Perspectives on Palliative and End-of-Life Care

Disease, Social and Cultural Context

Rebecca S Allen, Brian D Carpenter, Morgan K. Eichorst, Rebecca S Allen, Brian D Carpenter, Morgan Eichorst, Morgan K. Eichorst

• Publisher: Routledge
• Year: 2018
• eBook ISBN: 9780429951343
• Edition: 1
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

Individuals and families face challenges at the end of life that can vary significantly depending on social and cultural contexts, yet more than ever is now known about the needs that cut across the great diversity of experiences in the face of dying and death. A number of behavioural interventions and clinical approaches to addressing these needs have been developed and are available to help providers care for clients and assist them in achieving their goals. Perspectives on Palliative and End-of-Life Care: Disease, Social and Cultural Contexts explores how these interventions can be used to address a range of issues across social and cultural contexts for those in need of end of life care.

With perspectives from experienced clinicians, providers, and caregivers from around the world, the book offers a strong foundation in contemporary evidence-based practice alongside seasoned practice insights from the field and explores interventions for people as diverse as HIV caregivers in Africa and individuals dying with dementia. In addition, readers will learn about the process of caring for individuals with chronic illnesses including severe mental illness; weigh the impact of policy regulations on the availability of and access to palliative care and interventions; and be able to compare the different issues experienced by family caregivers and formal caregivers.

As the companion volume to Perspectives on Behavioural Interventions in Palliative and End-of-Life Care, this book will be of interest to a wide variety of individuals, such as academics, researchers and postgraduates in the fields of mental health, medicine, psychology and social work. It will also be essential reading for healthcare providers and trainees from psychosocial and palliative medicine, social work and nursing.

Chapter 1
The international context of behavioural palliative and end-of-life care revisited

Rebecca S. Allen, Brian D. Carpenter, and Morgan K. Eichorst

As described in our first book, Perspectives on Behavioural Interventions in Palliative and End-of-Life Care, palliative care is defined by the World Health Organization (WHO) as meeting the physical, psychosocial, and religious/spiritual needs of patients with life-limiting, terminal, or advanced chronic or progressive illness, as well as the needs of their families and caregivers, through an interprofessional team (World Health Organization, 2002). Similarly, the 2014 Institute of Medicine (IOM) report on Dying in America defined palliative care as “relief from pain and other symptoms, that supports quality of life, and that supports patients with serious advanced illness and their families”. The IOM definition does not specifically mention psychosocial needs and largely omits reference to the potential role of behavioural health professionals.

As described in our first book, behavioural mental health and wellness interventions within the context of palliative and end-of-life care may be defined as directly addressing psychosocial issues that arise and may reflect conflicts of cognition, emotion, and communication both within the individual and within the interpersonal and environmental care context. This chapter briefly revisits the history of hospice and the palliative care movement and the theoretical models relevant to behavioural intervention delivery covered in our first book. Finally, this introductory chapter ends with an overview of content within this book.

History of the hospice and the palliative care movement in brief

The hospice movement is based on a holistic view of human nature and the fundamental idea that not only physical but also psychological, social, spiritual, and existential suffering may impede a satisfactory quality of life for the dying individual and his/her family. The modern hospice concept was developed by Cicely Saunders (Clark, 1998, 1999). In 1963, prior to the establishment of the first hospice, Saunders traveled to the United States to discuss her ideas about hospice care and soon encountered Florence Wald who later aided in the founding of the first United States hospice. Around this same time in the U.S. Elisabeth Kübler-Ross published On Death and Dying (1969), with interviews of dying patients. Thus, Saunders, Kübler-Ross, and Wald contributed to the development of the modern hospice movement in the United States, Canada, and Europe. The hospice movement spread apace in Westernized cultures (e.g., Australia) but then lagged behind in other countries and cultures (e.g., Asia, Africa) (Milicevic, 2002; Siebold, 1992).

During the 21st century, the term palliative care has emerged as a distinct, complementary model of care in comparison with hospice (Kelly & Morrison, 2015). Palliative care encompasses all phases of advanced chronic illness and may be initiated at the time of diagnosis and provided concurrently with other disease-related or curative treatments. This book emphasizes the context of palliative care internationally with consideration of specific disease contexts including HIV (Chapter 2), serious mental illness (Chapter 3), and dementia (Chapter 4). Importantly, ethical considerations (Chapter 5) and policy and reimbursement issues (Chapter 7) are considered using an international lens.

Unfortunately, direct attention to mental and behavioural health within palliative and hospice care systems has lagged behind its recognition and alleviation of physical, and perhaps even spiritual, symptoms. Kasl-Godley and colleagues (Kasl-Godley, King, & Quill, 2014) describe the work of psychologists practicing in primary care settings wherein palliative care may be provided. These authors provide case illustration to enrich their discussion of needed competencies for work in palliative care. Psychologists may bring unique theoretical knowledge, expertise in program evaluation, and other research skills into intervention design and delivery across wide-ranging disease and treatment contexts. Foundational knowledge in the biopsychosocial model, as well as developmental and stress and coping theories, may guide treatment and facilitate the functioning of and communication within interprofessional teams. These models and theories are described in our first book and will only briefly be reviewed here.

The biopsychosocial-spiritual model and lifespan stress and coping theories revisited

The cornerstone of this model is the premise that individuals are innately spiritual, as many individuals search for transcendent meaning, perhaps particularly near the end of life. Sulmasy (2002) elaborates upon Engel’s (1977) original bio-psychosocial model by adding spirituality and proposes assessing four domains as necessary in the measurement of healing, including religiosity, spiritual/religious coping, spiritual well-being, and spiritual need. Hence, in addition to addressing biological needs for the relief of suffering in palliative and end-of-life care, psychosocial and spiritual needs require direct attention and possible intervention for healing. As suggested by Sulmasy’s expansion of the biopsychosocial model, many interventions targeting behavioural and mental health and wellness near the end of life incorporate elements of meaning-seeking or spirituality into their treatment approach.

Lifespan development theories, including socioemotional selectivity theory (Carstensen, Fung, & Charles, 2003; Carstensen, Isaacowitz, & Charles, 1999) and the strength and vulnerability integration model (Charles, 2010), posit that a foreshortened perspective on time left to live shifts an individual’s motivation toward regulating emotions and engaging in meaningful activities. Stress and coping theories also have considered the importance of meaning-making and suggested how these activities sustain the coping process (Folkman, 1997; Lazarus & Folkman, 1984). Clearly, individuals of different ages or developmental “stages” may approach the end of their lives with differing levels of acceptance and proclivities for positive or negative emotional reactions. Thus, behavioural interventions often focus on individuals’ development by considering lifetime accomplishments and challenges, relationships, and values.

Scope of this book: disease, social and cultural contexts

The overarching goal of these texts is to offer accessible resources for scientists, practitioners, and trainees with relevant information on the context of behavioural and psychosocial mental health and wellness interventions in palliative and end-of-life care. Hence, the first section of this book describes behavioural interventions within specific disease contexts, including living and dying globally with HIV/AIDS (Chapter 2), individuals with serious mental illness (Chapter 3), and individuals with dementia (Chapter 4). The second section of this book focuses on the social and cultural contexts of behavioural interventions in palliative and end-of-life care. Ethical considerations are reviewed in Chapter 5. Chapter 6 describes the immense variation in bereavement practices across cultures. Finally, policy issues including reimbursement models are covered in Chapter 7.

Across the two books, the editors recruited 11 writing groups of authors who were asked to include in their work certain material in every chapter. Thus, each chapter includes: 1) a review of behavioural interventions, 2) an evaluation of the strength of the evidence base of intervention and topic-based research, 3) identification of gaps within the knowledge base, 4) coverage of cultural and diversity issues, 5) consideration of ethical issues, 6) practice implications, and 7) at least one case example with questions illustrating salient issues. Of necessity, chapter content and emphasis varies by topic in each book. In every chapter, an attempt has been made to address palliative and end-of-life care globally, but each chapter is written by an authorship team from a specific national or regional perspective. While authors are primarily from the United States, Europe, and Canada, perspectives from Africa and Australia are included in certain chapters.

The global growth in palliative care necessitates a renewed focus on behavioural and psychosocial issues. Definitions of palliative care provided by WHO and the IOM within the United States have not traditionally emphasized the potential role of psychologists and other behavioural healthcare providers in addressing these issues in clinical and scientific realms. Our hope is that these books will provide a foundation for collaborative international and interprofessional work by providing state-of-science information on behavioural interventions addressing mental health and wellness in palliative and end-of-life care.

References

Carstensen, L. L., Fung, H. H., & Charles, S. T. (2003). Socioemotional selectivity theory and the regulation of emotions in the second half of life. Motivation and Emotion, 27 (2), 103–123.

Carstensen, L. L., Isaacowitz, D. M., & Charles, S. T. (1999). Taking time seriously: A theory of socioemotional selectivity theory. American Psychologist, 54 (3), 165–181.

Charles, S. T. (2010). Strength and vulnerability integration: A model of emotional well-being across adulthood. Psychological Bulletin, 136 (3), 1068–1091.

Clark, D. (1998). Originating a movement: Cicely Saunders and the development of St. Christopher’s hospice, 1957–1967. Mortality, 3, 43–63.

Clark, D. (1999). “Total pain”, disciplinary power and the body in the work of Cicely Saunders, 1958–1967. Social Science & Medicine, 49, 727–736.

Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196 (4286), 129–136.

Folkman, S. (1997). Positive psychological states and coping with severe stress. Social Sciences and Medicine, 45, 1207–1221.

Institute of Medicine. (2014). Dying in America: Improving quality and honoring preferences near the end of life. Washington, DC: The National Academies Press.

Kasl-Godley, J. E., King, D. A., & Quill, T. A. (2014). Opportunities for psycholoists in palliative care: Working with patients and families across the disease continuum. American Psychologist, 69 (4), 364–376.

Kelly, A. S., & Morrison, R. S. (2015). Palliative care for the seriously ill. New England Journal of Medicine, 373 (8), 747–755.

Kübler-Ross, E. (1969). On death and dying. New York: Scribner.

Lazarus, R. S., & Folkman, S., (1984). Stress, appraisal, and coping. New York: Springer.

Milicevic, N. (2002). The hospice movement: History and current worldwide situation. Archives of Oncology, 10, 29–32.

Siebold, C. (1992). The hospice movement: Easing death’s pains. New York: Maxwell Macmillan International.

Sulmasy, D. P. (2002). A biopsychosocial-spiritual model for the care of patients at the end of life. The Gerontologist, 42 (Spec. no. III), 24–33.

World Health Organization. (2002). The world health report 2002: Reducing risks, promoting healthy life. World Health Organization. Retrieved from www.barnesandnoble.com/w/world-health-report-2002-world-health-organization/1119231978?ean=9789241562072

Section 1
Specific populations and palliative and EOL care

Chapter 2
Living and dying well with HIV/AIDS

Christina P. Parker, Ellen L. Csikai, and Pamela Payne Foster

Chapter introduction

Despite the advent and accessibility of highly active antiretroviral therapies (HAARTs), HIV disease still presents numerous palliative care challenges and opportunities related to aging, multimorbidity, managing psychological symptoms, pain, and medication adherence. This chapter presents an overview of the behavioral (psychological, social, and spiritual) interventions related to palliative and hospice care for individuals diagnosed with human immunodeficiency virus (HIV). Additionally, we describe and evaluate the state of palliative and hospice care for people with HIV/AIDS diagnoses, as well as identify emerging cultural, diversity, and ethical issues in treatment provision. Authors also discuss implications for future research and treatment both from a “Deep South” (U.S.) as well as g...

Table of contents

• Cover
• Title
• Copyright
• Contents
• List of contributors
• 1 The international context of behavioural palliative and end-of-life care revisited
• SECTION 1 Specific populations and palliative and EOL care
• SECTION 2 Social and cultural contexts, including ethics, bereavement, and policy issues
• Index