Palliative Care and Pain Control in Older Persons and Those with Terminal Illness
Perry G. Fine
The recent and rapidly growing emphasis on optimizing quality of life throughout the course of chronic progressive illness reflects a rededication to humanistic principles in the health care professions. This modern movement can be traced to several converging initiatives in the latter decades of the 20th century that recognized that “good medicine” requires attention to the burden of disease for the patient and family in addition to disease-specific, biomedically focused treatments. The global hospice movement, the World Health Organization (WHO) cancer pain relief program, and the worldwide emergence of pain medicine as a differentiated specialty that recognizes the importance of interdisciplinary care for complex pain-related disorders all contributed to this still-evolving shift in thinking. In economically developed nations, a major force driving this paradigm change is the substantial economic impact of contemporary medical and public health efforts. Such efforts have increased not only life expectancy but also costs of care to the point where such costs consume a significant and rising portion of the gross domestic product. For example, advancing rates of hospitalization during progressive illness result in almost a third of the total $100 billion U.S. Medicare budget spent on health care costs in the last year of life, and one-sixth of the total spent in the last 2 months of life, even though significant deficiencies continue to be documented for outcomes such as pain control or adherence to advance directives (1,2). These topics are described in greater detail in other chapters of this volume, such as Chapter 28 by Gallagher and Fishman on the emergence of pain medicine as a specialty, and Chapter 29 by Loeser on socioeconomic factors in pain management.
Hygiene and medical technology have together not only prolonged life, but extended the process of dying. In the face of accumulated comorbid conditions, the burdens of illness are numerous and, without due attention and skillful intervention, these can lead to tremendous unnecessary suffering and despair, and financial hardship. These burdens increase with advancing age, as described by Helme and Fleming in the preceding chapter on the treatment of pain in older people. Optimizing quality of life for the patient and family throughout the entire disease trajectory, including bereavement, has become the province of the current palliative care movement. Notwithstanding the limited curative and disease-modifying therapies available at the time, in retrospect, Sir William Osler was uncannily prescient when he stated a century ago, “Care more particularly for the individual patient than for the special features of the disease. To accept a great group of maladies, against which we have never had and can scarcely ever hope to have curative measures, makes some men as sensitive as though we were ourselves responsible for their existence. These very cases are ‘rocks of offence’ to many good fellows whose moral decline dates from the rash promise to cure. We work by wit and not by witchcraft, and while patients have our tenderest care, and we must do what is best for the relief of their sufferings, we should not bring the art of medicine into disrepute by quack-like promises to heal, or by wire-drawn attempts at cure, adding ‘continuate and inexorable maladies’” (3).
Although the substance of the present chapter is relevant across medical disciplines and specialties, it is intended to capture the collective wisdom and imagination of anesthesiologists in particular. Anesthesiologists—especially those with additional training and credentials in pain management—may be called upon as consultants to help relieve pain and related forms of suffering. Far too few anesthesiologists, however, have entered palliative care practice (including hospice as an end-of-life domain of palliative care) as integrated members of a palliative care or hospice team. This gap is unfortunate because the knowledge and skills acquired during anesthesiology postgraduate training and clinical practice well prepare anesthesiologists to relieve many of the burdens associated with advanced illness. The unique combination of expertise in neural blockade, analgesic pharmacology, and sedation (based on experience and skill in safe, effective, goal-directed drug titration that is a hallmark of anesthesiology) and the carefully cultivated ability to create an environment of calm among seriously ill, anxious, and agitated patients and their families, together create an invaluable foundation from which to contribute to palliative care teams (4).
Social Change and Recent Developments
Palliative care has long been a recognized field in British Commonwealth nations, but it has been slower to develop in the United States and in many other nations. From the author’s North American perspective, an inflection point occurred in the United States 25 years ago, upon legislative passage of the Medicare Hospice Benefit in 1982. Since then, access and utilization of hospice services have increased dramatically to an annual level of over one million patients served by hospice programs (5). Moreover, the 1995 SUPPORT study (6), which showed egregious deficiencies in end-of-life care, and the 1997 report from the U.S. Institute of Medicine (2), which provided a comprehensive assessment and elaboration of needs, prompted
influential philanthropic foundations such as the Robert Wood Johnson and Mayday Funds to foster improvement in end-of-life care. As a result, there is now a burgeoning academic discipline of palliative medicine, including fellowship training programs for physicians and approval in 2006 by the American Board of Medical Specialties of a medical subspecialty in palliative medicine. Largely through the efforts of the Center to Advance Palliative Care (CAPC) at Mount Sinai School of Medicine in New York City, a sizeable proportion of U.S. hospitals currently have some form of organized palliative care consultation service. This was accomplished by philanthropic funding of regional training courses around the nation, led by CAPC faculty. Participants were instructed in ways to engender support for program development and operations in their parent institutions.
influential philanthropic foundations such as the Robert Wood Johnson and Mayday Funds to foster improvement in end-of-life care. As a result, there is now a burgeoning academic discipline of palliative medicine, including fellowship training programs for physicians and approval in 2006 by the American Board of Medical Specialties of a medical subspecialty in palliative medicine. Largely through the efforts of the Center to Advance Palliative Care (CAPC) at Mount Sinai School of Medicine in New York City, a sizeable proportion of U.S. hospitals currently have some form of organized palliative care consultation service. This was accomplished by philanthropic funding of regional training courses around the nation, led by CAPC faculty. Participants were instructed in ways to engender support for program development and operations in their parent institutions.
On a global basis, the initial 2004 IASP-EFIC-WHO Global Day Against Pain clearly enunciated the concept that pain relief should be a universal human right, as encapsulated in an accompanying editorial statement and subsequently reviewed in detail (7). Key elements of that message included that satisfactory palliation of pain in patients with substantial life expectancy, as well as in the terminally ill hospice population, should be achievable in most circumstances, and patients should be educated to expect that reasonable measures will be taken to achieve pain relief and support quality of life. Efforts are now being made by the National Hospice and Palliative Care Organization and the Foundation for Hospice in Sub-Saharan Africa, among others, to translate and export the lessons learned through these experiences to economically developing and underdeveloped nations, in order to mitigate the overwhelming consequences of the acquired immune deficiency syndrome (AIDS) epidemic and other life-limiting diseases that produce great suffering and high mortality rates.
In recent years, several evidence-based and consensus guidelines and supporting documents in the somewhat overlapping areas of geriatric pain management (Chapter 48) and palliative care address what “good care” can and should be. The first guideline that specifically addressed pain care for older patients was developed by a committee under the auspices of the American Geriatrics Society in 1998, with a revision in 2002 (8). Subsequently, the American Medical Directors Association created a similar document, to direct attention to appreciable deficiencies in pain assessment and management in nursing homes (institutional long-term care settings) (9). Most recently, the Canadian and U.S. governments have funded an interdisciplinary panel of experts to create a consensus document on the assessment of pain in older patients experiencing pain (10). The results of these efforts on patient outcomes have yet to be determined, but adherence to pain assessment and management processes and procedures is now required for U.S. nursing homes to pass regulatory surveys.
The late 2000s witnessed a convergence of extraordinary efforts to create systematic change in end-of-life care in North America. In 2004, the National Consensus Project for Quality Palliative Care, a consortium of professional organizations including the American Academy of Hospice and Palliative Care (AAHPM), the Center to Advance Palliative Care (CAPC), the Hospice and Palliative Nurses Association (HPNA), the National Hospice and Palliative Care Organization (NHPCO), and the Last Acts Partnership (subsequently merged into NHPCO), produced a monograph entitled “Clinical Practice Guidelines for Quality Palliative Care” (http:www.nationalconsensusproject.org). This document expands upon domains drawn from the work of previous efforts to produce standards of care in this field (Australia, New Zealand, Canada, Children’s Hospice International, and the NHPCO) (Table 49-1). More recently, a framework for preferred practices in palliative and hospice care has been embraced by the National Quality Forum (NQF), a private consortium of not-for-profit organizations created to develop and implement a national strategy for health care quality measurement and reporting (http://www.qualityforum.org/txpalliative1pager+RCpublic4-05-05.pdf).
The National Hospice and Palliative Care Organization convened an expert panel to create and publish a research agenda for palliative care, a field that historically has had sparse funding for research and, for this and other reasons such as a culture that emphasized bedside care over clinical research, a very limited evidence base (11). Growing awareness of this problem led the U.S. National Institutes of Health (NIH) to host a State-of-the-Science conference in December, 2004, the recommendations from which have been published (12). In a similar vein, the NIH also hosted an expert task force to create guidelines for ethical research in end-of-life care, and these findings, too, have been published in the peer-reviewed medical literature (13). Together, these guidelines, policy statements, and consensus documents provide a roadmap to direct improvements in all aspects of palliative care and templates for the creation of standards and outcome measures.
Definitions
The WHO has defined palliative care as: The active and total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. (14). This definition has been modified by the NQF in its recently approved consensus document entitled “National Framework and Preferred Practices for Palliative and Hospice Care” to read: Palliative care means patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice (15). Note how this latter definition broadens care. That is, the time frame to begin palliative care has been moved “upstream” to include patients for whom curative and disease-modifying interventions may add years of life.
Because of the expansion of the time frame of palliative care, hospice care is now viewed as a “subset” of palliative care. Hospice care is therefore now defined by the NQF consensus group as: A service delivery system that provides palliative care for patients that have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition. It also supports family members coping with the complex consequences of illness, disability, and aging as death nears. Hospice care further addresses bereavement needs of the family following the death of the patient (15). An integrated model of these concepts, which ties them together as a system of care that addresses the needs of patients throughout the continuum of care, is shown in Figure 49-1.
The Ethical Imperative to Relieve Pain at Life’s End
In patients with far-advanced disease, beyond the subjective nature of suffering, unrelieved persistent pain negatively impacts
functional capacities, cognitive and emotional states, and, perhaps, survival. Yet, despite recent strong evidence to the contrary (16,17), aggressive pain control has in the past sometimes been erroneously assumed and taught to contribute to reduced life expectancy. Less quantifiable, but of tremendous significance to patients and their families, is the suffering, erosion of the sense of self, and loss of will to live caused by incessant, unrelieved severe pain (18,19). Furthermore, poorly managed pain is a frequent cause of readmission to the acute care hospital, which adds significantly to patient care costs (20).
functional capacities, cognitive and emotional states, and, perhaps, survival. Yet, despite recent strong evidence to the contrary (16,17), aggressive pain control has in the past sometimes been erroneously assumed and taught to contribute to reduced life expectancy. Less quantifiable, but of tremendous significance to patients and their families, is the suffering, erosion of the sense of self, and loss of will to live caused by incessant, unrelieved severe pain (18,19). Furthermore, poorly managed pain is a frequent cause of readmission to the acute care hospital, which adds significantly to patient care costs (20).
Table 49-1 Domains and guidelines for quality palliative care | ||
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