Death and Dying: Boundaries and Roles of Families and Healthcare Workers During Patient End of Life

Abstract While death and dying often occur within or adjacent to the healthcare setting, grief & support of patients at end-of-life (EOL) remain largely within the realm of the family. Given this division of roles, healthcare workers intentionally set professional boundaries that balance their need to be empathetic and compassionate for patient and their families during EOL, while also maintaining a sense of objectivity and detachment which allows them to cope with patient loss and manage the competing demands of their workday. Tensions occur when healthcare workers are required to cross boundaries at EOL, either voluntarily or involuntarily. Using unobtrusive digital ethnography of a publicly accessible online forum for healthcare providers, this research investigates the boundaries set by families and healthcare workers at EOL, and how EOL circumstances sometimes require healthcare workers to cross or violate these professional boundaries. We suggest that the needs of the family at EOL (not necessarily the patient) serve as the catalyst for both boundary crossing & boundary violations for healthcare workers. Our data reveal that (1) boundary setting and training ought to address the patient-physician-family relationship (not just patient-physician), since the family members are such an integral part of EOL; (2) these EOL dynamics apply beyond the physician and should include all healthcare workers (nurses, etc.). As a result, patient & family centered care may not be fully achieved at EOL due to the ambiguity in the expected roles played by both families and healthcare workers during patient death and dying.

in the pervasive difficulties cluster were most likely to be filial caregivers (85% versus 63% of the full sample, p<0.05) or co-residing with the care recipient (49% versus 37% of the full sample, p<0.05).Caregivers identified as having pervasive difficulties were also more likely to report providing intensive care, more than 100 hours per week (54% versus 36% of the full sample, p<0.05).Care recipient condition was not associated with cluster membership.The findings highlight the need to consider caregiver coping at the tasklevel and have implications for understanding unmet needs.Future research will assess predictors of cluster membership and how task difficulties are associated with symptoms and well-being outcomes.

CHANGE IN MEDICAL AND HEALTH CARE DECISION-MAKING PATTERNS AT THE END-OF-LIFE: A COHORT OF THE VERY OLD PEOPLE
Xinran Liu, and Steven Albert, University of Pittsburgh, Pittsburgh, Pennsylvania, United States How does medical and healthcare decision-making among the very old people change in their last year before death?We explored patterns of decision-making in the Health ABC cohort study in 2011-14 (years 15-17), which involved 12 waves of quarterly phone interviews.When the participant was unable to do the interview, a proxy completed it instead.We identified a sample of 291 decedents (aged 90.0±2.9 at death, 35.7% Black, 52.6% female) with at least 1-year follow-up before death.Percentages of decedents who have made medical or healthcare decisions in the last four quarters before death were 32.0%, 31.2%,32.6%, 41.9%, respectively.Decedents made more healthcare decisions in the last quarter before death (P<0.01),compared to the baseline.Across all quarters, decision-making is most in need for medications (17.6%), hospital admission (13.2%), and ER/urgent care visit (13.2%).We matched a 1:1 sample of survivors at the time of death by race, sex, and age (within ±3 years).In random effects models with multiple imputations of missing data, we found that decedents were more likely to make healthcare decisions than survivors across all four quarters before death or censor (Odds ratio=1.99,95%CI: 1.49-2.65,P<0.01).The significance still held after adjusting for age, female, race, education, and interview methods.Overall, compared to matched survivors, the frequency of making medical and healthcare decisions among the very old decedents has already been high in the last year before death.This frequency rose sharply in the last quarter before death.

DEATH AND DYING: BOUNDARIES AND ROLES OF FAMILIES AND HEALTHCARE WORKERS DURING PATIENT END OF LIFE Amber Thompson, and Rebecca Utz, University of Utah, Salt Lake City, Utah, United States
While death and dying often occur within or adjacent to the healthcare setting, grief & support of patients at endof-life (EOL) remain largely within the realm of the family.Given this division of roles, healthcare workers intentionally set professional boundaries that balance their need to be empathetic and compassionate for patient and their families during EOL, while also maintaining a sense of objectivity and detachment which allows them to cope with patient loss and manage the competing demands of their workday.Tensions occur when healthcare workers are required to cross boundaries at EOL, either voluntarily or involuntarily.Using unobtrusive digital ethnography of a publicly accessible online forum for healthcare providers, this research investigates the boundaries set by families and healthcare workers at EOL, and how EOL circumstances sometimes require healthcare workers to cross or violate these professional boundaries.We suggest that the needs of the family at EOL (not necessarily the patient) serve as the catalyst for both boundary crossing & boundary violations for healthcare workers.Our data reveal that (1) boundary setting and training ought to address the patient-physician-family relationship (not just patientphysician), since the family members are such an integral part of EOL; (2) these EOL dynamics apply beyond the physician and should include all healthcare workers (nurses, etc.).As a result, patient & family centered care may not be fully achieved at EOL due to the ambiguity in the expected roles played by both families and healthcare workers during patient death and dying.

EMBALMING, VIEWING AND THE SOCIAL CONSTRUCTION OF THE CORPSE: TIME FOR ANOTHER LOOK
Redmond Finney, 1 Lisa Shulman, 1 and Raya Kheirbek, 2 1.University of Maryland School of Medicine, Baltimore, Maryland, United States, 2.

University of Maryland School of Medicine, University of Maryland School of Medicine, Maryland, United States
Embalming of the dead is more common in the United States than anywhere else in the world.Battles far from home during the Civil War with concern for contagion from dead bodies being shipped home, compelled President Lincoln to direct the troops to use embalming to allow the return of the Union dead to their homes.Viewings were common with war heroes and culminated with the viewing of Lincoln himself.In the 20th century embalming became a tradition despite substantial evidence indicating environmental and occupational hazards related to embalming fluids and carbon dioxide generated from manufacturing steel coffins before placing in concrete burial vaults.Embalming is promoted and considered helpful to the grieving process when families are comforted by a the appearance of a peaceful death.Embalmers are expected to produce an illusion of rest, an image that in some ways disguises death for the benefit of mourners.The dead are carefully displayed in a condition of liminal repose where the 'true' condition is hidden, and death is removed from the actual event.In this paper we highlight the spiritual and cultural complexities of embalming related-issues.We also provide data on the lack of grieving families' preparedness for the financial burden associated with the death of a loved one and the lack of knowledge of alternative options.We propose an innovative process to empower people facing serious illness, and their families to make shared and informed decisions, especially when death is the expected outcome.

EMOTIONAL INTELLIGENCE SKILLS ENHANCE RESPONSIVE CARE OF HOSPITALIZED OLDER PATIENTS
Eva Kahana, and Polina Ermoshkina, Case Western Reserve University, Cleveland, Ohio, United States Our previous research focused on the value of creative problem-solving in late life (Kahana, Kahana, & Ermoshkina, 2021).This paper considers the role of emotional intelligence in creative problem-solving for improving late-life medical care experiences.Emotional intelligence, which is situated at the intersection between the domains of intelligence and personality, can serve as a useful resource promoting personal and social adaptation to problems of old age.Our paper argues for the usefulness of emotional intelligence as older adults deal with challenges of the health care system.Emotional intelligence is rarely studied in gerontological research.Yet, it is required to overcome lack of attention to the patient experience and to provider-patient communication.Problems in communication with staff and in obtaining responsive care are prevalent for hospitalized older adults due to lack of continuity of care as unfamiliar "hospitalist" physicians typically offer care to frail elders.A key adaptive task of older patients involves securing investment by overworked health care providers.A friendly and extraverted self-presentation by older patients signals to the health care provider the social worth of the patient.Such demeanor can go a long way toward eliciting interest and caring responses from providers.Our paper offers a taxonomy of patient behaviors that can facilitate patient-centered care.Emotional intelligence shown by older patients reflected in expressions of appreciation for staff is likely to facilitate the interest of medical and nursing staff.Potential interventions to foster emotional intelligence among older patients will also be discussed.

FACILATORS AND BARRIERS TO ADVANCE CARE PLANNING ENGAGEMENT AMONG CHRONIC KIDNEY PATIENTS IN TAIWAN
YuHsuan (Olivia) Wang, 1 and Susan Enguidanos, 2 1. USC, Los Angeles, California, United States, 2. University of Southern California, Los Angeles, California, United States End-Stage Renal Disease (ESRD) patients experience high rates of cognitive impairment and lower quality of life at end of life.Having an advance care planning (ACP) conversation is associated with better care at end of life and improved care consistency with patient preferences.Taiwan ranks highest in ESRD and dialysis incidence worldwide, highlighting the importance of ACP among this population.Since 2019, the Patient Autonomy Act entitled Taiwanese to engage in ACP, but strategies to promote its uptake and the role of healthcare providers and caregivers in ACP conversations remains unclear.This study aimed to investigate facilitators and barriers to ACP engagment among Taiwanese with kidney disease and their caregivers.In 2020, we recruited 18 adults with stage 3-5 kidney disease and their caregivers.We conducted semi-structured interviews to elicit knowledges and perspectives on ACP.A grounded theory approach was used to guide the analysis of primary themes.Two researchers independently coded the transcripts and met to reconcile codes.The primary barrier to ACP was the misconception that it equated to funeral arrangements.Themes related to ACP facilitators included: trust in the nephrology care team (especially in case managers); straighforward communication; and in-person consultations.Additionally, transplant patients were more likely to have ACP discussions with their loved ones.While kidney disease patients preferred