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Hospice as a Care Option in Long-Term Skilled Nursing Care
Currently, approximately 1.45 million individuals are receiving hospice care in the United States, but many more could benefit from hospice services. While hospice originated to support individuals caring for terminally ill relatives at home, hospice services under the Medicare hospice benefit (MHB) can also be accessed by individuals residing in nursing homes or assisted living facilities. Although the number of hospices participating in Medicare is rapidly increasing, there is still considerable confusion about hospice as a care option in the long-term care (LTC) skilled nursing setting. With the “baby boomers” reaching retirement age, the number of patients requiring hospice care and nursing home services will likely increase; thus, it is imperative for individuals serving the LTC community to have a solid understanding of the MHB. This article provides a review of hospice care in the nursing home setting, outlining demographic trends in hospice; patient eligibility; clinical guidelines of end-stage disease; services that are covered and not covered by the MHB; regulatory concerns; financial coverage concerns; benefits of hospice in the LTC; impact of hospice on survival rates; and the future of hospice care. (Annals of Long-Term Care: Clinical Care and Aging. 2010;18[12]:32-37.)
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In the United States, modern hospice care is guided by the Medicare Hospice Benefit (MHB), which was established in 1983 and pays for 80% of all hospice care, including medical and nursing services, counseling, and bereavement services.1 The original goal of the MHB was to support families caring for a dying relative at home; however, under certain circumstances, the MHB hospice services can be provided in a nursing home or in an acute care hospital. Referral for hospice care is appropriate when the overall plan of care is directed toward comfort rather than reversing the underlying disease process. An increasing number of older adults are living in assisted living facilities or have other semi-independent living arrangements, and the variations among the mare vast, making challenges to care unique in this patient population. We provide a review of hospice care in the nursing home setting.
Demographic Trends
In 2011, the oldest “baby boomers” will turn 65, and the sheer volume of this generation will likely increase the number of patients requiring access to hospice care. In addition, this generation will likely play a more active role in healthcare decision making than previous generations; thus, the demand for hospice services in the community and the nursing home setting will likely increase.
According to the Hospice Association of America, the total number of hospices participating in Medicare rose from 31 to 3346 between 1984 and 2009, representing a 108-fold increase.2 The National Hospice and Palliative Care Organization (NHPCO) estimates that in 2008 approximately 1.45 million people in the United States received hospice services and about 38.5% of all deaths were under the care of a hospice program. 3 Of these hospice deaths, 22% occurred in nursing homes.
The racial and ethnic diversity in patients who use hospice services has not changed significantly in recent years. Of those who received hospice services between 2007 and 2008, about 82% were white. Among black individuals, fewer used hospice in 2008 (7.2%) than in 2007 (9%). Among the multiracial or other race category, there was a slight increase, from 7.8% in 2007 to 9.5% in 2008.3 According to the NHPCO, 4 out of 5 hospice patients are over the age of 65, and more than 33% are 85 years or older.3
Who is Eligible for Hospice under the MHB?
To be eligible for hospice services, the patient must meet the following criteria1:
• The patient must be entitled to Medicare Part A (hospital payments). Once the patient decides to enter hospice care, he or she signs off Part A and completes a consent form to elect the MHB. This process is reversible—patients may at a future time elect to return to Medicare Part A for that diagnosis. Patients with intact decisional capacity need to be included in the discussion and decision about hospice enrollment, even if the idea to begin hospice comes from the staff or a family member. If the patient lacks decisional capacity, a family member or guardian may elect the MHB for the patient. A patient who lacks decisional capacity and has no family members or appointed guardian usually cannot elect the MHB.
• The patient must be certified by the hospice medical director and primary physician to have a life expectancy of less than 6 months “if the patient’s disease runs its natural course.” Patients who live more than 6 months can continue to be eligible if it is thought that death is likely to occur within the next 6 months.
• Under the MHB, do-not-resuscitate status cannot be used as a requirement for admission.
Clinical Guidelines of End-Stage Disease
Clinical guidelines exist to help clinicians evaluate whether the patient’s condition is in the end stages and to help assess hospice appropriateness (Table 1). These guidelines provide general information about end-stage disease. In determining prognosis, physicians need to consider whether the patient’s life expectancy is 6 months or less. They can ask themselves this question: “Would I be surprised if the patient die within 6 months if the illness ran its normal course?” Answering “no” may trigger a re-assessment of the patient’s current state and immediate future, including whether or not hospice services are appropriate.
Estimates of life expectancy have an important impact on medical practice in the long-term care (LTC) setting.4 Realistic and honest prognostication allows the patient, their family, and the clinician to plan future events in a meaningful way. Conveying prognosis in a supportive manner can sometimes enhance the patient–doctor relationship. An increasing number of tools are available to help clinicians assess prognosis,5 such as the four-item risk score for heart failure patients,6 the Palliative Prognostic Score for patients with and without cancer,7-9 and the Mortality Risk Index for LTC residents with dementia.10
What Concrete Services Does Hospice Provide?
Hospice provides home nursing and medical care, support for the family, advocacy for the patient, spiritual counseling, pain assessment and treatment, and access to medications and durable medical equipment to manage the illness that resulted in the need for hospice care. If home-based care is not sufficient or there are other needs that cannot be met at home, hospice offers other levels of care, including inpatient hospice care.11
Table 2 outlines covered services (100% coverage with no co-pay) and non-covered services.1 For the nursing home patient, some services may be uniquely important, including the personal attention of a hospice aide (equivalent to a home health aide) and the provision of bereavement counseling services for family members after the patient’s death. Many hospices recognize that nursing home staff and aides also grieve the loss of the patient and may extend bereavement services to them as well.
While there is potential for duplication of services between nursing home staff and hospice staff, they each have their own expertise and can collaborate to optimize a resident’s plan of care. Hospice staff have expertise in assessing goals of care and implementing a plan that meets those goals when a crisis occurs, offering alternatives to sending a patient to an emergency department. Hospice staff also have expertise in assessing patients for pain, dyspnea, or other distressing symptoms, even if the patient cannot speak or report symptoms, and advocate for adequate symptom relief. Near the very end of life, hospice staff can more easily recognize signs and symptoms of the dying process and can counsel patients and their families about what to expect.
Plan of Care
The hospice team and the patient’s physician collaborate to maximize quality of life by jointly developing the plan of care, which is based on the patient’s diagnosis, symptoms, and other individualized needs. The hospice program and the patient’s physician must jointly approve any proposed tests, treatments, and services. In general, only those treatments that are necessary for palliation or the management of the terminal illness will be approved.
Physician Role
At the time of enrollment into hospice, the patient indicates the primary physician who will direct care. In the LTC setting, the primary physician will almost always remain the nursing home attending physician. The primary physician is responsible for working with the hospice team to determine appropriate care.
Non-Medicare Hospice Plans
Medicaid hospice benefits closely mirror the MHB. Private insurance plans also generally emulate the MHB, but occasionally depart from it dramatically, such as by capping the total number of days a patient may receive hospice care.
Where does Hospice Care Take Place?
A common misconception is that hospice is “a place” that dying patients go to; however, the vast majority of hospice care is home-based. “Home” can mean the person’s actual home or residence in a nursing home or assisted living facility; thus, hospice services can be provided in many settings.12
Home
The majority (>95%) of hospice care takes place in the home. Hospice team members visit the patient and family on an intermittent basis, as determined by the plan of care, which changes based on the patient’s needs. In 2008, 40.7% of all hospice deaths occurred at private residences.3
LTC Facility
In the United States, 25% of patients die in nursing homes.3 Medicare recognizes that this can be the resident’s “home” and that the patient’s “family” frequently includes the nursing home staff. Under the MHB, hospice care can be provided to residents in addition to the usual care provided by the facility. Individual hospice programs must establish a contract with the facility to provide hospice care. The MHB does not pay for nursing home room and board charges. Hospice use by beneficiaries in nursing facilities grew from 11% in 1992 to 35% in 2000.13 In 2008, 22% of all hospice deaths occurred in nursing homes.3
Hospice Inpatient Unit
Dedicated units, either free-standing or within other facilities such as nursing homes or hospitals, are available in some regions. Permitted length of stay and room and board fees charged to patients vary between facilities.
Hospital
When pain or other symptoms related to the terminal illness cannot be managed at home, the patient may be admitted to a hospital for more intensive management, still under the MHB. The inpatient facility must have a contract with the hospice program to provide this service.
Physician Services
Medicare reimburses physicians for providing direct patient care services and care related to the terminal illness. This reimbursement is in addition to, and not included in, the per diem fee. What follows are a few billing bullet points.
• If the attending physician is not associated with the hospice program, the physician bills Medicare Part B in the usual fashion. The bill must indicate that the physician is not associated with the hospice program or the claim may be denied. The bill should also state the appropriate coding modification to indicate that the patient is on a hospice program.
• Patients can see consulting physicians under the MHB if the hospice agency contracts with the consultant to do so. The hospice agency submits the claim under Medicare Part A and reimburses the consultant per their contract.
• If there are billing-related questions, the hospice’s billing department serves as an excellent resource to clarify these concerns.
Survey and Regulatory Concerns
Nursing home quality measures and survey results are now readily available for review by the general public.14 These clinical measures address concerns about patient care, such as pressure ulcers, weight loss, pain management, use of restraints, urinary tract infections, and use of Foley catheters.
An increase in the number of on-site deaths among nursing home residents receiving hospice care is an anticipated outcome of an effective hospice program in this setting. This is likely due to a better understanding by the family of the patient’s prognosis and changes in goals of care, perhaps resulting in less hospital transfers near the end of life. There are no federal or state survey deficiencies or other penalties related to a nursing home’s number of hospice deaths.
Placing a terminally ill patient in obvious decline on a hospice program demonstrates a nursing facility’s acknowledgment of the patient’s condition and addresses the patient’s and family’s comfort-related concerns. The hospice team routinely addresses potential regulatory concerns, such as anticipated weight loss and skin breakdown, which are often experienced by patients who are rapidly approaching the end of life. The Minimum Data Set (MDS) is a standardized tool for assessing the functional capacity of residents of LTC facilities. The MDS includes boxes that can be checked off that indicate that a nursing home patient is receiving hospice services or has end-stage disease with 6 months or less to live. When either of these boxes is checked off, certain quality measures are no longer mandated for that patient, including interventions for weight loss and pressure sores. Moreover, clinical indicators related to pain management tend to improve as a consequence of the expertise offered by the hospice team.15 In addition, with the Centers for Medicare & Medicaid Services increasingly scrutinizing hospital readmissions for nursing home residents, use of hospice care may help reduce unnecessary readmissions by reassessing goals of care and presenting alternative options.
Financial Coverage Concerns
The MHB was originally designed to provide comfort care at the end of life in the outpatient setting. The majority of nursing home residents who have Medicare coverage have spent down their personal assets to qualify for state-funded healthcare assistance (ie, Medicaid). Such dual coverage of hospice care for nursing home residents is a complex and confusing arrangement, but was enacted by Congress in 1989 to ensure that the MHB and hospice’s specialized compassionate support for patients nearing the end of their lives could be accessed by residents of LTC facilities, and not just by those residing in their own homes.
Medicare and Medicaid patients who qualify for and consent to hospice care and have their LTC covered by Medicaid can enroll to receive the hospice benefit. In these cases, the hospice provider assumes responsibility for managing the patient’s care and receives two payments from the government. One payment is for interdisciplinary professional management of the patient’s terminal condition at Medicare’s usual rate, and the other is for room and board at 95% of the prevailing Medicaid nursing home rate for that patient’s bed, which is then passed on by the hospice to the nursing home for providing room-and-board care and related services. This dual coverage arrangement requires a contract between the Medicare-certified hospice and the nursing home. Such care is controlled by two separate regulatory systems—one for hospice and the other for the nursing facility. Because the two systems are not always well coordinated and have philosophies of care that can sometimes be at odds, there are some situations in which a Medicare beneficiary residing in an LTC facility will have financial difficulty in accessing hospice services. For example, a patient with a terminal illness who is admitted to a nursing home under a Medicare Part A stay for subacute rehabilitation is not eligible for hospice care because of differing goals of care and because Medicare would consider use of both subacute rehabilitation and hospice care as “double dipping.” Therefore, it is important for physicians and other LTC healthcare providers to openly communicate with terminally ill patients and their families about the patient’s prognosis and goals of care, and to help them choose the most appropriate services. This would allow more terminally ill patients to reap the clinical, practical, and spiritual advantages of hospice care.
Nursing home residents on ventilator support also present a unique challenge in accessing hospice care. The physician’s ability to predict a life expectancy of less than 6 months becomes considerably more difficult when a patient is being maintained on today’s sophisticated ventilator support systems. Moreover, when a patient and their family have opted to continue ventilator support indefinitely, their goals of care are not likely to be in line with hospice or palliative care. In addition, younger patients admitted to nursing facilities on ventilator support are often covered by health maintenance organization plans, which do not allow for ready access to hospice services in concurrence with active ventilator support; however, ventilator support alone does not preclude a patient from being accepted into an LTC-based hospice program. If the patient’s or family’s goals of care change to a palliative and comfort focus, then the situation can be reassessed.
Barriers to Hospice Use in Nursing Homes
A variety of factors can influence hospice referral and the timing of the referral. The nursing home staff’s recognition of familiar signs of decline can facilitate hospice referral.16 In contrast, several factors may impede or delay referral to hospice, including a perception that death is unexpected, an uncertain prognosis, staff members’ beliefs that hospice does not add value to nursing home care or is only appropriate for crises, and a belief that hospice is only for the “very end.”17 A 2008 study revealed that nursing home residents received hospice for longer periods when staff thought that hospice complemented nursing home care and took the initiative in discussing the option of hospice with the patient and their family.16 As mentioned previously, financial misalignments can also delay or impede hospice referrals.
Benefits of Hospice in LTC
LTC residents are entitled to dignified care and appropriate symptom management at the end of life. Hospice referral and enrollment makes this more likely.18 There are definitive benefits to enrolling LTC residents in hospice if their prognosis is estimated to be 6 months or less, including:
• Patient will have access to expert pain and symptom assessment and management.
• Patient will have access to individualized services, such as a hospice aide for 4 hours daily 5 days a week. The dedicated aide can help with the patient’s hygiene, personal care, and feeding, while providing companionship and socialization
• The family of the terminally ill resident is entitled to 13 months of bereavement counseling after the resident dies. Even when the dying resident has few symptoms or is minimally responsive, the family may still benefit significantly from supportive counseling about what to expect as well as bereavement follow-up.
• Hospice admission brings clarity to a resident’s plan of care. A collaborative plan between the nursing home and the hospice will make clear to state surveyors that the resident’s weight loss, functional decline, or abnormal laboratory values, were an expected part of the dying process and did not necessarily require further testing or interventions.
• Dying patients may benefit from medications that are otherwise considered inappropriate for geriatrics patients. These may include anticholinergic medications that dry secretions or antipsychotic agents to manage terminal delirium.
• Formal hospice status serves as a safeguard that the hospice group must be consulted before any hospital transfer, and alerts everyone to the resident’s palliative care status and goals of care.
• Hospice programs provide medications that are related to the hospice diagnosis. This may provide a significant benefit for residents who lack drug plans or are under a Medicaid program that includes medications in the facility’s daily rate.
Impact of Hospice on Survival
Research has shown that hospice enrollment may prolong survival among patients in certain diagnostic groups. In a study analyzing survival among 4493 patients from a sample of 5% of the entire Medicare beneficiary population between 1998 and 2002, the mean survival period was significantly longer for patients with congestive heart failure, lung cancer, or pancreatic cancer who received hospice care versus those who did not.19 A marginally significant survival benefit was also observed for patients with colon cancer who received hospice care.19
What Does the Future Hold?
While there are successful models for hospice–nursing home collaboration,20 there are also many deficiencies in end-of-life care in nursing homes and confusing financial arrangements to contend with. There are proposals to reform how end-of-life care is provided in LTC settings, including a new Medicare end-of-life care benefit tailored to elderly nursing home residents21 and a proposal to make palliative care the default type of care for every resident of an LTC facility who has dementia, with staff training, regulation, and payment modified accordingly.22
Until reform occurs, nursing homes considering contracts with a hospice should ask specific questions about the quality of the hospice’s services, the frequency of its visits, the team’s accessibility for after-hour medical crises, and its outcomes on measures such as pain management. For the collaboration to be truly effective, the hospice–nursing home collaborators must be philosophically and otherwise aligned, have similar missions, understand the differing approaches to care, and have administrators and medical staff that are open to and support the collaboration.
The authors report no relevant financial relationships. Dr. Pan is director of palliative care, Geriatrics Faculty, New York Hospital Queens, Flushing, NY, past medical director, Hospice Care Network, Fresh Meadows, NY; and, Dr. Russo is vice president, Medical Services/Medical Director, The Silvercrest Center for Nursing and Rehabilitation, Briarwood, NY.
References
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11. Friedman TC. End of Life Palliative Education Resource Center. Fast fact #140: The Medicare hospice benefit: levels of hospice care. Accessed October 19, 2010.
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13. Medicare Payment Advisory Commission, Report to Congress: Increasing the Value of Medicare. June 2006. Accessed October 19, 2010.
14. The Official U.S. Government Site for Medicare, Nursing Home Compare Section www.medicare.gov/nhcompare. Accessed October 19, 2010.
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17. Beresford L. A new idea for hospice in long-term care. www.mcknights.com/a-newidea-for-hospice-in-long-term-care/article/173572. Accessed October 19, 2010.
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19. Connor SR, Pyenson B, Fitch K, et al. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage. 2007;33(3):238-246.
20. Miller SC. A model for successful nursing home-hospice partnerships. J Palliat Med. 2010;13(5):525-533.
21. Huskamp HA, Stevenson DG, Chernew ME, Newhouse JP. A new Medicare end-of-life benefit for nursing home residents. Health Aff (Millwood). 2010;29(1):130-135.
22. Meier DE, Lim B, Carlsen MD. Raising the standard: palliative care in nursing homes. Health Aff (Millwood). 2010;29(1):136-140.
