Happiness in Hospice Care in The Netherlands: A Case Study Design.

Happiness is central in spirituality but has hardly been explored in palliative care. The objective of this study is to explore happiness in hospice care in the Netherlands. A case study design consisting of participatory observations and semi-structured interviews was used. Happiness was associated with all dimensions of health. Patients spoke about a growing receptivity and a deepening of connections with themselves and others. Hospice staff related their happiness to feeling a true connection and their work supported them in appreciating their own lives in new ways. This study suggests that happiness can be found in settings that are frequently associated with suffering.

'What if I'm no longer around?': An evaluative description of a structured group conversation about the care for persons with profound intellectual and multiple disabilities when they outlive their parents.

BACKGROUND: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. METHOD: We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations. RESULTS: Family members (n = 22) of persons with PIMD who live in residential care facilities and care professionals (n = 9) evaluated the structured group conversation as valuable. While both parties reported that the group conversation (re)sparked their attention for the topic, mostly family members planned to take concrete action as a result of it. CONCLUSIONS: The group conversation encourages parents to communicate explicitly about the future care for their child with PIMD, and offers both family members and care professionals support in exploring this future care together.

Care and support for persons with profound intellectual and multiple disabilities without parents: A qualitative exploration.

BACKGROUND: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little is known about the actual situation of persons with PIMD without parents. AIM: To explore how parental roles are taken over by others, when persons with PIMD have outlived their parents, and how this affects the care and support for- and quality of life (QoL) of persons with PIMD. METHODS: We interviewed seven siblings, and six professionals (N = 13) involved in the care and support for persons with PIMD without parents, and analysed the data thematically. RESULTS: Siblings described a lack in family communication about the transition, yet felt responsible to fill the gap their parents left behind. Professional legal guardians felt professional responsibility towards their clients, yet described they had a limited assignment to fulfil. Professional caregivers underscored the importance of family in the care and support for persons with PIMD, while describing sometimes taking on extra responsibility for clients without parents. CONCLUSIONS: Support aimed at facilitating a timely transfer of responsibilities, and at clarifying the content of these responsibilities, could better prepare both siblings and professionals to mitigate the impact of the loss of parents for persons with PIMD.

Witnesses of hope in times of despair: chaplains in palliative care. A qualitative study.

Hope is an important topic in spiritual care in palliative care but the experiences of chaplains with hope have hardly been explored. The objective of this study was to explore Dutch  chaplains' experiences with hope in palliative care. Semi-structured interviews were conducted, which were thematically analyzed. The 10 chaplains had a variety of ordinations: Muslim, Protestant, Roman Catholic, Humanistic, or otherwise. Participants spoke about changes in patients' hope, often implying despair and surrender, in which patients' self-reflection was pivotal. Participants felt witnesses of hope, not by offering hope, but by acknowledging patients' hope and despair while being with their patients. They criticized other professionals who, not bearing witness to these experiences, tried to offer hope to patients. We conclude that chaplains may become witnesses of hope in times of despair, which includes the (ideological) critical function of spiritual care.

A spiritual care intervention for chaplains in home-based palliative care: design of a mixed-methods study investigating effects on patients' spiritual wellbeing.

Recently, the call for chaplains to become 'research literate' has been recognized by various scholars as well as by practitioners in the field. However, papers that present and discuss the study design and provide guidance on the methodology of chaplaincy research are scarce. The aim of this study is to present the design of a mixed-methods study that investigates the impact of a spiritual care intervention on patients' spiritual wellbeing in palliative, home-based care. It reports on the steps needed to conduct such a study in chaplaincy care, and describes and discusses the study's research design, intervention, participants, sampling strategy, patient and public involvement, procedure, ethical considerations, data collection, and analysis. Presenting and discussing such a design is not only useful for researchers before conducting their study, in order to create transparency, but also for chaplains to improve their knowledge on research methodology and research literacy.

Parents' views on medical decisions related to life and death for their ageing child with profound intellectual and multiple disabilities: A qualitative study.

BACKGROUND: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However, little is known about how parents make such decisions for their ageing child. AIM: Explore parents' views on medical decisions related to life and death for their ageing child with PIMD. METHODS: We interviewed 27 parents of persons with PIMD (≥ 15 years) and analyzed the data thematically. RESULTS: Parents who were convinced that their ageing child's quality of life (QoL) was good, stated that their child "deserved the same treatment as any other person". Others rejected life-prolonging treatments for their child because they believed such treatment would diminish their child's QoL. Some of the parents who thought their child's QoL was poor, mentioned that withholding treatment is only an option in a crisis situation and contemplated other options to shorten their child's life. CONCLUSIONS: Parents feel equipped to take on a central role in medical decisions related to life and death for their ageing child with PIMD, and desire understanding from medical professionals for their views on their child's interests, which sometimes includes physician-assisted death.

Witnessing Quality of Life of Persons with Profound Intellectual and Multiple Disabilities. A practical-Philosophical Approach.

Persons with profound intellectual and multiple disabilities (PIMD) cannot speak about their Quality of Life (QoL), which makes it necessary to involve others. In current approaches, these 'others' are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers' knowledge on the QoL of a person with PIMD a theoretical basis that values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers' experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made.

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis.

BACKGROUND: Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge. METHOD: We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies. RESULTS: Parents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge. CONCLUSIONS: Suggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD.

Spiritual Care in Palliative Care: A Systematic Review of the Recent European Literature.

Many studies on spiritual care in palliative care are performed in the US, leaving other continents unexplored. The objective of this systematic review is to map the recent studies on spiritual care in palliative care in Europe. PubMed, CINAHL, ATLA, PsycINFO, ERIC, IBSS, Web of Science, EMBASE, and other databases were searched. Included were European studies published in a peer-reviewed journal in 2015, 2016, or 2017. The characteristics of the included studies were analyzed and a narrative synthesis of the extracted data was performed. 53 articles were included. Spiritual care was seen as attention for spirituality, presence, empowerment, and bringing peace. It implied creative, narrative, and ritual work. Though several studies reported positive effects of spiritual care, like the easing of discomfort, the evidence for spiritual care is low. Requirements for implementation of spiritual care in (palliative) care were: Developing spiritual competency, including self-reflection, and visibility of spirituality and spiritual care, which are required from spiritual counselors that they participated in existing organizational structures. This study has provided insight into spiritual care in palliative care in Europe. Future studies are necessary to develop appropriate patient outcomes and to investigate the effects of spiritual care more fully.

The value of metaphorical reasoning in bioethics: An empirical-ethical study.

BACKGROUND:: Metaphors are often used within the context of ethics and healthcare but have hardly been explored in relation to moral reasoning. OBJECTIVE:: To describe a central set of metaphors in one case and to explore their contribution to moral reasoning. METHOD:: Semi-structured interviews were conducted with 16 parents of a child suffering from the neurodegenerative disease CLN3. The interviews were recorded, transcribed, and metaphors were analyzed. The researchers wrote memos and discussed about their analyses until they reached consensus. ETHICAL CONSIDERATIONS:: Participants gave oral and written consent and their confidentiality and anonymity were respected. FINDINGS:: A central set of metaphors referred to the semantic field of the hands and arms and consisted of two central metaphors that existed in a dialectical relationship: grasping versus letting go. Participants used these metaphors to describe their child's experiences, who had to "let go" of abilities, while "clinging" to structures and the relationship with their parent(s). They also used it to describe their own experiences: participants tried to "grab" the good moments with their child and had to "let go" of their child when (s)he approached death. Participants, in addition, "held" onto caring for their child while being confronted with the necessity to "let go" of this care, leaving it to professional caregivers. DISCUSSION:: The ethical analysis of the findings shows that thinking in terms of the dialectical relationship between "grasping" and "letting go" helps professional caregivers to critically think about images of good care for children with CLN3. It also helps them to bear witness to the vulnerable, dependent, and embodied nature of the moral self of children with CLN3 and their parents. CONCLUSION:: Metaphorical reasoning may support the inclusion of marginalized perspectives in moral reasoning. Future studies should further explore the contribution of metaphorical reasoning to moral reasoning in other cases.

Interfaith Spiritual Care: A Systematic Review.

Although knowledge on spiritual care provision in an interfaith context is essential for addressing the diversity of patients' religious and spiritual needs, an overview of the literature is lacking. Therefore, this article reviews the empirical literature on interfaith spiritual care (ISC) in professional caring relationships. A systematic search in electronic databases was conducted to identify empirical studies published after 2000. Twenty-two studies were included. The quality of the included studies was assessed, and their results were thematically analyzed. The majority were conducted in North America, mainly using qualitative methods and focusing on professional caregivers, who had a variety of professional and spiritual backgrounds. Two core categories were identified: (1) normativity: reasons for (not) wanting to provide ISC, in which universalist and particularist approaches were identified; and (2) capacity: reasons for (not) being able to provide ISC, which included the competences that health care professionals may need when providing ISC, as well as contextual possibilities and restraints. This systematic review identifies gaps in the literature and indicates that future studies have to explore patient perspectives on ISC.

Solicitude: balancing compassion and empowerment in a relational ethics of hope-an empirical-ethical study in palliative care.

The ethics of hope has often been understood as a conflict between duties: do not lie versus do not destroy hope. However, such a way of framing the ethics of hope may easily place healthcare professionals at the side of realism and patients at the side of (false) hope. That leaves unexamined relational dimensions of hope. The objective of this study was to describe a relational ethics of hope based on the perspectives of palliative care patients, their family members and their healthcare professionals. A qualitative longitudinal method based on narrative theories was used. Semi-structured interviews on hope were conducted with twenty-nine palliative care patients, nineteen friends or family members, and fifty-two healthcare professionals, which were recorded and transcribed. Data on hope were thematically analyzed. The researchers wrote memos and did member checking with participants. When participants spoke about hope, they referred to power and empowerment, like the powerful bonding of hope between patients and physicians. They also associated hope with the loss of hope and suffering. Several participating healthcare professionals tried to balance both sides, which involved acknowledgment of hope and suffering. Hope and power were reflected in the ethical concept of empowerment, whereas suffering and the loss of hope were reflected in the ethical concept of compassion. Empowerment and compassion can be balanced in solicitude. In conclusion, a relational ethics of hope requires solicitude, in which healthcare professionals are able to weigh empowerment and compassion within particular relationships.

A singing choir: Understanding the dynamics of hope, hopelessness, and despair in palliative care patients. A longitudinal qualitative study.

OBJECTIVE: Hope, despair, and hopelessness are dynamic in nature; however, they have not been explored over time. The objective of the present study was to describe hope, hopelessness, and despair over time, as experienced by palliative care patients. METHOD: We employed a qualitative longitudinal method based on narrative theories. Semistructured interviews with palliative care patients were prospectively conducted, recorded, and transcribed. Data on hope, hopelessness and despair were thematically analyzed, which led to similarities and differences between these concepts. The concepts were then analyzed over time in each case. During all stages, the researchers took a reflexive stance, wrote memos, and did member checking with participants. RESULTS: A total of 29 palliative care patients (mean age, 65.9 years; standard deviation, 14.7; 14 females) were included, 11 of whom suffered from incurable cancer, 10 from severe chronic obstructive pulmonary disease, and 8 from severe heart failure. They were interviewed a maximum of three times. Participants associated hope with gains in the past or future, such as physical improvement or spending time with significant others. They associated hopelessness with past losses, like loss of health, income, or significant others, and despair with future losses, which included the possibility of losing the future itself. Over time, the nature of their hope, hopelessness, and despair changed when their condition changed. These dynamics could be understood as voices in a singing choir that can sing together, alternate with each other, or sing their own melody. SIGNIFICANCE OF RESULTS: Our findings offer insight into hope, hopelessness, and despair over time, and the metaphor of a choir helps to understand the coexistence of these concepts. The findings also help healthcare professionals to address hope, hopelessness, and despair during encounters with patients, which is particularly important when the patients' physical condition has changed.

Improving communication on hope in palliative care. A qualitative study of palliative care professionals' metaphors of hope: grip, source, tune, and vision.

CONTEXT: Hope is important in palliative care. However, palliative care professionals' perspectives on hope are not well understood. Metaphors of hope are a way of better understanding these perspectives. OBJECTIVES: To describe palliative care professionals' perspectives on hope by examining the hope metaphors they spontaneously used to describe their own hope and their perspectives on the hope of patients and their families. METHODS: Semistructured interviews with palliative care professionals were recorded, transcribed, and analyzed using a narrative approach. Results were discussed until the researchers reached consensus and reinforced by other health-care professionals and by observing several palliative care settings. RESULTS: The 64 participants (mean (SD) age, 48.42 (9.27) years and 72% female) were physicians (41%), nurses (34%), chaplains (20%), or other professionals (5%), working in Canada (19%) or The Netherlands (81%). Participants described the hope of patients, their families, or themselves as a 1) grip, which implied safety; 2) source, which implied strength; 3) tune, which implied harmony; and 4) vision, which implied a positive perspective. Compared with Dutch participants, Canadian participants generally put more emphasis on spirituality and letting go of their own hope as a grip (safety). Compared with other included professionals, physicians used hope as a grip (safety) most often, whereas chaplains used hope as a tune (harmony) most often. CONCLUSION: Our findings help to increase the understanding of hope and contribute to improving communication skills in palliative care professionals.

Should palliative care patients' hope be truthful, helpful or valuable? An interpretative synthesis of literature describing healthcare professionals' perspectives on hope of palliative care patients.

BACKGROUND: Healthcare professionals' perspectives on palliative care patients' hope influence communication. However, these perspectives have hardly been examined. AIM: To describe healthcare professionals' perspectives on palliative care patients' hope found in the literature. DESIGN: The interpretative synthesis consisted of a quality assessment and thematic analysis of included articles. DATA SOURCES: Literature search of articles between January 1980 and July 2011 in PubMed, CINAHL, PsycINFO and EMBASE and references of included studies. SEARCH STRATEGY: (palliat* or hospice or terminal* in title/abstract or as subject heading) AND (hope* or hoping or desir* or optimis* in title or as subject heading). RESULTS: Of the 37 articles, 31 articles were of sufficient quality. The majority of these 31 articles described perspectives of nurses or physicians. Three perspectives on hope of palliative care patients were found: (1) realistic perspective - hope as an expectation should be truthful, and healthcare professionals focused on adjusting hope to truth, (2) functional perspective - hope as coping mechanism should help patients, and professionals focused on fostering hope, and (3) narrative perspective - hope as meaning should be valuable for patients, and healthcare professionals focused on interpreting it. CONCLUSIONS: Healthcare professionals who are able to work with three perspectives on hope may improve their communication with their palliative care patients, which leads to a better quality of care.