The gift of here and now at the end of life: Mindful living and dignified dying among Asian terminally ill patients.

OBJECTIVES: In Chochinov's dignity model, living in the here and now (mindful living) is explicitly stated as a dignity-conserving practice. However, what facilitates mindful living remain unclear. This study aims to investigate the mechanisms of mindful living among Asian terminally ill patients. METHODS: This interpretative phenomenological analysis comprised patients aged 50 and above with a prognosis of less than 12 months. Fifty interview transcripts from a larger Family Dignity Intervention study conducted in Singapore were used for the analysis. RESULTS: Findings revealed 12 themes that were organized into 3 axioms of mindful living for dignified dying: (a) purposive self-awareness, (b) family-centered attention, and (c) attitudes of mortality acceptance. Through purposive self-awareness, patients introspected their lived experience with illness and anticipated death to find resilience and contentment. Patients' conscious family-centered attention revolved around their relationships, achievements, and legacy within the family, leading to a deepened sense of interconnectedness with self and beloved others at life's end. Lastly, patients adopted nonjudgmental attitudes of mortality acceptance as they made necessary arrangements in preparation for their death, allowing them to treasure every living moment and obtain a closure in life. An empirical model of mindful living for dignified dying was developed based on these emerging themes, illustrating the interweaving of intention, attention, and attitude for facilitating meaningful living in the face of mortality. SIGNIFICANCE OF RESULTS: Mindful living is a dignity-preserving practice, which helps terminally ill patients to find tranquility in each present moment despite their impending death. The identified mechanisms of mindful living lay important groundwork for a new understanding and possible directions for culture-specific, mindfulness-based, family-centered interventions suited to terminally ill patients in the Asian context.

Coda and Catharsis: Exploring the Emotional Challenges and Coping of Junior Palliative Physicians Through Cinematic Reflection.

Background: There has been little research on reflective tools for junior doctors, whom may have encountered challenges working in palliative care whereby grief and losses are high. This is a qualitative study aiming to firstly explore the emotional challenges of junior doctors and secondly whether the movie is an effective reflective tool. Setting/participants: 32 junior doctors rotating through the palliative care unit were recruited and underwent a combined movie screening with a focus group discussion after. Results: Emotional challenges highlighted were (1) lifting the veil of death (2) impeded call of action (3) manifesting inner fatigue. Majority found the movie relatable to their clinical practice and felt that the focus group discussion was helpful. Conclusion: Junior doctors do have certain emotional challenges during their palliative care posting. Having a movie session combined with a focus group discussion is a reasonable method to help them reflect about their challenges.

Facilitating workplace grief through an organic office 'Last Office' session for bereaved employees.

BACKGROUND: Grief and loss in the workplace setting often entail a culture of silence, which can be detrimental to the psychosocial and emotional functioning of the work unit. Oftentimes, in an effort to maintain the role of 'consummate professionals', expressions of negative emotions are suppressed to avoid awkwardness. However, employees are not automatons that can freely leave their emotions at the office lobby and then begin work. This piece details the experience of losing a long-time colleague and one team's efforts in aiding the organic development of a brief grief intervention for psychosocial care. METHOD: Named the Office 'Last Office', this process sought to (1) acknowledge the loss, (2) unpack emotions and (3) honour the memory of the deceased coworker and culminated with the (4) practical removal of their personal effects from their workstation for return to the family. CONCLUSION: This brief intervention borrows from the respectful sensitivity of the 'Last Office' or 'Laying Out' practice that nurses employ when working with the recently deceased and is a first step to informing and changing the current vocational climate regarding acknowledging grief within a workplace setting.

Competing expectations: Advance care planning from the perspectives of doctors and nurses in the South-East Asian context.

This study qualitatively examines the perspectives of doctors and nurses on the implementation of the Advance Care Planning program in Singapore. Findings suggest that a combination of structural and conceptual factors hindered the performance of ACP. Themes on structural factors indicated that low awareness of ACP among senior staff resulted overall lack of buy-in and incorrect implementation of the program due to misconceptions. Conceptual factors pointed to lack of clarity on intended outcomes or roles. Consequently, participants drew meaning through the prism of their profession, resulting in competing expectations and tensions on possible outcomes of the program.

Resolving anticipatory grief and enhancing dignity at the end-of life: A systematic review of palliative interventions.

Anticipatory grief is the experience of grief symptomatology prior to loss. This study is a systematic review of empirical interventions or interventional components that were observed to lessen or adaptively direct the experience of anticipatory grief for patients at the end of life and their family members. A search of 5 major databases found 13,718 articles, of which 10 high-quality randomized controlled trials were included for final review. Lebow's "adaptational tasks of anticipatory mourning" was employed as a working model on the efficacy of the interventions. The interventions exhibited some positive outcomes but none addressed anticipatory grief directly. Recommendations for future research are discussed.

"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning.

BACKGROUND: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme. METHOD: We conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents' experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach. RESULTS: Participants' narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents' acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents' choice of care; c) Choice of PDM, considerations shaping respondents' choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants' decision-making processes. Respondents' continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs. CONCLUSION: The directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death.

'Food for Life and Palliation (FLiP)': a qualitative study for understanding and empowering dignity and identity for terminally ill patients in Asia.

OBJECTIVES: With 'eating' posited as Singapore's domestic pastime, food experiences for Singaporeans constitute national, social, ethnic and personal identities. However, though they form significant parts of Singaporean existence across the lifespan, studies and observations about food experiences for individuals at the end of life remain noticeably absent. Extant literature continues to focus on nutritional practice during illness and the active dying process, forgoing the rich lived experiences of food in the lives of patients and their families. The current work sought to qualitatively extricate through a constructivist phenomenological approach, the 'food voices' of Singaporean palliative care patients and their families. It also simultaneously aimed to assess the role of food in bolstering their subjective feelings of dignity and identity, while also considering resultant clinical implications. SETTING: Homes of patients within the Singaporean palliative care setting. PARTICIPANTS: A subset of qualitative data (n=25) in the form of dyadic interviews with terminally ill patients and a family caregiver was generated from a larger family dignity intervention study that explored the experience of living and dying among Asian palliative care patients and their families. RESULTS: Framework analysis with both inductive and deductive approaches informed by the a priori domain of food resulted in the generation of four major themes, each with three subthemes. These were organised into the Food for Life and Palliation model. They include: (1) feeding identity and familial bonds, (2) liminal subsistence in illness transition, (3) food becoming lineage, and (4) compassionate nourishment. CONCLUSIONS: Clinical implications are considered; including food-focused interventions that enhance dignity, promote meaning-making and facilitate legacy construction. Developmental suggestions are also directed at industry partners producing end-of-life nutrition products.

Sustainable implementation of advance care planning in Asia: An interpretive-systemic framework for national development.

OBJECTIVES: A qualitative interpretive-systemic focus group study was conducted to examine the developmental and implementational underpinnings of Asia's first national Advance Care Planning (ACP) programme constituted in Singapore. METHODS: 63 physicians, nurses, medical social workers, and allied health workers who actively rendered ACP were purposively recruited across seven major public hospitals and specialist centers. RESULTS: Framework analysis revealed 19 themes, organized into 5 categories including Life and Death Culture, ACP Coordination, ACP Administration, ACP Outcomes, and Sustainability Shift. These categories and themes formed an Interpretive-Systemic Framework of Sustainable ACP, which reflects the socio-cultural, socio-political, and socio-spiritual contexts that influence ACP provision, highlighting the need to adopt a public health strategy for enhancing societal readiness for end-of-life conversations. SIGNIFICANCE OF RESULTS: The Interpretive-Systemic Framework of Sustainable ACP underscores the importance of health policy, organizational structure, social discourse, and shared meaning in ACP planning and delivery so as to support and empower care decision-making among terminally ill Asian patients and their families facing mortality.

Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers.

BACKGROUND: While the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing. METHODS: This study adopted an interpretative phenomenological analysis (IPA) to investigate the motivations and internal appraisal processes of Asian family caregivers in Singapore who were tending to a dying family member. Qualitative dyadic interview data (N = 20) was drawn from a larger Randomized Controlled Trial for a novel Family Dignity Intervention (FDI) for palliative care patients and their families. The sampling population consisted of participants aged 21 and above who were identified to be the primary caregivers of older palliative care patients with a prognosis of less than 12 months. Data collection was conducted in the homes of patients and family caregivers. RESULTS: Findings revealed six themes that could either nurture or diminish caregiver wellbeing: 1) Honoring Fidelity (caregivers were motivated to commit to their caregiving roles in order to avoid regret), 2) Alleviating Suffering (caregivers were motivated to relieve their family member's pain), 3) Enduring Attachment (caregivers were motivated to spend time together with their family member), 4) Preserving Gratitude (caregivers were motivated to express their appreciation to their family member by caregiving), 5) Navigating Change (caregivers were motivated to adapt accordingly to changes in the illness trajectory) and 6) Reconciling with Mortality (caregivers were motivated to respond accordingly to their family member's prognosis). The final theme of the Wellbeing Determinant is posited as an indication of self-determination, and is conjectured to influence how caregiving motivations are appraised by the caregiver. CONCLUSION: Fulfilling and enhancing one's sense of self-determination appears central to infusing one's caregiving motivations with positive meaning, and consequently nurturing one's wellbeing in the end-of-life caregiving journey. These findings are discussed with recommendations for healthcare professionals working with family caregivers of palliative care patients.

Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research.

BACKGROUND: Preserving terminally ill patients' dignity and well-being through dignified and holistic care has become the overarching goal in palliative care services. However, dignity is a multifaceted concept with a wide range of interpretations under different cultural contexts. AIM: The aim of this review is to understand the variations in subjective interpretations and constitutions of dignity in palliative or end-of-life care via an integrative worldview. DESIGN: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline and used SPIDER tool to screen for appropriate and relevant articles for analysis. DATA SOURCES: Four major databases were searched including CINAHL, ERIC, Medline, and PsycARTICLES between 2009 and 2018. Forty-eight qualitative studies that examined dignity from the perspectives of patients, family caregivers, and health-care professionals were selected for full text data analysis using thematic synthesis. RESULTS: Analysis of the various concepts of dignity revealed 18 themes that were further categorized into 7 conceptual categories: (1) self-determination, (2) existential liberty, (3) relational connectedness, (4) caregiving revitalization, (5) mindful humanity, (6) patient-family care, and (7) sustainable culture. These 7 categories span across individual, familial, and institutional dimensions, forming a new Dynamic Reciprocity of Dignity model. CONCLUSIONS: The Dynamic Reciprocity of Dignity model highlights the importance of adopting a systemic lens to address dignity-related needs and concerns at the end of life, while providing insights on how compassionate care and self-compassion can serve as the foundation of dignified care, which in turn serve as a buffer against patients' existential suffering as well as caregivers' burnout and fatigue. Recommendations for clinical practice and future research directions are discussed.

Patient autonomy and participation in end-of-life decision-making: An interpretive-systemic focus group study on perspectives of Asian healthcare professionals.

OBJECTIVES: Asia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients' autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled. METHODS: Guided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals' attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis. RESULTS: The extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices. SIGNIFICANCE OF RESULTS: Healthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

A novel Family Dignity Intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial.

BACKGROUND: The lack of a holistic approach to palliative care can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian palliative care. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient's family. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of FDI in reducing psychosocial, emotional, spiritual, and psychophysiological distress in community-dwelling and in-patient, Asian, older terminally ill patients and their families living in Singapore. METHODS/DESIGN: An open-label randomized controlled trial. One hundred and twenty-six patient-family dyads are randomly allocated to one of two groups: (1) an intervention group (FDI offered in addition to standard psychological care) and (2) a control group (standard psychological care). Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline, 3 days and 2 weeks after intervention, as well as during an exit interview with family caregivers at 2 months post bereavement. Primary outcome measures include sense of dignity for patients and psychological distress for caregivers. Secondary outcomes include meaning in life, quality of life, spirituality, hopefulness, perceived support, and psychophysiological wellbeing, as well as bereavement outcomes for caregivers. Qualitative data are analyzed using the Framework method. DISCUSSION: To date, there is no available palliative care intervention for dignity enhancement in Asia. This first-of-its-kind study develops and tests an evidence-based, family driven, psycho-socio-spiritual intervention for enhancing dignity and wellbeing among Asian patients and families facing mortality. It addresses a critical gap in the provision of holistic palliative care. The expected outcomes will contribute to advancements in both theories and practices of palliative care for Singapore and its neighboring regions while serving to inform similar developments in other Asian communities. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT03200730 . Registered on 26 June 2017.