"Healthy dying": a paradoxical quest continues

Until recently the health care professions gave little systematic attention to psychosocial needs of the dying person and his or her family. There seemed to be no place for death in the prevention and cure-oriented outlook of our health care systems. This situation is now undergoing rapid change. Analysis of our society's death system indicates that "comfort care" has started to take its place along with the more dominant death system functions of curing and killing. Particular attention is given to the emergence of the hospice movement. Improved care of the terminally ill person may not be enough, however, to meet rising expectations for a higher quality of life, in general, and in the dying situation in particular. It is suggested that our society will not be content with a terminal phase of life in which physical distress is well controlled and individual dignity maintained. Rather, we seem to be questing for a form of dying that is "healthier" than ordinary life and that actualizes values whose attainment had previously been frustrated. Pleasurable dying and glorious death may be major "consumer demands" in the future.     

Palliative healthcare: cost reduction and quality enhancement using end-of-life survey methodology

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.     

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.     

The living-dying interval in nursing home-based end-of-life care: family caregivers' experiences

Guided by concepts from the living-dying interval ( Pattison, 1977 ) this study sought to explore family members' experiences with a dying nursing home resident. In-depth interviews were conducted with 31 caregivers of residents who had died. Interviews were audiotaped and transcribed. Themes that illuminated families' experiences on the living-dying interval were: an acute medical crisis (trigger events, accumulation of stressors, level of care crisis); the living-dying phase (advance care planning, hospitalization, end-stage decisions); and the terminal phase (beginning of the end, awareness of dying). The results illustrate critical periods for social work intervention with families of dying nursing home residents.     

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.     

Values Important to Terminally Ill African American Older Adults in Receiving Hospice Care

While racial disparity in the use of hospice care by older African Americans is widely acknowledged, little is known about the values that they consider as important in receiving health care services along with direct experiences with having these values respected by hospice care providers. Using individual, face-to-face interviews, data were collected directly from 28 African American hospice patients about their experiences in hospice care. Content analysis was used to identify and categorize themes from multiple readings of the qualitative data. Resulting themes included: dying at home, open communications, independent decision-making, autonomy in daily life, unwillingness to be a burden, and relationships. Through the initial assessment, value preferences can be explored and then shared with hospice team members to ensure that services are provided in such a way that their values and preferences are respected.     

A Time and Place: The Role of Social Workers in Improving End-of-Life Care

Americans are living longer, but dying after a prolonged period of management of multiple chronic illnesses and functional disabilities. Despite waves of public and professional activity targeted toward improving care for the dying and supporting the families, gaps in care and challenges in end-of-life care persist. Contentious issues such as the so-called “death panels” or physician payment for discussion of advance directives and care wishes at the end of life; aid in dying; and regarding individuals who actively choose death (case of Brittney Maynard) are continually debated in the public media. Progress toward improvement in the experience of dying remains incremental and change has been slow. With the release of a second Institute of Medicine (2014 Institute of Medicine (IOM). (2014). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: National Academy Press. [Google Scholar]) report devoted to what it means to die in America in the 21st century, momentum and opportunity for change may increase. If this is to happen, social workers will need to deliver the range of biopsychosocial care that patients and families so desperately need. However, holistic care of the individual will only improve, if the nation also addresses ongoing systemic problems in financing, policy, and service delivery in end-of-life care.     

The role of social work in the ICU: reducing family distress and facilitating end-of-life decision-making

The costs associated with Intensive Care Units (ICUs) are high and at times invasive ICU care may not be beneficial, particularly for those patients admitted to ICUs who have little hope of recovery. The process of clarifying medical goals for these patients is often facilitated by addressing psychosocial factors. Social workers in the ICU are uniquely qualified to assess and address many of the complex psychosocial circumstances and can clarify potential misperceptions, enhancing communication among patients (if capacitated), their families, and the medical team members. This can not only help improve quality of life for very sick and dying patients in the ICU and their families, but may also reduce the likelihood of decision-making conflicts from arising. Further studies need to be done to investigate the effectiveness of social work interventions in reducing family distress, avoiding care that is unwanted by patients, and demonstrating cost-saving benefits.     

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.     

Pediatric palliative and end-of-life care: the role of social work in pediatric oncology

Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pediatric palliative and end-of-life care has not been clearly defined. This survey of 131 pediatric oncology social workers identified current and best social work practices for care of children and their families at the end of life. Implications for practice, education, and research are discussed.     

Facilitating forgiveness and peaceful closure: the therapeutic value of psychosocial intervention in end-of-life care

The importance of addressing psychosocial concerns with dying patients is pivotal to facilitating peaceful closure in end of- life care. The social worker's role in recognizing and providing skilled, psychosocial intervention with patients and families in hospice programs is significant. In this article, the literature in this area is examined and a case example of a hospice patient's need for closure and the responsive social work intervention for the patient in his moment of death is provided. The case offers social work knowledge and skills and demonstrates the therapeutic benefit of addressing psychosocial needs in end-of-life care. The importance of targeted training and continued skill development for social workers in end-of-life treatment settings is emphasized.     

Pediatric Palliative and End-of-Life Care

Abstract

Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pe-diatric palliative and end-of-life care has not been clearly defined. This survey of 131 pediatric oncology social workers identified current and best social work practices for care of children and their families at the end of life. Implications for practice, education, and research are discussed.     

Rethinking Suffering: Allowing for Suffering that is Intrinsic at End of Life

The dilemma so central to the work of providers of palliative and end-of-life care is the paradox of their professional and ethical duty to try to relieve suffering and the limitations of so doing. While the capacity to sit with suffering at the end of life is critical to clinical work, the idea that some intrinsic suffering cannot necessarily always be relieved may model for patients and families that suffering can be borne. Clinicians who encounter unrelievable suffering may feel a sense of failure, helplessness, moral distress, and compassion fatigue. While tolerating suffering runs counter to the aims of palliative care, acknowledging it, bearing it, and validating it may actually help patients and families to do the same. “Sitting with suffering” signals a paradigm shift within the discipline of palliative care, as it asks clinicians to rethink their role in being able to relieve some forms of psychosocial suffering intrinsic to dying.     

Home-Based Palliative Care Study

Abstract

Purpose: To examine differences in site of death and costs of services by primary diagnosis for patients receiving home-based palliative care as compared to usual care at the end of life verity of illness, service use, and site of death.

Design and Methods: A nonequivalent group design was employed with 298 terminally ill patients diagnosed with cancer, CHF, or COPD enrolled. The treatment group received an interdisciplinary home-based palliative care program and the comparison group received usual Kaiser Permanente services. Data collected included patient demographics, se-

Results: Among all diseases, patients enrolled in palliative care were more likely to die at home. Enrollment in palliative care was significant associated with cost reductions for patients with cancer, COPD, and CHF. No significant difference was found between diagnostic groups in terms of magnitude of cost savings.

Implications: Provision of interdisciplinary home-based palliative care at end of life can effectively increase the likelihood of dying at home for patients with CHF, COPD, and cancer while realizing significant COSt savings.     

The Influence of Sociodemographic and Psychosocial Factors on Advance Care Planning

This study investigated sociodemographic and psychosocial factors that enhance or impede the completion of advance care planning, analyzing data from the Health and Retirement Study. The analytic subsample included the panel participants who died between 2006 and 2010 and who had answered the psychosocial and lifestyle questionnaire when they were alive. Multinomial logistic regression was executed to answer the research question (N = 1,056). The study found that persons who were older, who were women, who identified themselves as White, and who had higher levels of income and education were more likely to be motivated to complete advance care planning. Having greater sense of control was found to weaken the adverse relationship between being African American and the completion of advance directives. Having cancer, suffering from the illnesses for longer periods of time, and having experience of nursing home institutionalization also predicted the completion of advance care planning. Implications include incorporating a culturally tailored approach for racial/ethnic minorities and using advance directives that are clear and easily understood. In addition, future research needs to include a larger minority population and examine the extent to which variations between racial/ethnic groups exist in relation to advance care planning.     

Raising the Quality of Home Care: A Study of Service Users' Views

Raising standards is one of the key objectives of the British government's Modernizing Agenda. The quality of life of vulnerable older people who are being maintained at home is fundamentally dependent on the quality of the home‐care services they receive, so raising standards of home care is clearly central to this agenda. This paper draws on a small‐scale study of service users and providers to examine the aspects of quality of home care of importance to older people, their experiences and barriers to improvement. Six key aspects of quality were investigated: reliability, continuity, flexibility, communication, staff attitudes and skills and knowledge. If performance indicators are to have the desired effect, more work needs to be done to ensure they reflect key aspects of quality from the user perspective. We identify potential areas for improvement in commissioning and organization but these all have resource implications that will need to be met if home care is to realize its full potential in maintaining and improving quality of life for older people.     

Frame modifications with a dying client

Abstract

This paper explores the nature of the treatment frame with a client in extreme circumstances. A move is made, through frame alterations, from a more “pure” technical mode to a more humanistic one. The costs and gains of these frame modifications are evaluated and the therapist's internal experience of the process presented. The paper concludes that the traditional frame is inadequate in therapy with a dying client. Blending the customary frame with a more flexible one more fully meets the needs of the client who is in extremis, enhancing treatment and the treatment alliance.     

Treatment at the end of life

End-of-life care has gained recognition as an important interdisciplinary clinical domain during the past three decades largely because scientific and medical advances have changed the nature of dying in the US. Advances in the treatment of life-limiting ilness have typically focused on medical issues and on treating the physical symptoms that accompany the final stage of a terminal illness. However, because the lengthening life span has made more choices available at the end of life, there is also greater need for evidence-based psychosocial treatment to diminish some of the prolonged emotional, psychological treatment to diminish some of the prolonged emotional, psychological, social, and spiritual distress that accompanies dying. Both terminally ill older adults and their caregivers can be helped by interventions that address the need for information, education, preparation, communication, emotional support, and advocacy. This paper preents a review of evidence-based psychosocial treatments at the end of life for both older adults and their caregivers.     

Advance care planning throughout the end-of-life: focusing the lens for social work practice

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.