Gunnar Almgren, PhD – University of Washington, School of Social Work
Palliative care, defined broadly as a holistic approach to care for patients with progressive and advanced disease with limited prospects for long-term survival (World Health Organization, 2008), confronts a number of formidable policy obstacles and challenges to its development in the U.S. Included among them are inadequate access, fragmented delivery systems, inadequate financing mechanisms, limited professional education, and the shortage of health care providers that is endemic throughout the U.S. health care system (Institute of Medicine, 2001; Reb, 2003). In the brief analysis that follows, two of the dominant policy issues in palliative care are highlighted. The first is the problematic approach to palliative care in the U.S. that, for historical reasons, forces an often harsh choice between curative health care and health care that is narrowly limited to comfort and “death with dignity.” This dichotomous orientation toward palliative care contrasts with that of other countries (e.g., Australia, Canada, New Zealand, the United Kingdom), which approach palliative care as more of a holistic continuum with permeable boundaries between curative and purely supportive care. The second policy issue brought into focus concerns the economic viability of more progressive approaches to palliative care, in particular the need to promote research that identifies the most cost-effective approaches to palliative care.
Until the last few decades of the 1900s, the U.S. health care system was dominated by a curative paradigm, which treated the dying process as a failure of medicine, as opposed to embracing care of the dying as an essential mission of medicine and an integral component of the health care system. As a result, aggressive and futile curative interventions too often were pursued to harmful and dehumanizing extremes, and the dying were often relegated to the stigmatized category of “lost causes” that medicine had nothing further to offer (National Hospice and Palliative Care Organization, 2008). The hospice movement, which had its beginnings in England with the work of British social worker and physician Sicily Saunders in the late 1960s, was propelled into American public consciousness and policy during the 1970s both by the research and writings of American psychiatrist Dr. Elisabeth Kubler-Ross (On Death and Dying, 1969) and through the transformative partnership between Saunders and Florence Wald of the Yale University School of Nursing (Almgren, 2007; National Hospice and Palliative Care Organization, 2008). Ultimately, Congress institutionalized hospice care through a series of legislative modifications to the Medicare program, culminating with the establishment of a Medicare hospice benefit in 1986. The Medicare hospice benefit in turn established the basic template for hospice benefits throughout the health care system, including the private health insurance industry, hospice programs funded by state Medicaid programs, and the Veterans Administration system. Although the specific hospice program benefits vary by the form of insurance coverage, the typical array of hospice benefits follow the Medicare model, which includes physicians’ services, intermittent home nursing care, medical supplies, outpatient drugs, home health aide services, social work, professional therapies (physical, occupational, and speech), short-term inpatient care for respite/symptom management, and spiritual counseling. To be eligible for hospice benefits in the typical program, the recipient must be diagnosed by a physician as terminally ill within a specified period (conventionally 6 months), and must voluntarily accept hospice care benefits as an alternative to standard health insurance benefits—including and most specifically those benefits that involve “curative treatment” (Almgren, 2007).
Although the introduction of hospice care into the mainstream of American health care over the past few decades has been a great leap forward, the hospice paradigm of palliative care has also institutionalized a regrettable dichotomy between palliative care with an indeterminate course and duration, and the “hospice” approach to care for the dying that is predicated on a fixed limit of survival and eligibility for palliative care benefits.
In contrast, palliative care in its conventional definition does not rigidly dichotomize the choice between curative and supportive care and normalizes the coexistence of potentially fatal disease processes with hope and uncertainty. The World Health Organization’s definition of palliative care, while it pertains to care that is not intended to postpone death or provide cure for disease, entails a holistic approach to care that both helps patients live as actively as possible until death and also “can be provided in conjunction with other therapies that are intended to prolong life” (World Health Organization, 2008). Thus palliative care, as a concept and general philosophy of care, acknowledges that people can live a very long time in the penumbra between the pursuit of curative or at least ameliorative treatment and the acceptance of death—particularly the many elderly that are burdened with multiple chronic and potentially fatal conditions with largely indeterminate trajectories.
The primary policy challenge of palliative care policy during the final three decades of the last century entailed the development of a system of care for the dying that was accessible to persons of all ages and income levels—not just the Medicare eligible older adult population (Morrison, 2005; National Hospice and Palliative Care Organization, 2008). The organizing paradigm for palliative care policy, however, remained entrenched in the more restrictive and deterministic hospice model of palliative care that is centered on two (previously mentioned) eligibility criteria that are nearly universal to all hospice programs:
Although to some extent these restrictive eligibility criteria align with a philosophy of care that is centered on “death with dignity,” it is also true that both criteria were introduced as a way of promoting the financial sustainability of the Medicare hospice care benefit. These financially driven criteria ultimately became institutionalized as hospice benefits were expanded into the employer-based insurance industry and state Medicaid programs. The end result is a system of palliative care in the U.S. that confuses health care financing assumptions with clinical efficacy (Passik et al., 2004; Scitovsky, 1994).
We are now confronted by a new policy challenge in palliative care, one that entails the development of services and financing structures that can better accommodate the clinical complexities of the final stages of life. That is, for example, a system of care that can at once accommodate the patient with late stage chronic obstructive pulmonary disease (who may be 2 months or 2 years from death), as well as the cancer patient who desires palliative care mixed with naturopathic curative medicine as a way of holding out hope (Fitzsimons et al., 2007; Kramer & Auer, 2005).
Although health care provider organizations can often operate more efficiently to the extent that services can be standardized, research has shown that there is enormous diversity in the needs of caregivers for specific forms of support (both professional and non-professional), and that needs change as the illness progresses (Osse, Vernooij-Dassen, Schade, & Grol, 2006; Proot et al., 2004). The implications of these kinds of findings, from a policy standpoint, are that palliative care delivery and financing schemes must accommodate individualized approaches to patient care and frequent periodic reassessment of changing needs (Davies & Higginson, 2004).
This approach has several advantages, among them:
1) building on the significant areas of overlap between the holistic orientation and clinical expertise of clinicians,
2) utilizing the provider connections and credibility established by the hospice organization,
3) where possible, avoiding unnecessary duplication of clinical and support services,
4) reducing or eliminating destructive competition between palliative care and hospice care provider organizations, and
5) providing for a true continuum of care from diagnosis to death (Byock, 2000).
However, some early evidence suggests that there are formidable barriers to surmount, arising from the assumption of costs associated with more complex patients, e.g., higher drug costs, higher utilization of outpatient and emergency services, and physician visits (Passik et al., 2004). In effect, hospice care organizations are at risk for having to subsidize palliative care services from hospice benefit dollars—an unsustainable strategy over any length of time (Passik et al., 2004). Yet, cost and clinical outcome findings are more favorable among studies that evaluate the cost-effectiveness of hospital-based consultation models of palliative care, which may be in a better position to ameliorate the most egregious instances of high cost/poor outcome care (Cowan, 2001). Hospital-based consultation models, though they may differ from one another in some respects, commonly entail the use of physicians, nurses, and social workers with specialized training in palliative care as consultants to more traditionally trained health care providers. While the traditional providers continue to retain primary responsibility for care of the patient, the palliative care consultants provide essential expertise in all aspects of palliative care. In the long run, a seamless continuum of care is best promoted by a financing structure that is integrated with clinical services, as in capitated (HMO) financing or a universal social insurance fund (Almgren, 2007).
The most definitive review of the various studies assessing the cost-effectiveness of hospice care relative to conventional care that occurred after the Medicare hospice benefit had become widely utilized concluded that the cost-savings attributable to the benefit was 25-40% during the last month of life, but only 10-17% during the last 6 months of life (Emanuel, 1996). Studies that have been produced during the most recent decade have provided more mixed evidence, some suggesting significant cost savings (Pyenson, Connor, Fitch, & Kinzbrunner, 2004) and others actually finding increased expenditures depending on such factors as age and diagnosis (Campbell, Lynn, Louis, & Shugarman, 2004). Yet, the most current comprehensive study, based on a comparison of 1,819 hospice decedents with a rigorously matched 3,638 control sample, finds that hospice use reduced Medicare program expenditures over the last year of life by an average of $2309 per hospice care recipient, although the maximum cost savings achieved varies significantly by the primary health condition leading to death (Taylor, Ostermanna, Van, Tulskyc, & Steinhauserc, 2007). Significant also, from a policy standpoint, is this study’s findings that in 70% of cases, earlier introduction of hospice care would have resulted in increased savings. Despite some remaining ambiguity as to whether hospice care consistently yields a higher quality of care at equal or less cost across all diagnostic and age groupings, the overall evidence suggests Robinson and Pham (1996) are correct in asserting that the original goals of at least the Medicare program’s hospice benefit have been met: “a choice is available that responds to the needs and concerns of many dying people and their families, at no additional cost to the taxpayer” (p. 417).
The literature on the cost-effectiveness of palliative care approaches that fall outside of the more restrictive hospice model is far less developed than that of the cost-effectiveness of conventional hospice care. The most recent comprehensive review of this literature, published in the Journal of the American Medical Association in spring 2008, found only 22 studies that met the inclusion of randomized controlled trials of specialized palliative care interventions included outcome measures for quality of life, satisfaction with care, or economic cost. While the evidence for higher levels of family satisfaction with care was favorable across most studies, the evidence concerning other benefits, including cost savings relative to conventional care, was scant and inconclusive (Zimmermann, Riechelmann, Krzyzanowska, Rodin, & Tannock, 2008). To many advocates of patients and families in the advanced stages of incurable health conditions, the case for the development of specialized palliative care services is self-evident. However, major policy advancements promoting the mainstreaming of palliative care await more evidence from large-scale multisite studies that use well-defined palliative care interventions and comparable outcomes across a range of patient and family system characteristics (Morrison, 2005).
In sum, although the evidence pertaining to the cost-effectiveness of palliative care is as yet scant, the clinically based arguments for a move away from the more restrictive “hospice vs. curative treatment” are compelling. At least in these terms, the grounds for investments in research that identify the most clinically efficacious and cost-effective models of palliative care have been sufficiently established. In absence of such research investments, specifically large-scale studies that link clinical efficacy with cost-efficiency, it may be that innovations in palliative care that are less tied to considerations of cost will still emerge—only to wither away in the face of shrinking health care dollars.
Almgren, G. (2007). Health care politics, poverty and services: A social justice analysis. New York: Springer.
Byock, I. (2000). Completing the continuum of cancer care: integrating life-prolongation and palliation. CA Cancer Journal for Clinicians, 50(2), 123-132.
Campbell, D. E., Lynn, J., Louis, T. A., & Shugarman, L. R. (2004). Medicare program expenditures associated with hospice use. Annals of Internal Medicine, 140(4), 269-278.
Cowan, J. (2001). Hospital charges for a community inpatient palliative care program. American Journal of Hospital Palliative Care, 21, 177-190.
Davies, E., & Higginson, I. (2004). Better palliative care for older people. Copenhagen Denmark: World Health Organization for Europe.
Emanuel, E. (1996). Cost savings at the end of life: What do the data show? Journal of the American Medical Association, 275(24), 1907-1914.
Fitzsimons, D., Mullan, D., Wilson, J. S., Conway, B., Corcoran, B., Dempster, M., et al. (2007). The challenge of patients' unmet palliative care needs in the final stages of chronic illness. Palliative Medicine, 21(4), 313-322.
Institute of Medicine. (2001). Improving palliative care for cancer. Washington, DC: National Academy Press.
Kramer, B. J., & Auer, C. (2005). Challenges to providing end-of-life care to low-income elders with advanced chronic disease: lessons learned from a model program. Gerontologist, 45(5), 651-660.
Kubler-Ross, E. (1969). On Death and Dying. New York: The Macmillan Publishing Co., Inc.
Morrison, R. S. (2005). Health care system factors affecting end-of-life care. Journal of Palliative Medicine, 8(Supp 1), S79-87.
National Hospice and Palliative Care Organization. (2008). History of hospice care. Retrieved April 3, 2008, from http://www.nhpco.org/i4a/pages/index.cfm?pageid=3285
Osse, B. H., Vernooij-Dassen, M. J., Schade, E., & Grol, R. P. (2006). Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nurse, 29(5), 378-388; quiz 389-390.
Passik, S., Ruggles, C., Brown, G., Snapp, J., Swinford, S., Gutgsell, T., et al. (2004). Is there a model for demonstrating a beneficial financial impact of initiating a palliative care program by an existing hospice program? Palliative Support Care, 2(4), 419-423.
Proot, I. M., Abu-Saad, H. H., ter Meulen, R. H., Goldsteen, M., Spreeuwenberg, C., & Widdershoven, G. A. (2004). The needs of terminally ill patients at home: directing one's life, health and things related to beloved others. Palliative Medicine, 18(1), 53-61.
Pyenson, B., Connor, S., Fitch, K., & Kinzbrunner., B. (2004). Medicare cost in matched hospice and non-hospice cohorts. Journal of Pain and Symptom Management, 28(3), 200-210.
Reb, A. (2003). Palliative and end-of-life care: policy analysis. Oncology Nursing Forum, 30(1), 35-50.
Robinson, B., & Pham, H. (1996). Cost-effectiveness of hospice care. Clinical Geriatric Medicine, 12(2), 417-428.
Scitovsky, A. (1994). "The high cost of dying" revisited. Milbank Quarterly, 72(4), 561-591.
Taylor, D. H., Ostermanna, J., Van, C. H., Tulskyc, J. A., & Steinhauserc, K. (2007). What length of hospice use maximizes reduction expenditures near death in the US Medicare population. Social Science and Medicine, 65(7), 1466-1478.
World Health Organization. (2008). WHO Definition of Palliative Care [Electronic Version], 1. Retrieved April 7, 2008 from http://www.who.int/cancer/palliative/definition/en/print.html
Zimmermann, C., Riechelmann, R., Krzyzanowska, M., Rodin, G., & Tannock, I. (2008). Effectiveness of specialized palliative care: a systematic review. Journal of the American Medical Association, 299(14), 1698-1709.
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