Hospice values, access to services, and the Medicare hospice benefit Mary-Ann Sontag, MSW

The hospice movement in this country is less than 20 years old, but it has a history that spans nearly 20 centuries. It is a response to perceptions that the dying process is primarily a personal, rather than a medical event. Although started as a grassroots movementby committed volunteers, hospice hasrapidly developed into a health care option reimbursed by third party payers, including the federal government. This rapid growth and acceptancehas resulted in serious challenges for hospice professionals. The American hospice movement was less than 10 years old when the federal government began to offer hospice reimbursement under

Mary-Ann Sontag, MS14~is a social worker in theHealth Dynamics Hospice Program, an Adjunct Faculty Member at George Fox College, and a PhD candidate in the School of Social Welfare, University of Cal(fornia at Berkeley.

Medicare. The form of hospice in America had not yet taken shape, although hospice values and philosophies were widely practiced, and formalized, in the early 1980’s through the NationalHospice Organization and the JointCommission on the Accreditation of Hospitals. The result of the imposition of Medicare regulations on a movementthat was still in its formative stage was the emergence of a hospice model that was perhaps artificially induced by the Medicare hospice benefit.1 The Medicare hospice benefit has solved as well as created problems for hospice in America. The recognition of hospice by Medicare as a viable alternative for the terminally ill added legitimacy to the hospice movement, and the additional funding offered programs a relatively stable source of income. But the hospice of Medicare differs in some significant ways from the visions offered by the early hospice leaders. Hospice has enjoyed considerable diversity in this country while remaining true to the values and philosophies that make hospice distinct.2’3’4 Participation in the Medicare program requires hospices to adopt standards, which by nature promote consistency and conformity. Hospice professionals are challenged to maintain program integrity without allowing the minimalist standards of Medicare to define hospice in America. Although not the only source of threats to hospice integrity, the

Medicare hospice benefit is a powerful driving force because of the importance of reimbursement. The restructuring of hospice under Medicare threatens distinctions that have traditionally set hospice apart from other

The Medicare hospice benefit has solved as well as created problems for hospice in America. forms of care for the terminally ill. In addition, the Medicare hospice benefit creates barriers to access through its regulations and low reimbursement rates. These two issues: the weakening of hospice philosophy and barriers to access will be addressed in this article. The interdisciplinary team An important characteristic of hospice care is the use of an interdisciplinary teamto serve the multidimensional needs of the terminally ill and their families. The hospice interdisciplinary team evolved out of the recognition that “[tjhere are few circumstances left in which it is possible for one kindly and well-trained physician or nurse to provide the breadth and depth ofcare which a wellorganized hospice team can offer.”5

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The hospice benefit under Medicare requires the use of an interdisciplinary group for patientcare. While it appears that the hospice commitment to interdisciplinary care is carried out, the benefit presents a threat to the interdisciplinary team approach to hospice care. The benefit shifts hospice care from a more holistic model to the traditional physician directed, nurse administered model ofmedical care.6 The guidelines under which Medicare certified hospice programs operate mandate that the physician be responsible forthe plan ofcare, even to the point of directing social work services.79 Covered services under the benefit are primarily medical. The emphasis on medical solutions to the experience of a terminal illness narrows the definition of hospice, and relegates nonmedical professionals to a subordinate role in hospice care. The recognition that a terminal illness has physical, emotional, social, and spiritual implications for patients and families led to an approach to care that valued and respected the input of many professionals. The hospice interdisciplinary team allows hospice care to be truly holistic care.’°The needs of the “whole patient” were not being met within the medical model, and the interdisciplinary careof hospice emerged as a response to the unmet needs. The Medicare model of hospice care, with its built in priority system that favors medical specialization, intervention, and expertise, is a threat to the team approach to care that has historically characterized hospice. Hospice services based on need, not ability to pay The commitment to providing services without regard to financial compensations was an important early hospice philosophy.”12 As the need for hospice services outgrew the abilities of communities and volunteers to support those needs, it became apparent

that good intentions could not keep hospice solvent indefinitely. Hospices began to look to third party payers for reimbursement for services, and some hospices began to bill patients! families.’3 The commitment to the less financially-able did not end, however, and many hospices continued to provide some care to patients and families in need without charge.’4”5

The hospice Medicare benefu~supports the mission of hospice to provide care to those in need, as long as the one in need is a Medicare Part A beneficiary. The Medicare hospice benefit recognized this tradition of care and mandated that a hospice could not, “...discontinue or diminish care provided to a Medicare beneficiary because of the beneficiary’s inability to pay.”6 This standard of hospice care dealt only with beneficiaries who had exhausted their 210 days of hospice benefit. A hospice program was required to continue providing services to the beneficiary who had outlived the benefit, although the hospice was permitted to bill the patient/family.’7 The 210 day limit was recently revised by HCFA. The new standard allows a patient who has lived beyond the 210 day limitto elect a fourth benefit period if s/he is still certified to be terminally ill by the attending physician and the hospice medical director. The fourth benefit period is indefinite, and therefore remains in effect until the patient’s death or until the patient revokes the benefit. The new ruling allows hospices to continue providing care to patients who have outlived the physicians’ prediction without placing a financial burden on programs.

The hospice Medicare benefit supports the mission of hospice to provide care to those in need, as long as the one in need is a Medicare Part A beneficiary. It does not directly deal with the issue of hospice care for nonMedicare beneficiaries who are unable to pay, and it could be argued that it should not. But the low reimbursement rates of hospices under Medicare do affect the financial stability of programs, and this in turn determines a hospice’s ability to provide non-reimbursable services. Williams’8 reports that reimbursement under Medicare covers, atbest, only 70 to 80 percent of expenses. Medicaid or private insurance might make up another5 to 12 percent of actual expenses.’9 Hospices must then generate additional income to make up the difference for these patients, Funds used by hospices to cover the deficit for Medicare patients are then unavailable for use by a hospice program to provide non-reimbursable care to other community members in need of hospice services but without insurance or the resources to pay. The hospice benefit under Medicare ensures hospice care for Medicare beneficiaries with little or no cost provided that services are received from Medicare certified hospice program. The recent addition of the fourth benefit period relieves hospices of financial responsibility for care given to Medicare beneficiaries who live more than 210 days after hospice admission.But the benefit’s low reimbursement rate has the potential to limit a hospice program’s ability to provide non-reimbursable services in the community. The Medicare hospice benefit could be ensuring access to hospice care for some at the expense of others. The patient and family as the unit of hospice care Hospice philosophy acknowledges that the impact of a terminal illness is

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felt by both the patient and his/her loved ones, and that all of these individuals may be in need of hospice care. This commitment to the patient and family as the unit of care has been, andcontinues to be an important distinguishing characteristic of hospice care in America. The hospice Medicare benefit appears to support this commitment to patients and families,2°but, through its reimbursement practices, Medicare follows a medical tradition that views the individual with the disease as the primary unit of care. The Medicare hospice benefit specifies that hospice services are to be made available to the patientand family. Family members may use the counseling services that are available through the hospice program, and Medicare requires that a hospice offer bereavement services to the family for up to one year following a patient’s death. The assessment completed for each patient upon admission to a Medicare certified programmust include information about the patient’s family.2’ It would seem that Medicare has sought to continue the hospice tradition of providing care to patients and families, but inreality the benefit appears to offer financial incentives for programs to offer minimal service to families. The Medicare hospice benefit requires that services be available to family members, but its system of reimbursement suggests where the programs’ interests might best be served. Reimbursement under Medicare depends solely on the patient; all reimbursement stops when a patient dies.22 The level of reimbursement from Medicare is dependent on the medical needs of the patient, and not on the needs of a family. Bereavement services are mandated under Medicare, but there are no guidelines for bereavement programs and they are not reimbursed separately.23 The Medicare certified hospicemust have services available for families, but availability is

very different from actively viewing the family as an important component of hospice care. Rosen24 suggests that within the medical model, “[h]ealth care providers have made a commitment to serve the families, and increasingly the notion of the family as the primary unit of care has become increasingly popular. In practice, how-

A Medicare beneficiary may gain access to his/her hospice benefits only through the primary physician. ever, the family is viewed as a group of individuals who can either prove helpful or resist efforts to deliver care.” The tradition of patient/family care in hospice was notmere acknowledgment of family members; hospice sought to truly address the impactof the terminal illness on the entire family. The Medicare reimbursement rates do not support the commitment of those hospiceswho seekto makepatients and families the unit of care in the tradition of hospice. The Medicare hospice benefit and its impact on access Theearly hospice leaders hoped that hospice care would be widely available to the terminally ill and their loved ones.25 Unfortunately, this vision of availability has not become a reality. The regulations of the Medicare hospice benefit affect access to hospice care in some significant ways. This section explores four barriers to access imposed by the Medicare hospice benefit. The role of the physician in limiting access to hospice care An important indicator of the shift in hospice toward the medical model is

the role ofthe physician in hospice care under Medicare. A Medicare beneficiary may gain access to his/her hospice benefits only through the primary physician.26 Personaland professional characteristics of a physician will determine his/her openness to hospice care as an option for patients. Allowing the physician to decide the availability ofhospice care implies that medical necessity is the onlyreason for hospice admission. Gordon27 identifies four areas that may interfere with the primary physician’s ability to make appropriate hospice referrals. First, the primary care physician who refers a patient to hospice becomes a member of the hospice interdisciplinary team. Physicians who are reluctant to share control of patient care may not seek hospice services for their patients, Second, Medicare regulations demand that the primary physician certify that the patient has six months or less to live. This mandate can present problems for physicians since predictions of survival for patients who have terminal cancer are difficult to make.28 Physicians may not refer patients to hospice because they do not feel comfortable making predictions about patients’ longevity as required under Medicare. Third, Gordon29 suggests that physicians deny access to hospice services because of their own inability to admit that the patient is not going to recover. In this way, access to hospice care is denied because of the physicians’ own attitudes and values. Finally, Gordon offers the possibilityof reduced income for the physician as a disincentive for appropriate hospice referrals. Hospice care does not generally involve expensive “high tech” interventions which may be linked to physicians’ income level. Gordon suggests that physicians may view hospice referrals as lost income, and therefore may not refer appropriate patients.

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Restrictive admission policies deny access The presence ofa primary caregiver (PCP) has becomeanimportantcriteria for admission in a hospice program under Medicare. Medicare reimburses hospices prospectively based on their level of care, and there is a cap on the total amount a hospice can be reimbursed for each patient. Admitting a patient who did not have a PCP, and who therefore may need expensive, continuous care in the home or in an inpatient facility, would be asignificant financial risk to a program. Hospice programs have recognized this risk, and seem to be screening prospective patients carefully.3°Kaplan and 0’ Connor~studied the effects of the Medicare hospice benefit on admission criteria and concluded that the data, suggests that federal regulations may have had an effect on access to hospice care by encouraging admission policy discrimination against persons who have no availablePCP.” The effect ofsuch practices is that those who may need hospice services the most are not able to receive care. Requirements that hospice patients must have a PCP favors the admission of elderly men, who are more likely than similar age women to have a spouse to serve as the PCP.32’33 Restrictive admission requirements not only deny needy persons access to care, restrictionsalso have the potential to damage the credibility of hospice in the community. The extensive screening ofpatients and families for program suitability furthers the already existing image that hospices, .do not serve poor people, do not serve minorities, do not exist in the areas that have the greatest need, and turn away patients who need hospice care the most.”34 This is in stark contrast to Sandol Stoddard’s35 image of hospice as a, .caring community .a group of people who are growing (or have grown) into a community by means of their shared dedication to a particular “.

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“. .

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task: promoting the physical, emotional, and spiritual well-being of the dying and their families,” and who cared for, as many patient-family units as staff and volunteer support will allow without distinction between any on the basis of race, color, creed, or ability to pay.” The Medicare hospice benefit may have resulted in admission requirements that restrict access and weaken the hospice tradition of commitment to care based on need.

The Medicare hospice benefit has resulted in a restructuring of hospice that makes many hospice programs unable to meet the special needs ofpeople living with AIDS The six month rule limits access Medicare regulations define a terminally ill person as one who is expected to succumb to his/her disease within six months. Hospice care under Medicare is available only to patients who are certified asterminally ill, using the Medicare definition of the term. While predicting life expectancy with any disease is difficult, it is easier to offer a prognosis for a cancer patient than for many other terminal diseases.~Alarge Florida hospice reports that in 1987, 90 percent of its patients had terminal cancer;37 this figure is more the rule than the exception in American hospice programs.38’39 The uncertainty in determining prognosis for patients with terminal diseases other than cancer serves as an access barrier for the admission for these patients. The AIDS pandemic presents special challenges to hospice. People with AIDS differ in some significant ways from the usual hospice population.

Hospicecare has traditionally beenpalliative care for those who do not wish to aggressively seek prolongation of life, but AIDS patients are frequently young persons who may not be ready to give up on treatments that may prolong their lives.40 An AIDS death is usually an “untimely” death, adding to the experience of loss.41 Some persons with AIDS are alienated from their families, and maybe in non-traditional relationships. Hospice care has a tradition of expertise with the terminal disease process, but the requirements designed to work within the Medicare benefit do not allow the .creativity and flexibility, commitment and understanding, values and principles that.. .will help now in finding the most appropriate andeffective waysto admit and serve HIV patients and their loved ones.”42 Hospice leaders are in disagreement about the issue of accepting AIDS patients into hospice programs. Saunders43 suggests that hospice care was developed for terminal cancer patients, and remains mosteffective for such people and their families. She proposes that new teams should be developed to deal with the special needs of people with AIDS and their loved ones. Stoddard~identifies hospice as an example and inspiration for comprehensive care to people with AIDS. In a recent interview, Elisabeth Kubler-Ross expressed her belief that hospice in America needs to become more flexible, and provide care for people living with AIDS.45 The Medicare hospice benefit has resulted in a restructuring of hospice that makes many hospice programs unable to meetthe special needs ofpeople living with AIDS, and their loved ones. The expertise of hospice in caring for the terminally ill and their families has much to offer people living with AIDS; this expertise should not be denied because of an unresponsive bureaucratic structure. “.

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The definition of hospice under Medicare affects access The Medicare hospice benefit limits access to hospice care through the imposition of regulations and a reimbursement system that requires hospice to be a home based program of care. Although many hospice programs already fit into the Medicare model of hospice, many do not, and these programs must then decideif the reimbursement under the Medicare hospice benefit is worth restructuring their programs.

The Medicare regulations favor afready existing programs, and new or planned programs may notfind the Medicare benefd usefulfor their development. Medicare regulations affect access to care by limiting the type of hospice care available, but also through regulations and a reimbursement system that do not adequately support the formation of new programs. Some rural areas have encountered difficulties in establishing hospice programs due to lack of funding. Programs may not receive Medicare reimbursement until they meet HCFA requirements, and to do this a program must be in full operation. Small hospice programs may not be able to achieve full operation without funding, resulting in a dilemma that one writer called a “catch22.~46Developing Medicare certified hospice programs is further complicated by slow reimbursement from Medicare.47 The Medicare regulations favor already existing programs, and new or planned programs may not find the Medicare benefit useful fOr their development.

Summary The Medicare benefit has been an important force in shaping the American hospice movement during the 1980’s.48’49 Hospice reimbursement under Medicare added legitimacy to the movement, increased access to hospice care for some Me~dicare beneficiaries, and provided financial support to Medicare certified hospice programs. But the increased access for some may come at the cost of decreasedaccess for others, and the price of reimbursement may be the erosion of hospice as a unique form ofterminal care in this country. It is up to hospice professionals to balance the fiscal realities of providing hospice care without losing sight of the values and philosophies that have made hospice a “special kind of care.’U References 1. Paradis L: The future of hospice. In Paradis L (ed.): Hospice handbook: A guide for managers and planners. Rockville, MD, Aspen Publications, 1985 2. Zimmerman J: Hospice: Complete care for the terminally ill. Baltimore, Urban and Schwarzenberg, 1981 3. Paradis L: The development of hospice in America: A social movement organizes. In Paradis L (ed): Hospice handbook: Aguide for managers and planners. Rockville, MD, Aspen Publications, 1985 4. Lukashok H: Hospice care under Medicare — An early look. Preventive Medicine, 1990;19:730-736 5. Op. cit. Zimmerman J 6. Sheehan C: The medical model of hospice: Why it cannot work in America. Am J Hosp Care, 1987;4(2):5-6 7. Dept. of Health and Human Services, Health Care Financing Adm: Medicare hospice manual. US Govt Printing Off, 1987 8. Op. cit. Sheehan C 9. Brown C: Medical oncology and hospice: Compatible or not? Am J Hosp Care, 1988;5(6): 15-16 10. Op. cit. Zimmerman 11. Stoddard S: The hospice movement: Abetter wayofcaring for the dying. Briarcliff, NY, Stein and Day, 1978 12. Lack 5: Characteristics of a hospice program of care. In Davidson G (ed.): The hospice: Development and administration. NY, Hemisphere Publishing, 1978 13. Lennan D: AHA hospital hospice survey. Am J Hosp Care, 1988;5(1):28-31 14. Burzynski T: A method for hospice

economic survival: Comprehensive fund raising. AmJHosp Care, 1987;4(6):15-20 15. Op. cit. Lennan D 16. Op cit. Dept ofHealth and Human Services, Health Care Financing Adm 17. Ibid. 18. Williams R: Medicare certification: The good, the bad, and the ugly. Am J Hosp & Pal Care, l990;7(3):17-19 19. Ibid. 20. Op. cit. Dept ofHealth andHuman Services, Health Care Financing Adm 21. Ibid. 22. Ibid. 23. Ibid. 24. Rosen B: Families facing death: Family dynamics ofterminal illness. Lexington, Mass., Lexington Books, 1990 25. Op cit. Stoddard S 26.Op. cit. Dept ofHealth and Human Services, Health Care Financing Adm 27. Gordon A: The physician gatekeeper: Access to the Medicarehospice benefit. Am JHosp Care 1989;6(5):44-47 28. Enck R: Prognostication of survival in hospicecare. Am J HospCare, 1990;7(2):11-13 29. Op. cit. Gordon A 30. Klingensmith D, Novotny T: Creating primary caregivers where there are none. Am J Hosp Care, 1988;5(1);32-35 31. Kaplan M, O’Connor P: The effect of Medicare on access to hospice care. Am J Hosp Care, 1987;4(6):34-41 32. Op. Cit. Klingensmith D, Novotny T 33. Wilson V: The consequences of elderly wives caring for disabled husbands: Implications forpractice. Social Work, 1990;35(5):417421 34. Lescohier D: Towards a unified hospice perspective. Am J Hosp & Pal Care, 1990; 7(4):10 35. Op. cit. Stoddard S 36. Brown C: Medical oncology and hospice: Compatible or not? Am J Hosp Care, 1988;5(6):15-16 37. Ibid. 38. Saunders C: New teams should be developed for AJDS care. Am J Hosp Care, l987;4(6):7-8 39. Galazka M: Interesting times ahead. Am J Hosp Care, 1987;4(6):1l-14 40. Brenner P, Dennis J, Kauffer D: Admitting HIV patients. Hospice, 1990;l(l):8-13 41. Raphael B: The anatomy of bereavement. NY, Basic Books, Inc., 1983 42. Op. cit. Brenner Petal 43. Op. cit. Saunders C 44. Stoddard 5: Hospice: Approachingthe 21st century. Am J Hosp Care, 1990;7(2):27-30 45. Cerquone J: Unfinished business. Hospice, 1990;l(3):17-19 46. Eldridge F: A “Catch-22” dilemma establishing and funding small rural hospices. Am J Hosp Care, 1988;5(6):19,21 47. Op. cit. Williams R 48. RhymesJ: Hospice carein America. JAMA, 1990;264(3):369- 372 49. op. cit. Paradis L

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Hospice values, access to services, and the Medicare hospice benefit.

The Medicare benefit has been an important force in shaping the American hospice movement during the 1980's. Hospice reimbursement under Medicare adde...
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