Providing a model for the transformative work that is required going forward, The Crisis of US Hospice Care illustrates the potential of hospice for facilitating a new way of living our last days and for having the best death possible.

Narrative Medicine in Hospice Care argues that the models of selfhood and care found in the work of Paul Ricoeur can serve as a framework for clinicians, caregivers, and end-of-life patients regardless of the patients’ verbal and cognitive capabilities.

Background: Hospices are based on a holistic approach which places the physical, psychological, social and spiritual welfare of their patients at the forefront of their work. Furthermore, they draw up their own mission statements which they are at pains to follow and seek to conduct their work in accordance with codes of ethics and standards of care. Research question and design: Our study researched what form the processes and degrees of latitude in decision-making take in practice when questions of (...) an ethical and ethically relevant nature arise. We used a qualitative approach. Data collection and evaluation was based on the methods of grounded theory. Ethical considerations: The study was reported to the relevant Ethics Commission who had raised no objections following the submission of the study protocol. The study at the hospices was approved by the directors of the hospices and the nursing teams. The rights of the participants were protected by obtaining informed consent. Results: Medication in the prefinal phase and questions affecting the provision of solids and liquids in the end-of-life phase have an ethical dimension. In the context of these two fields, decisions are taken collectively. A nurse’s individual (and ethically relevant) leeway in decision-making processes is restricted to the nurse’s own style of administering care. The nurse’s decision-making often depends to a far greater degree on her ability to adapt her concept of ideal care to fit the practical realities of her work than to any conceptual framework. Discussion: An adaptive process is necessary for the nurse because she is required to incorporate the four pillars of hospice care – namely, physical, psychological, social and spiritual care – into the practice of her daily work. Conclusion: Ethically relevant decisions are often characterised by nurses adjusting their aspiration levels to the practical conditions with which they are confronted. (shrink)

Good nursing is more than exercising a specific set of skills. It involves the personal identity of the nurse. The aim of this article is to answer two questions: (1) what kind of person should the hospice nurse be? and (2) how should the hospice nurse engage in caring conversations? To answer these questions we analyse a nurse’s story that is intended to be a profile of an exemplary hospice nurse. This story was constructed from an analysis (...) of five semistructured interviews with hospice nurses, based on the ‘ethics of the caring conversation’, which is inspired by the ethical perspective of Paul Ricoeur. The research questions concentrate on the norms of respect, responsibility and reciprocity, which are integral parts of the ‘ethics of the caring conversation’. (shrink)

Recent studies suggest that terminally ill African Americans’ care is generally more expensive and of lower quality than that of comparable non-Hispanic white patients. Scholars argue that increasing hospice enrollment among African Americans will help improve end-of-life care for this population, yet few studies have examined the experiences of African American patients and their loved ones after accessing hospice care. In this article, we explore how African American patients and lay caregivers evaluated their hospice (...) experiences. Drawing from 39 in-depth interviews with 26 participants, we use a modified version of Bute and Jensen’s (2011) narrative typology to organize patients’ and caregivers’ stories into three general categories: narratives of satisfaction, narratives of regret, and narratives of ambivalence. Building from these categories, we discuss the implications of this research for understanding hospice experiences, promoting hospice access, and improving end-of-life care for marginalized populations. (shrink)

ABSTRACT Objectives There is little research on moral uncertainties and distress of palliative and hospice care providers (PHCPs) working in jurisdictions anticipating legalising voluntary assisted dying (VAD). This study examines the perception and anticipated concerns of PHCPs in providing VAD in the State of Queensland, Australia prior to legalisation of the practice in 2021. The findings help inform strategies to facilitate training and support the health and well-being of healthcare workers involved in VAD. Design The study used a (...) qualitative approach to examine and analyse the perception and anticipated concerns of PHCPs regarding challenges of providing assisted dying in Queensland. Fourteen PHCPs were recruited using a purposive sampling strategy to obtain a broad representation of perspectives including work roles, geographical locations and workplace characteristics. Data were collected via one in-depth interview per participant. The transcripts were coded for patterns and themes using an inductive analysis approach following the tradition of Grounded Theory. Setting The study was conducted in hospital, hospice, community and residential aged care settings in Queensland, Australia. These included public and private facilities, secular and faith-based facilities, and regional/rural and urban facilities. Participants Interviews were conducted with fourteen PHCPs: 10 nurses and 4 physicians; 11 female and 3 male. The median number of years of palliative care practice was 17, ranging from 2 to 36 years. For inclusion, participants had to be practising palliative and hospice care providers. Results PHCPs are divided on whether VAD should be considered part of palliative care. Expectations of moral distress and uncertainty about practising VAD were identified in five areas: handling requests, assessing patient capacity, arranging patient transfers and logistical issues, managing unsuccessful attempts, and dealing with team conflicts and stigma. Conclusions The possibility of having to practise VAD causes moral distress and uncertainty for some PHCPs. Procedural clarity can address some uncertainties; moral and psychological distress, however, remains a source of tension that needs support to ensure ongoing care of both patients and PHCPs. The introduction of VAD post-legalisation may present an occasion for further moral education and development of PHCPs. (shrink)

Hospices consider themselves places that practise a holistic form of terminal care, encompassing physical and psychological symptoms, and also the social and spiritual support for a dying patient. So far, the underlying ethical principles have been treated predominantly in terms of a normative theoretical discussion. The interview study discussed in this paper is a qualitative investigation into general and hospice-related conceptions of morality among full-time and voluntary workers in German inpatient hospices. It examines moral conflicts and efforts leading (...) to their solution. The main ideas identified include moral neutrality towards the patients and their requests, the capability of acceptance, the idea of self-restraint with respect to the dying patient and the principle of respect for the natural course of dying. Essential triggers for moral conflicts were the inadequate education of patients, problems of acceptance in view of incurable disease, and disagreements between members of patients' families. The interviewees expressed their scepticism towards formal institutions of ethical counselling. The study has shown a type of virtue ethics that forms an integral part of the overall concept of hospice care, which cannot be treated separately from a holistic idea of care at the end of life. (shrink)

IntroductionMaking appropriate plans for the provision of hospice care is considered a perceived need in the Iranian health system. The current study aimed to develop a model for establishing hospice care delivery system for the adult patients with cancer.Materials and MethodsThis study is part of a larger study that has been done in four phases. This Health System Policy Research utilized a mixed qualitative-quantitative approach. At the first phase, a qualitative study was conducted which explained the (...) care needs and the requirements for establishing this system from the stakeholders’ perspective. The second phase aimed to examine the current situation of hospice care delivery in Iran and identify and determine the similarities and differences among them in the selected countries. At the third phase, the main areas of the model and the related indicators were extracted and prioritized by consulting with experts. Then the model was formulated. At the fourth phase, the proposed model was validated and finalized in terms of importance, scientific acceptability, and feasibility.ResultsBased on the developed model the first and the most important step in establishing the hospice care delivery system is laying the groundwork in the health system which requires focusing on policymaking. It is necessary to establish hospice centers and implement public awareness raising programs, train, and supply expert manpower, strengthen family physician and referral process, formulate clinical guidelines, encourage the private sector and NGOs.) to invest, develop end-of-life and hospice care service packages, and create quality care indicators. The proposed model had moderate feasibility.ConclusionThis model was developed based on the current Iranian healthcare structure and the needs of terminally ill cancer patients. It can be used as a model tailored to the current state of the health system and community in Iran. It is suggested to use this model as a pilot at the regional level. (shrink)

As the hospice movement continues to grow, caregivers are increasingly required to interact with dying patients for longer periods and in more intimate and more meaningful ways. Practical models of competent and compassionate communication and understanding need to be developed to accommodate the changing environment of the patient and caregiver and their relationship. We therefore: examine current death education trends in hospice care and education; and describe the need for a more expansive and transpersonal view, and ways (...) of fulfilling that need. The aware patient and the aware caregiver can learn much during the dying trajectory. We hope that someday the potential for expansiveness during the dying trajectory will be more commonly recognized and accommodated as a doorway to the transpersonal. (shrink)

This book identifies and explores ethical themes in the structure and delivery of hospice care in the United States. As the fastest growing sector in the US healthcare system, in which over forty percent of patients who die each year receive care in their final weeks of life, hospice care presents complex ethical opportunities and challenges for patients, families, clinicians, and administrators. Thirteen original chapters, written by seventeen hospice experts, offer guidance and analysis that (...) promotes best ethical practice for hospice organizations and professionals. The book addresses common questions and issues faced by those who work in hospice care, a dynamic movement that, in only 30 years, has shifted from an all-volunteer care alternative at the end of life to a highly regulated industry in which over half of providers are for-profit enterprises in a very competitive health care marketplace. The chapters show how the history and philosophy of hospice care can inform the values and composition of care teams, the operations of inpatient units, and access to care for pediatric and long-term care populations. Various chapters propose frameworks for deliberating organizational approaches to ethical questions in changing regulatory and legal environments, including a model for hospice ethics committees. The final chapter outlines an expanded model of hospice as a community based, interdisciplinary, and holistic form of palliative care emphasizing advance planning, case management, and a flexible spectrum of services. This model can serve as a centrepiece for a new quality of life and social support approach, not only to terminal care, but also long-term care during the later stages of chronic illness and fraility. (shrink)

Medicine often views hospice care as “giving up,” which results in a reduced quality of end-of-life care for many patients. By integrating a theology of the Sabbath with modern medicine, hospice becomes a sacred and valuable way to honor the dying patient in a comprehensive and holistic way. A theology of Sabbath as “Sacredness in Time” can provide the foundation for a shift in understanding hospice as a legitimate care plan, which shifts the focus (...) from controlling and manipulating space for the body, to rest and enjoyment of time for the whole person. First, I explore vitalism and its negative effects on the institution of hospice. Second, I address the main misconceptions and biases surrounding hospice in order to establish hospice as an appropriate option for the terminally ill. Finally, I argue for a shift away from sacredness in space (as seen in vitalism) to sacredness in time. (shrink)

Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end‐of‐life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end‐of‐life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients’ comfort and dignity were deemed most at stake and therefore commanded nurses’ primary (...) attention. This overarching commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end‐of‐life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients’ subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end‐of‐life care. (shrink)

Background: After over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society. Objective: To describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying. Design: In this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers. Participants and setting: Multi-disciplinary (...) class='Hi'>hospice palliative care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying. Ethical considerations: The research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms. Results: The 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients’ last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics. Conclusion: While being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider’s perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients’ end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying. (shrink)

Hospice care in the United States has undergone a remarkable transformation since it assumed its modern form in the late 1960s. It began as a movement driven by small organizations staffed with many volunteer providers focusing on comprehensive spiritual, palliative, and mental health services for a relatively small number of terminally ill patients, typically suffering from cancer. The idea behind hospice during its early days was that a terminally patient and his or her family made a decision (...) to focus on easing a patient’s pain and anxiety, making him or her more comfortable, rather than pursuing additional curative treatment. Because these objectives required a wide range of professional and non-professional skills, hospice care involved not only physicians and nurses, but clergy, social workers, volunteer caretakers, homemakers, and, of course, family members. The process of decision-making by the patient and his or her family was never uniform and never systematically studied. (shrink)

Many advances in public health and medical technology have contributed to the improved wellbeing and overall longevity of Americans. Such benefits, however, have been offset by a change in the nature and prolongation of the dying process. Daniel Callahan offers a challenge to caregivers in his observation of violent death by technological attenuation, and he sets an agenda to identify a more appropriate approach to the needs of the dying.Over the past quarter century, hospice has increasingly been used as (...) a resource for care at the end of life. However, according to 1995 estimates by the National Hospice Organization, hospice care presently accounts for only about 15 percent of the care of terminally ill patients in the United States. We will review issues of access and use of hospice services and examine the various institutional, professional, societal, and cultural barriers to hospice principles of care, and consider various options to promote optimal care at the end of life. (shrink)

This book review essay discusses The Crisis of US Hospice Care: Family and Freedom at the End of Life (2019), by Harold Braswell.

This article presents empirical data on the limited availability of hospice and palliative care to the 6 million people of the English-speaking Caribbean. Ten of the 13 nations therein responded to a survey and reported employing a total of 6 hospice or palliative specialists, and having a total of 15 related facilities. The evolving socioeconomic and cultural context in these nations bears on the availability of such care, and on the willingness to report, assess, and prioritize (...) pain, and to prescribe opiates for pain. Socioeconomics and culture also impinge on what medications and modalities of care are routinely available for pain or other conditions and can challenge professionalism, empathy, and responsiveness to patients’ unrelieved pain. Although all respondents report having a protocol for pain management, hospice, or end-of-life care, their annual medical use of opiates is well below the global mean. The International Narcotics Control Board , which monitors such use, encourages Caribbean and other low- and middle-income countries to increase their use of opiates to treat pain, and to overcome both unfounded fears of addiction and overly restrictive interpretation of related laws and regulations. Contextual considerations like those described here are important to the success of policies and capacity-building programs aiming to increase access to hospice and palliation, and perhaps to improving other aspects of health and healthcare. Exploring and responding to the realities of socioeconomic and cultural conditions will enhance public and policy dialogue and improve the design of interventions to increase access to palliative and hospice care. Improving access to palliative and hospice care in the Caribbean demonstrates beneficence and helps to fulfill human rights conventions. (shrink)

Questions on what it means to live and die well are raised and discussed in the hospice movement. A phenomenological lifeworld perspective may help professionals to be aware of meaningful and important dimensions in the lives of persons close to death. Lifeworld is not an abstract philosophical term, but rather the opposite. Lifeworld is about everyday, common life in all its aspects. In the writings of Cicely Saunders, known as the founder of the modern hospice movement, facets of (...) lifeworld are presented as important elements in caring for dying patients. Palliative care and palliative medicine today are, in many ways, replacing hospices. This represents not only a change in name, but also in the main focus. Hospice care was originally very much about providing support and comfort for, and interactions with the patients. Improved medical knowledge today means improved symptomatic palliation, but also time and resources spent in other ways than before. Observations from a Nordic hospice ward indicate that seriously ill and dying persons spend much time on their own. Different aspects of lifeworld and intersubjectivity in the dying persons’ room is presented and discussed. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and (...) has worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

Despite increasing interests and urgent needs for quality end-of-life care, there is no exact definition of what is the interval referred to as end of life or what end-of-life care is. The purpose of this article is to report our examination of terms related to end-of-life care and define end-of-life care from nursing ethics perspectives. Current terms related to end-of-life care, such as terminal care, hospice care, and palliative care, are based (...) on a medical model and are restrictive in terms of diagnosis and prognosis. Using codes of ethics for nurses as a framework, we attempt to identify people to whom nurses are responsible to provide end-of-life care and develop a definition of end-of-life care that is more inclusive and applicable to a broader range of people who would benefit from end-of-life care by nurses and other health-care providers. (shrink)

Perinatal palliative and hospice care (hereafter, perinatal hospice) is a novel approach to addressing a family’s varied needs following an adverse in utero diagnosis. Christian defenses of perinatal hospice tend to focus on its role as an ethical alternative to abortion. Although these analyses are important, they do not provide adequate grounds to characterize the wide range of goods realized through this compassionate form of care. This essay draws on an analysis of the Christian virtue (...) of humility to highlight the ways a Christian virtue-based defense of perinatal hospice can account for these goods. I argue that humility can play an important facilitating role in helping Christian physicians to meet the needs of families in profoundly difficult circumstances. (shrink)

As artist-in-residence at the Zen Hospice Project Guest House, Wendy MacNaughton experienced firsthand how difficult it is to know what to do when we're sharing final moments with a loved one. In this tenderly illustrated guide to saying goodbye, with a foreword by renowned physician and author BJ Miller, MacNaughton shows how to make sure those moments are meaningful. Using a framework of "the five things" taught to her by a professional caregiver, How to Say Goodbye provides a model (...) for having conversations of love, respect, and closure: with the words "I forgive you," "Please forgive me," "Thank you," "I love you," and "Goodbye," each oriented toward finding mutual peace and understanding when it matters most. How to Say Goodbye features MacNaughton's drawn-from-life artwork from both the Zen Hospice Project Guest House and her own aunt's bedside as she died, each paired with hospice caregivers' gentle advice on creating a positive sensory experience, acknowledging what you can't control, and sharing memories and gratitude. A poignant guide to embracing the present and deepening relationships during great vulnerability, How to Say Goodbye shows that just as there is no one right way to live a good life, there is no one right way to say goodbye. Whether confused, scared, or uncertain, this book is a starting point. (shrink)

This research explored the ethical issues that nurses reported in the process of elaboration and further disclosure after an initial diagnosis of a terminal illness had been given. One hundred and six hospice nurses in Norway and Denmark completed a questionnaire containing 45 items of forced-choice and open-ended questions. This questionnaire was tested and used in three countries prior to this study; for this research it was tested on Danish and Norwegian nurses. All respondents supported the ethics of ongoing (...) disclosure to terminally ill patients based on ethical principles embedded in their country’s Patients’ Rights Acts. Truth, as an intrinsic value, proved foundational to patient autonomy, the most frequent ethical principle these nurses reported to justify their ethical position on information disclosure to terminally ill people. Telling the truth about a diagnosis was not the end of ethics in hospice care, but rather the beginning because what occurs ethically in dealing with prognosis issues became central to these hospice nurses, the patients and their families. Coupled with truth-telling, compassionate interaction and care become extensions of patients’ rights. (shrink)

The primary purpose of this study is to understand if/how patients of hospice healthcare require ‘Spiritual’ or/and ‘Religious’ assistance and if its involvement in palliative care helps greatly. We have built a correlative of two scales and administrated them on the same sample, along with complete demographics questions to a group of people under palliative care and several people directly connected with patients, relatives- families. This methodological study is designed to assess the reliability and validity of two (...) scales simultaneously for the same terminally ill patients (TIP): Paloutzian and Ellison’s (1982) Spiritual Well-being Scale. The scale was administered to 49 individuals, of which 45 are patients and 4 family members caring for a terminally ill relative. Background: Coping is a multifactorial and individual process related to responding to stressful situations, such as being a caregiver of a person with health conditions or terminal illness [such as in hospice]. Spiritual [S] / religious [R] coping is an essential internal resource used by individuals enduring stressful situations or, in this particular case, confronting imminent death. Instruments: The 14-item Brief RCOPE is widely used to assess religious coping. The other instrument we have used for S/R assessment is the Spiritual Well-Being (SWB) Scale, a general measure of the subjective quality of life. Neither one is available in the Romanian version Ciocan Tudor-Cosmin (2023) developed following Romanian culture. He worked with Professor Ray Paloutzian - author of the latter scale - to translate and validate the use of the translated scales. Objective: To investigate the S/RWB among palliative care patients in Romania and to identify the correlates of Spiritual and Religious Well-Being. Secondary: To translate, adapt and validate both the 14-item Brief RCOPE and SWBS in Romanian for caregivers of palliative patients facing death. Method: The methodological guideline provided by Ray Paloutzian and Craig W. Ellison was used to examine the psychometric properties of SWBS, while the manual provided by Kenneth Pargament on his website helped us accommodate the Brief RCOPE to Romanian culture and understanding. Results: The linguistic and conceptual equivalence of the scales was determined. The internal consistency was acceptable (Cronbach’s a = 0.891 for SWBS and a = 0.798 for RCOPE). The Principal Axis Factor (PAF) analysis with varimax rotation identified two factors comprising 13 items, and one item was excluded from the scale (14/RCOPE). The faith subscale (SWBS) showed similar distributions. Christians engaged in religious activities reported higher SWB in the meaning and peace subscale than patients without religious attendance. In the multivariate analysis, religious Frequency (P < 0.001), and individual spiritual activities (P < 0.003) were significantly related to a greater SWB. Conclusion: The Romanian versions of the SWBS and Brief RCOPE are reliable and valid measures for assessing both the spiritual and religious coping of patients in hospice, their families, and their caregivers. Although faith practices may be beneficial to improve spiritual well-being among Orthodox Christians (the majority in Romania), further research is needed to determine what individual spiritual activities can be supported by Orthodox Christians positively engaged – since they are very skeptical about practices other than religious ones, introduced by the traditional Church. (shrink)

This contribution is a report of a two months' participant observation in a Dutch hospice. The goal of the observation was to gain an overview of moral decisions in a hospice in which euthanasia, a tolerated practice in the Netherlands, is not accepted as an option. In an introduction, the development of palliative care in the Netherlands will be briefly presented. Subsequently, various moral decisions that were taken during the participant observation are presented and analysed by means (...) of case reports. Attention is especially drawn to decisions that directly or indirectly relate to euthanasia. These moral decisions will be clarified in the light of the philosophy behind the concept of palliative care as it has evolved since the foundation of St Christopher's Hospice, London in 1967. (shrink)

Health care in France falls almost exclusively under theresponsibility of the Social Security department, which coversalmost all the expenditures related to health care,whether hospitalization or medication is concerned.For severe diseases or surgery the coverage is likelyto reach as much as 100%. The medical expendituresfor several severe diseases, such as cancer, myocardialinfarction, or neurodegenerative diseases are 100% coveredfor a period of time as long as three months. For some procedures, full coverage may be achieved by usinga subscription to private (...) health care insurance.Access to cover by the state has recently been openedto anyone living in France, after passage of a special law. There is still a lack of intensive care and hospice beds, given the rapidly increasing number of elderly who cannot be maintainedat home. There is a tendency to reduce the number ofbeds in private and public hospitals due to thegreat number of such institutions and the generalconcern that a low volume of procedures, associatedwith inexperienced health care professionals, is likelyto increase morbidity and mortality as well as publichealth care expenditure. Patients are still free tochoose doctors and hospitals (whether privateor public), provided that beds are available and thatspecific procedures can be carried out in thevicinity. So far no waiting list is needed, exceptfor specific procedures performed by a few specialists of high repute. Health care expenses are increasingcontinuously, which results in a very expensive systemin France. (shrink)

The problem of physician-assisted death, assisted suicide and active euthanasia, has been debated predominantly in the ethically familiar vocabulary of rights, duties, and consequences. Patient autonomy and the right to die with dignity vie with the duty of physicians to heal, but not to kill, and the specter of “the slippery slope” from voluntary euthanasia as a last resort for patients suffering from terminal illness to PAD on demand and mercy killing of “hopeless” incompetent patients. Another dimension of the debate (...) over PAD concerns the evaluative question of what constitutes a good death. At stake are Issues of character and virtue in the face of death and dying and their Implications for legitimizing the practice of PAD. Critics of PAD argue that “natural” death in the context of comfort care, as provided by hospice programs, is the good death. In contrast, PAD amounts to an easy way out, an evasion of the ultimate human challenge and task of dying. Because hospice care is clearly preferable to PAD, the former should be encouraged and the latter remain prohibited. (shrink)

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing (...) differences and similarities of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Design: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia. (shrink)

This is a follow-up to the practical research on hospice healthcare patients that proved they need either ‘Spiritual’ or/and ‘Religious’ assistance and that these needs are basic, natural, and almost standard. Since that research with direct involvement in palliative care greatly helps the multidisciplinary team develop an improved intervention plan, I thought additional explanations are necessary. In this regard, I have written this article to further interpret my observations on palliative care over the last couple of years. (...) To conclude most straightforwardly, the research draws a demarcated line between how people in ‘total suffering’ relate to Spiritual vs. Religious assistance as these two ways are very similar on the surface, but when engaged, they start building distinct, self-sustaining paths. Why is that, and how can each assist hospice - this is the target of the current text. (shrink)

Clear guidelines addressing the ethically appropriate use of anti-infectives in the setting of hospice care do not exist. There is lack of understanding about key treatment decisions related to infection treatment for patients who are eligible for hospice care. Ethical concerns about anti-infective use at the end of life include: (1) delaying transition to hospice, (2) prolonging a dying process, (3) prescribing regimens incongruent with a short life expectancy and goals of care, (4) increasing (...) the reservoir of potential resistant pathogens, (5) placing unreasonable costs on a capitated hospice system. Although anti-infectives are thought to be relatively safe, they can place a burden on patients and be inconsistent to particular care plans. The current complex, and at times fragmented, medical care often fails to address these issues in decision-making. In many ways, the ethics governing the end of life decisions related to dialysis, hydration/nutrition, and hypercalcemia parallel those of anti-infectives. In this article we articulate important elements in ethical decision-making in the application of anti-infectives for patients who are eligible for hospice care, and we point to the need for prospective studies to help refine particular guidelines in these cases. (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)

In this book the relevance of language, perception and context are highlighted by discussing issues of end-of-life care, prenatal diagnosis, allocation problems as well as ethical conflicts in clinical practice.