Patients, their families and physicians are becoming increasingly aware that the terminally ill may be more comfortable and may receive more comprehensive and satisfying care when palliative measures, rather than life-prolonging goals, are pursued.1 A 1996 Gallup poll showed that 88 percent of adults would prefer to be cared for in their own home or a family member's home if they became terminally ill.2 At the forefront of this approach to dying are hospice programs and physicians dedicated to rational and compassionate end-of-life care.3
Since the Medicare Hospice Benefit was introduced, many terminally ill patients and their families have relied on interdisciplinary, comprehensive end-of-life care given in the home.4 As early as 1986, Medicare recognized that the nursing facility was the home of its residents.5 Consequently, the rapidly increasing knowledge and skills of palliative care should be applied in the nursing home setting, where more than 20 percent of Americans die.5,6
By keeping terminally ill patients in their own environment, the natural dying process can be respected. This approach is consistent with the general hospice philosophy, in which death is viewed as a natural part of life and a process that should be handled with compassion and dignity.
Eligibility for Medicare Hospice Benefit
The first task in determining when hospice care is a covered service is accurately predicting life expectancy.7 Medicare-certified hospices require physicians to certify that a patient's prognosis is expected to be six months or less of life should the disease take its usual course. Medicare has not been explicit about the maximum expected survival rate at six months (e.g., 10 percent or 50 percent survival). However, recent enforcement actions have led to conservative interpretations, with hospices tending to enroll only those patients who are virtually certain to die within six months.8
Nursing home patients may differ from the usual outpatient hospice population, since most of the former have a noncancer-related diagnosis.9 Once the usual outpatient cancer patient has begun to lose function and weight, the prognosis is more precise than that for a patient who has a noncancer-related disease.
The National Hospice Organization recently published guidelines to help determine the appropriateness of chronically ill patients for hospice care.10 These guidelines generally combine disease-specific information with functional and nutritional measures. Based on the guidelines, an example of an eligible patient would be one who has less than six months to live, who has advanced dementia at stage 7 of the Functional Assessment Staging Scale11 and who has comorbid medical conditions of sufficient severity to have required medical treatment within the past year. In addition, the patient should exhibit all of the following characteristics: inability to ambulate without assistance; inability to dress without assistance; inability to bathe properly; urinary and fecal incontinence, and inability to speak or communicate meaningfully.
The guidelines require frequent reevaluation of the patient's condition to monitor disease progression. Perhaps a useful initial method might be to screen all new nursing home residents for hospice eligibility, just as many nursing facilities currently screen new residents for physical therapy.
Medicare Hospice Benefit Services
When a nursing home resident is identified as having a limited life expectancy, it is appropriate to plan for end-of-life care. Medicare Hospice Benefit can help greatly with the many tasks involved in providing palliative management of the dying patient's symptoms, attending to increased hygienic needs and supplying bereavement services.12 Specially trained hospice professionals and volunteers can provide many services that are beyond those usually offered in nursing homes13 (Table 1).
|1. Hospice nursing care under the supervision of a registered nurse who usually has special training and expertise in end-of-life care. The hospice nurse visits the patient as needed and is on call, with other hospice nurses, 24 hours a day, seven days a week, for support of the nursing home staff, the terminally ill patient and the patient's family.
|2. Medical social services provided by a social worker.
|3. Consultation and oversight provided by the hospice medical director.
|4. Counseling services, including dietary recommendations and bereavement counseling, with respect to the terminally ill patient, as well as adjustment-to-death support for the patient's family and friends. Bereavement services are provided for a year after the patient's death.
|5. Friendly visits, compassionate listening and companionship provided to the patient and family by trained hospice volunteers.
|6. Other services provided as needed, including physical, occupational and speech therapy, as well as home health aide and homemaker services. For the provision of these services, there may be a special arrangement between the hospice and the nursing home.
|7. Drugs and medical supplies provided by the hospice as needed for palliation and management of the terminal illness and related conditions. The patient is responsible for a 5 percent drug copayment, not to exceed $5 per drug.
|8. Pastoral care assessment. Clergy offer spiritual support as desired, and establish or maintain communication between the terminally ill patient and his or her regular congregation of worship.
When a nursing home resident is referred for care under the Medicare Hospice Benefit, the hospice assumes responsibility for the professional management of many interdisciplinary services that supplement the usual care provided by nursing home staff. The process of delivering end-of-life care continues within the dual regulations of the nursing home and the hospice. Thus, the care plan must reflect hospice philosophy and must be based on an assessment of the patient's needs and specific living arrangement in the nursing home.14 The plan of care must include the resident's current medical, physical, psychosocial and spiritual needs. The coordinated care plan must also designate which care and services the nursing home will provide in order to be responsive to the needs of the patient.
During the provision of all hospice services, the attending physician remains in charge. This physician works cooperatively with the interdisciplinary team but is responsible for medical services and continues to bill as the attending physician. It is comforting for the patient and family members to know that the attending physician will remain involved during the patient's time of greatest need and will be working in collaboration with a team of experts who are skilled in end-of-life care.
The physician generally orders the personalized medical care, which includes pain control and, as needed, the relief of dyspnea and other common symptoms of dying.15 All medical treatments should have the goal of symptom control, and they should be consistent with the hospice plan of treatment. In the nursing home setting, some medications that are essential for good hospice care are typically weaned or controlled under regulations set by the Omnibus Reconciliation Act. However, these medications can be given appropriately, with careful documentation of their use in the patient's chart and care plan.
One major hospice benefit is bereavement services for nursing home staff and residents who have become attached to the dying patient. Since these services are provided for a year after the patient's death, hospice staff and volunteers can, over the course of the bereavement period, assess and counsel those who cared for and about the patient.16 Some hospices establish ongoing support groups for nursing home staff.
The Medicare Hospice Benefit covers all visits by hospice team members, the rental or purchase of durable medical equipment and the cost of supplies that are ordered by the hospice team. The hospice also supplies drugs for the palliation and management of the terminal illness, a benefit that normally is not available under the regular Medicare program. For each of these drugs, the beneficiary is only responsible for a small copayment ($5 or less per drug). Thus, hospice care is not an additional expense for many nursing home residents. Payment of room and board remains the responsibility of the patient and/or the family, or it is covered by government assistance programs for eligible residents (e.g., under Medicaid).
The Medicare Hospice Benefit cannot be provided for nursing home residents who are receiving skilled Medicare coverage if their diagnoses for both hospice and nursing home skilled care are the same. Before the Medicare Hospice Benefit can be initiated, these patients may choose to use all their skilled-care days, or they may elect to waive their skilled coverage. How these Medicare regulations will change as more experience is gained in providing hospice care in nursing homes remains to be seen.
Deciding on Hospice Care
Most nursing home residents die of the same diseases as the general American population: heart disease, cancer, stroke, lung disease, diabetes and other illnesses. However, nursing home residents often have concomitant diseases, particularly dementia. Altered cognitive capacity in 40 to 60 percent of nursing home residents increases the challenges involved in deciding on and providing palliative care.17 Special techniques for assessing and managing discomfort in cognitively impaired patients are reviewed elsewhere.18,19
Relationship Between Hospice and Nursing Home
While many nursing homes have a contract with a hospice program, they may not have used hospice services regularly. Therefore, these nursing homes may not have established procedures for ensuring that patients receive the services.
Some nursing homes have not yet developed a formal relationship with at least one hospice program that meets the regulatory requirements of both entities. Thus, the physician may serve as a catalyst for a nursing home to develop a hospice relationship by requesting that these valuable services be provided to his or her patients.
Setting of Hospice Care
Some nursing homes have special units that handle the care of dying residents, but most facilities allow these residents to stay in their usual room. A terminally ill resident will generally prefer to remain in his or her usual setting. However, this matter should be discussed individually with each resident and family, and the accommodation of other residents (e.g., roommates) must be taken into consideration.20 Hospice personnel work closely with the patient, family and staff to determine where the resident spends his or her last days.
No matter where or how end-of-life care is delivered within the nursing home, the physician is responsible for assessing the quality of the terminal medical care that is given. Three general areas can be regularly and easily assessed.21 These minimum standards of care include documentation of advance directives, attention to pain control and relief of the dyspnea that often accompanies the last moments of dying. Other areas that require evaluation include management of the other symptoms of dying, patient hygiene and psychosocial support for the patient and family members.22 If indicators in these areas are regularly measured and addressed within a general nursing home program, good-quality terminal care can be assured.