A Conceptual Model of Family Surrogate End-of-Life Decision-Making Process in the Nursing Home Setting: Goals of Care as Guiding Stars

An increasing proportion of dying is occurring in America's nursing homes (NH). Family members are involved in (and affected by) medical decision-making on behalf of NH residents approaching the end of life, especially when the resident is cognitively impaired. This article proposes an empirically derived conceptual model of the key factors NH family surrogate decision-makers consider when establishing or changing goals of care and the iterative process as applied to the NH setting. This model also establishes the importance of family social role expectations toward their loved one as well as the concept, “stance toward dying,” as key in establishing or changing the main goal of care. NH staff and physicians can use the model as a framework for providing information and support to family members. Research is needed to better understand how to prepare staff and settings to support family surrogate decision-makers, in particular around setting goals of care. The model can be generalized beyond nursing homes.     

Perceptions of Preparedness to Assist Elders with End-of-Life Care Preferences

Abstract

Using a systematic sample of Florida licensed clinical social workers (N = 272), this study found that respondents perceived themselves capable of assisting elders with end-of-life care decisions and considered themselves moderately knowledgeable of resources available to elder clients. Respondents indicated slightly positive attitudes for work with elders and elders with Alzheimer's disease, and most respondents believed that elders should have the right of physician-assisted suicide. Using multivariate analysis, four predictor variables were identified that account for 61.3% of the adjusted variance of the dependent variable of preparedness to assist elders with end-of-life care preferences. These predictor variables were (a) knowledge of resources available to elders, (b) desirability of working with elders, (c) desirability of working with elders with Alzheimer's disease, and (d) attitude toward assisted suicide.     

End-of-Life Conversations and Hospice Placement: Association with Less Aggressive Care Desired in the Nursing Home

Education about end-of-life care and treatment options, communication between family and health care providers, and having advance directives and medical orders in place are important for older adults with chronic, progressive decline and end-stage disease who spend their last days in the nursing home. This study used retrospective data (6 months before death) of long-stay nursing home decedents (N?=?300) taken from electronic health records to capture the end-of-life experience. Findings showed for almost all decedents, Do Not Resuscitate and Do Not Intubate orders were in place, and just over one-half had Do Not Hospitalize and No Artificial Feeding orders in place. A small proportion had No Artificial Hydration or No Antibiotic orders in place. Overall, there was congruence between documented medical orders and treatment received. Findings showed that use of hospice and discussions about particular life-sustaining treatments each had significant associations with having less aggressive medical orders in place. These results can inform best practice development to promote high quality, person-directed, end-of-life care for nursing home residents.     

The Milieu Standard for Care of Dementia in a Nursing Home

Recent attention has been directed toward providing specialized skilled nursing facility care for patients suffering from dementia. This paper explores and details how The Hebrew Home for the Aged at Riverdale developed such a unit and its applicability for the provision of appropriate care to demented elderly in other settings. The leadership roles of professional care staff, particularly the social worker in the development of this project are highlighted.     

Advance Care Planning in the Delivery of Adult Protective Services

ABSTRACT

In ensuring the safety and protection of older adults from abuse and exploitation, adult protective services (APS) workers face a variety of situations involving serious illness and end-of-life conditions. Many older adults encountered in APS will present with one or more chronic conditions that may warrant discussion of advance care planning with clients and their families. This study surveyed APS workers (n = 508) in 21 states regarding encounters with end-of-life situations and the practice of future care planning. Results revealed that three-fourths of APS workers encounter clients with serious illnesses and about two-thirds do discuss planning in advance for care. More than one-half of the respondents indicated client incapacity and refusal to address future care needs as barriers to discussing planning in advance for care. Recommendations to enhance advance care planning among APS workers are discussed.     

Creating the Final Conversations Scale: A Measure of End-of-Life Relational Communication with Terminally Ill Individuals

Final conversations (FCs) are defined as the communicative interactions, both verbal and nonverbal, that occur between terminally ill patients and relational partners. In this study, the “Final Conversations Scale” was developed and tested. A total of 152 participants that had engaged in final conversations with individuals that were terminally ill completed the newly developed instrument. Factor analysis produced a five-factor structure, including: messages of spirituality/religion; expressions of love; proactive difficult relationship talk; everyday communication; and talk about illness/death. Participants' perceptions of the relational closeness and difficulty with the deceased significantly influenced the individuals' recalled frequency of FCs messages. Practical and scholarly implications focus on the needs of the family members regarding their communication with terminally ill individuals, as well as directions for future research with the FCs Scale.     

Considerations in Care for Individuals with Intellectual Disability with Advanced Dementia

Abstract

A number of physical, psychosocial, or ethical issues related to the care of the individual with advanced dementia are reviewed and related to individuals with intellectual disabilities. The sources used include the published literature and illustrations drawn from personal observations. The author notes that through anticipation and early planning, advanced directives and service planning (which looks to adaptation of services and other care management interventions), can effectively impact care at the end. Areas that need to be addressed include technical information, including a review of and, as appropriate, adaptation of general advanced dementia resources, relief, rest, support, reassurance, receipt of on-going information, participation in planning, a sense of humor, and appreciation. Also noted, are the differences experienced because of the presence of paid staff as carers and residence outside of the family home. It is concluded that, although the goals of quality care is the same for all people with advanced dementia, the process by which to reach these goals often needs further consideration and adaptation for people with intellectual disabilities.     

Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes

The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans’ family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans’ families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans’ needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans’ end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran’s death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.     

Barriers Associated with the Implementation of an Advance Care Planning Program in a Prison Setting

Advance care planning is considered a best practice within health care. However, the extent to which planning occurs within prison settings is unknown. Through the course of implementing an advance care planning (ACP) program for aging and dying offenders at a medical classification center, multiple barriers were identified that need to be addressed systemically to ensure the medical wishes of offenders were known and honored. This article will outline the barriers and the steps that were taken to create systems change to promote and sustain advance care planning.     

Family Caregiving and the Site of Care: Four Narratives About End-of-Life Care for Individuals with Dementia

Little is known about end-of-life care for individuals with Alzheimer’s disease and other dementias. Four case studies are presented, using data collected by qualitative interviews conducted with family caregivers who were closely involved with end-of-life care for relatives with dementia. The case studies are formatted in two pairs, with one reflecting two deaths occurring at home and the other pair representing two deaths in the nursing home. The cases reveal a range of end-of-life experiences, suggesting that there is not just one “good” path. The extent of care needed, the responsiveness of the individual, the health of the caregiver(s), and the residence and support situations, can all intersect in a variety of ways that make no one scenario the answer for all. Although most people say they would prefer to die at home, in some situations the nursing home can be a satisfactory choice, particularly if hospice is involved. These narrative case studies give the reader insight into the variety of the end-of-life experiences and suggest the environment should be considered as part of the care provision.     

To Coordinate Information in Practice: Dilemmas and Strategies in Care Management for Citizens with Dementia

ABSTRACT

This qualitative study, based on 19 interviews with care managers, explores the experiences of care-managers involved in assessing the need for social services for people with dementia. The study shows that social workers, as care managers, face several dilemmas in their practice concerning people with dementia, in relation to the exchange of information and in regards to conflicting interests between different actors involved in the assessment of the need for support for people with dementia. Strategies used to handle problematic situations that arise in their work are using other sources for information (e.g., relatives and actors from other professions), persuading, and pursuing creative forms of consent. However, the study shows that dilemmas and strategies used generate other, prominently moral, dilemmas for care managers in their practice, which relate to participation and self-determination by the person with dementia. The study shed light on the problematic situation for care managers in their work to coordinate information and further the new “realities“ that they encounter as well as on how to handle these new situations. This study suggests possible ways to improve the everyday work of care managers, as well as how policies concerning social work and people with dementia can be improved.     

Managing in the Trenches of Consumer Care: The Challenges of Understanding and Initiating the Advance Care Planning Process

To better understand how community-based long-term care providers define advance care planning and their role in the process, we conducted 8 focus groups with 62 care managers (social workers and registered nurses) providing care for Ohio's Medicaid waiver program. Care managers shared that most consumers had little understanding of advance care planning. The care managers defined it broadly, including legal documentation, social aspects, medical considerations, ongoing communication, and consumer education. Care managers saw their roles as information providers, healthcare team members, and educators/coaches. Better education, resources, and coordination are needed to ensure that consumer preferences are realized.     

Asian Pacific Islander Dementia Care Network: A Model of Care for Underserved Communities

This study presents the results of the work of the Asian Pacific Islander Dementia Care Network (APIDCN)—a collaborative model of care created to develop community capacity to deliver dementia capable services, build community awareness about Alzheimer’s disease and other dementias, and offer direct services to caregivers in the API community in Los Angeles. Through trainings, mentoring, and outreach campaigns, the APIDCN expanded the availability of culturally competent services in the API community. The knowledge that was embedded within partner organizations and in the community at large assures sustainability of the services after the project ended.     

The Family Group Within the Nursing Home:

An ongoing monthly family group was implemented in an intermediate care facility in hopes of improving communication between staff and families of long term care residents. Other objectives of the group were to provide families with information about policies and procedures, education about the aging process, and to facilitate an informal support group network where families could share problems and concerns. The feedback and evaluation process indicated that sharing feelings of anger, quiet, frustration and other emotions helped the families deal with the responsibilities of institutionalizing a relative and helped to facilitate better communication between staff and family members.     

Understanding Ambiguous Loss in the Context of Dementia Care

Abstract

This study examined the experience of ambiguous loss for family members caring for a person with dementia living in a long-term care facility. Data for this study came from in-depth, active interviews conducted with 38 adult daughters and 23 adult sons caring for a parent with dementia living in a long-term care facility. The stories shared by the adult children revealed that ambiguous loss in the dementia context involves a long, on-going process of several phases including anticipatory loss, progressive loss and acknowledged loss. The nature of the ambiguity shifts and the experience changes for families as they journey through the ambiguous loss process. Acceptance and avoidance were the two most common coping strategies used in dealing with acknowledged loss.     

Developing the NICE/SCIE Guidelines for Dementia Care: The Challenges of Enhancing the Evidence Base for Social and Health Care

Internationally, interest is developing in the challenges ofdeveloping evidence-based guidelines for social work practice.The paper reports on the process of establishing the UK’sfirst joint health and social care evidence-based practice guideline,which is in dementia care. The paper addresses the methodologicaland procedural challenges of reviewing, meta-analysing and synthesizingknowledge for health and social care given the contrasting historiesof the two sectors in relation to the emergence of evidence-basedpractice. Dementia care is a complex domain within which socialand clinical perspectives intersect, reinforcing the desirabilityof producing ‘joined up’ health and social carepractice guidelines that are relevant to integrated services.It is suggested that the exemplar of producing a joint healthand social care guideline for dementia may be a model for futuredevelopment of practice guidelines. Some of the main recommendationsare presented to illustrate the character of the joint guideline,lessons are drawn for future guideline development, and implicationsfor policy and practice implementation are considered.     

Hostel Care for Elderly People: The Association with Hospital and Nursing Home

In order to achieve its purpose a hostel should have a clearly defined association with both acute hospital and nursing home. This report is a study of the reasons for separation of residents from a hostel over a period of four years; it included temporary admissions to an acute hospital situation and permanent transfer to a nursing home. It is estimated that one nursing home place is needed for every three residents in this kind of hostel. Thirty-six of the 79 residents in a hostel with 32 places had a total of 58 temporary admissions to an acute hospital situation during the four year period. Thirty-three (42 per cent) of the 79 residents needed transfer to a nursing home during the study period. Analysis was made of the time spent (person years) in each institution. Although 42 per cent of the residents needed transfer from hostel to nursing home they spent approximately 75 per cent of their time in the hostel.     

A choice of one's own research advance directives: Anticipatory planning for research subjects with fluctuating or prospective decisionmaking impairments

Mental disorders that may affect decisionmaking capacity, like schizophrenia, have a deleterious effect not only on persons who are afflicted with the disorders but also on their families, their friends, and their communities. Realizing research to develop generalizable knowledge that may benefit this heterogeneous population is crucial. The moral challenge is to fashion processes that both respect research subjects’ autonomy and protect their wellbeing. Research advance directives may provide a mechanism that authorizes potential research subjects to make choices of their own regarding whether they wish to participate in a research protocol, to choose and appoint a surrogate decision maker, and to secure an array of protections for themselves should they lose their decisionmaking capacity during the period of the research protocol. Such research advance directives may be used by persons with fluctuating, limited or prospective decisionmaking impairments.