Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

Background  Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care. Objective  To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP. Design  Qualitative cross-sectional study. Participants  Caregivers of community-dwelling persons age ≥ 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study. Approach  In-depth interviews were conducted 6 months after the patient’s death with 64 caregivers. Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient’s experiences at the end of life. Additional questions asked about how decisions were made, patient–caregiver, patient–clinician, and caregiver–clinician communication. Main Results  Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient’s illness, and 4) difficulties with patient–caregiver communication. Discussion  The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient–caregiver communication. Presented at the 2006 annual meeting of the American Geriatrics Society. Supported by grant PCC 02–192 from VA HSR&D, R01 AG19769 from the National Institute on Aging, and a Paul Beeson Physician Faculty Scholars Award. Dr. Fried is supported by K24 AG28443from the National Institute on Aging.     

Hospice as Experienced by LTC Nurses and Their Perception of Resident Experiences

Objectives: This study utilized qualitative methods to better understand long-term care (LTC) nursing staff’s experience with hospice services and their perceptions of resident choice to utilize hospice services, as well as understand differences LTC nurses have experienced in regards to resident deaths. Methods: Interpretative Phenomenological Analysis (IPA) was utilized to extract themes and subthemes from 10 interviews that occurred with LTC nursing staff. Content analysis was also utilized to extract one noteworthy concept, which was a comparison of two resident deaths, with and without the utilization of hospice services.Results: Three main themes were extracted from the data: LTC nursing participant’s positive view of hospice, their perception that residents view hospice very negatively, and why residents choose to utilize hospice services. Participants also identified aspects of a “bad” or “good” death, with clear relationships noted when using hospice services. Conclusions: Findings identified a difference between the LTC nursing staff’s positive view of hospice and their belief that their residents view hospice services very negatively. According to these nurses’ experiences, to most residents, hospice meant something rather negative and feared. Clinical Implications: An intervention providing information about hospice services for LTC resident population may increase the percentage of older adults who utilize hospice services.     

Old age, life extension, and the character of medical choice

OBJECTIVES: This qualitative, ethnographic study explores the character and extent of medical choice for life-extending procedures on older adults. It examines the sociomedical features of treatment that shape health care provider understandings of the nature of choice, and it illustrates the effects of treatment patterns on patients' perspectives of their options for life extension. METHODS: By using participant observation in outpatient clinics and face-to-face interviews, we spoke with a convenience sample of 38 health professionals and 132 patients aged 70 or older who had undergone life-extending medical procedures. We asked providers and patients open-ended questions about their understandings of medical choice for cardiac procedures, dialysis, and kidney transplant. RESULTS: Neither patients nor health professionals made choices about the start or continuation of life-extending interventions that were uninformed by the routine pathways of treatment; the pressures of the technological imperative; or the growing normalization, ease, and safety of treating ever older patients. We found a difference among cardiac, dialysis, and transplant procedures regarding the locus of responsibility for maintaining and extending life. DISCUSSION: Provider and patient practices together reveal how the standard use of medical procedures at ever older ages trumps patient-initiated decision making.     

The personal and social context of planning for end-of-life care

OBJECTIVES: To examine the potential facilitators of or deterrents to end-of-life planning for community-dwelling older adults, including personal (health-related and sociodemographic) and social (physician and family) influences. DESIGN: In-person interviews with older adults, telephone interviews with physicians and family members. SETTING: Cleveland, Ohio. PARTICIPANTS: Two hundred thirty-one adults aged 65 to 99 who were aging in place, 99 of their primary care physicians, and 127 of their family members. MEASUREMENTS: Questions assessing older adults' discussions with others about end-of-life plans, implementation of advance directives, and physical (Older American Resources and Services) illness index and mental (Short Portable Mental Status Questionnaire) health status. RESULTS: Just fewer than half of older adults had executed an advance directive and discussed their wishes with others. Only personal characteristics of elderly individuals were related to end-of-life plans, with whites, unmarried individuals, and younger adults more likely to have made preparations. Older adults' health status, as evaluated by the patient, physician, and caregiver, did not relate to the tendency to have made advance care plans. Older adults' family members were much more likely to report knowledge of advance care plans than were physicians. CONCLUSION: These findings suggest that many physicians are not talking with their patients about their end-of-life wishes. Furthermore, the propensity to have such discussions may relate more to the personal preferences and level of comfort of patients, physicians, and family members than on the health status of the older adult.     

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.     

Advance care planning and end-of-life care for hospitalized nursing home residents

OBJECTIVES: To describe advance care planning (ACP) and end-of-life care for nursing home residents who are hospitalized in the last 6 weeks of life. DESIGN: Constant comparative analysis of deceased nursing home resident cases.SETTING: A not-for-profit Jewish nursing home. PARTICIPANTS: Forty-three deceased residents hospitalized within the last 6 weeks of life at a tertiary medical center. MEASUREMENTS: Trained nurse reviewers abstracted data from nursing home records and gerontological advanced practice nurse field notes. Clinical and outcome data from the original study were used to describe the sample. Data were analyzed using the constant comparative method and validated in interviews with a gerontological advanced practice nurse and social worker. RESULTS: The analysis revealed distinct characteristics and identifiable transition points in ACP and end-of-life care with frail nursing home residents. ACP was addressed by social workers as part of the nursing home admission process, focused primarily on cardiopulmonary resuscitation preference, and reviewed only after the crisis of acute illness and hospitalization. Advance directive forms specifying preferences or limitations for life-sustaining treatment contained inconsistent language and vague conditions for implementation. ACP review generally resulted in gradual limitation of life-sustaining treatment. Transition points included nursing home admission, acute illness or hospitalization, and decline toward death. Relatively few nursing home residents received hospice services, with most hospice referrals and palliative care treatment delayed until the week before death. Most residents in this sample died without family present and with little documented evidence of pain or symptom management. CONCLUSION: Limiting discussion of advance care plans to cardiopulmonary resuscitation falsely dichotomized and oversimplified the choices about medical treatment and care at end-of-life, especially palliative care alternatives, for these older nursing home residents. Formal hospice services were underutilized, and palliative care efforts by nursing home staff were often inconsistent with accepted standards. These results reinforce the need for research and program initiatives in long-term care to improve and facilitate individualized ACP and palliative care at end of life.     

Death at Home Following a Targeted Advance-Care Planning Process at Home: The Kitchen Table Discussion

OBJECTIVE: To determine whether home health agency patients' preferences to die at home can be honored following a structured, professionally facilitated advance-care planning (ACP) process provided in the home. DESIGN: A case series of patients who were identified by their home health agency nurses as having a life-limiting illness and then referred for social service assessment, followed for at least 6 months, with median follow-up of 191 days. SETTING: A large, urban, home health agency owned by a not-for-profit integrated healthcare system. PARTICIPANTS: Eighty-four adult patients (median age 75, range 37-94) receiving home care services other than hospice. INTERVENTION: Formally structured social work visits at patients' homes to discuss end-of-life issues, with communication of results to home health nurses and attending physicians. Social workers performed standard psychosocial assessments, obtained patient and family preferences regarding end-of-life care, and provided education about hospice services. MEASUREMENTS: Acceptance of the ACP process, preferences for location of end-of-life care, location of care at the end of life, adequacy of timing of intervention as measured by length of life after ACP, and use of hospice services. RESULTS: Eighty-three of 84 participants (99%) were willing to complete an ACP process in the home setting. Of the 54 patients expressing a clear preference for location of end-of-life care, 46 (82%) wanted this care to be at home. Thirty-nine (46%) of the participants died within 90 days of ACP; 58 (69%) died by the end of the study. Forty-three (75%) of these deaths occurred at home or in a hospice residence. Fifty-one (61%) patients used home, residential, or nursing home-based hospice services during the study. CONCLUSION: In this series of seriously ill home health patients, most preferred to die at home and virtually all were willing to participate in a home-based ACP process. Facilitating ACP among such patients and their families was associated with end-of-life care at home. Use of hospice services was common following ACP in this population.     

Rehabbed to Death: Breaking the Cycle

Many older adults transfer from the hospital to a post‐acute care (PAC) facility and back to the hospital in the final phase of life. This phenomenon, which we have dubbed “Rehabbing to death,” is emblematic of how our healthcare system does not meet the needs of older adults and their families. Policy has driven practice in this area including seemingly benign habits such as calling PAC facilities “rehab.” We advocate for practice changes: (1) calling PAC “after‐hospital transitional care,” rather than “rehab”; (2) adopting a serious illness communication model when discussing new care needs at the end of a hospitalization; and (3) policies that incentivize comprehensive care planning for older adults across all settings and provide broad support and training for caregivers. In realigning health and social policies to meet the needs of older adults and their caregivers, fewer patients will be rehabbed to death, and more will receive care consistent with their preferences and priorities. J Am Geriatr Soc 67:2398–2401, 2019     

End-of-life health care planning among young-old adults: an assessment of psychosocial influences

OBJECTIVES: End-of-life planning among healthy older adults may protect them from unwanted medical treatments in later life, in the event that they become incapable of making health care decisions for themselves. We explore two formal and one informal components of end-of-life planning (living will, durable power of attorney for health care, and discussions) and assess whether one's health and health care encounters, personal beliefs, and experience with others' deaths affect these practices. METHODS: Using two waves of data (1992-1993 and 2004) from the Wisconsin Longitudinal Study, we estimated binary and multinomial logistic regression models to predict end-of-life preparations among a sample of community-dwelling persons aged 64-65 (N=3,838). RESULTS: Recent hospitalizations, personal beliefs (Death Avoidance and the belief that doctors should control health care decisions), and recent experience with the painful death of a loved one all influence end-of-life preparations. Consistent with past studies, we also found that education, gender, marital status, and religious affiliation affect end-of-life planning. DISCUSSION: Health care providers may encourage end-of-life preparations by assuaging patients' death anxiety and fostering decision-making autonomy. Initiating discussions about recent deaths of loved ones may be an effective way to trigger patients' own end-of-life preparations.     

Racial variations in end-of-life care

OBJECTIVES: To identify differences in advanced care planning and end-of-life decision-making between whites and blacks aged 70 and older. DESIGN: The Asset and Health Dynamics Among the Oldest Old (AHEAD) study is a nationally representative survey of adults who were aged 70 and older in 1993. Relatives (proxy respondents) for 540 persons who died between the first (1993) and second (1995) waves of the study were surveyed about advanced care planning and end-of-life decisions that were made for their family member who died. SETTING: Respondents were interviewed at home by telephone (n = 444) or in person (n = 95). PARTICIPANTS: The 540 proxy respondents included 454 whites and 86 blacks. MEASUREMENTS: Questions were asked about advance care planning and end-of-life decisions. RESULTS: Whites were significantly more likely than blacks to discuss treatment preferences before death (P = .002), to complete a living will (P = .001), and to designate a Durable Power of Attorney for Health Care (DPAHC) (P = .032). The treatment decisions for whites were more likely to involve limiting care in certain situations (P = .007) and withholding treatment before death (P = .034). In contrast, the treatment decisions for blacks were more likely to be based on the desire to provide all care possible in order to prolong life (P = .013). Logistic regression models revealed that race continued to be a significant predictor of advance care planning and treatment decisions even after controlling for sociodemographic factors. CONCLUSIONS: These findings suggest that there are important differences between blacks and whites regarding advanced care planning and end-of-life decision-making. Health professionals need to understand the diverse array of end-of-life preferences among various racial and ethnic groups and to develop greater awareness and sensitivity to these preferences when helping patients with end-of-life decision-making.     

Place of death and associated gender difference in Korea 2006–2014: Evidence from exit interviews of the Korean Longitudinal Study of Ageing

Previous research has revealed that many people wish to die at home; however, most die in healthcare institutions. This study explored factors related to the place of death and gender differences in this regard among older adults in South Korea. Participants included older adults from the Korean Longitudinal Study of Ageing. Multinomial logistic regression was used to examine relationships between place of death and relevant factors. Most older adults died in hospitals, followed by at home and in assisted living residences. Hospital and assisted living residence deaths increased while home deaths decreased. In both men and women, higher daily living dependency increased the probability of dying in an assisted living residence. Women were more likely to die in assisted living residences than men, and for persons living in urban areas, there was a decreased likelihood of home death only in women. Findings support that end-of-life care is performed mostly by institutions in Korea and there are gendered patterns. To achieve aging in place, the place of death and community-based terminal care should be more considered when implementing long-term care policies.     

Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care

This study investigated racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Ten focus groups and a follow-up survey were conducted to obtain in-depth information on end-of-life preferences across five racial/ethnic groups in Michigan stratified by sex. There were 73 focus group participants, including Arab Muslims, Arab Christians, Hispanics, blacks, and whites. The mean age+/-standard deviation was 67+/-8.5 (range 50-83). A focus group screener was used to recruit participants. A moderator discussion guide was used to guide the focus groups. A take-home questionnaire asked about demographic information and end-of-life issues. Arab Americans were in favor of making peace on earth and were against assisted suicide, extending life artificially, nursing homes, and telling the patient "bad news." Hispanic and black women were against assisted suicide and in favor of extending life, whereas the men in these groups felt the opposite. Hispanic women spoke of not wanting a feeding tube and would consider alternative medicine. Blacks were least opposed to nursing homes. For whites, it was important to have choices. When asked about discrimination related to end-of-life care, Muslim women spoke of cultural barriers, blacks spoke of inequities in the past, and whites spoke of age discrimination and abandonment when dying. As the population becomes more diverse and continues to age, it will be important to provide culturally and sex-sensitive end-of-life interventions to increase patient/family satisfaction and allocate resources appropriately.     

Advance directive completion rates and end-of-life preferences in Hawaii

To estimate rates of advance directive completion, preference for in-home death and hospice services at life's end, and support for physician assistance in dying, questions were added to two statewide, random-sample telephone surveys-the 1998 Behavioral Risk Factor Surveillance System (N=2,153) and the 1999 OmniTrak health survey (N=700). Data were compared across age, ethnic, and gender groups. Overall, 29% of Hawaii residents had a living will, 22% had a healthcare power of attorney, 65% said they would prefer a home death, 60% would want hospice services, 64% believed a person had a moral right to end his or her life when faced with an incurable illness, and 63% felt doctors should be allowed by law to end a patient's life if the patient and his or her family requested it. Advance directive completion rates increased with age, desire for an in-home death varied by gender and ethnicity, and support of assisted-death options varied by ethnicity. Despite a large minority population, end-of-life preferences among the general population in Hawaii are similar to those of U.S. mainlanders. However, age, gender, and ethnic differences exist. Clinicians are encouraged to ask patients directly about their preferences as a first step toward improving end-of-life care.     

Attitudes of Asian-Indian Hindus toward end-of-life care

The population of older adults in the United States is increasing in cultural diversity. Thus, an appreciation of cultural perspectives regarding end-of-life care may benefit practicing physicians. This article addresses end-of-life care issues from the perspective of Hinduism--a faith embraced by a growing demographic of the U.S. population-and also reviews basic Hindu philosophical concepts salient to caring for patients at the end of life.     

Death and dying from old people's point of view. A literature review

Providing high-quality end-of-life care to older people is a requirement especially for countries with a high proportion of old and very old people. This calls for an understanding of older people's view of death and dying, and one way forward is to investigate the current knowledge base. This study aimed at reviewing the literature of empirical studies about older people's view of death and dying, whether in a terminal phase of life or not. A total of 33 publications were included, identified in a stepwise literature search done in Medline, CINAHL and PsychInfo, using the terms "death", "attitude to death", "death" and "dying" in combination with "aged". Very few studies focused solely on the oldest old. The designs were mainly cross-sectional, quantitative or qualitative, using personal interviews. Some common themes of importance for further research were revealed, such as older people's readiness to talk about death and dying, conceptions of death, after-death and dying, and were seemingly related to anxiety about death, the impact on and of those close by, having both negative and positive connotations, especially related to balancing closeness, being a burden and dependency, death anxiety and its possible antecedents, the fine line between natural sadness and suffering from depression, and worry about the end-of-life phase. The lack of studies dealing with older people's view of death and dying, and the heterogeneity with regard to research questions and samples implies that findings may serve mainly as inspiration for further research.     

Perceived Educational Needs and Preparation of Adult Protective Services Workers for Practice with End-of-Life Issues

As the number of older adults in the United States increases, so will the expected number of allegations of elder abuse. Adult protective services (APS) staff are likely to handle much more complex situations, and in growing numbers, due to the presence of chronic and life-limiting conditions of their clients. The APS workers, in this national study, identified frequent encounters with older adults with serious illnesses. However, less than one half received educational content about issues of death and dying in their degree programs, and only slightly more than one half reported ever attending a continuing education program on these topics. They perceived the greatest educational need for content about practical resources, the use of advance directives, and making end-of-life decisions. The indication also given by these respondents was that end-of-life issues were among the most difficult situations they faced in practice. This warrants a call for increased end-of-life content in educational degree programs and continuing education.