‘That good courage’ : understanding and facilitating dignified death and holistic end of life care in Singapore

• Main Author: Patinadan, Paul Victor
• Other Authors: Ho Hau Yan Andy
• Format: Thesis-Doctor of Philosophy
• Language: English
• Published: Nanyang Technological University 2022
• Subjects: Social sciences::Psychology
• Online Access: https://hdl.handle.net/10356/155030
• Institution: Nanyang Technological University

Paralleling global trends, Singapore is facing ever-increasing pressure to meet the challenges of a rapidly aging population; seeing a resultant tandem increase in quality palliative care demand as well. With the advent of modern biomedicine, people are continuing to live longer lives, though this seeming boon does not necessarily equate to better quality of life, especially closer to the dying process. Current interventions remain adamantly medically-oriented, with often a peremptory focus on pain and symptom management. Individuals facing the end of life as well as their families are often caught up in a veritable whirlwind of frequent medical appointments, uncomfortable treatment regimes, and constant enunciation of ‘patienthood’; all while receiving incongruous support in the alleviation of the psycho-socio-spiritual pains of terminal illness and mortality. With the many uncontrollable changes, losses (that are also grieved in anticipation) and uncertainties occurring, the dignity of these individuals is effectively abraded. There remains, unfortunately, a dearth of interventions that address instances of anticipatory grief and dignity-related concerns for both the terminally-ill and their families in a humanistic and culturally-sensitive manner. There are also few ventures into efficaciously training healthcare professionals to be advocative of such concerns for their charges. The current doctoral thesis comprised of four unique and interrelated studies established upon the foundation of Health Promoting Palliative Care (HPPC) (Kellehear, 1999) and sought to holistically understand how to best support the Singaporean dying process. These studies spanned across various samples, methodologies and disciplines, remaining empirically rigorous and focused on the established ken. Study I systematically reviewed the breadth of international literature for empirical interventions or interventional components that were observed to lessen or adaptively direct the experience of anticipatory grief for dying patients and their loved ones. A comprehensive search guided by the PICOS (Population Intervention Comparison Outputs Study) and PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) frameworks of 5 major databases found 13,718 articles, of which 10 high-quality Randomized Control Trials (RCTs) were selected for final data extraction. Eight studies were categorized into psychotherapeutic interventions of various types, and two studies were educational by design. Lebow’s (1976) ‘Adaptational Tasks of Anticipatory Mourning’ was employed as a working model of reference to examine the efficacy of the interventions. All interventions had exhibited some positive outcomes, but none had addressed anticipatory grief directly. Study I was instrumental in providing for the scaffolding of HPPC’s foundational themes as more investigation and development was considered in the Singaporean context. Study II presented the quantitative and qualitative results of a large-scale, three-year Randomized Control Trial that evaluated the efficacy of a culturally-sensitive, locally based Family Dignity Intervention (FDI) for the addressment of psycho-socio-spiritual needs of terminally-ill Singaporeans and their families. A total of 91 patient-caregiver dyads (N = 182, Intervention = 45 dyads, Control = 46 dyads) were included in the study. Quantitative results from Mann-Whitney U and Friedman (with post-hoc Wilcoxon Signed-Rank) tests saw statistical significance between intervention and control groups of patient- and caregiver-participants across a myriad of psychometric measures. Compared to the control group, patient-participants reported greater quality of life, hope (in total and across several sub domains), meaning, and perceived social support post-intervention. Intervention group caregiver-participants were observed to experience lowered levels of depressive symptomology, lowered caregiver stress, increased daily performance and increased hope (in total and across several sub domains). Over time, patient-participants experienced a greater satisfaction with themselves. Likewise, caregiver-participants over time observed similar self-satisfaction gains as well as increased meaning-making of their situation. Qualitative findings indicated favorable responses to the FDI, including that it was satisfactory, helpful and provided participants a sense of dignity. When mapped to Lebow’s (1976) adaptational tasks, the FDI performed excellently, organically allowing participants to complete all the listed tasks to effectively address issues of anticipatory grief. The role of the FDI as a key clinical proponent towards achieving HPPC through intervention and harm reduction is additionally discussed. Study III was a critical examination of the food-based experiences participants and their loved ones expressed while within the palliative care setting; in essence, a study of their ‘food voices’ at the end of life. With ‘eating’ posited as the country’s domestic pastime, these food experiences constitute towards Singaporeans’ socio-cultural and personal identities. However, though food is seen to form an integral part of existence across the lifespan; academic inquiry, and studies about lived experiences surrounding food at the end of life, remain noticeably absent. Investigative of the frequent mention of food-related experiences during the FDI process, a constructivist-phenomenological approach via framework analysis with both inductive and deductive approaches was conducted under the larger a priori domain of ‘food’ with 25 dyadic interview transcripts (drawn from the collated dataset of Study II). Analysis led to the development of the Food for Life and Palliation (FLiP) Model, with four major themes with three subthemes each. The major themes include, (1) Feeding Identity and Familial Bonds; or how food features in creating personhood and forming familial memories, (2) Liminal Subsistence in Illness Transition; which documented the transmutation of food experiences upon illness onset, (3) Food becoming Lineage; how food is celebrated though heritage and legacy, and (4) Compassionate Nourishment; where the experience of food and eating is one of intrinsic care, with the table functioning as a restive space. Clinical implications are considered as the study allowed for employing cultural values (in the form of food experiences) for the provision of holistic end of life care contextual to food-centric Singapore. Developmental suggestions are also directed at industry partners producing end-of-life nutrition products, public and community outreach opportunities and other areas related to establishing HPPC in Singapore. The final Study IV conceptualized, developed and piloted a novel applied drama virtual workshop for junior healthcare professionals based on the findings in Study III to provide an impetus towards the teaching of culturally-sensitive, dignity-enhancing and compassionate care. Extant literature posits that such humanistic values can be educated and instilled as employable resources within nurses. One promising method is through the use of drama; as an impetus to inspire thought, critical reflection, emotional engagement and personal transformation. As pedagogical methods continue to evolve in an increasingly online world, virtual platforms as well, hold great potential for accessible, efficacious instruction. Study IV employed a mixed-methods design to assess the impact that a novel applied e-drama pilot intervention had on a sample of junior nurses (n = 37) drawn from a tertiary nursing programme in Singapore. Quantitative findings through paired-sample t-tests (pre-post design) indicated that participants post-intervention were observed to have higher levels of empathy, compassionate competence, satisfaction with life and lower perceived stress. Responses on the post-evaluative survey also showcased a positive trend. Qualitative findings from the Focus Group Discussions (FGDs) uncovered five major and seven sub-themes. The major themes included: 1) Intervention Interest; why participants chose to join the workshop, 2) Compassionate Introspection; or instances of sensitive inward exploration, 3) Key Lessons, Skills and Insights; what they learned and took away from the intervention, 4) Teaching Medium; how they felt about the virtual format, and 5) Scaffolding Solutions; their suggestions for future iterations of the intervention. Overall an applied drama virtual pedagogy was found to be a viable and effective method to engage junior nurses and afford them a key opportunity to consider and practice the humanistic value of their work. Interventions such as those developed in Study IV can become the catalyst in moving to HPPC with greater rigor locally. The current thesis is an unprecedented series of studies that holistically examined dignity at the end of life for Singaporean patients and their families within the palliative care setting. Through a rigorous multi-modal approach empirically guided by contemporary academic literature and frames of reference, the present work built on existing knowledge, evaluated a novel intervention specific to the cultural context, expounded on the nature of culturally-specific, dignified dying through the ken of food and culminated by developing and piloting an innovative workshop to teach humanistic values to junior healthcare professionals. Limitations of the work are additionally discussed, with practical recommendations and clinical implications proffered, together with future directions that encompass a holistic care ecosystem for dying individuals and their families.