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 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.     

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.     

"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.     

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.     

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.     

Hospice care for the child with AIDS

Hospice care was established to provide palliative (i.e., noncurative) services for the dying and their families. The advent of the AIDS epidemic has posed a challenge to hospice care, particularly for the child dying of the disease, and has adapted to modified palliative services. Parents, with a child dying of AIDS, must deal with many issues of disclosing the disease status to the child, coping with the emotions of losing a child, and when and where to incorporate hospice services into the dying process. Optimizing home based hospice care involves; (1) Nutritional management, (2) Prevention of opportunistic infections, (3) Pain management, and (4) Protection of Non-HIV positive members of hospice care. For the dying, hospice strives to achieve a peaceful death and provide supportive intervention for the survivors.     

The Grief Experience of Prison Inmate Hospice Volunteer Caregivers

Correctional institutions are obligated to provide end-of-life care to a population with complex medical needs. Prison hospices are increasingly being formed to address this demand. Few empirical studies have examined the impact of caring for dying inmates on the hospice inmate volunteers, who, in several prison health care systems, provide direct care. In this study, experiences of the inmate hospice volunteers with death were investigated to illuminate their grief processes. Understanding the bereavement needs of hospice volunteers and how prison hospice volunteers navigate grief and remain committed to providing excellent hospice care can inform the grief processes and practices of hospice care professionals.     

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.     

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.     

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.     

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.     

End-of-life care and social work education: what do students need to know?

Social workers are major service providers to people who are facing end-of-life issues including the terminally ill and their families. Yet, exemplary models for social work education and intervention methods are limited in rural states. A statewide survey conducted in Kentucky found only two social work courses dedicated to end-of-life care currently being offered by accredited undergraduate and graduate institutions. Another statewide survey found that many hospice social workers are relatively inexperienced and have a need and desire for more education on death, dying and loss. Also, unique cultural, economic and geographic areas, such as Appalachia are enigmas when it comes to the provision of end-of-life care. This partnership provides a varied perspective on delivery of end-of-life care services with an emphasis on social work interventions and education.     

The Attitudes of Social Work Students Toward End-of-Life Care Planning

This study examined the attitudes of social work students toward end-of-life care planning, as well as their degree of willingness to engage in this area of social work practice. Factors associated with their attitudes were measured through structured surveys completed by 102 social work students (N = 102) at a school of social work in the southeast. Results indicated that these social work students tended to have positive attitudes toward end-of-life care planning in general. Moreover, these attitudes were positively associated with preference for pain relief treatment, higher levels of comfort when discussing death, more emphasis on self-determination, and apprehension of conflicts of self-determination. The results of this study underscored the increased societal need for recognition of personal preferences in end-of-life care, higher levels of comfort when discussing death, and an increased commitment of social workers' to maintaining the ethical principle of the client's right to self-determination in end-of-life planning. While this is not surprising, it points to a continuing need to re-assess where the field stands in its preparation of social work professionals who will work closely with people who are dying and their families.     

End-of-Life Care and Social Work Education

Summary

Social workers are major service providers to people who are facing end-of-life issues including the terminally ill and their families. Yet, exemplary models for social work education and intervention methods are limited in rural states. A statewide survey conducted in Kentucky found only two social work courses dedicated to end-of-life care currently being offered by accredited undergraduate and graduate institutions. Another statewide survey found that many hospice social workers are relatively inexperienced and have a need and desire for more education on death, dying and loss. Also, unique cultural, economic and geographic areas, such as Appalachia are enigmas when it comes to the provision of end-of-life care. This partnership provides a varied perspective on delivery of end-of-life care services with an emphasis on social work interventions and education.     

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.     

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.     

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.     

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.