This paper examines the influence of government regulations on hospice care in the United States, tracing the institution's origins from Cicely Saunders' revival of the hospice concept to the 2008 revisions to the federal Conditions of Participation for Medicare and Medicaid hospice programs. Drawing on multiple empirical studies, the paper analyzes how regulatory frameworks affect service quality, admission practices, hospitalization rates, and the competitive dynamics of the hospice industry. It also considers the tension between Medicare's prohibition on concurrent curative and palliative care, the challenges of integrating hospice with nursing facility services, and the commercial pressures that may compromise patient-centered care. Recommendations are offered for policy reform, service consolidation, and expanded integrated care models.
The institution of hospice is as old as the eleventh century, when care was given to the invalid, to travelers, and to pilgrims. The concept was revived in the seventeenth century, and more recently in the 1950s by Cicely Saunders, who belonged to the nursing profession. Saunders started a hospice after caring for a Polish refugee and came to understand the need for terminally ill people to lead a comfortable life — one that addressed both their physical and mental well-being.
Saunders brought many new concepts to patient care by focusing on the needs of patients themselves rather than solely on their diseases. She was aided in spreading awareness about the inadequate facilities in modern hospitals for the terminally ill by Swiss psychiatrist Elisabeth Kübler-Ross, who wrote On Death and Dying in 1965. Their combined efforts helped to crystallize public awareness of these inadequacies in the existing system (Meldrum & Clark, 2000).
Even so, the concept of hospice has remained controversial, as those unfamiliar with its practices have questioned the legality of certain aspects and the legitimacy of such institutions. Today, hospice institutions are certified by federal and state governments to ensure their legal standing and to regulate their medicinal and other treatment practices. A key figure in establishing hospice systems as legal entities and in developing training facilities for them was Dr. Josefina Magno, who in 1984 became the first executive director of the US National Hospice Organization and who founded the International Association for Hospice and Palliative Care (IAHPC).
This paper examines the laws and regulations affecting hospice practices and how treatment measures have been shaped by them. The federal and state governments have set standards for hospice operations under the Social Security Act. Moreover, the US Code of Federal Regulations defines the conditions under which hospice agencies may participate in the Medicare hospice benefit. Hospices that wish to be licensed and certified by the state and permitted by the Centers for Medicare & Medicaid Services (CMS) to operate within the Medicare hospice program must meet the established Conditions of Participation (Hospice Patients Alliance, n.d.).
A variety of studies have examined the impact of hospice care and how the institution has helped to alleviate the problems faced by terminally ill patients. Hospice care and palliative care are interrelated: hospice encompasses palliative care as well as care extended to the patient's family and loved ones. Palliative care, by contrast, is directed at alleviating the physical, mental, and spiritual discomfort of patients who are classified as terminally ill.
The concept of hospice has gained legal importance, and the federal and state acts that govern it address the services and treatments that may be provided to patients enrolled in hospice programs. Consider, for example, the Medicare rule that patients who have opted for hospice care under its insurance program cannot continue to receive curative care; in signing up for hospice, they must forgo curative treatment. There is also the concept of integrating palliative care with curative care, but this raises issues of potential conflict of interest between nursing home medical directors and hospice program directors (American Medical Directors Association, n.d.).
Enrollment in a hospice program involves various criteria, including the goals of both the caregiver and the patient, who may have accepted that continued treatment will not prolong life. Studies have shown that hospice care — whether delivered aggressively or non-aggressively — can yield comparable or better outcomes than care for patients who are not enrolled in hospice (Saito, Landrum, Neville, Ayanian, Weeks, & Earle, 2011). Another study further indicates that hospice care results in lower rates of hospitalization in the last 30 days of life (Gozalo & Miller, 2007), suggesting that patients are able to die in a more comfortable environment without being subjected to painful interventions.
It is worth noting that hospice care can be provided at specialized centers or at home. In Japan, for instance, it was observed that caregivers — more than the patients themselves — in home hospice care believed they should be receiving support from day hospice centers. Among the studies conducted on hospice center services, it was found that larger hospice centers had less restrictive admission policies (Lorenz, Asch, Rosenfeld, Liu, & Ettner, 2004) and were better able to provide the full range of services, including nursing care, physician care, medication management, psychosocial care, and caregiver support (Carlson, Morrison, Holford, & Bradley, 2007).
The regulations affecting hospice care are stated in the US Code of Federal Regulations, revised in 2008 and published in the Federal Register. These revisions address the Conditions of Participation for hospice care centers that wish to participate in the Medicare and Medicaid programs.
The revision notes at the outset that the need for it arose because previous regulations focused on addressing problems rather than improving the quality of services provided. The current rules therefore establish that "patient rights, comprehensive assessment, patient care planning and coordination by a hospice interdisciplinary group (IDG)" are core requirements for hospice centers. Moreover, these requirements are to be further refined through quality assessment and performance enhancement programs developed locally by each care program.
Some of the specific rules introduced include a mandate for better relationships between nursing facilities and hospices — as also recommended by the American Medical Directors Association — which has been incorporated in rule 418.112 of the Federal Register. The rule also allows hospices to participate in inpatient care facilities that are enrolled in Medicare and provides for 24-hour nursing services, stipulating that the hospice agreeing to participate must train the personnel delivering palliative care in those nursing facilities. Additionally, under the Balanced Budget Act of 1997, the amendment allows hospices to provide physician and medical director services. It also permits hospices located in non-urbanized areas to forgo providing physical therapy, occupational therapy, speech-language pathology, and dietary counseling on a 24-hour, as-needed basis, pursuant to section 418.74 of the final rule. Furthermore, the rules allow two hospices to collaborate in providing core or specialized services to each other's patients.
"Cost, competition, and care quality consequences"
"Policy reforms to improve hospice services"
The paper raises concerns related to the regulation requiring patients to relinquish their right to life-prolonging medical treatment in order to enroll in hospice care — a requirement that can be demoralizing for staff who understand that their role is to provide comfort rather than to explore life-saving interventions. Another key issue is the inherent difficulty in accurately predicting whether a patient truly has six months or less to live. A notable finding was that patients in large, for-profit hospice facilities had higher survival rates than those in non-profit facilities. The study acknowledges limitations in scope and generalizability, as it included only hospice patients who were predominantly over 65 and enrolled in Medicare. It identifies a future research avenue in examining the characteristics of physicians, hospitals, and hospice centers to understand how the timing of enrollment affects survival rates.
Gozalo, P. L., & Miller, S. C. (2007). Hospice enrollment and evaluation of its causal effect on hospitalization of dying nursing home patients. Health Services Research, 42(2), 587–610.
This secondary research study examined the effect of hospice care on mortality rates among nursing home patients who died between 1995 and 1997. The dataset was drawn from the Centers for Medicare & Medicaid Services and included all nursing home residents whose last assessment occurred fewer than 120 days before their date of death and who had complete records. The study found that 26 percent of hospice patients died in a hospital during the study period, compared to 44 percent of non-hospice patients — indicating that hospice enrollment significantly reduces the likelihood of hospitalization in the last 30 days of life.
However, this result may also be attributed to Medicare rules that prohibit hospice patients from applying for acute care hospitalizations, with hospice programs actively intervening when hospitalization is being considered. The study's main implication for this paper is that while regulations may be reducing hospitalization rates, it remains unclear whether that outcome is always in the best interest of the patient, given that families and hospices are taking on the risk of not pursuing hospital-based care.
Hospice Patients Alliance. (n.d.). Hospice law and regulations. Retrieved March 10, 2012, from Hospice Patients Alliance:
This website advocates for the rights of hospice patients and their families and identifies the primary sources of rules and regulations governing hospice care. The site notes that while hospice management may be well-versed in applicable regulations, frontline staff may not be equally informed. However, it is in the best interest of patients and their families to understand their rights and know which legal sources to consult if they believe their rights are being violated or that they are receiving inadequate care.
The website provides links to key legal resources and serves as a forum for patients and families to share information about the standard of services they should be receiving. For the purposes of this paper, the source is valuable in identifying which laws apply to hospices and in clarifying how those laws have influenced institutional operations.
Lorenz, K. A., Asch, S. M., Rosenfeld, K. E., Liu, H., & Ettner, S. L. (2004). Hospice admission practices: Where does hospice fit in the continuum of care? Journal of the American Geriatrics Society, 52(5), 725–730.
This study is restricted in scope to California, where 67 percent of licensed hospices participated in a survey. It drew on data from the 1997 California Office of Statewide Health Planning and Development (OSHPD) survey, which covers all licensed hospices in the state, including freestanding, licensed, and home health agency-operated hospices. In addition, a fax and telephone cross-sectional study was conducted in 1999 and 2000, in which respondents were asked to complete a questionnaire via fax or telephone.
The survey assessed hospice programs on seven admission criteria: lack of a caregiver; unwillingness to forgo hospital admissions; and receipt of total parenteral nutrition (TPN), tube feedings, radiotherapy, chemotherapy, or transfusions (Lorenz et al., 2004). The study found high variability in hospice admission refusal rates. The most infrequent cause for refusal was tube feeding. However, many hospice centers refused patients who lacked a caregiver or family, who were unwilling to forgo hospitalization, or who had specialized treatment needs such as TPN, chemotherapy, radiotherapy, or transfusion therapy. Notably, larger hospice centers were significantly less likely to refuse admission on any of these grounds, and commercial factors such as a patient's ability to pay, competition from other centers, or geographic location were not found to be factors in admission decisions.
The study suggests that hospice admission could be made more effective if patients and families had greater awareness of the care available to them. It also highlights the need for Medicare policymakers to consider hospice care capacity in order to improve services, and calls for greater integration of end-of-life care with other health services.
Meldrum, M., & Clark, D. (2000). Total pain: The work of Cicely Saunders and the hospice movement. APS Bulletin, 10(4).
This article provides essential historical context for understanding the hospice movement, the aims for which Cicely Saunders popularized it through her work at St. Christopher's Hospice, and the treatments she developed for patients. Saunders introduced the concept of "total pain," which she understood in terminally ill patients to be timeless, meaningless, and enduring — creating a sense of despair that could cause patients to lose the will to live. Her work focused on demonstrating that strong doses of opiates helped prevent the onset of this total pain, and that, rather than inducing dependency, appropriate opiate administration actually supported patients' engagement with life and helped caregivers avoid resorting to euthanasia.
Several of Saunders' studies aimed to prove that heroin doses helped patients combat total pain — which she defined as not only physical but also emotional, mental, and spiritual. Her 1970 work Matters of Life and Death addressed this concept extensively, describing the experience of total pain as one in which patients feel captive. In 1979, she collaborated with other experts to publish Advances in Pain Research, drawing on patient drawings and case histories to support her arguments. She also argued that home hospice care was as effective as inpatient care in enabling the terminally ill to lead a comfortable life to the end. This article is foundational for this paper in establishing the mission of hospice and providing a reference point against which to evaluate regulations that may affect that mission.
Miyashita, M., Misawa, T., Abe, M., Nakayama, Y., Abe, K., & Kawa, M. (2008). Quality of life, day hospice needs, and satisfaction of community-dwelling patients with advanced cancer and their caregivers in Japan. Journal of Palliative Medicine, 11(9), 1203–1207.
This study is one of the first to examine Japan's day hospice and home palliative care system. It used a cross-sectional methodology involving matched pairs of patients and their caregivers from three hospice institutions and eight home palliative care institutions, yielding a total of 57 pairs. The study was restricted to patients with advanced cancer and measured quality of life for both patients and caregivers.
The main finding is as follows: "We found that QOL for patients with advanced cancer and caregivers is significantly lower than the national standard. Many patients and caregivers using home palliative care services need access to day hospices" (Miyashita et al., 2008, p. 1206). The study found that 44 percent of patients and 67 percent of caregivers preferred day hospice centers, indicating a strong unmet need. This study is relevant to the paper in demonstrating the international dimensions of hospice care needs, and the United States model — along with its regulatory framework — may offer a useful reference for improving Japan's palliative and hospice care systems.
Saito, A. M., Landrum, M. B., Neville, B. A., Ayanian, J. Z., Weeks, J. C., & Earle, C. C. (2011). Hospice care and survival among elderly patients with lung cancer. Journal of Palliative Medicine, 14(8), 929–939.
This study used secondary data on patients with non-small-cell lung cancer who survived at least three months after diagnosis. It examined 7,879 patients who died between 1991 and 1999 and determined that — regardless of whether care was aggressive or non-aggressive — patients enrolled in hospice care had comparable or longer survival rates than those not enrolled. The study also notes that advances in medical care have decreased referral rates to hospice as physicians now have a broader range of life-sustaining treatment options available (Saito et al., 2011, p. 937). Aggressive care did not necessarily prolong life within the hospice setting, and short-term hospice enrollment did not significantly extend survival either.
The study highlights the importance of patient and caregiver preferences, which vary according to individual goals and may ultimately be the determining factor for or against hospice enrollment. Despite its limitations — namely the exclusion of patients under 65 and those not insured by Medicare — the study remains valuable for this paper. It demonstrates that irrespective of insurance status or payment method, hospice enrollment typically lasted no longer than one month. Policies regarding aggressive end-of-life care should therefore be monitored, as palliative care alone cannot ensure extended survival unless its primary purpose is relief from pain.
Ward, E. G., & Gordon, A. K. (2006–2007). Looming threats to the intimate bond in hospice care? Economic and organizational pressures in the case study of a hospice. Omega, 54(1), 1–18.
This paper explores the competition that hospice care faces as American ideology, oriented toward free-market ideals, drives firms to pursue cost efficiency and competitive advantage. Hospice care, however, operates under a fundamentally different motive — not to extend survival, but to provide relief and dignity to patients with terminal illness who seek a more comfortable death. This creates an ideological clash between market-oriented competition and the hospice mission, which may prove detrimental to the future of hospice programs. This paper is relevant here because it highlights many of the challenges hospices face as a direct result of the government regulations they must follow, and it grounds those challenges in detailed case-study evidence.
American Medical Directors Association. (n.d.). White paper on palliative care and hospice in long term care. Retrieved March 10, 2012, from
Carlson, M. D., Morrison, R. S., Holford, T. R., & Bradley, E. H. (2007). Hospice care: What services do patients and their families receive? Health Services Research, 42(4), 1672–1690.
Centers for Medicare & Medicaid Services. (2008). Medicare and Medicaid programs: Hospice conditions of participation; final rule. Federal Register, 73(109), 32088–32220.
Christakis, N. A., & Escarce, J. J. (1996). Survival of Medicare patients after enrollment in hospice programs. The New England Journal of Medicine, 172–179.
Gozalo, P. L., & Miller, S. C. (2007). Hospice enrollment and evaluation of its causal effect on hospitalization of dying nursing home patients. Health Services Research, 42(2), 587–610.
Hospice Patients Alliance. (n.d.). Hospice law and regulations. Retrieved March 10, 2012, from
Lorenz, K. A., Asch, S. M., Rosenfeld, K. E., Liu, H., & Ettner, S. L. (2004). Hospice admission practices: Where does hospice fit in the continuum of care? Journal of the American Geriatrics Society, 52(5), 725–730.
Meldrum, M., & Clark, D. (2000). Total pain: The work of Cicely Saunders and the hospice movement. APS Bulletin, 10(4).
Miyashita, M., Misawa, T., Abe, M., Nakayama, Y., Abe, K., & Kawa, M. (2008). Quality of life, day hospice needs, and satisfaction of community-dwelling patients with advanced cancer and their caregivers in Japan. Journal of Palliative Medicine, 11(9), 1203–1207.
Saito, A. M., Landrum, M. B., Neville, B. A., Ayanian, J. Z., Weeks, J. C., & Earle, C. C. (2011). Hospice care and survival among elderly patients with lung cancer. Journal of Palliative Medicine, 14(8), 929–939.
Ward, E. G., & Gordon, A. K. (2006–2007). Looming threats to the intimate bond in hospice care? Economic and organizational pressures in the case study of a hospice. Omega, 54(1), 1–18.
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