Definitions and Models of Palliative Care

J. Andrew Billings

In the past decade, palliative care has emerged as a recognized entity in American medicine, although its definition, scope, structure, clinical methods, and value remain poorly understood.

Palliative care clinicians face two troublesome issues in introducing themselves to a patient, family, or health care professional. First, the term palliative care service is still unfamiliar to many people. A simple, straightforward, concise explanation is called for, yet just a few words rarely suffice. Other specialists—for example, a cardiologist (“a heart doctor”) or an orthopedist (“a bone surgeon”)—are unlikely to be asked to define their field of expertise in more than a couple of terms, nor feel challenged by such an undertaking, yet this task regularly confront the palliative care clinician.

Second, a full explanation of palliative care, at least as defined by many in the field, necessarily refers to death, a potentially frightening topic that the patient and family, as well as the palliative care clinician, may wish to avoid, particularly in the first moments of an intake interview. The clinician, before broaching such difficult matters as end-of-life care, wants to first listen to the patient and family (1) and understand their perspectives and information preferences, while avoiding “saying something wrong.” A nuanced description of palliative care services, especially for strangers facing dying, is a challenge. Phrases such as “terminal care,” “life-threatening illness,” “life-limiting illness,” or even “seriously ill” may stick in the clinician’s mouth. One searches for euphemisms in these opening moments, yet struggles to establish a relationship that is based on authenticity and measured frankness. Moreover, regardless of the simplicity and immediate acceptability of our explanations, patients and families will become familiar with the notion of palliative care as it becomes more widely available, just as they now are with hospice. Regardless of any name we chose, laypersons will associate palliative care services with death, and hence giving up, hopelessness, suffering, and other regularly shunned notions.

To complicate this awkward situation, interpretations of the meaning of palliative care and of its scope vary within the palliative and larger health care communities, reflecting the evolving nature of this not-yet-fully formed young field (2, 3). The scope of palliative medicine remains an issue for debate, ranging from absurdly broad definitions as “alleviation of symptoms,” “improving quality of life,” or treating patients “not responsive to curative treatment” or with “complex and serious illness” to extremely narrow notions of “care in the final months of life” or a subspecialty of oncology. Approaches to identifying a final phase of life during which palliative care is appropriate—a time of “transition”—have not been clinically useful (4, 5, 6, 7). Such differences in definition reflect frank disagreement about the appropriate scope of the field and have important implications for its future. Differences also exist across countries, and hence the focus in this chapter is on the United States, where the distinction between palliative care and hospice is a particularly important issue. The bewildering lack of consensus may be viewed generously as an early stage in the development of a field that still is formulating some of its most basic features.

Until 2004, the United States lacked elementary guidelines for palliative care programs—structure and scope of services, criteria for judging adequacy of services, standards for professional staffing and training, and so forth (8). A major step forward in the development of the field is contained in the Clinical Practice Guidelines for Quality Palliative Care (9), developed by the National Consensus Project for Quality Palliative Care (http://www.nationalconsensusproject.org), a group of over 100 representatives from the palliative care community. Along with a useful definition, discussed in the subsequent text, the document includes an overview of the field and seven domains of practice—structure and process of care; physical psychological, social, religious, spiritual, existential, cultural, ethical and legal aspects of care; and care of the imminently dying patient—each associated with specific criteria. These guidelines incorporate important previous documents, including recommendations from a variety of professional organizations in medicine and nursing, national standards developed from other countries, reports from the Institute of Medicine, Standards of Practice for Hospice Programs (10) from the National Hospice and Palliative Care Organization, and Initial Voluntary Program Standards for Fellowships Training in Palliative Medicine (11).

Any description of palliative care and the hospice movement should hark back to Cicely Saunders, who developed the first modern palliative care program at St. Christopher’s Hospice in London (12). She described the fundamental hospice philosophy or hospice approach to care—skilled care that addressed physical, psychosocial, and spiritual needs of the patient and family—that forms the basis for palliative care programs throughout the world. Many current programs characterize themselves as a “hospice” or may use that word to indicate a freestanding unit where dying persons reside and receive care, similar to St. Christopher’s Hospice. The word “hospice,” however, had unacceptable connotations in French-speaking Canada, leading Balfour Mount around 1973 to coin the term palliative care for describing his new program at the Royal Victoria Hospital in Montreal (13), the first hospice-like unit based in an academic teaching hospital (14). “Palliative
care” and the related term palliative medicine have become the labels of choice throughout the world for programs based on the hospice philosophy, and as discussed more fully in the subsequent text, are now being used increasingly in the United States (15, 16, 17, 18, 19, 20, 21, 22). where hospice programs constituted a first wave of the hospice movement in this program, followed by the second wave of palliative care. “Palliative care” overlaps with “terminal care,” “death-and-dying,” “hospice,” “end-of-life care,” “thanatology,” “comfort care” (23), care of “patients who may die soon and their families” (24), “supportive care” (25, 26) (this term sometimes refers to comfort care, as well as to support of the compromised host or critically ill patient, particularly those suffering adverse effects of cancer treatment), and, more recently, “hospice palliative care” (21). The diversity of meanings of these terms and their unfamiliarity to many persons can bewilder patients, family members, and colleagues in the health professions.

It is worth noting here that the scope of a field need not have sharp borders, defining exclusive territory. A variety of specialists have distinctive expertise, for instance, in pain medicine, but the existence of the specialty of pain medicine does not undermine or exclude these other fields or require that they delegate particular clinical activities to specialists.

Seeking a definition for palliative care is not an idle exercise in wordsmithing, but an essential search to clarify the nature of the field. This chapter attempts to provide clarification and to stimulate further discussion about the definition and standards for palliative care.

Common Definitions of Palliative Care

… the meaning of a word is its use in the language (27).

“To palliate” literally means “to cloak.” This phrase can be used to describe measures that ease suffering—that alleviate without curing—but also can connote glossing over or even giving a deceptively attractive appearance to a significant underlying problem. Therefore, for clinicians, palliation can be viewed disapprovingly as merely covering up problems. Terms such as comfort measures only or palliation only suggest withholding, passivity, or giving up, whereas “best supportive care” at least suggests high quality and action. However, as currently used in American medicine, “palliative care” has become a widely accepted term for an approach to the management of a terminal illness that focuses on symptom control and support rather than on cure or life prolongation.

Anticancer treatments, such as chemotherapy or radiation, that are used to improve quality of life without an expectation of prolonging life may be described as having “palliative intent.” Interventions that were previously dismissed as ineffective in terms of such outcomes as survival, disease-free survival, tumor response, or performance status can still be valued in terms of relief of specific symptoms, psychosocial well-being, and quality of life. Such usages of the term importantly underscore the lack of clear boundaries between treatment of an underlying disease and the alleviation of symptoms. If palliative care is to assist patients at all phases of care, including a patient waiting for a transplant who is seeking a cure or life prolongation, we should avoid the vague distinctions about “curative,” “life-prolonging,” “improving quality of life” and about the intent or effect of conventional treatments or what we do not do, while focusing on our “value added.”

Two widely cited definitions of “palliative care” deserve note. First, the World Health Organization (WHO), in its 1990 publication Cancer Pain Relief and Palliative Care, defined the term as “the active total care of patients whose disease is not responsive to curative treatment” (28).

This definition is not very helpful to patients and should be offensive to medical colleagues, who, it implies, deal only with inactive or partial care or with curative treatment! The term active is presumably included here to dispel notions that palliative care is passive or focused simply on avoiding interventions but seems to add little to the definition. What is inactive care? Palliative care clinicians certainly cannot claim special expertise in the vast number of diseases that do not respond to curative treatment. Also, ideally, our definition should focus on the positive aspects of the work, such as helping patients and families live well or promoting their quality of life. Here, the emphasis on failure—“not responsive to curative treatment”—seems unnecessarily gloomy but perhaps is fairly gentle and acceptably euphemistic. The commonly stated but problematic distinctions between palliation and curative or life-prolonging (or “life-extending”) treatment (or treatment with “aggressive intent”) are not invoked.

One strength of the WHO definition is the assertion that palliative care should address all forms of suffering (28): “total care.” Related terms are “total pain or suffering,” “holistic care,” “total palliative care,” and “multidimensional care.” Unfortunately, such claims can sound a bit overinflated or unrealistically ambitious. Holism is a bankrupt term, a notion that should serve as a red light that often signals nonsense. It has lost its cachet in thoughtful social science circles (29), and the term is now regularly used synonymously with alternative or complementary medicine. Therefore, holism, rather than implying a multifaceted, inclusive vision of health and illness, often stands for an unproven or idiosyncratic approach to care and a rejection of mainline medicine. A derogatory term, symptomatologists, has been introduced by Kearney (30) and might be used to describe caregivers who limit their attention to physical complaints but do not address the overall suffering of the person (31). Comprehensive care is a preferable term, especially because it already has established meaning in health services literature and avoids pretentious or confusing implications of the other terms (32). Other characteristics of palliative care that might be related to or subsumed by the term comprehensive are “interdisciplinary,” “coordinated,” “integrated,” “accessible,” “case management,” “disease management,” and perhaps “humanistic” care.

This WHO definition and related definitions are followed by a longer attempt at clarification:

“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 possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment” (28).

These additional assertions are helpful, although they do not clearly distinguish palliative care from other clinical fields. Many clinicians recognize the importance of comfort and support in terminal disease as well as in nonterminal disease. Arguably, all of medicine can be viewed as seeking the goal of quality of life. Moreover, the association of palliative care solely with cancer is misleading.

A second definition of palliative care, used by the authors of The Oxford Textbook of Palliative Medicine, first published in 1993, has also been widely cited:

“The study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is the quality of life” (33).

This definition is more concise and more precise than the WHO phrases. By choosing a word such as “focus,” it avoids making palliative care a conflicting or totally separate approach from “conventional,” “curative,” “aggressive,” or “life-prolonging” measures. As discussed later, the distinction
between hospice and other forms of care, as established in the United States by the Medicare Hospice Benefit, is clinically bizarre and creates a false dichotomy, suggesting that palliation can occur only in exclusion of other forms of treatment. A Canadian Palliative Care Association definition also stresses that palliative care “may be combined with therapies aimed at reducing or curing the illness, or it may be the total focus of care” (34). Indeed, palliative care has been termed elsewhere as simultaneous care (35) and must embrace all the “high-tech,” expensive, “aggressive” measures that can enhance patient and family well-being at the end of life (36). Certainly, palliative care should not be consigned to the final days of life when other approaches are abandoned. Moreover, as John Rowe stresses:

“Real quality of care for these [dying] patients is not more care or even less care, but the right care … This concept … doesn’t rely on emerging data from molecular biology. It is not considered to be on the cutting edge by many of our faculty. But it is, in my mind, the essence of what all of us who are physicians swore when we took the Hippocratic oath” (37).

The Oxford text definition also suffers from jargon and confusing terminology. Who does not have a “limited” (or “unlimited”) prognosis? Is this designation preferable to “incurable” or “terminal?” Who is going to attend to the subtle distinction about the disease being both active and progressive? Where is the family in this explication?

None of these definitions is brief or clear enough to answer a patient’s or family member’s questions: what does palliative care mean? Or, what does a palliative care service do? Indeed, the definitions may be too abstruse and too vague even for clinicians or health care policy experts who are familiar with the jargon.

Problematic Precepts of Palliative Care

A variety of guidelines and position statements on the care of the dying are available, as referenced in the National Consensus Project Guidelines (9). Definitions of palliative care are sometimes accompanied by precepts or clarifications (38, 39). When viewed critically, many of these are meaningless, silly, grandiose, inappropriate for a health care discipline, or simply inaccurate. Although palliative care may be the standard bearer for some important aspects of modern medicine—particularly a focus on alleviating and preventing suffering, an emphasis on comprehensive care, and the use of interdisciplinary teams—many slogans should be quickly recognized as inappropriate for a discussion of a clinical specialty, regardless of its scope or the sense of mission of its advocates. Here, we should be mindful of Doyle’s admonition “never to believe that we have a monopoly on care, concern, or compassion,” and of hospice’s tendency to “self-righteousness” (40).

Some terms and phrases that are used in definitions, precepts, and public statements about palliative care—for instance, “patient-centered care,” “care versus cure,” “whole person care,” “treating the person, not the disease,” “compassion,” “skill,” “dignity,” “the art and science of caring,” “recognition of patient values,” or “culturally sensitive services”—may suggest important standards distinguishing good from bad palliative care but do not constitute essential parts of a definition. They may also imply that palliative care has a special claim on particular virtues. These terms simply muddy the waters and engender misgivings from even those sympathetic to the new field. For instance, although palliative care should certainly be tailored to the needs and wishes of the patient and family, this feature does not distinguish it from other fields of medicine any more than do skill or compassion. Quality of life is a concern in all areas of medicine, and any intelligent approach to assessing quality of life requires an understanding of patients’ knowledge about their condition and potential management strategies, their values, and their personal cost-benefit calculations.

The term dignity (as in “death with dignity”) is often used, although it seems vague and potentially laden with the care providers’ values (41, 42). As one physician reported, “I have never been particularly dignified in the sense that so many people use that word, nor have I even cared much about it. I am not sure I will want to pursue this quality when I am dying, let alone have my care significantly influenced by other caregivers’ notions of what constitutes a dignified death.” Similar concerns can be raised about such terms as “develop a sense of awe,” “allow natural death,” “find meanings for life,” or “develop a sense of worthiness,” all of which may be appropriate goals for some patients, not for others. Nonetheless, spiritual issues, such as meaning, hope, transcendence, connectedness, and purpose, deserve a great deal of attention in palliative care services.

We also often read that hospice or palliative care “affirms life and regards dying as a natural process.” But what does it mean not to affirm life? Do other clinicians disapprove of life or truly regard dying as an abnormal process? Ideology seems to be subtly creeping into a clinical definition. Certainly, palliative care clinicians may be less likely than other clinicians to view death as a failure or as an inevitable enemy, and may be more likely to see positive opportunities for growth and reconciliation in the face of dying. They also probably acknowledge dying more openly than many colleagues, but these attitudes cannot be definitions, any more than a proclivity to favor cardiac catheterization or surgical approaches for managing ovarian cancer defines, respectively, a cardiologist or a gynecologic oncologist.

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