The opening quote from the Institute of Medicine stands in stark contrast to the reality that dying can be the last great time of living. Sadly, multiple studies have confirmed the poor quality of end-of-life care in North America. If the health care system is part of what stands between people and their ability to access the potential qualities of that time of life, the system needs to ask, What happened? Part of the answer comes from the fact that the way people die has changed over the past 100 years. Most people now die with one or more chronic illnesses and often demonstrate a predictable, slow decline in function. Another part of the answer must note that the emphasis in medical care has been on technology, cure, and life prolongation, and some societal expectations have also been youth-oriented and similarly disinclined to afford dying its place. The medical and social cultures offered little that was appropriate for those who were dying. Therefore, these patients stayed in the sick role rather than entering the dying role, and they received interventions designed for cure and recovery.
Both the health care system and society have great capacity to react, however, and a set of countermovement initiatives began. In a parallel to the home birthing movement, which was a reaction to the intense focus on technology in obstetrics, people facing the other end of life also began to seek control over their dying. Some pushed for assisted suicide, whereas others sought and found ways to protect the human meaning that could be found in dying; this approach was supplied by hospice palliative care, and more people began to seek home hospice and palliative care at the end of life. The pioneers and leaders of hospice and palliative care constructed a coherent analysis of what needed to be fixed. It was a radical list, as the Foreword by Mount describes. Hospice and palliative care developed rapidly in a movement that made hospice a household word and palliative care a type of care that people now know they can demand from their health care delivery organization. Looking back at three decades of progress, it seems fair to say that the early decades of hospice and palliative care can be understood as a successful call to action to address the observed deficiencies in end-of-life care that had come to characterize the modern North American health care systems.
This chapter delineates what constitutes palliative care and what is quality end-of-life care. It illustrates how palliative care seeks to change the norms of health care so that palliative care can be integrated into all of health care, summarizes some remaining challenges in palliative care for both the practicing clinician and the health care system, and explores challenges for palliative care in the global setting.
This book goes on to outline the following: the core competencies of end-of-life care, which can now be taught to future generations of health care professionals; essential palliative care skills for specialty settings, which can now be taught in specialty training programs; and service delivery features in palliative care that should be essential knowledge for all health care administrators and community practitioners of all professions. This book ends with a broad overview of the social setting in which palliative care is still facing major challenges, including a hard look at the role of financial devastation in the illness experience and a look at global challenges. Finally, the Appendixes (available online at www.expertconsult.com ) offer a drug formulary, further resources for professionals, and further resources for patients and their informal caregivers.
Definition of Palliative Care
The terms hospice and end-of-life care can be seen as synonyms for palliative care. Although each term has distinguishing features, for simplicity we use palliative care throughout this book to denote either or both.
The World Health Organization (WHO) has defined palliative care as follows :
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care:
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provides relief from pain and other distressing symptoms
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affirms life and regards dying as a normal process
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intends neither to hasten or postpone death
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integrates the psychological and spiritual aspects of patient care
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offers a support system to help patients live as actively as possible until death
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offers a support system to help the family cope during the patient’s illness and in their own bereavement
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uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
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will enhance quality of life, and may also positively influence the course of illness
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is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications
The attributes of palliative care have been articulated in a consensus document from Canada. These attributes support the WHO definition and guide all aspects of care at the end of life. They are as follows:
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Patient-family focused. Because patients are typically part of a family, when care is provided, the patient and family are treated as a unit. All aspects of care are provided in a manner that is sensitive to the patient’s and family’s personal, cultural, and religious values, beliefs, and practices; their developmental state; and their preparedness to deal with the dying process.
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High quality. All hospice palliative care activities are guided by the following: the ethical principles of autonomy, beneficence, nonmaleficence, justice, truth telling, and confidentiality; standards of practice that are based on nationally accepted principles and norms of practice and standards of professional conduct for each discipline; policies and procedures that are based on the best available evidence or opinion-based preferred practice guidelines; and data collection and documentation guidelines that are based on validated measurement tools.
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Safe and effective . All hospice palliative care activities are conducted in a manner that is collaborative; ensures confidentiality and privacy; is without coercion, discrimination, harassment, or prejudice; ensures safety and security for all participants; ensures continuity and accountability; aims to minimize unnecessary duplication and repetition; and complies with laws, regulations, and policies in effect within the jurisdiction, host, and palliative care organizations.
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Accessible. All patients and families have equal access to timely hospice palliative care services, wherever they live at home or can access services within a reasonable distance from their home.
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Adequately resourced. The financial, human, information, physical, and community resources are sufficient to sustain the organization’s activities and its strategic and business plans. Sufficient resources are allocated to each of the organization’s activities.
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Collaborative. Each community’s needs for hospice palliative care are assessed and addressed through the collaborative efforts of available organizations and services in partnership.
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Knowledge based. Ongoing education of all patients, families, caregivers, staff, and stakeholders is integral to the provision and advancement of high-quality hospice palliative care.
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Advocacy based. Regular interaction with legislators, regulators, policy makers, health care funders, other palliative care providers, professional societies and associations, and the public is essential to increase awareness about and to develop palliative care activities and the resources that support them. All advocacy is based on nationally accepted norms of practice.
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Research based. The development, dissemination, and integration of new knowledge are critical to the advancement of high-quality hospice palliative care. When possible, all activities are based on the best available evidence. All research protocols comply with legislation and regulations in effect within the jurisdiction that govern research and the involvement of human subjects.
Concepts of Quality of Life and Quality of Dying
As palliative care made its case and consolidated its progress, it had to respond to those who saw no need and asked, Why should care be changed? It also had to respond to the skeptics who asked, Is it possible to have a quality of life at the end of life or a quality of dying? For those who wanted change but needed direction, it had to respond to the question, What are those issues that are important to patients and families at the end of life? The following studies, among others, identify guiding answers to these questions.
One study interviewed 385 U.S. residents in 32 cities using a qualitative interview and focus group–based method. Those who were interviewed were not yet facing a terminal illness and reflected mixed demographics, including age, race, culture, and religion. These persons articulated their concerns, hopes, and beliefs about the process of dying. They feared being hooked up to machines at the end of life and preferred a natural death with loved ones in familiar surroundings. They did not believe that the current health care system supported their ideal concept of dying, and although they thought it was important to plan for dying and death, they were uncomfortable with the topic and resisted taking action. They said that family consideration was their primary concern in making end-of-life decisions. Finally, they reported that the current planning options did not support the way they wanted to manage dying and the death experience.
In another study, 126 patients from three groups (patients undergoing dialysis, patients with human immunodeficiency virus [HIV] disease, and chronic care patients) were interviewed to explore their views about what constitutes good end-of-life care. A qualitative analysis was done, and certain themes were identified. These included receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones.
Similarly, in March 1999 through August 1999, another study conducted a cross-sectional, stratified, random, national survey of seriously ill patients ( n = 340), recently bereaved family ( n = 332), physicians ( n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429) and found similar themes. The investigators also identified items that were consistently rated as important (>70% responded that the item is important) across all four groups, including pain and symptom management, preparation for death, a sense of completion, decisions about treatment preferences, and being treated as a “whole person.” Eight items received strong importance ratings from patients but were not rated as highly by physicians ( P < .001). These items included being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within, as well as among, the four groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among nine major attributes.
Palliative Care as a Revolution
The palliative care movement has been revolutionary in that it insisted on a return to the professional values of health care that seemed to have been too much overlooked at the time. The changes required were applicable to most settings of health care. So perhaps it is ironic that it began as a movement on the fringes of the system, providing hospice care as a charity. Palliative care is based on a clear and coherent philosophy of care that Dame Cicely Saunders first articulated as care of the whole person. This comprehensive model of care was interprofessional from the beginning in that it recognized the need to meet physical, psychological, social, and spiritual needs of dying patients and their families. An important goal in palliative care is to educate the patient and family about dying and death. Another goal is to integrate care across the continuum of care stages, even when the doctors or sites of care change; palliative care seeks to bridge these changes by communicating and transferring the patient’s goals of care and resultant care plans from one team to another. Care is also extended beyond the patient’s death to reflect a concern for the grief outcomes of family members.
In this new model of care, death is not seen as the “enemy” but rather as an acceptable outcome. The dying are seen as having an important role, complete with tasks and expectations, that is different from the sick role when recovery is expectable. The goal is not to prolong or shorten life; rather, the process of dying is to be freed of as much unnecessary suffering as possible. The inevitable dimensions of suffering that do accompany dying and death can be soothed by finding meaning and purpose in the life lived and by enhancing quality of life and the quality of the dying process. The model is not technology based, but it does accept technology when it reduces suffering. The model is based on a comprehensive, humanistic approach to suffering and dying. It attempts to make end-of-life care as comprehensive and important as care at the beginning of life. The philosophy of palliative care is remarkably similar throughout many countries; this reality may be understood as evidence for the fundamental need and place of palliative care in medicine and medicine’s mandate to care for people who face illness-related suffering.
Palliative care has grown progressively as an international movement and has many national and international organizations that promote better care for the dying across all continents. Specialists have developed in all health care professions, and a large volunteer component has emerged to support care for patients and families. There has been a tremendous growth in knowledge about dying and death in our society, and research is now taking on a level of sophistication that parallels any other area in medicine. The public, especially in developed nations but also those that are resource constrained, has become more aware of the option of palliative care. For professionals, many new text and web resources, comprehensive education programs, research efforts, and specialty journals are devoted to enhancing end-of-life care.
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