Jung Kwak

Attitudes and Preferences of Korean-American Older Adults and Caregivers on End-of-Life Care

A growing body of literature suggests that diverse attitudes toward the end of life exist across and within ethnic minority groups. This focus‐group pilot study examined social and cultural factors influencing views of Korean‐American older adults and caregivers on advance care planning and hospice care. A total of 20 older adults and 16 caregivers in west central Florida participated in one of four focus groups. This study found diverse attitudes among Korean Americans toward end‐of‐life care and cultural and structural barriers to advance care planning and hospice use. Older adults and caregivers both expressed a lack of knowledge about advance care planning and hospice and agreed that the family would make the final decision about the end‐of‐life care, while acknowledging the challenge of initiating communications about treatment preferences. They interpreted the Korean value of filial piety to support both curative and palliative treatment. The traditional norm of home death and importance of physician communication influenced preferences for hospice and advance care planning, respectively. Future outreach and education efforts should include development of culturally sensitive educational and communication tools and collaboration with ethnic community organizations and healthcare providers in the dissemination and education of these instruments.

Impact of TimeSlips, a Creative Expression Intervention Program, on Nursing Home Residents With Dementia and their Caregivers

PURPOSE Creative expression (CE) programs are emerging interventions to improve the quality of care and life of persons with dementia (PWDs) in long-term care settings. However, limited empirical evidence exists to support the effectiveness of these programs. Here, we report the findings from an assessment of the impact of TimeSlips (TS), a group storytelling program that encourages CE among PWDs and those who care for them. DESIGN AND METHODS Instruction in TS was provided through a 10-week on-site training. An observational study using an experimental design was conducted in 20 nursing home facilities in 2 states, 10 of which were randomly selected to implement TS. Two weeks after the implementation of TS at the intervention sites, we conducted 4 days of direct observation, using a time-sampling approach, of residents and staff in each facility. Using surveys, we also assessed staff job satisfaction, attitudes toward residents, and burnout. RESULTS Compared with residents in the control facilities, those in the TS facilities were more engaged and more alert. In TS facilities, there were more frequent staff-resident interactions, social interactions, and social engagement. Also, staff who participated in the TS program had more positive views of residents with dementia and devalued residents less than did the control group staff. There were no differences in staff job satisfaction and burnout among staff in the TS and non-TS facilities. IMPLICATIONS Implementing the TS program in nursing facilities improves the care environment for PWDs. However, additional studies are needed to offer further insights into the mechanisms by which TS improves both staff and resident outcomes.

Forget Me Not: Dementia in Prison.

The number of older adults with dementia in U.S. prisons is rapidly rising. Yet, the vast majority of this marginalized subgroup of the aging population is left neglected behind bars without access to adequate medical and mental health care services. We assert that proactive, interdisciplinary collaborative efforts to improve practice, policy, and research and to develop a high-quality evidence-based continuum of care for this aging population are urgently needed. The overarching goals of this paper are to raise awareness of the life and experiences of persons with dementia in prison and to stimulate discussion, research, and advocacy efforts for this forgotten subgroup of older Americans. We describe the growing number of older adults with dementia in U.S. prisons, high-risk factors for dementia present in the prison population, and the life and experience of persons with dementia in the culture and environment of prison that is primarily not designed for them. We review the current state of services and programs for dementia in prison. We conclude by proposing practice, policy, and research-related priority areas and strategies for interdisciplinary gerontological responses.

Effects of the TCARE® Intervention on Caregiver Burden and Depressive Symptoms: Preliminary Findings From a Randomized Controlled Study

OBJECTIVES We examined the effects of a manualized care management protocol specifically designed for care managers working with caregivers, the Tailored Caregiver Assessment and Referral® (TCARE®) protocol, on caregiver identity discrepancy, burden, and depressive symptoms. METHODS Preliminary data from a longitudinal, randomized, controlled intervention study with 266 family caregivers served by 52 care managers in 4 states were analyzed using repeated measures random effects regression procedures. Caregivers in the intervention and control groups were repeatedly assessed for up to 9 months on caregiver identity discrepancy, 3 areas of caregiving burden-objective, relationship, and stress burdens; depression; and intention for nursing home placement. RESULTS We found significant group by time interaction effects for caregiver identity discrepancy, relationship burden, stress burden, depression, and intention for nursing home placement. Caregivers in the intervention group experienced significant improvement on these measures, whereas caregivers in the control group worsened on these measures over time. DISCUSSION The preliminary findings provide strong support for effectiveness of the TCARE® protocol on improving caregiver well-being and mental health outcomes.

TCARE: TAILORED CAREGIVER ASSESSMENT AND REFERRAL

An evidence-based model to target services for caregivers.

What Constitutes a Good and Bad Death?: Perspectives of Homeless Older Adults

This qualitative study explored perspectives toward a good or bad death among 21 older homeless adults residing in transitional housing. Using grounded theory approach, the themes for a good death were (a) dying peacefully; (b) not suffering; (c) experiencing spiritual connection; and (d) making amends with significant others. Themes for a bad death were (a) experiencing death by accident or violence; (b) prolonging life with life supports; (c) becoming dependent while entering a dying trajectory; and (d) dying alone. Healthcare professionals need to develop approaches for end-of-life care grounded in understanding unique needs of older homeless adults.

Validation of the Caregiving at Life’s End questionnaire

The researchers in this study developed and validated a questionnaire to measure the needs of end-of-life (EOL) caregivers. The model is used to facilitate meaningful and supportive experiences for both the patient and caregiver. The questionnaire was developed using existing scales of meaning, self-acceptance, burden, and gain as well as new scales of caregiver comfort, importance of caregiving tasks, and caregiver closure. The sample included 34 current and 17 bereaved caregivers affiliated with The Hospice Institute of the Florida Suncoast. The scales performed well in terms of concurrent validity, internal consistency, and reliability.

Advance care planning and proxy decision making for patients with advanced Parkinson disease.

Objectives To examine advance care planning practices and proxy decision making by family healthcare proxies for patients with advanced Parkinson disease (PD). Methods Sixty-four spouses and adult children, self-designated as a/the healthcare proxy for advanced patients with PD, participated in a cross-sectional survey study. Results Sixty patients with PD (95%) had completed a living will, but only 38% had shared the document with a physician. Among three life-support treatments—cardiopulmonary resuscitation (CPR), ventilator, and feeding tube—47% of patients opted for CPR, 16% for ventilator, and 20% for feeding tube. Forty-two percent of proxies did not know patients’ preferences for one or more of the three life-support treatments. Only 28% of proxies reported that patients wanted hospice. Patients who shared advance directives with a physician were significantly less likely to choose CPR and a feeding tube and they were more likely to choose hospice. In a hypothetical end-of-life (EOL) scenario, the majority of proxies chose comfort care as the EOL goal of care (53%) and pain and symptom management only as the course of treatment option (72%); these proxy choices for patients, however, were not associated with patients’ preferences for life support. Patients’ proxies preferred a form of shared decision making with other family members and physicians. Conclusions Advance care planning is effective when patients, families, and healthcare professionals together consider future needs for EOL care decisions. Further efforts are needed by healthcare professionals to provide evidence-based education about care options and facilitate advanced discussion and shared decision making by the patient and families.

Knowledge of advance directive and perceptions of end-of-life care in Chinese-American elders: The role of acculturation

OBJECTIVE This study aimed to describe knowledge of an advance directive (AD) and preferences regarding end-of-life (EoL) care communication, decision making, and designation of surrogates in Chinese-American elders and to examine the role of acculturation variables in AD awareness. METHOD Survey data were collected through face-to-face interviews on a sample of 385 Chinese-American elders aged 55 or above living in the Phoenix metropolitan area. The choice of language (Mandarin, Cantonese, or English) and place of interview (senior apartments, Chinese senior centers, or homes) was at the respondents preference. Hierarchical logistic regression analysis was employed to examine the influence of acculturation variables on AD awareness. RESULTS Some 21% of participants had heard about ADs, and only 10% had completed one. Elders with higher acculturation levels (OR = 1.04, p < 0.10) and those residing more than 20 years in the United States (OR = 6.87, p < 0.01) were more likely to be aware of ADs after controlling for the effects of demographics, health, and experiences of EoL care. The majority preferred physicians to initiate AD discussions (84.9%) and identified burdens on families as the most important factor in making EoL decisions (89.3%). About 55.1 % considered daughters as the preferred healthcare surrogate. SIGNIFICANCE OF RESULTS Acculturation levels influence awareness of an AD, and family values are crucial in EoL care decision making. Cultural factors should be considered in designing and delivering appropriate programs to promote knowledge of EoL care among Chinese-American elders and their families.

Advance Care Planning and End-of-Life Decision Making

Making critical treatment decisions when faced with life-threatening illness is often a very difficult, emotionally charged experience for individuals, families, and health care providers across various settings of care. Clinicians, researchers, and policy makers have made numerous efforts to promote individual self-determination and to improve communication and quality of care at the end-of-life (EOL), especially in the aftermath of the enactment of the Patient Self-Determination Act of 1990. Past research has provided important information documenting the complex interplay of various patient, family, and health care provider and system factors affecting how EOL decisions are made. This chapter reviews the current literature on advance care planning and decision making at the EOL. Specifically, this chapter describes the context in which older adults experience their illnesses and make important treatment decisions, and reviews what is known about health-related decision-making processes among older adults, the role of family members in the decision-making process, and how health care providers and care settings exert influence on these decisions. This chapter also reviews promising decision-support interventions developed to assist EOL decision making, gaps in current knowledge about EOL decision making, and implications for practice and future research.