A good death for residents of long-term care: family members speak

Little research has been done on the topic of end-of-life care in long-term care settings to identify important themes regarding end-of-life care structures, processes, and outcomes. This study utilized data gathered in a stratified, random sample of 437 family members of residents who died in 31 nursing homes (NHs) and 199 residential care/ assisted living facilities. Structural components of care including staffing adequacy, training, and consistency as well as facility environment and size were important factors for family members interviewed. "Being there" and manner of care delivery (e.g., staff attitudes/empathy) were major elements in the process of care. These factors were mentioned more than direct care, Hospice, or resident preferences. Family members identified themes of [dying at] home and being comfortable and clean as important outcomes of care. These identified structural components, processes, and outcomes have implications for the role of social workers in these settings despite that social work support is notably absent in these findings.     

A Good Death for Residents of Long-Term Care

Abstract

Little research has been done on the topic of end-of-life care in long-term care settings to identify important themes regarding end-of-life care structures, processes, and outcomes. This study utilized data gathered in a stratified, random sample of 437 family members of residents who died in 31 nursing homes (NHs) and 199 residential care/assisted living facilities. Structural components of care including staffing adequacy, training, and consistence as well as facility environment and size were important factors for family members interviewed. “Being there” and manner of care delivery (e.g., staff attitudes/empathy) were major elements in the process of care. These factors were mentioned more than direct care, Hospice, or resident preferences. Family members identified themes of [dying at] home and being comfortable and clean as important outcomes of care. These identified structural components, processes, and outcomes have implications for the role of social workers in these settings despite that social work support is notably absent in these findings.     

Calling the Question of “Possible Dying” Among Nursing Home Residents

Abstract

Glaser and Strauss reported decades ago that in order for a person to be treated as dying, he/she must be defined as dying. Defining nursing home residents as “dying” can be complicated because most residents are in advanced old age with multiple chronic conditions. Using a social construction theoretical framework, this study looks at the step before the declaration of dying, that is, the consideration of the possibility of dying. This qualitative study is a secondary analysis of prospective data collected during 16 months of fieldwork on behalf of 45 nursing home residents whose health was considered declining. The purpose of this paper is to build understanding about the social construction of “possible dying” by reporting triggers that can call the question of possible dying and stimulate a discussion about the nursing home resident's status, prognosis, care options, and preferences. These triggers include: Health status decline; noncompliance with diet or medications; available medical interventions not being well suited for the residents; and family consideration of an out-of-town trip. The paper also reports barriers (family, staff, and disease process) and facilitators to calling the question of possible dying, including families having a sense of treatments they would like to avoid and having the opportunity to talk through options. Findings are discussed in light of basic assumptions of social construction. Implications for social workers include helping residents, families, and staff anticipate and address the possibility of dying, and to reflect these discussion in care plans, as well as the need to be available to help residents and family members with psychosocial issues related to living and dying in the nursing home setting, including the profound issues that can be provoked or exacerbated by resident health status decline and possible dying.     

Staff-Family Relations and Institutional Care Policies

As institutional care providers increasingly recognize the importance of the family, the quality of staff-family relations has become a concern. This study investigated the relationship between selected facility care policies and staff-family relationships. Data secured from staff members and family members in rural nursing homes revealed a relationship between the family role that the care policy prescribed and the degree of staff-family integration. The study concluded that care policies viewing family members as clients will have positive consequences for staff and families and ultimately the residents.     

Calling the question of "possible dying" among nursing home residents: triggers, barriers, and facilitators

Glaser and Strauss reported decades ago that in order for a person to be treated as dying, he/she must be defined as dying. Defining nursing home residents as "dying" can be complicated because most residents are in advanced old age with multiple chronic conditions. Using a social construction theoretical framework, this study looks at the step before the declaration of dying, that is, the consideration of the possibility of dying. This qualitative study is a secondary analysis of prospective data collected during 16 months of fieldwork on behalf of 45 nursing home residents whose health was considered declining. The purpose of this paper is to build understanding about the social construction of "possible dying" by reporting triggers that can call the question of possible dying and stimulate a discussion about the nursing home resident's status, prognosis, care options, and preferences. These triggers include: Health status decline; noncompliance with diet or medications; available medical interventions not being well suited for the residents; and family consideration of an out-of-town trip. The paper also reports barriers (family, staff, and disease process) and facilitators to calling the question of possible dying, including families having a sense of treatments they would like to avoid and having the opportunity to talk through options. Findings are discussed in light of basic assumptions of social construction. Implications for social workers include helping residents, families, and staff anticipate and address the possibility of dying, and to reflect these discussion in care plans, as well as the need to be available to help residents and family members with psychosocial issues related to living and dying in the nursing home setting, including the profound issues that can be provoked or exacerbated by resident health status decline and possible dying.     

Vital Conversations with Family in the Nursing Home: Preparation for End-Stage Dementia Care

Family members of persons with advanced dementia may be asked to make complex treatment decisions without having adequate knowledge regarding the risks and benefits. This 6-month, prospective, randomized trial tested the effect of an intervention consisting of a face-to-face, structured conversation about end-of-life care options with family members of nursing home residents with advanced dementia. A comparison group received only social contact via telephone. Structured conversations between a palliative care team and intervention group family members included goals of care and how best to achieve those goals, and provision of psychosocial support. Psychosocial support was also provided via telephone at three 2-month intervals. Family members participated in three telephone interviews: baseline, 3, and 6 months. Specific advance directives for persons with dementia were extracted from medical records. Results showed that intervention families had higher satisfaction with care than comparison families at the 6-month time point, and they were more likely to have decided on medical options listed in residents' advance directives (Do Not Resuscitate, Intubate, Hospitalize) over time. Study findings reinforce the need for increased education and support for families around issues of end-of-life care decisions for advanced dementia.     

Admission to Nursing Homes in Taiwan

The population of Taiwan is facing a radical ageing process. A proportion of the growing number of people aged 65 and over is expected to need nursing home care. This research concerns the family context of decision‐making in the process of admission to a nursing home in Taiwan. Employing survey data from interviews with elderly people in nursing homes (235 interviews) and their carers/key families (265 interviews), the factors affecting their views about admission were explored. Bivariate analysis and a logistic regression model were also used to examine perceptions of alternatives to nursing home care among family members with elderly relatives in nursing homes. Most elderly people in Taiwan are cared for in their own homes by their families but, in some circumstances, entry to a nursing home seemed inevitable. This research found that the decisions were taken mainly within a family context. The adult children of the elderly people, carers/key families’ preferences and the availability of carers influenced the decision. Apart from the important need factors of elders, families’ views about alternatives to nursing homes were significantly influenced by their preferences. This study has important implications for long‐term care in Taiwan. It is hoped that this will be needs‐led, both by elderly people and their families.     

Comparing Families and Staff in Nursing Homes and Assisted Living: Implications for Social Work Practice

Nursing homes and residential care/assisted living settings provide care to 2.4 million individuals. Few studies compare the experience of, and relationships between, family and staff in these settings, despite ongoing family involvement and evidence that relationships are problematic. Data from 488 families and 397 staff members in 24 settings examined family involvement and family and staff burden, depressive symptoms, and perceptions; and staff absenteeism and turnover. There were few differences across setting types. Although conflict rarely occurred, there was room for improvement in family–staff relations; this area, and preparing family for their caregiving roles, are appropriate targets for social work intervention.     

Factors Affecting the LGBT Population When Choosing a Surrogate Decision Maker

ABSTRACT

For individuals in the marginalized population of lesbian, gay, bisexual, and trans- gender persons (LGBT), choosing a health care surrogate to make medical decisions is an emotionally challenging task. These decisions become more difficult when compounded by issues of discrimination, lack of legal and social support, varying levels of relationship commitment, and complications of disclosure to family and medical professionals. Limited research exists regarding the social, legal, medical, and familial environments that impact the choice of a surrogate decision maker for an LGBT individual. This systematic review examines 14 articles to identify factors influencing individual surrogate choice and existing gaps in the literature. To remedy current research limitations, future research recommendations address the areas of design, sampling, data collection, and data analysis within diverse subgroups of the LGBT population. This review further identifies related areas of service required by members of the LGBT population relative to diversity, demographics, and social, legal, medical, and familial environments influencing their choice of a surrogate decision maker.     

A PROBLEM SOLVING MODEL FOR IN-SERVICE TRAINING

With the increasing use of nursing homes to care for the frail elderly and the recruitment of poorly trained staff, in-service training has become a crucial need. This article presents a problem solving model for in-service training that the social worker can use to increase the effectiveness of staff in dealing with nursing home residents and their families.     

The role of family care-givers for an older person resident in a care home

Summary A sample of 61 relatives of residents admitted during the precedingthree years to 35 independent sector nursing or residentialcare homes in four local authority areas was interviewed. Thissample included spouses, daughters and sons. Five discrete rolesfor family care-givers in the care homes were described: checkingthe quality of care, companionship, handling the cared-for personwith personal care. Although family care-givers described themselvesas very satisfied with the care homes as a whole, as many ashalf were worried about some aspect of care. A third of theoffspring felt that their relationship with the cared-for personhad improved following the admission to a care home. None ofthe spouses felt this to be the case and most felt that theirrelationship had deteriorated. Spouses tended to visit veryfrequently. Unlike offspring, spouses rarely took the cared-forperson out of the care home. Because of the lack of privacy,visits could be a difficult experience. Those wanting to continuegiving their partner practical support were discouraged by stafffrom doing so. The research has implications for social workers,care home proprietors and registration and inspection unitsin encouraging care homes to adopt more 'relative friendly'policies.     

Family perspectives on the hospice experience in adult family homes

Growing numbers of terminally ill older adults receive hospice services in adult family homes (AFHs); however, little is known about the provision and receipt of end-of-life care in such environments. This article reports findings from a qualitative exploration of family members' perspectives of the hospice experience in AFHs. Analysis of data obtained during interviews of 15 residents' family members exposed significant challenges associated with transition to an AFH, highlighted the importance of AFH and hospice staff in family members' assessment of overall quality of care, and emphasized the critical nature of communication in AFH settings.     

‘Someone's Decision: That is How I Got Here’

In the gerontological literature, the family has been characterised as either a party that has pushed the aged person into nursing homes or one which has assisted them to remain at home. But few studies have systematically examined the role the family plays in placing the older person in a nursing home. As part of a study that is reconstructing the pathway of 90 aged persons moving to nursing homes, this paper identifies the main actors in the institutionalisation decision, as well as the role the aged person, her family and health professionals play in decisions to obtain nursing home care.     

Social Workers' Personal Death Attitudes,Experiences, and Advance Directive Communication Behavior

Abstract

This research surveyed 29 social workers to examine their personal death attitudes and experiences in relation to their advance directives communication practice behavior. The study measured death attitudes on 5 dimensions: fear, avoidance, neutral, approach, or escape acceptance of death. Participants' personal experiences with terminal illness and death were also assessed. Advance directive communication practices were operationalized as 7 phases: initiation of the topic, disclosure of information, identification of a surrogate decision-maker, discussion of treatment options, elicitation of patient values, interaction with family members, and collaboration with other health care professionals. Findings suggest that social workers' advance directive communication behavior differs by practitioners' death attitudes and experiences. Implications for social work education and professional development are discussed.     

Groupwork in a Hospice Setting

Hospice has developed rapidly to become a major health care orovider for those with a life threatening illness and their families. As part of their services, hospices offer several types of groups for their clients, volunteers and staff as well as social support groups for their own team members. This paper examines the functions of groupwork in hospice, focusing particularly on the use of hospice staff support groups. Research on the use of a group perspective and group methods in a hospice setting is presented.     

After Safety,What is the Goal of Child Welfare Services: Permanency,Family Continuity or Social Benefit?

Child welfare services have multiple goals, including child protection, family continuity, and achievement of legal permanency so children can end their involvement with child welfare services and have a lifetime family. These goals are not all achievable to the same extent in all cases. American child welfare policy has, in the last few years, become more definitive about the priority of child protection above family preservation. Now, situations which involve safety risks that are too great do not require any efforts at reunifying children to their biological homes. Less clear in American child welfare policy and practice is the value to be placed on other factors – particularly when a child cannot return home and will need an alternative adoptive family. Practitioners often emphasize family continuity – that is, the opportunity to maintain contact with the biological parent and extended family members – as a key decision making consideration. Yet, family continuity does not necessarily predict a successful transition to adulthood that is healthy for children or provides social benefits to the community. This paper explores the rationale for expanding child welfare decision making criteria by adding longer-term outcomes and the likelihood that children will eventually generate social benefits.     

Spirituality and social work in long-term care

The spiritual aspect of care of elders in long term care has only recently been re-affirmed. A social worker who has volunteered, worked, and consulted in nursing homes shares her perspective on the importance of the "spiritual" to nursing home social work. From the perspective of 40 years of involvement in long term care, she offers suggestions for assessment, education of staff, affirming rights in the religious arena. Workers are encouraged to keep hope alive for themselves as well as for those with whom they work.     

Nursing Homes in England and their Capacity to Provide Rehabilitation and Intermediate Care Services

The numbers of older people living in residential and nursing home care in the UK have risen exponentially since the early 1980s when the closure of long–stay geriatric wards and changes in social security funding of care home places led to a rapid expansion of the care home industry. While the implementation of the 1990 National Health Service (NHS) and Community Care Act shifted the responsibility for the commissioning and funding of these services to local authority social services departments, the provision of most health services (such as general practitioner care, physiotherapy and specialist nursing services) to nursing home residents remains the responsibility of community–based NHS practitioners. Recently, the attention of policy–makers in the UK has been focused on the need to improve the throughput of the acute sector. Older people who have received treatment but are not yet able to return to their own homes are to be transferred into intermediate care facilities, often by using nursing home beds, with the aim of supporting short–term rehabilitation outside of the acute sector. This paper presents evidence from a study of health service provision to older people living in nursing homes in England. It examines whether nursing homes have the capacity to fulfil the rehabilitation and intermediate care function envisaged by policy–makers. It concludes that shortfalls in the provision of NHS services to nursing homes and difficulties faced by nursing homes in paying for health services themselves may hinder the rehabilitation potential of intermediate care placements in nursing homes.