Hospice and Palliative Care: Program Needs and Academic Issues

July 1, 1996

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:

In their article, von Gunten et al lucidly define palliative careand analyze the status of this discipline within the current Americanhealth-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 careis exemplified in the definition promulgated by the World HealthOrganization: "Palliative care is the active total care ofpatients 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 careis the achievement of the best possible quality of life for patientsand their families." Palliative care is an interdisciplinaryendeavor. Palliative medicine is becoming established as a medicalsubspecialty devoted to the delivery of palliative care.

2) The goals expressed in this definition of palliative care initiallyfound expression in the hospice movement, which first legitimizedthe involvement of diverse disciplines in the care of terminallyill patients. In the United States, hospice continues as botha model of care and a system for the implementation of this model,which is currently applied to patients who have short life expectanciesand are no longer receiving antineoplastic therapy. Although theAmerican version of hospice delivers excellent services to manypatients, it is not the embodiment of palliative care. Indeed,current models of palliative care are not identical to any ofthe early hospice approaches, and it may be most appropriate toview palliative care as a discipline evolving from the valuablegoals of hospice. Both hospice care and palliative care deal fundamentallywith the practical management of suffering, as discussed by vonGunten et al, but palliative care may be distinguished from traditionalhospice approaches by its concern with the comfort and functioningof patients and their families at all stages of disease, strongphysician input on an ongoing basis, willingness to use aggressive"tertiary" interventions (such as primary anticancertherapies and invasive treatments of symptom control) for appropriatepatients, and acceptance of research for quality improvement andscientific advancement.

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

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

For example, the eligibility requirements for the Medicare HospiceBenefit encourage late referrals for specialized care. The distressedsubpopulation requiring such care can express this need at anypoint during the course of the disease. Although individual clinicianscan attempt to manage this distress alone, or enlist the helpof other professionals through referrals, the expertise, unityof purpose, communication, and continuity of care that are essentialelements of palliative care programs may not be duplicated. Patientsin hospice programs also may have limited access to expensivemanagement approaches because of the reimbursement method outlinedby von Gunten et al. Indeed, patients in hospice programs oftenhave little direct contact with a physician, who may be best qualifiedto assess the medical aspects of the case and to determine thevalue of sophisticated medical or surgical therapies for symptomcontrol. With acknowledgment of the limitations inherent in thissystem, the compelling need at the present time is the expansionof palliative care, not merely the growth of the current hospicesystem.

The Need for Endorsement of QOL

4) Some patients can be provided excellent palliative care byprimary caregivers, whereas others present management challengessignificant enough to warrant the involvement of palliative carespecialists. For oncologists to deliver on the promise of palliativecare, they must become comfortable with palliative care as anactive therapeutic endeavor worthy of personal attention and,possibly, patient referral. Oncologists must endorse the importanceof good quality of life during the period of active treatmentand must reject the unfortunate, and untrue, position that thelack of an antineoplastic treatment means that "nothing canbe done." Both patients and caregivers are better servedwhen clinicians successfully communicate from the start that palliativecare is as central to oncologic practice as treatment of the tumor.Patients who have learned that help is available to live withthe disease are more likely to accept the transition to a phasewithout primary antineoplastic treatment. When the need for moreintensive palliative care develops after life-prolonging therapieshave been exhausted, patients and their families should be ableto perceive a continuum characterized by the ongoing desire ofclinicians to manage symptoms and to address other quality-of-lifeconcerns. In such a context, patient referral to a palliativecare specialist is not viewed as a defeat, but merely as a wayto obtain more expert care.

An Evolving Perspective

5) The evolving perspective on palliative care has encouragedthe gradual acceptance of medical specialization in this areaand has broadened the opportunities for patients in some institutions.The palliative care program at Northwestern University MedicalSchool organized by von Gunten et al, for example, is one of afew in the United States that offer consultation and continuingcare based on the broader principles of this discipline. The numberof institutions developing such programs is growing. In severalother developed countries, such as Canada, Australia, and theUnited Kingdom, palliative care has achieved much wider recognition,including support within academic medicine.

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

Positive change in this area will be difficult to maintain asissues related to the financing of clinical services, competitionamong clinicians, and the status of training and research areunresolved and could evolve in a way that limits the developmentof young disciplines like palliative care. The article by vonGunten et al is a useful reminder that some progress has beenmade and that more is needed.