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Stigma associated with “palliative care”†
Getting around it or getting over it
Version of Record online: 20 FEB 2009
Copyright © 2009 American Cancer Society
Volume 115, Issue 9, pages 1808–1812, 1 May 2009
How to Cite
Cherny, N. I. (2009), Stigma associated with “palliative care”. Cancer, 115: 1808–1812. doi: 10.1002/cncr.24212
See referenced original article on pages 2013–21, this issue.
- Issue online: 20 APR 2009
- Version of Record online: 20 FEB 2009
- Manuscript Accepted: 17 OCT 2008
- Manuscript Received: 13 OCT 2008
The most widely accepted formal definition of palliative care, which was drafted by 2 oncologists (Neil MacDonald and Eduardo Bruera), is that of the World Health Organization (WHO).1, 2 It is a motherhood clause rich in beneficence, clear in its message, that states: “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:
provides relief from pain and other distressing symptoms
affirms life and regards dying as a normal process
intends neither to hasten nor postpone death
integrates the psychological and spiritual aspects of patient care
offers a support system to help patients live as actively as possible until death
offers a support system to help the family cope during the patient's illness and in their own bereavement
uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated
will enhance quality of life, and may also positively influence the course of illness
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.”
In the United States, this approach was endorsed by the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nursing Association, the National Hospice and Palliative Care Organization, and Partnership for Caring in a national consensus project to develop a clinical practice guideline for quality palliative care.3 Consistent with the WHO definition, they assert, “Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.”3
Operationally, the clinical practice guidelines of the consensus document3 endorsed a tiered system such that all physicians should have a modicum of skills and knowledge about basic palliative therapies relevant to their clinical practice and, in addition they should know the indication for inviting the services of interdisciplinary specialist-level palliative care to help in the management of more challenging circumstances.
Since the 1990s, there has been a flourishing of palliative care endeavors in the United States. This has been reflected in the incorporation of palliative care into internal medicine training, the rapid increase in the number of hospice programs, the increasing availability of palliative consultation services in hospitals and cancer centers, the development of standards of practice,3, 4 and, most recently, the accreditation of Hospice and Palliative Medicine as a medical specialty in 2006.
This is not to say that all is rosy. The Medicare Hospice Benefit ($135/day to pay for all medications, durable medical equipment, and clinical services) still generally precludes patients who are receiving disease-modifying treatments such as palliative chemotherapy from accessing hospice services; many of the palliative care services in hospitals are very limited in scope and are financially vulnerable.
Regrettably, many in the oncology profession have been relatively slow on the uptake.5-7 In a 1998 survey of American Society of Clinical Oncology (ASCO) members, most oncologists reported that they did not have adequate formal training in the key skills needed for them to provide excellent palliative and end-of-life care. A fascinating finding of the study was that trial and error in clinical practice or traumatic patient experiences ranked higher as a source of learning than did fellowship training or clinical clerkships.8 A decade has passed and still, despite the endemic proportion of palliative care problems that confront oncologists, most trainees still receive scant training in palliative care and their skills in this aspect of care are not rigorously evaluated in licensing examinations. Most recent survey data indicate that 698 of the 1203 American Cancer Society approved cancer programs report having some sort of palliative care program,9 but the limited data on the staffing of these services indicates that many are rudimentary.10 Indeed, very few have reached the threshold of being recognized training programs for palliative care specialty training.
Even in oncology centers where palliative care services exist, they are often underused.5, 11 Only a limited proportion of patients with poorly controlled symptoms are referred for expert palliative care, and many patients are referred only very late in the history of their illness after having suffered from inadequately controlled physical or psychological symptoms for some time.11-13 There is compelling data to suggest that this problem is even more severe when the underlying malignancy is hematological in nature.14-16 Among palliative care providers, there is a strong perception that oncologists are often reluctant to use specialist palliative care services.
If palliative care is a paradigm of beneficent quality care that focuses on well being and relief of suffering, why should there be such a reluctance to engage palliative care services?
For many clinicians, the common connotation that palliative care is primarily concerned with the care of the patient and his/her family at the end of life, underlies a reluctance of oncologists to refer patients (even those with overt needs) earlier, and in particular, when they are undergoing treatments with curative intent.17 It is as if the need to refer to palliative care infers bad news that is not appropriate for the patients prevailing condition.
The study by Fadul et al18 published in this issue of Cancer addresses this subject. At M. D. Anderson University of Texas Medical Center, which has a renowned palliative medicine service, oncology clinicians were presented with a set of hypothetical scenarios that asked if they would refer a patient to a service called “supportive care” or to a service called “palliative care”. There were 2 key findings from the study:
- 1In the hypothetical situations involving the care needs of patients undergoing treatments with curative intent, medical and nursing clinicians were much less likely to refer to a palliative care service than to a supportive care service.
- 2This disinclination regarding referral to palliative care service did not exist in the hypothetical scenario of the patient with an incurable illness who was no longer eligible for disease-modifying treatments, in which case clinicians were equally likely to refer to a service named palliative care or supportive care.
The implications of the study were the following: 1) oncologists perceive a difference in the concepts of supportive care and palliative care; 2) appropriate referral of early stage cancer patients could be increased by naming the service supportive care; and 3) there was no perceived preference for the name of the service offered to patients with incurable cancer who were beyond benefit from disease-modifying treatment.
Although this research is not without its faults (for instance it fails to consider the scenario of patients with incurable cancer receiving chemotherapy), its findings and their implications are worthy of consideration.
Despite the ascribing authority, how nouns derive their meaning is more complex than simple ascribed meaning. The ascribed meaning of palliative care is profoundly beneficent and benign. Who wouldn't want an approach to care that is focused on reducing suffering and improving quality of function and quality of life? Semantics, the study of how words achieve meaning, recognizes that common meaning of a word is deeply influenced by associations derived from life experience or connotation. This explains the potential discrepancy between formal definitions and their commonly understood definitions. When discrepancies in meaning exist, and these meanings conflict, there is a semantic dissonance.
In reference to the care of persons with potentially curable illness, this study suggests that for many clinicians there is a semantic and emotional dissonance to the term “palliative care” that does not exist for the term “supportive care”. The dissonance arises because the meaning most widely accepted and promoted by the WHO and the National Consensus Project (care to improve the quality of life of patients and their families at all stages of the illness experience) is not consistent with the meaning derived from common association (ie, care to improve the quality of life for patients with incurable illness and their families in the last days of life).
This is not a new issue in the development of the field of palliative care. A generation ago, when hospice was very much associated with end of life care, palliative care, a term developed by Balfour Mount in Canada, increasingly became the preferred term for this field of endeavor.19 This happened in part because the associative meaning of hospice as being very much focused on end of life care was too limiting for the scope of palliative care, which was being increasingly advocated at earlier stages of disease. This did not obviate the concept of hospice, which continues to focus on end of life care, but it facilitated the substantial up-streaming of palliative care and palliative care services to earlier stages of disease. Operationally, palliative care was adopted and defined by the WHO,1, 20 and it became the dominant term in public health discourse and documentation. More than 40 countries have policies for palliative care in their cancer care programs.
What of the term “Supportive care”? This is a term without a widely held definition and with many associations. Its purview has variably been defined from a very narrow agenda as “A treatment approach to reduce side effects from chemotherapy and other primary treatments in cancer” to an all encompassing purview that incorporates all aspects of toxicity minimization, palliative care, and survivorship. It is widely used in the oncology literature as a euphemism for palliative care. Indeed, at oncology conferences and in oncology texts, content related to palliative care needs are often labeled “supportive care”. In addition, supportive care (or best supportive care) has become the common term for the control arm of randomized clinical studies in which there is no effective chemotherapy and the routine standard of care is palliative care.
Although I fully and wholeheartedly support the WHO concept and definition of palliative care, I do not think we should ignore the possibility that patients are being deprived of care because of stigma. Indeed there are several appropriate responses.
- 1The getting-around-it approach: Perhaps the simplest approach is possibly to say that the name does not matter (or rather, that what matters is the content provided). That is to say, if a euphemistic name such as “supportive care” or “quality-of-life care” will lessen the barriers to referral, they should be considered favorably. This has been the approach of many supportive care services around the world. In part, this has been the approach of the M. D. Anderson Palliative Care and Rehabilitation Department, which has recently changed the name of their clinic to Supportive Care.
- 2The living-with-it approach: This is a pragmatic approach to use the term “supportive care” in situations of early stage and curable disease, reserving the term “palliative” to clinical situations where it is relatively nonthreatening. This is illustrated by the European Society for Medical Oncology (ESMO) approach, which was to adopt pragmatic definitions of supportive and palliative care based on 1) the common understanding of the terms among the membership and 2) a strategy to recognize and encourage a critical shift in emphasis to a palliative care paradigm when patients no longer have curable disease. Indeed, ESMO has strongly supported a comprehensive program of policies, education, research, and incentives to encourage the integration of supportive and palliative care into cancer centers and programs.21
- 3The getting-over-it approach is to continue to actively work to reduce and debunk the misconceptions and stigma associated with the term palliative care. This has been the approach of the ASCO board, which has recently endorsed a new policy statement on palliative cancer care. They have, in a very deliberate process, lent strong endorsement to the WHO definition and terminology. They define palliative cancer care as “The integration into cancer care of therapies to address the multiple issues that cause suffering for patients and their families and have an impact on the quality of their lives. Palliative cancer care aims to give patients and their families the capacity to realize their full potential, when their cancer is curable as well as when the end of life is near.”22 Rather than shirking from the term palliative care, they have thrown their weight and credibility behind it in a further effort to educate clinicians and consumers about palliative care and to reduce stigma associated with the term. They want oncologists to confront stigma by communicating that the need for palliative care does not, in itself, conclude bad news; on the contrary, it infers the good news that optimizing quality of life is a priority of care for all patients. Kathleen Foley calls this “getting real” about palliative care.
Despite the labels that are adopted, it is incumbent upon all oncologists and cancer clinicians to work toward a common goal that all patients will have access to an approach to care that improves the quality of life of patients and their families through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial, and spiritual problems.
Call it what you may, this is palliative care and it is a clinical, ethical, and humanistic imperative for all oncologists!
- 1World Health Organization. National cancer control programmes: policies and managerial guidelines. 2nd ed. Geneva: World Health Organization; 2002: 203.
- 2World Health Organization. Palliative care. Geneva: World Health Organization; 2007: 62.
- 3National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. Pittsburgh, PA: National Consensus Project for Quality Palliative Care; 2004: 76.
- 4National Quality Forum. National framework and preferred practices for palliative and hospice care. Washington, DC: National Quality Forum; 2007: 124.
- 5Attitudes of medical oncologists toward palliative care for patients with advanced and incurable cancer: report on a survey by the European Society of Medical Oncology Taskforce on Palliative and Supportive Care. Cancer. 2003; 98: 2502-2510., .
- 8National Cancer Policy Board Institute of Medicine. Background and recommendations. In: Foley K,Gelband H, eds. Improving palliative care for cancer: summary and recommendations. Washington, DC: National Academies Press; 2001: 46-47.
- 9American Hospital Association. The American Hospital Association, Annual Survey Database™ for Fiscal Year 2006. Chicago: American Hospital Association; 2008.
- 20World Health Organization. Cancer pain relief and palliative care. Geneva: World Health Organization; 1990.