Introduction

This is a book about living solid organ donors as patients in their own right. It is premised on the supposition that the field of living donor organ transplantation is ethical, even if some instantiations are not, eg, pre-mortem organ procurement of an imminently dying patient. In this chapter, the objection to living solid organ donation based on the obligation to do no harm is rejected because it ignores the fact that for many living donors, the benefits outweigh the harms. It is argued that the principle of respect for persons permits some living solid organ donation provided that both the donor and the recipient are treated as patients in their own right. This chapter then provides an outline for the rest of the book in which a five-principle living donor ethics framework is developed and applied to various living donor transplant proposals.

Questioning the Premise

Given the gap between demand and supply, living donation is not going away any time soon. This chapter explores the book’s initial premise that the field of living donor organ transplantation is ethical, even if some specific applications are not, eg pre-mortem organ procurement of an imminently dying patient. Concerns regarding the appropriate moral limits to living solid organ donation by both eminent transplant physicians (Joseph Murray, Felix Rapaport) and the social scientists (Renée Fox, Judith Swazey) embedded in evaluating the practice are explored. This chapter reiterates the book’s primary position: only if living organ donors are regarded as patients in their own right can the moral limits of living solid organ donation be realized and living donors be given the full respect that they deserve.

„PACIJENTOVO PISMO“ KAO PRAVNI OSNOV ZA PRIMENU PASIVNE EUTANAZIJE

The subject of the paper is the relationship between the duties of physicians and other medical professionals towards the dying patient (as a provider of medical services) and the patient's right to personal choice and preservation of his own right to self-determination in relation to body and life, which is a special subjective civil right. The author discusses the legal-medical (but also ethical) issue of the patient's ability to freely decide not to agree to a medical measure of artificial prolongation of life or suspension of already started measures. The issue is examining the limits of the so-called permissibility of “passive euthanasia”, which is indirectly recognized in domestic law by the Law on Patients' Rights and the legal basis for its application in one particular modality, the so-called "Patient letter" (living will) which is an established legal instrument in some foreign legislation and practice. Analyzing the experience of some foreign countries, the author supports the introduction of such an institute - as a kind of anticipated directives in domestic law, referring to the patient's constitutional right to self-determination, which embodies the supreme good, even more valuable than (unwanted) life. Such a solution is in line with the principle of human will autonomy, freedom to dispose of life as a personal good, and potentially a reflection of the so-called "the right to die", which is the reverse of the right to life

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives’ experiences? A two country survey

ObjectivesAdvance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017–2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not.MethodsRelatives after cancer deaths in hospitals answered the CODE questionnaire 6–8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient’s remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models.Results276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18–80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support.ConclusionsRelatives who had been invited to a conversation about wishes for the patient’s remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient’s final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.

Death in the Hospital: The Witnessing of the Patient with Cancer

Objectives: The aim of the study was to know the witnessing of death from the perspective of the cancer patient in the hospital environment. Materials and Methods: This is a qualitative and descriptive study, which was carried out in a cancer hospital in southern Brazil, with 27 cancer patients, through semi-structured interview, after the institutional research ethics committee approval. For categorisation and data analysis, Iramuteq software and Creswell content analysis were used. Results: Six classes emerged from the Iramuteq software and four categories were formed: (1) The reflection of the other itself; (2) feelings and emotions aroused; (3) the witnessing of a peaceful death and (4) death as a habitual event. Conclusion: Patients felt sad and distressed, and some perceived death as something natural, often necessary for the relief of suffering. They put themselves in the place of the dying patient and their family members, imagining their loved ones and the suffering they would experience. Participants considered peaceful deaths to be good, unlike those in which patients had some kind of discomfort, described as horrible, distressing, sad and bad.

The conscious state of the dying patient: An integrative review

Objectives The cognitive state of the dying in the last days of life may deteriorate, resulting in a reduced ability to communicate their care needs. Distressing symptoms, physical and existential, may go unrecognized and untreated. The objectives of this integrative review were to systematically interrogate the literature to determine the changing conscious state of dying adults and to identify changes in their care needs. Methods An integrative review protocol was registered with PROSPERO (CRD42020160475). The World Health Organization definition of palliative care informed the review. CINAHL, MEDLINE (OVID), Scopus, PsycINFO, Cochrane Library, and PubMed were searched from inception to October 2019 using search strategies for each database. Inclusion and exclusion criteria were applied. Methodological quality was appraised using the Joanna Briggs Institute Checklist for the Case Series appraisal tool. Extracted data were synthesized using a narrative approach. Results Of 5,136 papers identified, 11 quantitative case series studies were included. Six themes were identified: conscious state and change over time, awareness, pain, absence of holistic care, the voiceless patient, and signs and symptoms of dying. Significance of results In the last days of life, the physical and conscious state of the dying patient declines, resulting in an inability to express their care needs. Dignity in dying and freedom from pain and suffering are both an imperative and a human right; and unvoiced care needs can result in unnecessary suffering and distress. This review revealed that little is known about how healthcare professionals assess holistic care needs at this vulnerable time. Although much has been written about palliative and end-of-life care, the assessment of care needs when patients are no longer able to voice their own needs has largely been ignored, with little attention from clinical, educational, or research perspectives. This gap in evidence has important implications for the dying and their families.

Medical ethics in relationship with moribund patient

The continuous changes in the basic values of modern society are based on transformations in the field of intellectual communication, an avalanche-like increase in the volume of new knowledge, the emergence of new medical technology, and a sharp increase in attention to human rights. These processes exacerbate deontological problems, which are most difficult to manifest when a doctor comes into contact with a dying patient. Purpose of the study. To improve the quality of medical care for a patient in a terminal state. Research results. For most people, death is associated with severe physical and spiritual suffering. The doctor can alleviate this suffering only with a deep understanding of the phenomenon of death, both from scientific and religious positions. The article analyzes the philosophical foundations of medical ethics, knowledge of which is necessary for a doctor when communicating with a dying patient. The modern understanding of death as a natural event necessary to support the development of living nature is given. It is shown that our society has not yet developed the principles of the culture of death. In connection with the development of modern medical technologies, it became necessary to search for new criteria for death. The modern legal and moral interpretation of the human right to death with dignity is considered. The difficulty of communicating information about a fatal diagnosis to a patient is noted: when a bitter truth is possible, and when a “holy” lie is needed. The proposition is put forward that the complexity and contradictory nature of the problem of euthanasia is solved by providing the terminal patient with high-quality palliative care. Conclusion. Despite all the wonderful judgments about the necessity and importance of death in the development of mankind, the tragedy of personal death cannot be removed even by the most optimistic philosophy. However, a doctor, armed with modern knowledge, possessing modern deontological methods, endowed with high moral qualities, can significantly reduce the level of feeling of this tragedy. Death is an important stage in a person's life, the confidence of all living people that their terminal period will be provided with proper care and attention, will greatly improve the quality and the entire period of a person's life.

Medical student anxiety in caring for dying patients and their family: a cross-sectional study

ObjectivesTo investigate the level of medical student anxiety in caring for a dying patient and their family and identify influencing factors.MethodsWe conducted a cross-sectional survey in a UK medical school to measure medical student anxiety using a validated Thanatophobia Scale questionnaire.ResultsIn total, 332 questionnaires were completed. Mean thanatophobia score was 19.5 (SD 7.78, range 7–49). Most respondents were female (67.4%) and did not have a previous undergraduate degree (56%). Median student age was 22 years (IQR 20–24). Year of study influenced anxiety level, with second year students displaying an increase in mean thanatophobia score of 6.088 (95% CI 3.778 to 8.398, p<0.001). No significant differences were observed between final year and first year thanatophobia scores. For each 1-year increase in student age, mean thanatophobia score reduced by −0.282 (95% CI −0.473 to −0.091, p=0.004). Degree status and gender identity did not significantly affect thanatophobia score.ConclusionA degree of thanatophobia exists among medical students, with no significant improvement observed by completion of training. Recognising this anxiety to care for the dying earlier in undergraduate curricula will give educators the opportunity to address students’ fears and concerns and better prepare our future doctors for their role in caring for our dying patients and their families.

Talking About End-of-Life Care: How Should Physicians Act

Physicians should be adept in communication and familiar with the various end-of-life issues and their implications. However, physicians in Bangladesh usually receive very little training or guidance on how to communicate with the dying patients and their families. Since death is a common phenomenon, for physicians in their day-to-day practice, it sometimes becomes difficult to engage in end-of-life discussions in a death-averse society. This review paper aims to discuss a pragmatic step-by-step approach to discussing end-of-life care in a Bangladeshi context maintaining local social and cultural views. Specifically outlined in each of these four steps, a physician should seek a common understanding with the patient and family. Moreover, if any disagreement arises, overt conflict can often be avoided by reviewing what was discussed earlier with the patient or family. We all know that providing a supportive care for a dying patient is challenging. However, when it is done well, it becomes a meaningful and gratifying experience for the physician. As we know, helping someone die in comfort and with dignity signifies a good death and one of the best gifts of life that theoretically leads him/her to rest in peace. CBMJ 2020 January: Vol. 09 No. 01 P: 38-42

Management of the actively dying patient

Few issues so encapsulate the palliative care as the skilled care of the dying patient and their family members. How patients die is a matter of supreme consequence in the human life cycle and for the surviving family. This chapter presents a multidisciplinary approach to highlighting challenges in identifying the terminal phase, approaches to help the clinician address the needs of patients and their family members, the management of common symptoms at the end of life including the management of refectory symptoms at the end of life. Tabulated information highlights some of the special issues including practical ways family members can participle in the care of their loved ones. The chapter concludes with some of the challenging issues related to hydration and nutrition, difficult deaths and staff coping and support.