand des Beitrags ist es, das schwierige Problem des Rechts, in Würde zu sterben, im Hinblick auf die Rolle der Personen zu überdenken, die dem Patienten nahestehen. Der Autor setzt sich zunächst kritisch mit einigen von Ronald Dworkin vorgetragenen Argumenten auseinander. Dann stellt er die relevanten Fallgestaltungen dar und untersucht drei Entscheidungen amerikanischer Gerichte: die Fälle Saikewicz, Spring und Gray. Der erste Fall, Saikewicz, betrifft einen Patienten ohne Familie oder andere ihm nahestehende Personen. Dieser Umstand hatte einen wesentlichen Einfluß auf die Entscheidung des Gerichts, von der Anordnung einer Behandlung des Patienten abzusehen. Im zweiten Fall, Spring, wünschte die Familie, daß der Patient nicht behandelt würde. Der Autor mahnt für alle die Fälle zur Vorsicht, bei denen die Umstände so beschaffen sind, daß das wohlverstandene Interesse der Angehörigen und das des Patienten kollidieren. Der Fall Spring ist ein Beispiel für eine solche Kollisionssituation. Der dritte Fall, Gray, dient als ein Beispiel, in dem sich das wohlverstandene Interesse des Patienten und das der ihm nahestehenden Personen decken. Zuletzt geht es um die Frage, ob die Angehörigen und andere dem Patienten nahestehende Personen in ihren Vorstellungen über das weitere Schicksal des Patienten übereinstimmen oder nicht. Die Frage verdient eine besondere Aufmerksamkeit. (shrink)

In considering the patient's right to a certain quality of dying, this essay outlines how the legal and ethical justifications for passive euthanasia depend on the doctrine of acts and omissions. It is suggested that this doctrine is untenable and that alternative justifications are needed. The development of the modern mechanistic approach to death is traced, showing that a possible basis for an humane way of death lies in a reacceptance of a metaphysical concept of life.

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational (...) phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)