Advance Care Planning Throughout the End-of-Life

Abstract

Advance care planning throughout the end-of-life is an increasingly important aspect of professional practice with older adults and their families. As the nation's population continues to live longer, more and more people will experience years of functional and cognitive decline prior to death. This article discusses the growing importance of advance care planning using a long-range, holistic perspective of examining care needs throughout the end of life. End-of-life care is conceptualized by three trajectories of decline leading to death, with about two-thirds of all older adults succumbing to four key conditions: congestive heart failure, emphysema, frailty, and dementia. Research regarding the advance care planning needs of older adults with the key conditions is presented. Further research is needed to enhance social work practice in this area.     

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.     

Adults with a Learning Disability Living with Elderly Carers Talk about Planning for the Future: Aspirations and Concerns

The majority of adults with a learning disability live withfamily carers, many of whom are ageing and have support needsof their own. Planning for the future thus becomes the key topreventing a crisis situation when family care is no longerviable because of death or ill health. Existing knowledge andpractice are largely based upon the perspective of professionalsand carers. This study explores the views, aspirations and concernsof adults with a learning disability, about living at home andplanning for the future. Findings show that participants werevery aware of the need for alternative housing or support inthe future and had clear preferences about their future options.However, they also showed extensive concern for their familycarers and this often impacted on their willingness to planfor the future or to move to alternative housing. Their demonstrableawareness of the inevitable death or ill health of family carers,and willingness to engage with the implications, emphasize theimportance of involving adults with a learning disability inplanning for their future, as well as providing them with bereavementsupport.     

Protecting the Right to Life of Children with Disabilities in China

ABSTRACT

Chinese social policy to support parents in caring for their children is vital to address the urgent social problem of abandoning the life of children with disabilities by not seeking medical treatment. The child rights approach was used to analyze the effectiveness of Chinese social policy to protect the right to life of these children. Primary and secondary empirical data from 3 case studies where parents decided whether to abandon their child were analyzed. Did the child protection mechanisms protect the right to life of these children, and when did parents decide to abandon their children? The findings were: a) When the children were born, their right to life was not unconditional; b) the decision was made privately by parents—no formal decision procedure was available, the role of professionals was minimal, and the state did not intervene; and c) parents considered the disadvantages to their children if they lived. The implication is that China has not yet established a system to support parents and protect the lives of young children with disabilities. Future research to inform child protection reform and disability support to children and families to prevent children becoming abandoned is urgently needed.     

Older Carers of Adults with a Learning Disability Confront the Future: Issues and Preferences in Planning

The Valuing People White Paper (Department of Health, 2001)requires services to secure a plan for all service-users withlearning disabilities living with older carers and promisesthem and their families more choice and control over how andwhere they live. This paper examines the views of the oldercarers (aged over seventy) of sixty-two adults with a learningdisability about planning for the future. Fifty-six took partin interviews in their own homes and six completed a questionnaire.All carers were white and recruited from one local authorityin response to the requirements of the White Paper. Findingsindicate that a significant proportion (thirty-four—55per cent) is either not ready or is unwilling to make futureplans. Barriers to planning include a perceived lack of needdue to the existence of two carers, a lack of awareness of timescalesinvolved in securing housing, difficulties in letting go, alack of confidence in available housing options, and the existenceof mutually supportive relationships. The findings show a needfor a proactive approach to information and support provisionto enable these families to work through a process of makingplans for the future. This is essential to prevent the needfor emergency placements in response to crisis and in turn toensure that adults with learning disabilities have genuine choiceand involvement in how and where they live.     

Grandparents Raising Children With and Without a Developmental Disability

Abstract

This study compared two groups of grandparents, those who were raising grandchildren with a developmental disability, and those raising grandchildren without a developmental disability. Service use, depressive symptoms among grandparents and the impact of welfare reform are considered among other variables. Recommendations are made for the various service systems which impact upon these families. Issues for future research are also identified.     

Palliative Healthcare: Cost Reduction and Quality Enhancement Using End-of-Life Survey Methodology

ABSTRACT

American medical institutions throughout the 20th century prescribed high customer satisfaction, but when it came to death, largely ignored it. An accelerated accumulation of esoteric medical information and the application of this knowledge to affect new cures and longer lives instilled an unquestioning reverence for the medical community among the patient population. Diminishing marginal gains in life expectancy, escalating costs related to life sustaining technologies, and a psychographic shift in the dominant consumer base have challenged this traditional reverence. Armed with unprecedented access to medical information, a more knowledgeable and assertive patient population has emerged in the 21st century to institute its own standards of what constitutes quality health care. In terms of end of life care, this has meant recognition that the emotional needs of the dying have been largely underserved by the current American medical model. Patients and their families are no longer willing to accept the traditional medical perspective of death as failure and have numerous international palliative care models that serve as benchmarks of success when it comes to quality of dying. When cure is a possibility, Americans will pursue it at all costs, but when it is not a possibility, they want honest communication and the opportunity to say good-bye to their loved ones. In the context of these emergent needs, life review is offered as a solution. The value proposition targets not only dying patients and their families, but also society as a whole.     

Planning for future research participation: Ethical and practical considerations

This paper addresses the concept of advance planning for future research participation during episodic or permanent decisional incapacity. First, the concept and its historical origins are described. Second, the concept's ethical justifications are presented. Third, commentary raising ethical and practical concerns about advance research planning is discussed. The paper concludes with the author's views on advance research planning and on the relevant recommendations of the National Bioethics Advisory Commission.     

Toward universal,progressive, and lifelong asset building: introduction to the special issue on inclusive child development accounts

ABSTRACT

Child Development Accounts (CDAs) are subsidised savings or investment accounts that enable families to accumulate assets to invest in children’s long-term development. Ideally, CDAs are universal (everyone participates), progressive (greater subsidies for the poor) and lifelong (beginning at birth). This introduction provides a theoretical and policy background of CDAs in the global context, summarises seven papers in this volume and creates a vision for future CDA development.     

The Effect of Housing on Perceptions of Quality of Life of Older Adults Participating in a Medicaid Long-Term Care Demonstration Project

Summary

As the nation struggles with the great increase in the numbers of older adults, many questions arise about how to provide housing and long-term care options that will ensure the quality of life of older adults. This study demonstrates that older adults and their families perceive quality of life more positively once moved from a nursing home to an assisted living facility using Medicaid funds. Results of this exploratory study are promising and suggest that having housing options available across the continuum of care with individualized case management offers older     

Maintaining solidarity across generations in New Zealand: Support from mid‐life adult to ageing parent

Abstract

This paper establishes the key factors influencing functional solidarity—the material and emotional support mid‐life New Zealanders provide to an ageing parent or in‐law. Using the theoretical framework of intergenerational family solidarity, empirical analysis draws on the 1997 Transactions in the Mid‐Life Family survey of individuals aged 40–54. Results indicate that mature, adult children with no partner and living far from their parent are the least likely to provide emotional and in‐kind help and will be more hesitant to offer emotional support to in‐laws compared to their own parents. Adult children of Christian background, and possibly those who are homemakers and not employed, are more likely to provide in‐kind help, but those in rural areas are less likely. Surprisingly, ill health, a large household, being employed, and continuing to provide help to a young adult child who has left home do not necessarily hinder the respondent in helping an ageing parent. The argument that intergenerational relations are increasingly subject to compromise as mid‐lifers face unprecedented demands for support from other generations needs critical consideration. Further analysis should consider the cultural significance of intergenerational transactions, and how they may be influenced by the cognitive‐affective dimensions of intergenerational family solidarity.     

Importance of Land,family and culture for a good life: Remote Aboriginal people with disability and carers

Worldwide health and social outcomes of Indigenous people are poorer than those of non-Indigenous. In Australia, the Indigenous population experience disability at more than twice the rate of the non-Indigenous population, and a quarter live in geographically remote areas. The challenges associated with accessing services and supports in remote communities can impact on a good life for Aboriginal people with disability. Interviews were conducted with Aboriginal people (An angu) with disability and family carers from remote Central Australian communities and service workers. Thematic data analysis determined factors An angu viewed as essential to living a good life: connection to their Lands, being with family and engaging in cultural activities. Workers' support for a good life involves “Proper Way” help and an understanding of An angu culture. Three culturally relevant strengths-based concepts are important in supporting An angu with disability to live a good life: being connected to the Lands and family, sharing together and working together.     

Older Adults’ Expectations about Mortality,Driving Life and Years Left without Driving

ABSTRACT

People are living and driving longer than ever before, with little preparation for transitioning to being non-drivers. We investigated driving expectations among drivers age 65 and older, including sociodemographic and driving context predictors. Cross-sectional data from 349 older drivers were explored to determine variation in how many years they expected to continue driving. General linear models examined predictors of both expectations. In this predominantly Black/African American sample, 76% of older drivers (mean age = 73 ± 5.7 years) expected a non-driving future, forecasting living an average of 5.75 ± 7.29 years after driving cessation. Regression models on years left of driving life and years left to live post-driving cessation predicted nearly half of the variance in older drivers’ expectations with five significant predictors: income, current age, age expected to live to, self-limiting driving to nearby places and difficulty, visualizing being a non-driver. Many older drivers expect to stop driving before end of life.     

A long life with a particular signature: life course and aging for people with disabilities

What does it mean to live a long life and grow old with disabilities? Or to be an aging parent and still be a caregiver to a disabled adult child? These are questions discussed in this article, the aim of which is to show how a life course perspective adds insight to the lived experience of disability and ageing of adults with disabilities. It is argued that the time concept is fundamental to the understanding of the lives of disabled people. Results are presented which challenge established knowledge regarding disability policies, autonomy, body, biographical disruption and prerequisites of active aging.     

Advance Elder Care Decision Making

Abstract

Advances in modern technology have resulted in increasing health care options. Unfortunately, many adults do not think about health and end-of-life decisions until they are faced with a health crisis or long-term care issues. The lack of planning has left many families devastated and overwhelmed by the decisions they face on behalf of their loved ones. Social workers and other professionals are observing family members who are ill-prepared for the decisions they have to make and the roles that they undertake as a result of the failing health of an older relative. The Advance Elder Care Family Planning model (AECFP) is designed to empower families before they face these problems.     

Decoding the Miss Daisy Syndrome: An Examination of Subjective Responses to Mobility Change

The subjective responses associated with personal life space and mobility status were explored. Thirty individuals participated in focus groups based on self-rated disability status, current places visited, and availability. Qualitative analyses revealed that most participants equated personal mobility with driving a vehicle. Attitudes concerning mobility status and preparedness for change varied based on disability level and personal experience. Fear of dependence from future mobility loss was prominent in all groups. Few participants acknowledged significant planning for future retirement from driving or other mobility challenges. An understanding of common attitudes, perceptions and meanings can inform professionals who intervene and support older adults experiencing mobility changes.     

How do we capture 15 years of complex and meaningful data about young people's lives?

Abstract

This paper describes the development of a method of data collection, which captures the complexity of living situations, family dynamics and key life events of teenagers. This ‘Life History Calendar’ was adapted from earlier life history calendar methods for a multidisciplinary intergenerational study. The new calendar is able to record details of 15 years of teenage participants’ lives and can be administered to teenagers and their parents to show changes over individual lives and difference between individuals in a cohort. Referring to some preliminary data, we show that the calendar is a practical and effective method of data collection, which will be useful to researchers and practitioners working with young people and their families.     

Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism

ABSTRACT

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers’ quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life.     

The ADHD treasure hunt: a group intervention using a social model approach to disability

ABSTRACT

This article describes the ADHD Treasure Hunt - a groupwork model that integrates the spirit of a social model of disability into therapeutic practice with parents and children. Following a discussion on the discourse and controversy over the nature and treatment of ADHD in Western society, we evaluate our intervention in terms of its usefulness in addressing a family’s sense of helplessness and frustration in the face of social interactions. The model also focuses on helping the families recognize the value of their own experiential knowledge. We examine the contributions of the model to current practice as well as offer future directions for its development.     

The effects of socioeconomic inequalities of working life on health: implications for an ageing population

Abstract

This study examines suggestions that inequalities in health related to socioeconomic status (SES) will increase in older age. A representative sample of the New Zealand population aged 55–70 years (N = 6662) responded to a postal questionnaire with measures of health (SF-36), SES, and health-related behaviours. Hierarchical multiple regressions supported predictions that the SES of working life will continue to influence physical and mental health in early old age. The strongest predictor was self-reported economic living standards. This subjective measure of SES is an important construct for future investigations of health and wellbeing among older people in an ageing population.