Intergenerational Relations and Elder Care Preferences of Asian Indians in North Carolina

The US older population is growing in ethnic diversity. Persistent ethnic disparities in service use among seniors are linked to structural barriers to access, and also to family processes such as cultural preferences and intergenerational relations. There is sparse information on the latter issue for immigrant ethnic minority seniors. Information on the Asian group (the fastest growing senior sub-population) is extremely scarce, due to this group’s diversity in national, linguistic, and cultural origins. We conducted a qualitative study among community-dwelling Asian Indian families (including at least one member aged 60 years and older) in North Carolina to examine preferences of seniors and the midlife generation regarding elder care, and the role of intergenerational relations in desired care for elders, exploring the theoretical perspective of intergenerational relationship ambivalence. Our results suggest that cultural preferences, ambivalence in intergenerational relations, and regulations on health service eligibility among immigrant/transnational seniors and midlife adults influence preferences for elder care.     

End-of-life care at group homes for patients with dementia in Japan. Findings from an analysis of policy-related differences

In Japan, the number of group homes for patients with dementia (GHs) has been increasing in recent years. A growing number of elderly people now prefer to spend their final years in group homes or other long-term care facilities, a choice that their families support. The aim of this nationwide study is to clarify the current end-of-life care policies and practices of GHs. The subjects were 3701 managing directors of GHs. Data were collected through mailed, anonymous, self-reported questionnaires in 2003. The content of the questionnaires included: (1) general characteristics of the GH, (2) end-of-life care policies and experiences, (3) available end-of-life care services at the GH, (4) staff education concerning end-of-life care, and (5) types of information provided to users and families. The response rate was 45.6%. Many GHs had implemented progressive policies for end-of-life care. GHs with progressive policies for end-of-life care were found to have different backgrounds than those with regressive policies. Only a few GHs provided end-of-life care education for their staff. GHs with progressive policies for end-of-life care tended to have the following characteristics: availability of medical intervention within and outside of the GH, self-contained physical plant and staff education about end-of-life care. Further research is needed to determine the most effective end-of-life care systems for GHs.     

Remembering Sacrifices: Attitude and Beliefs Among Second-generation Korean Americans Regarding Family Support

Korean immigration peaked in the mid-1980s, so that large cohorts of post-1965 immigrants are now approaching or entering retirement. As the baby boomer generation ages, few studies have examined how the lack of retirement savings and eldercare plans combined with cultural expectations such as filial piety may pose challenges for aging Korean immigrants and their adult children. This exploratory study examines attitudes and beliefs among 1.5 and 2nd generation Korean American adults regarding filial expectations and support for aging immigrant parents. In-depth interviews conducted with 124 adult children of immigrants show that their attitudes and beliefs around filial care were primarily motivated by feelings of gratitude and a strong sense of responsibility toward their parents. In addition, because Korean immigrant parents often face language and financial barriers, adult children were preparing themselves for future support of their parents’ finances, health care and long-term care needs. Although both adult sons and daughters expressed a desire to care for their parents, adult daughters often discussed in detail their concerns and worries about future care of their parents. The findings of this paper illustrate how the intersections of gender, culture, and class inform attitudes and beliefs regarding aging and family support among Korean American families.     

Hospice: a place for healing and dying well

Caregivers of people with end-stage AIDS face difficult challenges in working with the young, disabled, and dying as they try to help these individuals learn to live and die well. A hospice, a place where people come to die, is based on the philosophy that death can be experienced as a meaningful stage of life. The role of the hospice counselor is to assist dying clients in moving toward inner peace and self-possession, the ultimate goal of dying well. Counselors and caregivers of people with AIDS find their clients dealing with denial, anger, and depression. In the residential hospice setting, staff daily face the need to respond to these issues and the dynamic nature of HIV disease in a community made up of residents, families, partners, volunteers, and other staff. The goal of a hospice is to establish an environment that allows growth, communication, and achievement, despite physical and emotional decline. Hospice care enables individuals to experience the full spectrum of life with all of its emotions while facing the reality of death.     

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.     

The end-of-life experience in long-term care: five themes identified from focus groups with residents, family members, and staff

PURPOSE: We designed this study to examine the end-of-life (EOL) experience in long-term care (LTC) based on input from key stakeholders. DESIGN AND METHODS: The study consisted of 10 homogeneous focus groups drawn from a purposive sample of LTC residents (2 groups; total n = 11), family caregivers (2 groups; total n = 19), paraprofessional staff (3 groups; total n = 20), and licensed/registered staff (3 groups; total n = 15) from five nursing homes and eight residential care/assisted living communities in North Carolina. We analyzed data by using grounded theory techniques to elicit manifest and latent themes. RESULTS: Five overarching themes emerged: (a) components of a good death in LTC, (b) normalcy of dying in LTC, (c) the role of relationships in the provision and receipt of care, (d) hospice contributions to care at the EOL in LTC, and (e) stakeholder recommendations for enhancing EOL care in these settings. Underlying these themes was one central category, closeness, based on physical proximity and frequency of contact. IMPLICATIONS: Findings suggest that promoting collaborative relationships among the four stakeholder groups, increasing social worker involvement, and removing barriers to hospice may enhance the EOL experience in LTC.     

Palliative care for patients with dementia: a national survey

OBJECTIVES: To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC. DESIGN: Telephone and Web‐based surveys. SETTING: U.S. hospice and PC programs from the National Hospice and Palliative Care Organization's program list. PARTICIPANTS: Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC. MEASUREMENTS: A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC. RESULTS: Ninety‐four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end‐of‐life care. CONCLUSION: Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.     

Families' perception of the added value of hospice in the nursing home

OBJECTIVE: To determine if family members perceive that hospice improves the care of dying nursing home residents during the last 3 months of life. DESIGN: Mailed survey. PARTICIPANTS: Family members for all nursing home hospice enrollees in North Carolina during a 6-month period. MEASUREMENTS: After residents' deaths, family members answered questions about the quality of care for symptoms before and after hospice, the added value of hospice, the effect of hospice on hospitalization, and special services provided by nursing home staff or by hospice staff. RESULTS: A total of 292 (73%) of 398 eligible family members completed surveys. The average age of the nursing home residents who had received hospice was 79.5 years; 50% had cancer and 76% were dependent for self-care. In their last 3 months, 70% of decedents had severe or moderate pain, 56% had severe or moderate dyspnea, and 61% had other symptoms. Quality of care for physical symptoms was rated good or excellent by 64% of family before hospice and 93% after hospice (P<.001). Dying residents' emotional needs included care for moderate or severe depression (47%), anxiety (50%), and loneliness (35%). Quality of care for emotional needs was rated good or excellent by 64% of family before hospice and 90% after hospice (P<.001). Fifty-three percent of respondents believed hospice prevented hospitalizations. Family estimated the median added value of hospice to be $75 per day and described distinct special services provided by hospice and by nursing home staff. CONCLUSIONS: Family members believe that nursing home hospice improves quality of care for symptoms, reduces hospitalizations, and adds value and services for dying nursing home residents.     

Hospice Care: Nurses’ Experience and Perception of Older Adult Patients’ Experience

Objectives: The current study sought to understand the differences hospice nurses perceived in caring for older adult patients who utilize hospice for longer and shorter periods, older adult patients’ experience of hospice services, and if length of hospice stays influenced the patients’ end-of-life experience.

Methods: Interpretative Phenomenological Analysis was used to extract themes and subthemes from 10 interviews conducted with hospice nursing staff.

Results: Four major themes were identified pertaining to nurses perspective on older adults’ views of hospice and how length of hospice use impacts end-of-life care.

Conclusion: These themes suggest hospice nursing staff believe longer hospice stays are more positive and that older adults identify more positive aspects of hospice when using it for longer periods of time. Results suggest that nurses believe length of use directly impacts patient care and the experience of hospice services.

Clinical Implications: Participating nurses reported that older adults have a lack of information on hospice services. It was suggested that more information is needed and that providing such education may lead to longer hospice stays.     

Breaking the "bad" news to patients and families: preparing to have the conversation about end-of-life and hospice care

The ability to compassionately communicate difficult or "bad news" to a patient and family is essential to the provision of quality care at the end-of-life. Preparing to have these conversations requires a deliberate multilevel approach that includes: 1) becoming comfortable with end-of-life issues; 2) understanding the scope of the experiences from the patient's and family's perspectives; 3) understanding the full range of choices and options you can offer patients and families regarding their care (including hospice care); 4) developing a "can do" approach toward your involvement with end-of-life care; and 5) learning to effectively share and receive information in a compassionate manner. The following article explores this multilevel approach in an effort to assist physicians and other health care professions in supporting patients and families in their transition from curative care to hospice and palliative care.     

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.     

Pain management in older adults: prevention and treatment

The release of guidelines in 1998 by the American Geriatrics Society on "The Management of Chronic Pain in Older Persons" was a breakthrough in helping to manage pain in this population. Already advances have fostered a need to update recommendations. This article focuses on the treatment strategies available for seniors that are likely to help to fulfill the obligation to relieve pain and suffering in patients. A review was done of the literature using Medline and other search techniques. New pain scales have been developed with seniors in mind and greater testing of older scales in elderly populations have helped to identify measures of pain more suited to frail seniors. Advances in cyclooxygenase inhibition selectivity, alternative medicine, and progress in the identification of nonopioid pain receptors and the development of products to target them are just a few of changes that have altered the way clinicians think about treating pain. The use of hospice in end-of-life palliative care is a valuable resource for clinicians managing pain at that phase in care as well. Tools are available to prevent and treat pain successfully in seniors. Educating clinicians about available assessment tools, techniques and interventions may be the biggest challenge to comforting the older adult in pain.     

Cancer and Communication in the Health Care Setting: Experiences of Older Vietnamese Immigrants, A Qualitative Study

Background As patients grow older, accurate communication with health care providers about cancer becomes increasingly important. However, little is known about the cancer communication experiences of older Asian immigrants. Objective To learn about the cancer-related communication experiences of older Vietnamese immigrants from the insider perspective. Design Qualitative study (grounded theory, constant comparative method) using individual interviews with older Vietnamese immigrants with the purpose of discussing how they learn about cancer. Interviews were conducted in Vietnamese. Participants Vietnamese immigrants aged 50–70 years, recruited through community-based organizations. Most had low education and limited English proficiency. The sample size of 20 was sufficient to achieve theoretical saturation. Results We identified 3 categories of themes concerning informants’ experiences with cancer communication in the health care setting: (1) attitudes about addressing screening with providers, (2) issues/problems communicating with physicians about cancer, and (3) language/translation difficulties. There was substantial overlap between informants who mentioned each theme category, and 40% of the participants mentioned all 3 categories. Conclusion Clinicians should be aware of and act upon specific cancer communication needs/challenges of their older immigrant patients. Moreover, health care systems need to be prepared to address the needs of an increasingly multiethnic and linguistically diverse patient population. Finally, community-level interventions should address baseline knowledge deficits while encouraging immigrant patients to engage their doctors in discussions about cancer screening.     

Referral and timing of referral to hospice care in nursing homes: the significant role of staff members

PURPOSE: Given concerns about end-of-life care for many nursing home (NH) residents, this study sought to understand factors influencing hospice referral or nonreferral as well as timing of referral. DESIGN AND METHODS: We conducted semistructured interviews with personnel from seven participating NHs and two hospices. We interviewed NH directors of nursing regarding facility referral practices and conducted interviews with 34 NH nurses, 30 NH aides, and 17 hospice nurses knowledgeable about the factors that led to the hospice status of 32 NH decedents. Selected decedents varied by diagnosis and hospice status (received hospice for >7 days, 相似文献   

Director perceptions of end-of-life care at geriatric health services facilities in Japan

Geriatric health services facilities (GHSF) are expected to assume a greater role in caring for the dying elderly in the future. However, very little research has dealt with the topic. The aim of this nationwide study is to clarify current end-of-life care policies and practices of GHSF. The subjects were 2876 managing directors of GHSF. Data was collected through mailed questionnaires in 2003. The content of the questionnaires included: (i) general characteristics; (ii) end-of-life care policies; (iii) available medical treatments; and (iv) staff education. To evaluate the factors associated with end-of-life care policies at GHSF, we divided the facilities into two groups, according to whether their policy toward end-of-life care was progressive or regressive. The response rate was 40.3%. The results indicated that a total of 513 GHSF implemented progressive policies for end-of-life care. The factors associated with a progressive policy for end-of-life care were: (i) availability of medical intervention within and outside of the facilities; (ii) staff education; and (iii) discussion about end-of-life care policy with residents and family. Duration of stay also was positively associated with a progressive policy. Our study highlights the need for a national consensus on reforming the end-of-life care system of long-term care facilities.     

A Cross-Cultural Comparison of Hospice Development in Japan,South Korea,and Taiwan

By 2050, one out of four people in Eastern Asia will be aged 65 and above. Thus, preparing to care for an older population is imperative. Addressing quality care for elders includes consideration of palliative and end-of-life care. A comparative study of the development of hospice and palliative care services in Japan, South Korea, and Taiwan, is presented, based on an extensive literature review. Both commonalities and differences were found. This article provides information on the origins and administration of hospice services in these three cases, as well as the degree of government involvement. Cultural and religious aspects are also considered, and obstacles to the spread of hospice services are discussed. This review compares experiences with hospice services and identifies factors that influence people’s perceptions and adoption of hospice. Stronger financial support for hospice and palliative care through the government and insurance programs would help increase the availability and use of services. Also, the need for continuing education of healthcare providers, patients, families, and the community is urgent. However, promotion of understanding of better pain management and the worth of hospice and palliative care must be conducted in ways that are sensitive to the cultural values and traditions in Japan, South Korea, and Taiwan. Only when hospice and palliative care can be viewed as an admirable choice for one’s loved ones, overcoming issues of truth telling, filial piety, worries about how one is judged, and religious considerations, will it become more widely accepted.     

Non-medical palliative care and education to improve end-of-life care at geriatric health services facilities: A nationwide questionnaire survey of chief nurses

Background:   Geriatric health services facilities (GHSF) are expected to assume a growing role in caring for the dying elderly. However, research in this area has so far been scant. The purpose of the present study is to reveal the status of non-medical palliative care and staff education aiming at improving and enhancing end-of-life care at GHSF.
Methods:   The subjects were 2876 chief nurses of GHSF. Data was collected through a mailed questionnaire in 2003. The questionnaire covered the following: (i) staff perception of end-of-life care policies; (ii) staff education; and (iii) available non-medical care. To evaluate the factors correlated with end-of-life care policies at GHSF, we divided the facilities into two groups.
Results:   We analyzed the answers collected from 313 facilities with a progressive policy toward end-of-life care (PP group) and 818 with a regressive policy toward it (RP group). It was found that staff training was conducted more frequently among PP facilities. Generally, nurses in the PP facilities were more confident that they could provide comprehensive on-site end-of-life care and grieving support, but did not feel so sure about their ability to provide better end-of-life environments for dying residents and family by organizing outside support from voluntary and/or governmental organizations and religious organization for healing and to pursue appropriately a written follow-up communication with the bereaved family.
Conclusions:   Our results suggest that providing GHSF staff with education about end-of-life issues or setting up collaboration with the outside is an important factor to enhance overall end-of-life care at these facilities.     

Family perspectives on end-of-life care experiences in nursing homes

PURPOSE: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. DESIGN AND METHODS: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. Interviews were taped and transcribed and then coded by a five-member, multidisciplinary team to identify overarching themes. RESULTS: Respondents report that the needs of dying patients are often insufficiently addressed by health care professionals. Their low expectations of nursing homes and their experiences cause many to become vigilant advocates. Respondents report that physicians are often "missing in action," and they desire more and better trained staff. They indicate that regulations reinforce task-focused rather than person-centered care and add to patient and family burden. Although hospice services are reported to enhance end-of-life care, respondents also report late referrals and occasional misunderstandings about the role and scope of hospice. IMPLICATIONS: Sustained efforts on many fronts are needed to improve end-of-life care in nursing homes. Policy recommendations are suggested.