|Palliative Care and Rehabilitation of Cancer Patients
The prevailing model of medical care for patients with cancer emphasizes the curative efforts of medical technology toward the eradication of the disease. Yet, the suffering of the patient as a result of both the disease and our efforts to treat it is often overlooked. If we are to improve the survival of patients with cancer, it will be through intensive research into the molecular underpinnings of the disease and clinical trials of new therapies. However, it is essential to recognize and address the suffering of cancer patients as they are being treated. It is the purpose of this book to illuminate and advance the prevention and treatment of suffering as part of the continuum of the care of patients with cancer.
Since the time of Hypocrites in the 5th century BC there have been two overall goals for the physician:
Cure of disease
Relief of suffering
From our vantage point in the late 20th century looking back at previous centuries, it is easy to observe that, aside from surgery, much of the medical care administered to patients with cancer was aimed at relieving the suffering associated with illness. It wasn't until the concept of "disease" (as opposed to "illness") was elucidated, and the application of the scientific method to understanding and eradicating cancer that significant strides were made to improve the physician's ability to cure cancer.
Unfortunately, many physicians and the healthcare system in which they focus only on curing "the disease" and neglect the associated suffering of the person with the disease. This overzealous pursuit of the scientific method in oncology has had the unintended consequence that many physicians and the cancer centers in which they work conceptualize the goal of oncology as only to cure cancer. The relief of suffering as a legitimate goal of oncology has been denigrated to the point of irrelevance, particularly in academic medical centers. While the impetus for the rigor of science is uncontested, it is incomplete as an approach to caring for the human being that has the cancer. Contemporary oncology care not only fails to relieve suffering in many circumstances, but causes suffering in pursuit of "cure". While the distinction between "cure of disease" and "relief of suffering" is perhaps trivial for some cancers (such as a localized basal cell carcinoma), it is critical for a chronic progressive illness that is incurable (such as metastatic lung cancer). While doctors attempt to treat and/or cure disease, we must always care for the person suffering from illness.
The omission of the consideration of suffering from oncology has led to some of the distressing claims made about the medical field in general and oncology in particular:
Oncologists don't give patients enough information about their condition and what to expect
Oncologists are merely scientists who are uninterested in the people they treat
Death constitutes failure
Patients fear abandonment by their oncologists
Recognizing that the prevailing models of care did not adequately address issues of patient suffering, Dr. Cicely Saunders introduced a concept for the care of terminally ill patients in England that she termed "hospice". Working primarily with patients with cancer, Dr. Saunders observed that suffering is often produced not only from the cancer, but also by medical efforts to control the disease. She described suffering as having four components: physical, psychological, social, and spiritual - each of which needs to be attended to. Thus, she proposed that in order for the many facets of suffering to be assessed and relieved, the medical care needed to be provided by an interdisciplinary team of physicians, nurses, social workers, chaplains, and others with expertise in each of these areas. Further, she observed that patients do not suffer in isolation from their loved ones but within the context of their family/community. Consequently, the patient and family must be considered together as the object of medical care. Finally, she noted how helpful it is when care for the family continues into the bereavement period following the patient's death.
Thus, the principles of the modern hospice model of care can be summarized as follows:
1) Interdisciplinary team care
2) The patient and family are the unit of care
Dr. Saunders and the work of her colleagues at St. Christopher's has had a dramatic impact on medical care around the world. The hospice approach has been widely adopted throughout the world because of the clear benefits which patients and families enjoy. But it has been adopted differently in different countries based upon both the medical establishment and societal attitudes. In the United Kingdom, hospice has developed within the medical establishment as a primarily inpatient facility that delivers end of life care. In contrast, in the US hospice care has principally developed as a program of care at home by volunteers and nurses outside the cancer centers. Interestingly, in both the United Kingdom, and in the US, the position that hospice care often takes in the overall scheme of cancer care is quite similar. There is generally a sharp demarcation between disease-oriented curative therapy and hospice care (either one or the other). This is shown in the following diagram.
Within the dominant curative model of medical care, the period relegated to hospice care is often short (median of <30 days in the US) (1), and there is often a sharp discontinuity between the curative approach and hospice care. This exemplifies one of the chief problems with this model of care. There is a dichotomy between curative/life-prolonging care and hospice care. The model conveys the message that the goal of cancer care is first cure, then only if unable to cure, relieve suffering. Particularly in the US, this dichotomy often prevents the appropriate use of hospice care for patients and their families.
Yet, in order to provide excellent comprehensive care, shouldn't the goals of curative and palliative care be pursued simultaneously? Why should we wait to introduce these concepts until all attempts at cure have been exhausted or the patient and family plead for such efforts to stop? It would seem to be generally appropriate to relieve suffering at the same time as we are pursuing curative and/or life-prolonging treatment. In fact, some attempts to relieve the suffering associated with illness and its therapy should precede the point at which referral to a hospice program is appropriate. The nature and course of the illness coupled with the patient and family's goals for care should determine the relative emphasis on, and timing of, curative and/or palliative care. But what is Palliative Care?
Definition of Palliative Care
In Webster's Dictionary "palliate" is defined as efforts "to lessen the violence of disease". As applied to oncology, the term palliative care was first proposed by Dr. Balfour Mount working in the Province of Quebec in Canada to describe the hospice model of care that had been developed in Great Britain. In French culture, the word hospice connotes a place where the destitute and ill are housed. As usage of the term developed, it has come to be associated less with a place, and more with the overall approach to care. Consequently, it has permitted the development of the concept that the relief of suffering should be appropriately integrated across the continuum of medical care and not just saved for the end. A schematic representation of the simultaneous pursuit of curative and palliative care is shown below.
In this model, hospice care represents the completion of good medical care (both curative and palliative) of a patient with cancer (or any other life-limiting illness), not an alternative to, or an abrupt change from, the preceding care plan.
Definition of Palliative Medicine
The term palliative medicine has developed to describe the specific physician components of the interdisciplinary team approach to the relief of suffering that are espoused under the larger umbrella of palliative care. Thus,
Palliative medicine is the study and management of patients with progressive, far advanced disease for whom the prognosis is limited and the focus of care is quality of life. (2)
With reference to the overall goals of medicine with which we began this preface, palliative medicine may be summarized as the branch of medicine that specializes in the relief of suffering. It may be combined with therapies to cure or prolong life or it may be the sole focus of care when cure of a disease itself and/or long-term control is not possible or desired. Quality-of-life rather than quantity-of-life is the chief aim of those engaged in the delivery of palliative care. Because suffering is experienced by persons, its existence, character and criteria for relief are defined by the patient rather than by the physician. In providing "whole person care" to relieve suffering, palliative medicine attends to all domains of human experience which may be affected by disease: physical, psychological, social and spiritual (3).
A clear understanding of palliative care in oncology is further obscured by the liberal and imprecise use of the term "palliative" in the literature to describe any anti-cancer therapy whose evidence-based objective cannot be the complete eradication of the malignancy. Consequently, we have descriptions of "palliative chemotherapy" or "palliative radiotherapy" without any compunction on the part of the authors to describe the relief of suffering which might ensue from such therapies. In this usage, the term only connotes that the therapies will not cure the disease.
With whatever definition is used, most oncologists incorporate palliation into their daily practice. It is also a fact that, because there has been insufficient attention given to this aspect of medical practice, most physicians pursue palliation without either formal training, standards of palliative practice or access to expertise for challenging cases. Consequently, the palliation is inadequate, even judged by oncologists themselves (4). Unfortunately, the false dichotomies between cure and care, aggressive and palliative, supportive and palliative, standard care and hospice care, "scientific" medicine and "palliative" medicine have thwarted the pursuit of a comprehensive, integrated approach to medical care for persons with advanced progressive illness and their families. Yet, there are efforts underway to address these problems and move forward. For better care to emerge, we must focus less on labels, and more on the needs of patients and families.
The most important development favoring palliative care has been the widespread recognition by the public, professional groups and governmental organizations that the status quo is grossly inadequate. The evidence is broad and unavoidable. There are numerous reports that cancer pain and other symptoms continue to be inadequately treated (4,5,6). It remains a continuing and widely recognized embarrassment that cancer care inside and outside the hospital remains so fragmented (7). Whenever continuity between inpatient and home settings is mentioned to a health care audience of any size there is an embarrassed chuckle that ripples through the audience. The investigators of the SUPPORT study demonstrated that merely providing additional information does not change the trajectory of death for critically ill patients in academic hospitals (8). The attention paid to Dr. Kevorkian and the physician assisted suicide debate has been unprecedented in the popular and medical media. This reflects what many feel are the inhumane sufferings of patients and their need for relief. It further illustrates that the public does not trust its medical care system to provide adequate comfort in the face of severe illness. In its recent landmark ruling about the right of US citizens to assisted suicide, the Supreme Court found that patients do not have a right to physician assisted suicide, but that they do have a right to good palliative care (9). The Institute of Medicine made strong recommendations for improvement in the care of individuals with advanced chronic disease that included a call for the development of palliative care as an area of special expertise (10).
In response, the American Board of Internal Medicine has promulgated expectations for basic competencies for all internists in end-of-life care (11). The American Society of Clinical Oncology has made similar statements (12). Clearly, there is a need for change. In our view, there is a strong need for the development of a consensus about the role that palliative care plays in the continuum of cancer care. Neil MacDonald has described the programmatic components of comprehensive cancer care in terms of "prevention":
1) prevention of the disease (public education and policy)
2) prevention of advanced disease (early diagnostic programs)
3) prevention of death (anticancer treatment)
4) prevention of suffering (13).
Attention to the relief of suffering should be appropriately integrated throughout the course of a patient with cancer.
It should be apparent that Rehabilitation medicine, or physiatry, has an important role to play in this conceptual framework for the relief of suffering within the context of care of the patient with cancer across the entire trajectory of illness. Rehabilitation focusses on the improvement of function. Loss of function is one of the critical quality-of-life issues that concerns patients with cancer. Although physiatry got its start in studying and treating otherwise healthy patients with fixed deficits (such as an amputation or traumatic neurological injury), the framework for its interventions is fundamentally similar to that of palliative care. It takes teamwork of multiple health care disciplines working together to adequately assess and treat a patient in order to improve function and quality of life. The focus is not on the underlying disease, but on how to relieve the associated suffering. Patients and families are considered together. It is an important development that these insights have been extended to patients with cancer where the deficits may not be fixed. Patients can benefit from improvements and adaptations that permit function.
The take-home message is that we should not become bogged down in the terminology - it doesn't matter whether we call the intensive psycho-social-spiritual support and attention to the relief of physical symptoms "supportive care" or "palliative care". What does matter is that the elements of this care be thought of as an integral part of what is considered standard care for patients with cancer and their families and that we agree to high standards to which we all scrupulously adhere.
Charles F. von Gunten, MD, PhD
Hospice and Palliative Medicine
Northwestern University Medical School
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9. Burt RA The Supreme Court speaks-not assisted suicide but a constitutional right to palliative care. N Engl J Med 1997;337:1234-6.
10. Approaching death: improving care at the end of life. Committee on care at the end of life, Division of Health Care Services, Institute of Medicine, national Academy of Sciences, 1997.
11. American Board of Internal Medicine. Caring for the Dying: identification and promotion of physician competency. Philadelphia 1996
12. Task Force on Cancer Care at the End of Life. Cancer care during the last phase of life. Journal of Clinical Oncology1998;1986-1996.
13. MacDonald N. The interface between oncology and palliative medicine. In: Oxford Textbook of Palliative Medicine, 2nd edition. Eds: Derek Doyle, Geoffrey W.C. Hanks, Neil MacDonald. Oxford University Press, New York 1998.
Copyright 1999 by Kluwer Academic Publishers
Permission given to reprint on HealthBond