A Social Capital Perspective on Social-Medical Collaboration in Community End-of-Life Care in Hong Kong

Recent developments in Hong Kong end-of-life (EOL) care have shifted some caring work for dying people and their families to cross-disciplinary collaboration in community settings. Social-medical collaboration becomes especially important. This study aims to use social capital as an analytical lens to examine the processes and mechanisms of social-medical collaboration in EOL care and elucidate practice implications for engaging in the care of dying people and their families. Qualitative data were collected using in-depth interviews. Three major conceptual categories were generated through grounded theory methodology. They are (a) establishing trust through keeping clear and simple boundaries, (b) cultivating mutuality in the multi-disciplinary meeting, and (c) fostering social-medical collaboration in EOL care. Each new stage is based on the social capital accumulated in the previous one through the social interactions between professionals. Such theorization also provides insights into how to achieve effective social-medical collaboration in this context.

An Intensive Care Unit Team Reflects on End-of-Life Experiences With Patients and Families in Chile

Background Deaths in the intensive care unit (ICU) represent an experience of suffering for patients, their families, and professionals. End-of-life (EOL) care has been added to the responsibilities of the ICU team, but the evidence supporting EOL care is scarce, and there are many barriers to implementing the clinical recommendations that do exist. Objectives To explore the experiences and perspectives of the various members of an ICU care team in Chile regarding the EOL care of their patients. Methods A qualitative study was performed in the ICU of a high-complexity academic urban hospital. The study used purposive sampling with focus groups as a data collection method. A narrative analysis based on grounded theory was done. Results Four discipline-specific focus groups were conducted; participants included 8 nurses, 6 nursing assistants, 8 junior physicians, and 6 senior physicians. The main themes that emerged in the analysis were emotional impact and barriers to carrying out EOL care. The main barriers identified were cultural difficulties related to decision-making, lack of interprofessional clinical practice, and lack of effective communication. Communication difficulties within the team were described along with lack of self-efficacy for family-centered communication. Conclusion These qualitative findings expose gaps in care that must be filled to achieve high-quality EOL care in the ICU. Significant emotional impact, barriers related to EOL decision-making, limited interprofessional clinical practice, and communication difficulties were the main findings cross-referenced.

Factors that Influence End-Of-Life Decision Making Amongst Attending Physicians

Background: Medical advances prolong life and treat illness but many patients have chronically debilitating conditions that prevent them from making end-of-life (EOL) decisions for themselves. These situations are difficult to navigate for both patient and physician. This study investigates physicians’ feelings and approach toward EOL care, physician-assisted suicide (PAS), and euthanasia. Methods: An anonymous, self-administered online survey was distributed through the New Jersey Medical School servers and American College of Surgeons forums. The survey presented clinical EOL vignettes and subjective questions regarding PAS and euthanasia. Results: We obtained 142 responses from attending physicians. Respondents were typically male (61%), married (85%), identified as Christian (54%), had more than 20 years of experience (55%), and worked at a university hospital (57%). Religious beliefs and years of work experience seemed to be significant contributors in EOL decision making, whereas gender and medical specialty were not significantly influential. Conclusion: Factors such as years of work experience and religious belief may influence medical professionals’ opinions about PAS and euthanasia and their subsequent actions regarding EOL care. In many cases, the boundaries are blurred and require further study before concrete conclusions can be made.

Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants’ responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient’s terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient’s needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs’ expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.

Family Conflict and Older Chinese Americans’ Self-Efficacy in End-of-Life Care Planning: The Role of Acculturation

Family involvement in end-of-life (EOL) care is critical to ensure older adults’ health and quality of life. Older adults’ self-efficacy in discussing EOL care plans with family members can facilitate family involvement in EOL care planning. Research shows that family relationships are associated with self-efficacy in discussing EOL care with family members among older Chinese Americans. However, the roles of family conflict and acculturation remain unknown. This study examines the association between family conflict and self-efficacy in discussing EOL care with family members and whether such an association differs by acculturation levels among older Chinese Americans. Data were collected from 207 Chinese Americans aged 65-102 in two metropolitan areas in 2017. Ordinary least squares regression was conducted to examine the association between family conflict, acculturation, and self-efficacy in discussing EOL care with family. Family conflict was negatively associated with older adults’ self-efficacy in discussing EOL care with family. More specifically, the negative association between family conflict and self-efficacy in discussing EOL care with family members was more pronounced for those with higher levels of acculturation. Findings highlighted differential effects of family conflict on self-efficacy of EOL care plan discussion for older adults with different acculturation levels. Those with higher acculturation may be more independent in their EOL care planning and aware of the possible negative effects of family conflict in their EOL care planning discussions. Acculturation needs to be considered by geriatric health providers to develop family-centered interventions in improving end-of-life care planning for this population.

Change of Health and Change of Preferences on Life-Sustaining Treatment: Evidence From a Longitudinal Study

Background Decision-making for end-of-life (EoL) care is not a one-off choice. Older adults may change their preferences for life-sustaining treatments along their health continuum. Guided by prospect theory, we hypothesize that perceived change in health status is a driver behind preference changes. Method: Health and Retirement Study Wave 2012 to 2018 data. Sample is limited to 5,646 older adults who reported whether they requested to limit treatment in living will during two waves of data. Two possible preference changes were tested: from limited to default care and from default to limited care. Change in health status was indicated by changes (1=same, 2=improve, 3=decline) in physical pain, general health, activities of daily living, instrumental activities of daily living (IADL), and number of diagnoses. Multilevel logistic regression models were used to understand how change of health status was related to changes in EoL preferences. Results 700 older adults changed their preferences some time in 8 years. Those who changed their preferences are more likely to be older and not married, and to have lower socioeconomic background. Older adults who experienced deteriorated pain levels were more likely to change their preferences from default to limited care (OR=3.77, p<.05) and less likely to change from limited to default care (OR=0.63, p<.05). Change in IADL is also a significant predictor of change of preferences. Implication: The findings highlight the importance of periodic reassessment of EoL care preferences with older adults. We discuss policy and practice implications regarding health changes as underlying mechanisms of preference changes.

Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

Background Overtreatment in advanced age i.e. aggressive interventions that do not improve survival and are potentially harmful, can impair quality of care near the end of life (EOL). As healthcare provider perspectives on care quality may differ from that of service users, the aim of this study was to explore the views of older patients near EOL or their caregivers about the quality of health care at the EOL based on their lived experience, and to identify healthcare service improvements. Methods Medline and backward citation searches were conducted for qualitative or quantitative studies reported on the views of patients and/or informal caregivers about EOL care quality. Thematic analysis was used to summarise qualitative data (primary analysis); narrative and tabulations were used to summarise quantitative data (secondary analysis). Results Thirty articles met the inclusion criteria. Five main qualitative themes regarding quality care emerged: (1) Effective communication between clinicians and patients/caregivers; (2) Healthcare that values patient preferences and shared decision making; (3) Models of care that support quality of life and death with dignity; (4) Healthcare services that meet patient expectations; and (5) Support for informal caregivers in dealing with EOL challenges. The quantitative articles supported various aspects of the thematic framework. Conclusion The findings of this study show that many of the issues highlighted by patients or bereaved relatives have persisted over the past two decades. There is an urgent need for comprehensive evaluation of care across the healthcare system and targeted redesign of existing EOL care pathways to ensure that care aligns with what patients and informal caregivers consider high-quality patient-centred care at the EOL.

Being Heard: A Qualitative Study of Lithuanian Health Care Professionals’ Perceptions of Dignity at the End-of-Life

Background: The literature on professionals’ perceptions of dignity at the end-of-life (EOL) shows that there is a need for studies set in different cultural contexts. Lithuania represents one of these little-studied contexts. The aim of this study is to understand professionals’ attitudes, experiences, and suggestions concerning EOL dignity to provide knowledge upon which efforts to improve EOL care can be grounded. The research questions are “How do Lithuanian health care professionals understand the essence of dignity at the end-of-life of terminally ill patients?” and “How do they believe that dignity at the EOL can be enhanced?”. Materials and Methods: The study was exploratory and descriptive. It employed an interpretive phenomenological method to understand the essence of the phenomenon. Lightly structured interviews were conducted with professionals who had EOL experience, primarily with elderly and late middle-aged patients. from medicine, nursing, social work, and spiritual services. The interviews were primarily conducted by audiovisual means due to pandemic restrictions. Using a constant comparative method, the research team systematically codified text and developed themes by consensus after numerous analytic data iterations. Results: Four primary themes about EOL dignity were identified: Physical Comfort, Place of Care and Death, Effects of Death as a Taboo Topic, and Social Relations and Communication. A fifth, overarching theme, Being Heard, included elements of the primary themes and was identified as a key component or essence of dignity at the EOL. Conclusions: Patient dignity is both a human right and a constitutional right in Lithuania, but in many settings, it remains an aspiration rather than a reality. Being Heard is embedded in internationally recognized patient-centered models of EOL care. Hearing and acknowledging individuals who are dying is a specific skill, especially with elderly patients. Building the question “Is this patient being heard?” into practice protocols and conventions would be a step toward enhancing dignity at the EOL.

The Mediation Effects of Perceived Healthcare Discrimination on Racial and Ethnic Disparities in End of Life Care

Numerous studies demonstrate racial and ethnic differences in end-of-life (EOL) care, including place of death and hospice use. Experiencing discrimination in healthcare is often cited in the literature as a potent source explaining the pathways of the racial and ethnic disparities in EOL care. However, none of the studies have tested its mediating effects on racial and ethnic disparities in EOL care. The study examines if the effects of race and ethnicity on place of death and hospice use are mediated by perceived healthcare discrimination. This is a secondary analysis of 2008-2014 data from the nationally representative Health and Retirement Study, including oversampling of Blacks and Hispanics. Samples included 1,446 decedents aged 65 or older who completed an exit interview by proxy. Perceived healthcare discrimination was measured by a self-report of receiving poorer service or treatment than other people from doctors or hospitals. In multivariate analyses, Blacks were more likely to die at hospitals (OR=1.57, p < .05) than Whites. Those who experienced discriminatory healthcare were more likely to die at hospitals than those who never experienced discriminatory healthcare (OR=1.44, p < .05). However, the Karlson-Home-Breen (KHB) method showed no significant mediating effects of perceived healthcare discrimination on racial and ethnic disparities in place of death. Race and ethnicity did not affect hospice use. Although there is no mediating effect of healthcare discrimination on racial and ethnic disparities in EOL care, its direct impact is observed. The research contributes to evidence on the significant role of discrimination in healthcare choices.

Family Caregivers' Feelings of Preparedness for the Transition to End-Of-Life Caregiving

Family caregivers are vulnerable to emotional, psychological, physical, and financial stress during their care receiver’s end-of-life (EOL), and often do not have the knowledge or skills to provide the care needed at EOL. Yet, few studies have examined how prepared caregivers feel for making the transition to EOL care. The purpose of this exploratory study was to investigate how family caregivers perceive their preparedness for the transition to providing EOL care, and factors that may be associated with feelings of preparedness. Family caregivers (N = 252) providing care to an adult family member for more than six months were recruited to complete an online, self-report survey. An exploratory factor analysis was conducted to break down the construct of caregiver preparedness. One-way ANOVAs and a multiple regression were conducted to examine factors associated with preparedness. Most caregivers feel less prepared for the transition to EOL care (M = 2.67, SD = 1.17) than for general caregiving responsibilities (M = 3.42, SD = 0.90). Factors associated with preparedness for EOL caregiving included the familial relationship between the family caregiver and care receiver, hours per week providing care, perceived burden of caregiving, and family conversations completed about advance care planning, legal and financial matters, and EOL wishes. Future studies should explore how to help family caregivers recognize the importance of seeking support from family members and community services and discussing EOL care wishes and plans with aging family members so they can provide effective care and protect their own well-being.