End-of-life conversations about death and dying from volunteer perspectives: A qualitative study.

OBJECTIVES: Although often unrecognized, volunteers fulfill many essential roles in hospices and other end-of-life care settings. Volunteers complement the actions of professionals in fulfilling many extra care needs, such as delivering newspapers and tidying bedsides. We explored end-of-life conversations about death and dying between hospice volunteers and terminally ill people, with a particular emphasis on any expressed desire to die. Our 2 research questions were as follows: (1) What is the nature of end-of-life conversations between hospice patients and hospice volunteers? and (2) How do hospice volunteers experience conversations about death and dying with patients who are at the end-of-life? METHODS: We conducted semi-structured interviews using an interpretive phenomenological analysis. We recruited hospice volunteers from 4 hospices in Calgary, Edmonton, and Red Deer; 3 larger cities in the province of Alberta, Canada. RESULTS: We interviewed 12 participants to saturation. Four themes emerged: (1) trusting conversations about death and dying in the context of a safe place; (2) normalcy of conversations about death and dying; (3) building meaningful relationships; and (4) end-of-life conversations as a transformative experience. Our results emphasize the importance of preparing volunteers for conversations about death and dying, including the desire to die. SIGNIFICANCE OF RESULTS: The safe environment of the hospice, the commitment to patient confidentiality, and the ability of volunteers to meet the basic and emotional needs of dying people or simply just be present without having formal care duties that need to be completed contribute to volunteers being able to participate in timely and needed conversations about death and dying, including the desire to die. In turn, hospice experiences and end-of-life conversations provide a transformative experience for volunteers.

Definition and validation of the nursing diagnosis label "wish to die": a research protocol.

BACKGROUND: Euthanasia has been incorporated into the health services of seven countries. The legalisation of these practices has important repercussions for the competences of nurses, and it raises questions about their role. When a patient with advanced disease expresses a wish to die, what is expected of nurses? What are the needs of these patients, and what kind of care plan do they require? What level of autonomy might nurses have when caring for these patients? The degree of autonomy that nurses might or should have when it comes to addressing such a wish and caring for these patients has yet to be defined. Recognising the wish to die as a nursing diagnosis would be an important step towards ensuring that these patients receive adequate nursing care. This study-protocol aims to define and validate the nursing diagnosis wish to die in patients with advanced disease, establishing its defining characteristics and related factors; to define nursing-specific interventions for this new diagnosis. METHODS: A prospective three-phase study will be carried out. Phase-A) Foundational knowledge: an umbrella review of systematic reviews will be conducted; Phase-B) Definition and validation of the diagnostic nomenclature, defining characteristics and related factors by means of an expert panel, a Delphi study and application of Fehring's diagnostic content validation model; Phase-C) Definition of nursing-specific interventions for the new diagnosis. At least 200 academic and clinical nurses with expertise in the field of palliative care or primary health care will be recruited as participants across the three phases. DISCUSSION: The definition of the wish to die as a nursing diagnosis would promote greater recognition and autonomy for nurses in the care of patients who express such a wish, providing an opportunity to alleviate underlying suffering through nursing-specific interventions and drawing attention to the needs of patients with advanced disease. The new diagnosis would be an addition to nursing science and would provide a framework for providing care to people with advanced disease who express such a wish. Nurses would gain professional autonomy about identifying, exploring and responding clinically to such a wish.

Development of a Guide to Multidimensional Needs Assessment in the Palliative Care Initial Encounter (MAP).

CONTEXT: Ensuring patient-centered palliative care requires a comprehensive assessment of needs beginning in the initial encounter. However, there is no generally accepted guide for carrying out this multidimensional needs assessment as a first step in palliative intervention. OBJECTIVES: To develop an expert panel-endorsed interview guide that would enable proactive and systematic Multidimensional needs Assessment in the Palliative care initial encounter (MAP). METHODS: A preliminary version of the MAP guide was drafted based on a published literature review, published semistructured interviews with 20 patients, 20 family carers, and 20 palliative care professionals, and a nominal group process with palliative care professionals and a representative of the national patient's association. Consensus regarding its content was obtained through a modified Delphi process involving a panel of palliative care physicians from across Spain. RESULTS: The published systematic literature review and qualitative study resulted in the identification of 55 needs, which were sorted and grouped by the nominal group. Following the Delphi process, the list of needs was reduced to 47, linked to six domains: Clinical history and medical conditions (n = 8), Physical symptoms (n = 17), Functional and cognitive status (n = 4), Psycho-emotional symptoms (n = 5), Social issues (n = 8), and Spiritual and existential concerns (n = 5). CONCLUSION: MAP is an expert panel-endorsed semi-structured clinical interview guide for the comprehensive, systematic, and proactive initial assessment to efficiently assess multiple domains while adjusting to the needs of each patient. A future study will assess the feasibility of using the MAP guide within the timeframe of the palliative care initial encounter.

What makes the palliative care initial encounter meaningful? A descriptive study with patients with cancer, family carers and palliative care professionals.

BACKGROUND: The palliative care initial encounter can have a positive impact on the quality of life of patients and family carers if it proves to be a meaningful experience. A better understanding of what makes the encounter meaningful would reinforce the provision of person-centred, quality palliative care. AIM: To explore the expectations that patients with cancer, family carers and palliative care professionals have of this initial encounter. DESIGN: Qualitative descriptive study with content analysis of transcripts from 60 semi-structured interviews. SETTING/PARTICIPANTS: Twenty patients with cancer, 20 family carers and 20 palliative care professionals from 10 institutions across Spain. RESULTS: Four themes were developed from the analysis of interviews: (1) the initial encounter as an opportunity to understand what palliative care entails; (2) individualised care; (3) professional commitment to the patient and family carers: present and future; and (4) acknowledgement. CONCLUSION: The initial encounter becomes meaningful when it facilitates a shared understanding of what palliative care entails and acknowledgement of the needs and/or roles of patients with cancer, family carers and professionals. Further studies are required to explore how a perception of acknowledgement may best be fostered in the initial encounter.

Experiences of Isolation among Patients Hospitalized during an Infectious Disease Outbreak: A Systematic Review and Meta-Ethnography.

Hospital isolation is common for people during infectious disease outbreaks. Anxiety, stress, depression and other psychosocial outcomes have been reported due to these measures. However, there is scarce evidence about the experience of being isolated and about best practices for empathic clinical care in these circumstances. The aim of this study was to explore the experience of isolation on patients hospitalized during an infectious disease outbreak. A systematic review and meta-ethnography was carried out. A search strategy was applied to the PubMed, CINAHL, Web of Science, and PsycINFO databases on April 14, 2021 and again May 2, 2022. Data synthesis was conducted using Noblit and Hare's method of qualitative thematic synthesis. Twenty reports were included in this review: 16 qualitative, two mixed-methods (only the qualitative part was analyzed), plus 2 personal view pieces. They described the experiences of a total of 337 people hospitalized and isolated with an infectious disease. Following analysis and coding of data, four themes emerged: 1) Feelings triggered by isolation; 2) Coping strategies; 3) Connection/disconnection; 4) Factors that influence the experience of isolation. Despite a sensitive search strategy, limited studies represent patient experiences using qualitative methods. The experience of isolation among patients hospitalized during an outbreak is characterized by fear, perceived stigma, and a sense of disconnection from others and the outside world due to a lack of information. Fostering a person-centered care model could help hospitalized patients develop adaptive mechanisms that minimize the impact of isolation.

Control in patients with advanced cancer: an interpretative phenomenological study.

BACKGROUND: In the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about the meaning of control from the patients' perspectives. Thus, the aim of this study was to explore how patients with advanced cancer understand control, in terms of underlying beliefs, attitudes, and expectations consistent with self-efficacy, in different dimensions of their life, their illness, and their healthcare. METHODS: We conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were recruited. The inclusion criteria were a) ≥ 18 years old; b) fluency in Spanish or Catalan; c) outpatients diagnosed with advanced cancer; d) Eastern Cooperative Oncology Group (ECOG) between 0 and 3; e) judged by their physician or nurse to be emotionally stable; f) considered to have control over their illness and circumstances according to their responsible physician; and g) signed informed consent. RESULTS: We interviewed eight participants (ages ranged from 29 to 70 years, six were female). Two themes were identified: 1) factors that influence the perception of control, with subthemes: uncertainty about future suffering, character traits underlying a need for control; sense of lack of care as a source of loss of control; and 2) perceiving control over an uncontrollable illness, explained by perceived control over subjective wellbeing and adjusting the focus of control. The data allowed us to identify strategies that promote a sense of control in these patients. CONCLUSIONS: The illness, according to the participants, was experienced as series of losses. However, attention was often focused on areas where they continued to have control. These findings selectively reflect experiences of those who see themselves able to effect outcomes in life, suggesting future research should address how both family members and healthcare professionals can help to empower all patients.

Autonomy and control in the wish to die in terminally ill patients: A systematic integrative review.

BACKGROUND/OBJECTIVE: Personal autonomy and control are major concepts for people with life-limiting conditions. Patients who express a wish to die (WTD) are often thought of wanting it because of loss of autonomy or control. The research conducted so far has not focused on personal beliefs and perspectives; and little is known about patients' understanding of autonomy and control in this context. The aim of this review was to analyze what role autonomy and control may play in relation to the WTD expressed by people with life-limiting conditions. METHODS: A systematic integrative review was conducted. The search strategy used MeSH terms in combination with free-text searching of the EBSCO Discovery Service (which provides access to multiple academic library literature databases, including PubMed and CINAHL), as well as the large PsycINFO, Scopus, and Web of Science library literature databases from their inception until February 2019. The search was updated to January 2021. RESULTS: After the screening process, 85 full texts were included for the final analysis. Twenty-seven studies, recording the experiences of 1,824 participants, were identified. The studies were conducted in Australia (n = 5), Canada (n = 5), USA (n = 5), The Netherlands (n = 3), Spain (n = 2), Sweden (n = 2), Switzerland (n = 2), Finland (n = 1), Germany (n = 1), and the UK (n = 1). Three themes were identified: (1) the presence of autonomy for the WTD, (2) the different ways in which autonomy is conceptualized, and (3) the socio-cultural context of research participants. SIGNIFICANCE OF RESULTS: Despite the importance given to the concept of autonomy in the WTD discourse, only a few empirical studies have focused on personal interests. Comprehending the context is crucial because personal understandings of autonomy are shaped by socio-cultural-ethical backgrounds and these impact personal WTD attitudes.

Older Age: A Protective Factor Against Perceived Dignity-Related Distress in Patients With Advanced Cancer?

CONTEXT: Most older adults will face threats to loss of health and social support, which can affect their perceived dignity. Although problems with perceived dignity increase in the context of cancer, the specific experience for those older compared with younger patients with advanced cancer has not been described despite its contributions to the wish to hasten death (WTHD). OBJECTIVES: To understand the influence of age group to the perception of dignity, considering changes in quality of life and the WTHD in patients with advanced cancer. METHODS: The Patient Dignity Inventory was administered to 194 patients with advanced cancer. The data were analyzed by separating the sample into age groups younger than 65 years (N = 106) or 65 years and older (N = 88). Linear regression models were adjusted with the explanatory variables of WTHD, quality of life, as well as functional status, physical dependence, depression, anxiety, and sociodemographic variables. RESULTS: Older patients showed a 2.6% decrease in the total scores of perceived dignity-related distress compared to younger patients. CONCLUSION: Older age could be a protective factor against the perception of loss of dignity in patients with advanced cancer, a more positive perspective of the aging experience.

Experiencing the Sublime in a Palliative Care Unit.

All of us, without exception, must sooner or later face the inevitability of death. However, as comparative studies of different cultures show, the idea that death is something to be feared, denied or hidden away is far from universal. Undeniably, many people do not have a 'good' death, and those with a terminal illness experience suffering, pain, and even despair, a sense of dignity lost. But is this the onlypossible narrative? In 2014, and again in 2019, I had the opportunity to spend time as an observer in a palliative care unit. I hold a BA, a PhD in Humanities, and since 2014 my research has focused on end of life care. Even though I work in a clinical lab, the day to day activity in a clinical setting is a distant reality. However, at no other point in my life have I experienced a stronger sense of 'reality'-the reality of life, of death, of what it means to love someone, of one's own life entwined with that of another person. Witnessing the end-of-life can be a profound experience-what Kant would call the sublime-and it can unsettle, in a good way, anyone who comes to encounter it while unaware of its potential. My aim in this paper is to explain why I believe that the end of life in a palliative care context is an opportunity to experience the sublime and an authentic transformative experience. Finally, I describe four short stories to better understand what the experience of the sublime might be in the context of clinical practice.

A Research Literature Review to Determine How Bereavement Programs Are Evaluated.

A review of all 44 research reports published between 2000 and 2018 on bereavement program evaluation was undertaken to identify evaluation methods and assess their apparent efficacy. Bereavement program evaluations varied considerably, with multiple data collection methods per study common (61.4%) over single methods (38.6%). Among these evaluation methods, a self-devised questionnaire was most often used (59.1%), followed by qualitative interviewing (36.4%), and the use of 1 or more of 35 data collection instruments such as grief inventories or depression scales (40.9%). Evaluative data were usually only collected once (77.3%), typically around program completion. Formal bereavement program evaluation appears to be ad hoc and sporadic, and potentially unlikely to provide the type and quality of information needed to retain, improve, expand, or abandon programs. Evaluation method developments including evaluation standards are needed to ensure recipients and others benefit as expected from bereavement programs.

The potential impact of bereavement grief on workers, work, careers, and the workplace.

Bereavement grief is typically very painful and often highly consequential. People who are working could be significantly impacted by the death of someone they care about. A qualitative study sought an understanding of the lived experience of bereavement on the mourner's ability to work and their work-related experiences following the death of a loved one. Three themes emerged: (a) grief is universal but individually impactful, (b) accommodation is needed to assist the return to work and to regain work abilities, and (c) there are many impediments to working again. These themes highlight the potential for bereavement grief to substantially effect mourners and thus their work, careers, and the workplace. Older workers could be particularly disadvantaged because of workplace ageism. Societal and other changes appear to be needed for the health and wellbeing of mourning workers, and to address related work and bereavement issues. Bereavement grief is highly relevant to the social work profession, given its involvement in providing information, developing supportive services, and making referrals.

Health-related quality of life in patients with advanced cancer who express a wish to hasten death: A comparative study.

BACKGROUND: Some evidence suggests the wish to hasten death is related to poor health-related quality of life. Deficits in perceived dignity and self-efficacy are risk factors for wish to hasten death that also impact health-related quality of life. AIM: To compare perceived health-related quality of life, dignity and self-efficacy in patients with advanced cancer who either do (case group) or do not (control group) express a wish to hasten death. Cases and controls were matched on sociodemographic and functional characteristics. DESIGN: A comparative cross-sectional study. PARTICIPANTS: A total of 153 adult patients with advanced cancer were assessed for wish to hasten death using the Desire for Death Rating Scale. Scores ⩾1 indicate some degree of wish to hasten death (case group, n = 51), and score = 0 implies no wish to hasten death (control group, n = 102). Assessments included health-related quality of life using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 15-Item Palliative Questionnaire, perceived loss of dignity using the Patient Dignity Inventory and self-efficacy using the General Self-Efficacy Scale. RESULTS: Patients with a wish to hasten death had worse emotional functioning (p < 0.001), greater perceived loss of dignity (p < 0.001) and lower self-efficacy (p = 0.001). There was no difference in most physical symptoms. Perceived overall health-related quality of life was significantly worse for those with a clinically relevant wish to hasten death (p = 0.023) and marginally worse for the case group than the control group (p = 0.052). CONCLUSION: Patients with wish to hasten death showed lower perceived dignity, self-efficacy and emotional quality of life than patients without wish to hasten death without necessarily perceiving worse physical symptoms.

Proactive and systematic multidimensional needs assessment in patients with advanced cancer approaching palliative care: a study protocol.

INTRODUCTION: The benefits of palliative care rely on how healthcare professionals assess patients' needs in the initial encounter/s; crucial to the design of a personalised therapeutic plan. However, there is currently no evidence-based guideline to perform this needs assessment. We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. METHODS AND ANALYSIS: To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP's acceptability, participation, practicality, adaptation and implementation. A nested qualitative study will purposively sample a subset of participants to add preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice. ETHICS AND DISSEMINATION: Ethical approval for this study has been granted by the university research ethics committee where the study will be carried out (approval reference MED-2018-10). Dissemination will be informed by the results obtained and communication will occur throughout.

A Philosophical View on the Experience of Dignity and Autonomy through the Phenomenology of Illness.

In the context of the end of life, many authors point out how the experience of identity is crucial for the well-being of patients with advanced disease. They define this identity in terms of autonomy, control, or dependence, associating these concepts with the sense of personal dignity. From the perspective of the phenomenology of embodiment, Kay Toombs and other authors have investigated the ways disease can impact on the subjective world of patients and have stressed that a consideration of this personal world can promote understanding and recognition of their experience. Based on the findings of qualitative studies of the perception of dignity and autonomy in patients at the end of life, this analysis assesses concepts such as being-in-the-world in illness, embodiment, lived body versus objective body or the gaze of the other from a Toombsian phenomenological perspective.

Feeling like a burden to others and the wish to hasten death in patients with advanced illness: A systematic review.

Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta-ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients' personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care.

The role of perceived dignity and control in the wish to hasten death among advanced cancer patients: A mediation model.

OBJECTIVE: The objective of the study is to test a model in which perceived loss of dignity and control are proposed, along with symptoms of depression and functional impairment, as risk factors for the wish to hasten death (WTHD) in advanced cancer patients. METHODS: This was a cross-sectional study of 193 patients in an oncology unit. Outcome measures included perceived control, performance status, symptoms of depression, perceived dignity, and the WTHD. Structural equation modeling was performed. RESULTS: Structural equation modeling showed that perceived loss of control (-0.402) and functional impairment (-0.21) were risk factors for perceived loss of dignity. Loss of control (-0.385) and functional impairment (-0.283) were also risk factors for symptoms of depression. Perceived loss of dignity and symptoms of depression were the most proximal determinants of the WTHD, on which they had a direct, positive, and significant effect (0.246 and 0.209, respectively). Therefore, both symptoms of depression and perceived loss of dignity independently predicted the WTHD and mediated the effects of perceived loss of control and functional impairment on this wish. CONCLUSIONS: The hypothesized model provides evidence for the impact of the four aforementioned factors on the WTHD. Our results suggest that personalized care plans which are able to enhance the sense of dignity and control among advanced cancer patients could help to reduce the likelihood or intensity of a WTHD.

Responder al deseo de adelantar la muerte en pacientes al final de la vida: síntesis de recomendaciones y guías clínicas / Responding to the Wish to Hasten Death in patients at the end of life: Synthesis of recommendations and clinical guidelines

OBJETIVO: Analizar y sintetizar la literatura existente sobre guías, protocolos y recomendaciones clínicas que den respuesta a un paciente que manifiesta deseo de adelantar la muerte (DAM). MÉTODO: Revisión de la literatura. Se diseñó una estrategia de búsqueda que se implementó en MEDLINE PubMed y en el metabuscador Google Académico. Se incluyeron en la revisión los artículos, protocolos, guías o procedimientos en los que se aportaban recomendaciones sobre el modo en que los profesionales deberían abordar el DAM, publicados hasta noviembre de 2015. Se extrajeron las distintas recomendaciones con una matriz de datos que sirvió para analizar y categorizar la información. RESULTADOS: Se incluyeron las recomendaciones publicadas en una guía clínica, un capítulo de libro, 5 artículos científicos y una página web. Las categorías obtenidas fueron: el contexto legal, el contexto de la comunicación con el paciente, temas a informar, aspectos a consensuar, habilidades de comunicación del profesional y responsabilidades del profesional. CONCLUSIONES: La síntesis de recomendaciones puede facilitar la práctica clínica a la hora de abordar el DAM

OBJECTIVE: To conduct an analysis and synthesis of the literature on guidelines, protocols and recommendations that respond to a patient manifesting a wish to hasten death (WTHD). METHOD: Literature review, a search strategy was designed of MEDLINE PubMed and Google Scholar meta-search engine. Articles, protocols, guidelines and procedures published up until November 2015 and offering recommendations on how professionals should address the WTHD were classified and the various recommendations were extracted in a matrix which served to analyse and categorise the data. RESULTS: Recommendations published in a clinical guide, a book chapter, five scientific articles and a website were obtained. It was noted that the experts attach importance to: legal context, communication context, issues to be informed, and issues for consensus, communication skills and professional duties. CONCLUSIONS: A synthesis of recommendations can facilitate clinical practice in addressing the WTHD

Ethical Challenges for an Understanding of Suffering: Voluntary Stopping of Eating and Drinking and the Wish to Hasten Death in Advanced Patients.

Some persons with advanced disease but no significant cognitive impairments consciously decide to stop taking food and fluids orally, even though they remain physically able to do so. The question is to what extent voluntarily stopping eating and drinking (VSED) may be considered an expression of a wish to hasten death, in the sense that the latter has been defined recently. We analyze the data reported in some studies in relation to primary care patients who died as a result of VSED and examine their results in light of the qualitative findings of patients that expressed a wish to die. In our view, VSED can be understood as a response to physical/psychological/spiritual suffering, as an expression of a loss of self, a desire to live but not in this way, a way of ending suffering, and as a kind of control over one's life. Thus, VSED is consistent with the wish to hasten death. Prior to interpreting this act as a deliberate expression of personal autonomy, it is important to explore all possible areas of suffering, including physical symptoms, psychological distress, existential suffering, and social aspects. Failure to do so will mean that we run the risk of abandoning a fellow human being to his or her suffering.

Assumptions and moral understanding of the wish to hasten death: a philosophical review of qualitative studies.

It is not uncommon for patients with advanced disease to express a wish to hasten death (WTHD). Qualitative studies of the WTHD have found that such a wish may have different meanings, none of which can be understood outside of the patient's personal and sociocultural background, or which necessarily imply taking concrete steps to ending one's life. The starting point for the present study was a previous systematic review of qualitative studies of the WTHD in advanced patients. Here we analyse in greater detail the statements made by patients included in that review in order to examine their moral understandings and representations of illness, the dying process and death. We identify and discuss four classes of assumptions: (1) assumptions related to patients' moral understandings in terms of dignity, autonomy and authenticity; (2) assumptions related to social interactions; (3) assumptions related to the value of life; and (4) assumptions related to medicalisation as an overarching context within which the WTHD is expressed. Our analysis shows how a philosophical perspective can add to an understanding of the WTHD by taking into account cultural and anthropological aspects of the phenomenon. We conclude that the knowledge gained through exploring patients' experience and moral understandings in the end-of-life context may serve as the basis for care plans and interventions that can help them experience their final days as a meaningful period of life, restoring some sense of personal dignity in those patients who feel this has been lost.