Good Death Experiences Research Articles

Death, dying and caring: exploring the student nurse experience of palliative and end-of-life education

Background: Undergraduate education and training are fundamental in preparing student nurses for working in palliative and end-of-life care. Aim: This article explores the experiences of student nurses in their palliative and end-of-life undergraduate nurse education. Methodology: Sandelowski and Barroso's (2007) framework for undertaking a metasynthesis was used. Initial database searches returned 60 articles of interest. Re-reading the articles in the context of the research question identified 10 studies that met the inclusion criteria. Four key themes emerged. Findings: Student nurses voiced concerns regarding their feelings of unpreparedness, and lack of confidence and knowledge when dealing with the complexities of palliative and end-of-life care. Student nurses called for more training and education in palliative and end-of-life care. Conclusion: Flexible nursing curricula responsive to the needs of student nurses and the changing landscape of healthcare provision, including care to ensure a good death experience, should be prioritised at undergraduate level.

End-of-Life Care and Nurse's Roles.

Every individual who opens his/her eyes to life at birth closes eyes to death at the end of life. Every individual who is in the process of death wants to spend the last periods of his life as free from pain as possible, in a dignified and peaceful way. End-of-life care is provided by nurses, which aims to alleviate the suffering of individuals in the dying process and to provide patients with a good death experience. The continuation of treatment-oriented practices in the end-of-life period causes the inability to provide end-of-life care and patients suffer from unnecessary practices. Nurses who are in one-to-one contact with patients have important roles in making the decision to switch to end-of-life care and in providing end-of-life care to patients. In the present article, the concept of end-of-life care is examined, the difference between end-of-life care and palliative care, which are often confused, is discussed, and the purpose of end-of-life care and its importance for patients are emphasized. The roles and responsibilities of nurses in end-of-life care are also highlighted. It has been discussed that the roles of nurses are very important in the transition from treatment-oriented care to comfort-oriented end-of-life care, providing effective end-of-life care, and patients experiencing a good death with dignity.

Qualities of the dying experience of persons who access medical assistance in dying: A scoping review

Defining a “good death” is complex and grounded in diverse cultural, social, and personal factors. Although there is a significant body of literature exploring the broad concepts of death and dying, there is a dearth in literature that has explored what constitutes a good death for persons undergoing assisted dying such as Medical Assistance in Dying (MAiD). In this scoping review of 19 articles, we explore dying experiences and what a good death entails for people accessing MAiD. Understanding personal values and ideas about positive dying experiences can guide patients, care partners, and clinicians in their preparation toward, and facilitation of, a good death experience particularly among persons who access MAiD.

Clinician Communication in Hospice: Constructions of Reality Throughout the End-of-Life Process.

The current study examined qualitative data from hospice clinicians' perspectives on language, surrounding end-of-life (EOL), to understand challenges and opportunities for constructing a trajectory of communication leading towards a good death experience. Findings from two focus groups with nine clinicians' and 12 individual interviews, four of which were follow up interviews after the focus groups, were guided by framework analysis and revealed three themes, constructing language choices, roles and responsibilities, and socio-cultural considerations. We used the Opportunity Model for Presence during the End-of-Life Process (OMP-EOLP) to make sense of the findings and discuss implications for language use throughout the EOL process. We argue additional efforts should be made in recognizing the value of presence checks, re-constructing advance care planning, and utilizing different forms of media as an educational tool and connection mechanism for clinicians with patients and families to achieve a timely engagement of EOL conversations for all healthcare participants.

‘A sacred relic kept’

By at least the 1830s, evangelical Protestants in the United States considered relic collection and distribution to be an essential part of an individual’s ‘good death’ experience. Protestant relics took form as bodily and contact relics. Bodily relics included locks of hair, pictures of bodies that once lived, post-mortem images, and, in rare cases, blood and bones. Contact relics included Bibles, clothes, burial shrouds, letters, and other objects associated with the dead. Evangelical publishers employed the memoir genre to teach children and adults how to distribute these relics on their deathbeds to family and friends. Some evangelical children even modeled handwritten memoirs of their friends after these published accounts. By the mid-nineteenth century, most Anglo-American Protestants regarded relic collection and distribution around the deathbed as a defining feature of evangelicalism. This held true for evangelical women, children, and men. In fact, evangelical men took these deathbed practices with them to war. Civil War soldiers who died away from home insisted on writing deathbed letters to families as part of their good death experiences. These letters usually carried soldiers’ most treasured possessions back home as Protestant relics, including locks of hair, Bibles, and rings.

Finishing Well: Compassionate Extracorporeal Membrane Oxygenation Discontinuation

Extracorporeal Membrane Oxygenation (ECMO) is associated with significant mortality. Provision of high-quality end-of-life (EOL) care for patients supported on ECMO entails specific physiological, pharmacological, and technical considerations. Limited guidance exists for clinicians on delivery of optimal EOL care on ECMO. In this article, we review the unique aspects of EOL care as they apply to ECMO support and propose a pragmatic, interdisciplinary framework for compassionate ECMO discontinuation in children and adults.The goal of compassionate ECMO discontinuation (CED) is to allow natural death from the underlying disease process while delivering high-quality EOL care to ensure a good death experience for patients and their families. The CED approach includes: 1) a family meeting to define goal-concordant EOL care and prepare families and patients for the dying process; 2) clinical preparation, including symptom management and discontinuation of other life-sustaining therapies; 3) technical aspects which necessarily vary according to patient factors and the circuit and cannulation strategy; and 4) bereavement support. The proposed CED considerations and checklist may serve as tools aiding provision of comprehensive, quality, individualized patient- and family-centered care for children and adults dying despite ECMO support. A structured CED may enhance EOL experiences for patients, family, and staff by providing a respectful and dignified death experience. Future research is required to determine feasibility and effectiveness of the framework, which must be adapted to the patient and institutional setting.

Embodied good deaths and disembodied bad deaths: Undergraduate nursing students narratives of experience

BackgroundThe concept of “good and bad deaths” has been widely addressed in the literature. However, little is known of undergraduate nursing students' experiences with death in clinical practice or how they perceive good and bad deaths. ObjectiveTo explore undergraduate nursing students' personal and professional/clinical experiences of death and dying. DesignA qualitative narrative inquiry design. Setting and ParticipantsEighteen third year Bachelor of Nursing students participated in the study. MethodsData was collected through individual participant interviews and analysed using Clandinin and Connelly's three dimensions of narrative inquiry (temporality, sociality and place). ResultsA key finding of the study revealed that students' death experiences are shaped by the role of others, especially experienced nurses in clinical practice. Embodied good death experiences were influenced by the presence of nurses who guided students through the experience. Disembodied bad death experiences were influenced by undignified care, ritualistic post-mortem care and the physical coldness of the deceased and the environment. ConclusionNursing students need meaningful preparation to undertake end of life care in clinical practice, including post-mortem care and the possibility of bad deaths. End of life care education and end of life care simulation play a role in preparing students for end of life care in clinical practice. End of life care education needs to be commenced early in the undergraduate degree. Furthermore, nursing clinicians need to be aware of the impact that they have in shaping good and bad death experiences for undergraduate nursing students, the Registered Nurses of the future.

Bridging the dichotomous gap between expectations and perceptions in quantifying hospice care quality

This study uses a fuzzy logic and neural network to ascertain how service quality dimensions of the SERVQUAL model (reliability, assurance, empathy, responsiveness, and tangibility) affect overall customer satisfaction. Using a threshold logic unit to produce observation outcomes, the algorithm indicated that while reliability was the crux of the service outcome, peripheral variables (e.g., assurance, empathy, responsiveness, and tangibility) integrated emotions and feelings into the hospice service process which equated to an increased quality of life, a positive disconfirmation of expectations (service expectations were met or exceeded) and a good death experience equating to a positive perception of quality.

‘Death is difficult in any language’: A qualitative study of palliative care professionals’ experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds

Background: Ethnic minority patients have unique challenges in accessing health services. These include language difficulties, unfamiliarity with the health system, lower rates of cancer screening and survival, higher rates of reported side effects from cancer treatment and poorer quality of life. Little is known about this patient group when transitioning to palliative care. Aim: To elicit the experiences of palliative care health professionals when providing care for patients from culturally and linguistically diverse backgrounds which differ from mainstream Australian language and culture. Design: An emergent qualitative design, informed by theoretical and procedural direction from grounded theory research. Setting/participants: Four focus groups held with palliative care staff (n = 28) in a single specialist palliative care service in Australia. Results: The following themes emerged: (1) determining the rules of engagement around discussion of diagnosis and prognosis, (2) navigating the challenge of language to patient understanding, (3) understanding migration experiences to establish trust, (4) maintaining the balance between patient safety and comfort care, (5) providing a good death experience through accommodation of beliefs, and (6) navigating the important role of family members while privileging patient preferences. Conclusion: Underlying provider perceptions of caring for patients was that death is difficult in any language. Care was conceptualised as considering cultural and linguistic backgrounds within individualistic care. Understanding the migration experience and building trust were key elements of this individualised approach. Acknowledgement of the key role played by families in patient care and safety are strategies to minimise barriers and understand the concerns of this patient group.

Hospice Informal Caregivers' Perception of a Good Death Experience: A SERVQUAL Analysis

ABSTRACTThis research study explores hospice informal caregivers' perceptions of service quality and a good death experience during end-of-life care. It demonstrates how service dimensions of the SERVQUAL analysis affect overall customer satisfaction. This study addresses contrast and dissonance theory as relative to marginal gaps in actual service performance and the effect on overall customer satisfaction. The research indicated that while reliability was the core of the service outcome, peripheral variables (e.g., assurance, empathy, responsiveness, and tangibility) integrated emotions and feelings into the hospice service process that equated to a positive disconfirmation of expectations and a good death experience.

Healthcare and End-of-Life Needs of Lesbian, Gay, Bisexual, and Transgender (LGBT) Older Adults: A Scoping Review.

Lesbian, gay, bisexual, and transgender (LGBT) older adults face a number of challenges with respect to access to healthcare especially towards end-of-life. Through a systematic search and scoping review of the literature, we sought to answer two related research questions. In particular, the purpose of this scoping review was to determine the healthcare needs of LGBT older adults nearing end-of-life as well as the factors that contribute to a good death experience among older adults who identify as LGBT. A systematic search of electronic databases for articles published between 2005 and 2016 as well as screening for relevance resulted in 25 results. The data were charted and grouped according to the themes of: social support and chosen family, intimacy, health status, fear of discrimination and lack of trust, lack of knowledge and preparedness, and cultural competence in the healthcare system. The results suggest a role for health and social service workers in contributing to a positive care experience for LGBT older adults by becoming knowledgeable about the unique needs of this population and being unassuming and accepting of individuals’ sexuality. Many of the articles reviewed collected data outside of Canada, limiting generalizability and highlighting a need for Canadian data on LGBT aging and end-of-life.

Undergraduate nursing students’ construction of a good and bad death

Background Nurses have a key role to play in ensuring that high-quality care is given to patients throughout their disease trajectory, including at the end of life. An increase in the ageing population in Western countries means that nurses are responsible for providing end-of-life care in a range of clinical settings. Nursing students are often exposed to providing end-of-life care while on clinical placement. Aim The aim of this study was to explore the definition and construction of both a good and bad death from the perspective of a cohort of Australian third-year undergraduate nursing students. Methods As part of a larger mixed-method survey study of third-year undergraduate nursing students’ perspectives about end-of-life care, qualitative open-ended questions about what constituted a good and a bad death were asked within the survey. These were supplemented by questions on their positive and negative experiences of death and dying. The responses to the open-ended questions were analysed using a thematic analysis. Findings A total of 225 nursing students completed the survey. Participants were asked about death and dying in the dichotomous terms of negative and positive experiences and what constituted a good or bad death. The analysed themes included: pain free or suffering; acceptance or non-acceptance of death; agreements or conflict; family support or no family support; respecting wishes or ignoring wishes; quality of life in the dying process or futile treatment; prepared for death or unprepared for death; good or bad circumstances; influence of good and bad experiences. Conclusions Nursing students had clear understandings of what they considered to be a good and a bad death. They viewed the achievement of a good death as a reflection on their clinical practice. As such, achieving a good death experience for people and their families was viewed as paramount to providing quality nursing care. This knowledge will aid in the education of nursing students in regard to providing the best possible circumstances for a good death for clients.

Dying well: nurses’ experiences of ‘good and bad’ deaths in hospital

This paper reports a study investigating hospital nurses' experiences of death and dying. Despite advances in medical science and health care, together with the push towards individualizing approaches to patient care in the developed world, significant variation in the care of dying patients still exists. The international issues relating to differing types of death reveal both its complexity and diversity, with evidence of 'good death' experiences largely focused on hospice experiences, and a lack of research on death in general hospitals. In-depth interviews were conducted in 1999 with a convenience sample of 29 Registered Nurses in the United Kingdom based on their hospital death experiences. Semiotic analysis was used to identify the 'deep structures' that underlie and form part of cultural communication as a way of understanding how nurses made sense of death. Data interpretation was enhanced through the use of a typology of 'good and bad deaths'. The findings suggest that different experiences of death are based on the extent to which nurses were able to exert control over the dying process. The management of death in hospital is a major source of conflict for nurses. Good and bad death experiences were constructed according to their impact on the sentimental order of the ward, the intangible, but real patterns of mood that influenced nurses' feelings. Moreover, good and bad deaths focused less on patients' needs and the dying process and more on the death event and nurses' abilities to manage organizational demands. There is a need to improve communication with patients and families about diagnosis and prognosis to ensure that effective communication takes place and 'blocking behaviour' is avoided. The findings also challenge practitioners to focus attention on death as a process, and to prioritize patients' needs above those of the organization. Moreover, there is the need for guidelines to be developed enabling patients to have a role in shaping events at the end of their lives.

Nurse–patient relationships in palliative care

The aim of this paper is to report a study exploring aspects of nurse-patient relationships in the context of palliative care. Although there are numerous studies addressing nurse-patient relationships, little research has focused on these in the context of palliative are. Furthermore, no previous study has examined the relationship in the Chinese context. Qualitative data were collected from 10 hospice nurses and 10 terminally ill patients by means of open ended unstructured interviews. Respondents were asked to reflect on practices and incidents that would allow an understanding of the meaning of nurse-patient relationships in palliative care. Four major categories emerged from the perspectives of patients and nurses: (1) forming a relationship of trust; (2) being part of the family; (3) refilling with fuel along the journey of living and dying; and (4) enriched experiences. Responses revealed that a relationship of trust is formed, and that nurses are not only regarded as health professionals, but also become part of the family or a good friend. Nurses who develop trusting relationships demonstrate a holistic approach to caring, show their understanding of patients' suffering, are aware of their unvoiced needs, provide comfort without actually being asked, and are reliable, proficient, competent and dedicated in their care. Trust, the achievement of the goals of patients and nurses, caring and reciprocity are important elements of nurse-patient relationships in palliative care. Such relationships not only improve patients' physical and emotional state, but also facilitate their adjustment to their illness, ease pain and can ultimately lead to a good death experience. It is nurses' personal qualities and skills, which are embedded in these relationships, that constitute excellence in nursing care. Nurses also derive satisfaction and are enriched through the relationships.

Nursing Home Residents' Perception of the “Good Death”

ABSTRACT Little is known about the concept of the “good death” and its relationship to formal Christian religious belief. In this research, 15 nursing home residents participated in a semi-structured open-ended interview in which they were asked to describe their beliefs about the good death experience. This paper summarizes the most distinctive themes of one study of the impact, of formal religious belief on attitudes regarding the good death. The majority of interviewees defined a good death in terms of freedom from pain and suffering, and indicated that religious faith and prayer were important to them in coping with death and dying.