This paper explores the concept of the completed life outlined in recent writing in the Netherlands on euthanasia and assisted suicide and its implications for ageing studies. Central to this theme is the basic right of people to self-determine the length of their later life, linked with the subsidiary right to assistance in achieving such self-determination. Although the notion of weariness with life has a long history, the recent advocacy of a self-limited life seems shaped by the new social movements presaged upon individual rights together with what might be called a distinctly third-age habitus, giving centre stage to autonomy over the nature and extent of a desired later life, including choice over the manner and timing of a person's ending. In exploring this concept, consideration is given to the notion of a ‘right to die’, ‘rational suicide’ and the inclusion of death as a lifestyle choice. While reservations are noted over the unequivocal good attached to such self-determination, including the limits to freedom imposed by the duty to avoid hurt to society, the article concludes by seeing the notion of a completed life as a challenge to traditional ideas about later life.
COVID-19 has truly affected most of the world over the past many months, perhaps more than any other event in recent history. In the wake of this pandemic are patients, family members, and various types of care providers, all of whom share different levels of moral distress. Moral conflict occurs in disputes when individuals or groups have differences over, or are unable to translate to each other, deeply held beliefs, knowledge, and values. Such conflicts can seriously affect healthcare providers and cause distress during disastrous situations such as pandemics when medical and human resources are stretched to the point of exhaustion. In the current pandemic, most hospitals and healthcare institutions in the United States have not allowed visitors to come to the hospitals to see their family or loved ones, even when the patient is dying. The moral conflict and moral distress (being constrained from doing what you think is right) among care providers when they see their patients dying alone can be unbearable and lead to ongoing grief and sadness. This paper will explore the concepts of moral distress and conflict among hospital staff and how a system-wide provider wellness programme can make a difference in healing and health.
Over time, end of life care has been heavily influenced by the systems of religion, ethics and spirituality. The Sikh religion was started by Guru Nanak Dev Ji in 1469. It has a unique philosophical understanding of life, death and God which can be relevant to commonly encountered clinical scenarios. Concepts such as ‘Ik-Oankar’, Hukam (God’s will), ego and karma all influence how practising Sikhs respond to situations in everyday life. Understanding the spiritual underpinnings of the Sikh religion is therefore important for clinicians caring for this group of patients. This article will explore the fundamental concepts of the Sikh religion and how these apply to common scenarios encountered within palliative care.
Le concept de thanatose fait du déni de l’angoisse de mort le primum movens de certains troubles cognitifs dans les démences des personnes âgées. Il met ainsi l’accent sur leur origine langagière et donc intersubjective. Il voit dans l’exclusivité accordée aujourd’hui à leur origine organique une dérive conceptuelle liée à ce déni. Son utilisation en synergie avec le modèle anatomoclinique met fin à cette exclusivité et lève le déni. Elle permet de distinguer parmi ces troubles ceux qui définitivement inintelligibles sont effectivement d’origine organique et ceux qui s’avérant finalement intelligibles sont liés à l’âgisme généré lui aussi par l’angoisse de mort. Admettre la nécessité de les disjoindre est un préalable indispensable à l’amélioration du pronostic de ces démences.
Judaism, one of the world's oldest religions, claims an estimated 14.3 million members worldwide. There is great diversity in terms of identity, practice, and belief among people who identify as Jewish. As of 2017, 40% of the global Jewish community resided in the United States, making it essential for palliative care clinicians to understand religious and cultural issues related to their serious illness care. In this article, we will discuss 10 important concepts relevant to the inpatient care, advance care planning, and bereavement needs of Jewish patients and families.
Palliative care is provided at a certain timepoint, both in a person's life and in a societal context. What is considered to be a good death can therefore vary over time depending on prevailing social values and norms, and the person's own view and interpretation of life. This means that there are many interpretations of what a good death can actually mean for an individual. On a more general level, research in palliative care shows that individuals have basic common needs, for example physical, mental, social and spiritual well-being. Therefore, in today's pluralistic Western society, it becomes important that palliative care is person centred to enable individuals to receive, as far as can be achieved, care that promotes as good a life as possible based on the person's own needs and preferences, and in accordance with evidence and current laws. For many years a research group, consisting nurse researchers together with nurses working in palliative care, has developed a model for person-centred palliative care, the 6S-model. The model's central concept is Self-image, where the starting point is the patient as a person and their own experience of the situation. The other concepts: Self-determination, Symptom relief, Social relationships, Synthesis and Strategies are all related to the patient's self-image, and often to each other. The model's development, value base and starting assumptions are reported here, as are examples of how the model is applied in palliative care in Sweden. The model has been, and still is, constantly evolving in a collaboration between researchers and clinically active nurses, and in recent years also with patients and close relatives.
Sedation in palliative care is frequently but controversially discussed. Heterogeneous definitions and conceptual confusion have been cited as contributing to different problems 1) relevant to empirical research, for example, inconsistent data about practice, the ‘data problem’, and 2) relevant for an ethically legitimate characterisation of the practice, the ‘problem of ethical pre-emption’. However, little is known about how exactly definitions differ, how they cause confusion and how this can be overcome.
BACKGROUND: A sense of place (SOP) is defined as the emotional bonds, values, meaning, and symbols attached to a place.
AIMS: To assess SOP of patients with cancer during end-of-life care at home (home-hospice service) versus at a hospital in relation to place of care, social support, and emotional distress.
METHODS: Participants were 150, stage IV, cancer patients with a life expectancy of less than 6 months, as defined by oncological staff, who were not receiving any life-prolonging care. Seventy-five patients received care at home (home-hospice), and the other 75 received care at the oncology department at the hospital, by palliative unit staff. Participants completed the Brief Symptom Inventory anxiety and depression subscales, questionnaires on perceived support and both questionnaires on home SOP and hospital SOP.
RESULTS: Mean scores of emotional distress were similar for patients in home-hospice and at the hospital. Home SOP among individuals receiving care at home was high, and hospital SOP was high among hospitalized individuals. The structural equation model had good fit indexes, showing that each of the SOP variables mediated the association between place of care and emotional distress. Perceived support was associated with lower distress only in the hospital setting.
CONCLUSIONS: The SOP concept is relevant to understanding emotional distress in relation to place of care at end of life. Strengthening SOP in relation to place of care should be considered. As newly introduced concept regarding place of care at the end of life, SOP warrants further research.
OBJECTIVE: In 2015, a Chaplaincy Research Consortium generated a model of human spirituality in the palliative care context to further chaplaincy research. This article investigates the clinical fit of (a) the model's fundamental premise of universal human spirituality and (b) its 4 proposed stage descriptors (Discovery, Dialogue, Struggle, and Arrival).
METHOD: First, we collected qualitative data from an interdisciplinary palliative care focus group. Participants (n = 5) shared responses to the statement "the human spirit has essential commonalities across [ … ] groups and [ … ] attributes." Participants also shared vignettes of spiritual care, and 48 vignettes illustrating patients' spiritual journeys were subsequently taken from the transcript of that group. Second, we invited different mixed discipline palliative care professionals (n = 9) to individually card sort these vignettes to the model's 4 stage descriptors; we conducted pattern analysis on the results. We then administered a third step, convening six physicians to complete the card sort again, this time allowing designation of cards to one or two of the 4 stage descriptors.
RESULTS: Focus group participants were supportive of the model's all-encompassing definition of spirituality. The concept of "connectedness" was a shared focus for all participants, connectedness and spirituality appearing almost synonymous. Pattern analysis of assigned 48 vignettes to the 4 stages showed stronger consensus around Discovery and Arrival than Struggle and Dialogue. Results of the additional card sort suggested Struggle and Dialogue involve oscillation and are harder to think of as a steady state as distinct from processes associated with Discovery or Arrival.
SIGNIFICANCE OF RESULTS: "Connectedness" is a productive concept for modeling human spiritual experience near the end of life. As one healthcare professional said: "this connectedness piece is [ … ] what I always look for … " Although further work is needed to understand struggle and dialogue elements in peoples' spiritual journeys, discovery and arrival shared consensus among participants.
The concept of medical futility as an applied ethical framework has seen a rise and fall in its popularity over the last 30 years. It is a term used in relation to the assessment of a patient's health condition that is deemed untreatable, irreversible, and unresolvable. In four recent cases, Gard, Evans, Haastrup, and Raqeeb, the concept has been brought to the fore once again. These cases highlight a mounting tension between clinicians and families. Parental desires to see their child's treatment continued, while understandable, should not dominate treatment planning. This article analyses judicial interpretation of the factors which determine an assessment of futility and in doing so, argues that the role of medical futility in judicial decisions of this kind is gaining prominence and will continue to do so as scientific advancement blurs the limits of medicine even further.
PURPOSE: Monitoring and improving the quality of palliative and end-of-life cancer care remain pressing needs in the United States. Among existing measures that assess the quality of palliative and end-of-life care, many operationalize similar concepts. We identified existing palliative care process measures and synthesized these measures to aid stakeholder prioritization that will facilitate health system implementation in patients with advanced cancer.
METHODS: We reviewed MEDLINE/PubMed-indexed articles for process quality measures related to palliative and end-of-life care for patients with advanced cancer, supplemented by expert input. Measures were inductively grouped into "measure concepts" and higher-level groups.
RESULTS: Literature review identified 226 unique measures from 23 measure sources, which we grouped into 64 measure concepts within 12 groups. Groups were advance care planning (11 measure concepts), pain (7), dyspnea (9), palliative care-specific issues (6), other specific symptoms (17), comprehensive assessment (2), symptom assessment (1), hospice/palliative care referral (1), spiritual care (2), mental health (5), information provision (2), and culturally appropriate care (1).
CONCLUSION: Measure concepts covered the spectrum of care from acute symptom management to advance care planning and psychosocial needs, with variability in the number of measure concepts per group. This taxonomy of process quality measure concepts can be used by health systems seeking stakeholder input to prioritize targets for improving palliative and end-of-life care quality in patients with advanced cancer.
Despite the increasing need for neonatal palliative care, it is not adequately implemented in practice. This analysis aimed to clarify the dimension of the neonatal palliative care concept to increase understanding of the concept to give more insight into clinical practice. Using dimensional analysis methodology, 46 English language papers from 2001-2018 were analyzed. The coding of the literature for the perspective, context, conditions, process, and consequences of the concept was completed. Five dimensions informed the conceptualization of this concept and interrelationships among their themes/sub-themes were presented in the matrix named, "improving quality of life and death". Within the family-centered care perspective and under different conditions/contexts through the processes of neonate's comfort and providing holistic care, the consequences of this care were improving quality of life/a good death. Family-centered care was the fundamental dimension and essential to achieving the consequences. The other dimensions of context, conditions, and processes were also affected by the family's needs, preferences, culture, and expectations. This analysis reinforces that neonatal palliative care is a multidimensional concept. To provide the standard of neonatal palliative care an integrated plan to get together many stakeholders including community, parents, clinical staff, policymakers, insurance authorities, health care systems, and education system is required. All NICUs should have neonatal palliative care-trained nurses and protocols with a family-centered care approach to focus on the quality of life of neonates with life-threatening conditions from diagnosis of disease to death. Regular training and educational courses on neonatal palliative care and family-centered care principles can make nurses more sensitive to their advocacy role.
Objective: Seriously ill adults with multiple chronic conditions (MCC) who receive palliative care may benefit from improved symptom burden, health care utilization and cost, caregiver stress, and quality of life. To guide research involving serious illness and MCC, palliative care can be integrated into a conceptual model to develop future research studies to improve care strategies and outcomes in this population.
Methods: The adapted conceptual model was developed based on a thorough review of the literature, in which current evidence and conceptual models related to serious illness, MCC, and palliative care were appraised. Factors contributing to patients’ needs, services received, and service-related variables were identified. Relevant patient outcomes and evidence gaps are also highlighted.
Results: Fifty-eight articles were synthesized to inform the development of an adapted conceptual model including serious illness, MCC, and palliative care. Concepts were organized into 4 main conceptual groups, including Factors Affecting Needs (sociodemographic and social determinants of health), Factors Affecting Services Received (health system; research, evidence base, dissemination, and health policy; community resources), Service-Related Variables (patient visits, service mix, quality of care, patient information, experience), and Outcomes (symptom burden, quality of life, function, advance care planning, goal-concordant care, utilization, cost, death, site of death, satisfaction).
Discussion: The adapted conceptual model integrates palliative care with serious illness and multiple chronic conditions. The model is intended to guide the development of research studies involving seriously ill adults with MCC and aid researchers in addressing relevant evidence gaps.
Fifteen years ago, Ruth Macklin shook the medical community with her claim in the BMJ that dignity is a useless concept. Her essay provoked a storm of reactions. What have we learned from the debate? In this article I analyse the responses to her essay and the following debate to investigate whether she was right that “[d]ignity is a useless concept in medical ethics and can be eliminated without any loss of content.” While some of the commentaries misconstrued her claim and argue against strawmen, others forcefully maintained that the concept of dignity has functions beyond “respect for persons and their autonomy.” One important point that came out of the debate is that dignity is a generic concept that covers more ground than “respect for persons or their autonomy.” In particular, dignity seems to have a wide range of protective functions as well as having reciprocal, relational, and social aspects. Dignity appears more attributional and norm-formative than respect for persons and autonomy. While the claim that dignity is unclear, vague, and can be used sloganistically seems highly relevant, it is argued that this vagueness fulfils important functions in ethics. Moreover, dismissing dignity because of its lack of clarity has implications for “respect for persons” and “autonomy,” which are also used vaguely and sloganistically. No doubt medical ethics should use as a clear concept as the context requires. Nonetheless, dignity still seems to be a widely used generic concept in ethical debates and doing as much ethical work as “respect for persons” or “respect for autonomy.” Therefore, the death of dignity seems to be greatly exaggerated.
Alongside increasing rates of dementia diagnoses worldwide, efforts to seek alternative end-of-life options also increase. While the concept of assisted dying remains controversial, the discussion around its provision for people with dementia raises even more sensitivity. In this study, we explored how the practice of assisted dying for people with dementia is conceptualized and understood using the shared narratives of online contributors. An observational netnography over 20 months was carried out within five open Facebook communities. Thematic analysis was conducted on 1,007 online comments about assisted dying and dementia. Results reflected four central themes and five subthemes: understanding dementia; understanding assisted dying laws; caregivers’ feelings; and moral/personal dilemmas. Findings reveal that the majority of communities’ contributors fear developing dementia. They support the provision of advance euthanasia directives—written by competent patients—to prevent unnecessary suffering, and protect patients’ wishes and freedom of choice when decision-making competency is lost.
Background: Family caregivers of advanced cancer patients are at risk for developing mental disorders. Despite this risk, the majority seem to adapt well, and throughout the caregiving period, their trajectory is characterised by healthy functioning. However, GPs struggle with making timely assessments of caregivers at risk for mental dysfunction, since they often fail to seek medical help for themselves and the appropriate research about resilience in cancer caregivers is scarce. Moreover, research is hampered by the lack of a universal definition or theoretical framework.
Aim: To propose a comprehensive definition and framework for further research in family caregiving for advanced cancer patients.
Method: Inspired by the hermeneutic methodology, reviews and concept analyses on resilience following a potentially traumatic event were searched and analysed. Conforming to the hermeneutic methodology, article collection from PubMed, EMBASE, CINAHL, and PsycInfo was followed by analysis and was stopped when saturation was reached. Elements consistently arising from the definitions of resilience were listed and the theoretical frameworks were compared.
Results: The APA definition: ‘resilience is the process of adapting well in the face of adversity, trauma or threats’ and Bonanno’s framework ‘temporal elements of resilience’ are proposed.
Conclusion: There is a need for studies on resilience in caregivers of advanced cancer patients. Resilience is context-dependent, hence, study results cannot be transferred as such from one clinical situation to another. Furthermore, conceptual ambiguities hinder the interpretation and comparison of study results. For further research on resilience in caregivers of advanced cancer patients, we suggest the APA definition of resilience and Bonanno’s framework.
Palliative care improves communication, symptom control, and support for patients and their families, resulting in an improved quality of life and survival outcomes. The concept of palliative care has been evolving over time; traditionally limited to an oncology population, palliative care is now recommended for all patients living with serious or life-limiting illness. Palliative care can be used to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering and can be delivered in any care setting to optimize quality of life of patients, families, and care providers.
In 2017 and 2018, the English courts were asked to decide whether continued life-sustaining treatment was in the best interests of three infants: Charlie Gard, Alfie Evans and Isaiah Haastrup. Each infant had sustained catastrophic, irrecoverable brain damage. Dignity played an important role in the best interests assessments reached by the Family division of the High Court in each case. Multiple conceptions of dignity circulate, with potentially conflicting implications for infants such as Charlie, Alfie and Isaiah. The judgements do not explicate the conceptions of dignity upon which they rely. This article reconstructs the conceptions of dignity invoked in these judgements, finding that a broadly Kantian, agential conception dominates, under which human dignity requires the prospect of agency. This conception is situated within the broader body of thought on dignity, and the potentially adverse implications of applying the reconstructed conception in best interests assessments for infants with severely restricted consciousness are discussed.
BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s.
PURPOSE: The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential concepts as a way of moving NPC forward by having a consistent approach.
METHODS: Following a review of the NPC literature, a thematic analysis as a method for identifying, analyzing, and interpreting patterns of meaning in the definitions ("themes") within the literature was undertaken.
FINDINGS: The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management.
IMPLICATIONS FOR RESEARCH: At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a "good death." The extensive elements presented in this article are considered essential to a comprehensive and conceptual definition of NPC proposed here.