Hospice and Palliative Care: Program Needs and Academic Issues

In their article, von Gunten et al lucidly define palliative care and analyze the status of this discipline within the current American health-care delivery system. They make a series of excellent points, a few of which deserve emphasis and clarification:

1) The growing consensus about the essence of palliative care is exemplified in the definition promulgated by the World Health Organization: "Palliative care is the active 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 the achievement of the best possible quality of life for patients and their families." Palliative care is an interdisciplinary endeavor. Palliative medicine is becoming established as a medical subspecialty devoted to the delivery of palliative care.

2) The goals expressed in this definition of palliative care initially found expression in the hospice movement, which first legitimized the involvement of diverse disciplines in the care of terminally ill patients. In the United States, hospice continues as both a model of care and a system for the implementation of this model, which is currently applied to patients who have short life expectancies and are no longer receiving antineoplastic therapy. Although the American version of hospice delivers excellent services to many patients, it is not the embodiment of palliative care. Indeed, current models of palliative care are not identical to any of the early hospice approaches, and it may be most appropriate to view palliative care as a discipline evolving from the valuable goals of hospice. Both hospice care and palliative care deal fundamentally with the practical management of suffering, as discussed by von Gunten et al, but palliative care may be distinguished from traditional hospice approaches by its concern with the comfort and functioning of patients and their families at all stages of disease, strong physician input on an ongoing basis, willingness to use aggressive "tertiary" interventions (such as primary anticancer therapies and invasive treatments of symptom control) for appropriate patients, and acceptance of research for quality improvement and scientific advancement.

The palliative care model, which broadly addresses the physical, psychosocial, and spiritual concerns that contribute to both the quality of life and the quality of death, is appropriate for patients with any life-threatening disease during and after the period of aggressive primary therapy. For the many patients with incurable cancer who are undergoing active life-prolonging therapies and have life expectancies that potentially extend to years, a focus on palliative care means a mix of symptom management, function-oriented therapies, and psychosocial support or interventions. In some cases, this focus parallels the discipline of cancer rehabilitation, the purview of which ranges from the restoration of physical and cognitive functioning to vocational counseling. For dying patients, optimal palliative care addresses the traditional concerns of the hospice movement, focusing on comfort and support for patients and preparation of both patients and their families for the inevitability of death.

3) Hospice care as a health care delivery system supported by the Medicare Hospice Benefit has been quite successful in fulfilling a set of specific objectives, as detailed by von Gunten et al. Some surveys suggest that costs are reduced for the subset of patients with advanced cancer who are managed within this system, and it is generally accepted that the quality of care is adequate for most patients. Nonetheless, the differences between this American version of hospice care and the imperatives of palliative care highlight the potential for negative outcomes.

For example, the eligibility requirements for the Medicare Hospice Benefit encourage late referrals for specialized care. The distressed subpopulation requiring such care can express this need at any point during the course of the disease. Although individual clinicians can attempt to manage this distress alone, or enlist the help of other professionals through referrals, the expertise, unity of purpose, communication, and continuity of care that are essential elements of palliative care programs may not be duplicated. Patients in hospice programs also may have limited access to expensive management approaches because of the reimbursement method outlined by von Gunten et al. Indeed, patients in hospice programs often have little direct contact with a physician, who may be best qualified to assess the medical aspects of the case and to determine the value of sophisticated medical or surgical therapies for symptom control. With acknowledgment of the limitations inherent in this system, the compelling need at the present time is the expansion of palliative care, not merely the growth of the current hospice system.

The Need for Endorsement of QOL

4) Some patients can be provided excellent palliative care by primary caregivers, whereas others present management challenges significant enough to warrant the involvement of palliative care specialists. For oncologists to deliver on the promise of palliative care, they must become comfortable with palliative care as an active therapeutic endeavor worthy of personal attention and, possibly, patient referral. Oncologists must endorse the importance of good quality of life during the period of active treatment and must reject the unfortunate, and untrue, position that the lack of an antineoplastic treatment means that "nothing can be done." Both patients and caregivers are better served when clinicians successfully communicate from the start that palliative care is as central to oncologic practice as treatment of the tumor. Patients who have learned that help is available to live with the disease are more likely to accept the transition to a phase without primary antineoplastic treatment. When the need for more intensive palliative care develops after life-prolonging therapies have been exhausted, patients and their families should be able to perceive a continuum characterized by the ongoing desire of clinicians to manage symptoms and to address other quality-of-life concerns. In such a context, patient referral to a palliative care specialist is not viewed as a defeat, but merely as a way to obtain more expert care.

An Evolving Perspective

5) The evolving perspective on palliative care has encouraged the gradual acceptance of medical specialization in this area and has broadened the opportunities for patients in some institutions. The palliative care program at Northwestern University Medical School organized by von Gunten et al, for example, is one of a few in the United States that offer consultation and continuing care based on the broader principles of this discipline. The number of institutions developing such programs is growing. In several other developed countries, such as Canada, Australia, and the United Kingdom, palliative care has achieved much wider recognition, including support within academic medicine.

There is much to be gained by supporting the growth and development of palliative care in oncology, including better patient care, less clinician burnout, and a clearer perspective on the elements of oncologic practice that distinguish it from other disciplines. Although systematic outcome studies are needed to refine the economic perspective, there is reason to believe that the costs of patient care can be reduced when expertise in palliative care is available. Although optimal palliative care can be quite expensive in individual cases, the cost of cancer care overall should be reduced if costly primary therapies are used more appropriately at the end of life--an outcome that should occur with the availability of expert palliative care as an option for most patients.

Positive change in this area will be difficult to maintain as issues related to the financing of clinical services, competition among clinicians, and the status of training and research are unresolved and could evolve in a way that limits the development of young disciplines like palliative care. The article by von Gunten et al is a useful reminder that some progress has been made and that more is needed.