Odd Couple? Hospice and Nursing Home
J. Nichols; Caring for the Ages; Nov. 10, 2011
Conflicts among nursing homes and hospices are depressingly frequent, so widespread that they are obviously not the result of specific bad apples. There are structural, institutional explanations for this friction, and they need to be examined and resolved.
Despite the need to provide coordinated care, hospices and nursing homes come from dramatically diverse customs and cultures, operate inside of conflicting regulatory surroundings, experience different fiscal problems and constraints, and bring varying areas of expertise to patient care.
When you add the strange contrary laws that require each group to be accountable for the coordination of care and responsible for care inadequacies in the other party, it is remarkable that collaborations exist at all. However, as nursing homes are progressively the site of care for dying seniors, with an estimated 25% of deaths in the United States transpiring in nursing homes, the need to get all this right is already substantial and likely to increase even more.
In this column last year (Caring for the Ages, June 2010, p. 6), I detailed the possible rewards to a nursing home and its residents of a relationship with a hospice program. These include increased access to high priced medications for symptom control (furnished as a hospice benefit), the expertise of hospice nurses in maximizing resident comfort, the availability of social work and bereavement counseling to the family members of the dying patients, the prospective for individualized comfort services such as one-on-one music therapy or reminiscence therapy, and the clarity that the hospice declaration provides to state and federal government surveyors when they look at the charts of nursing home residents who have suffered detrimental consequences such as weight loss or skin breakdown. These benefits have not changed.
From Different Places
The hospice benefit was not an initial element of Medicare. It was put in in 1983 after demo programs all over the nation established that hospice programs providing a defined set of rewards could provide care that both satisfied patients and their family members and preserved Medicare and Medicaid dollars. An arbitrary number of 6 months’ life expectancy was selected as a qualification, and regulators decided to capitate payments to maximize hospices’ versatility in dispensing needed care.
These demo projects grew out of an international hospice movement that wanted to renovate end-of-life care from what was perceived as a cold, painful, terrifying, medicalized process, with death usually coming to a person alone in a hospital surrounded by machines. Instead, dying was to be a dignified, comfortable process, if possible coming at home, with the patient surrounded by close friends and family members. Of course, these supposed opposite poles were both overstated, but they did echo some truth.
The hospice movement’s historic roots were in religious facilities founded to care for the dying. The modern hospice movement traces back to Dame Cicely Saunders in England and her founding of St. Christopher’s Hospice in the 1960s. Dr. Saunders had originally trained as a social worker.
The movement placed itself in opposition to the medical establishment, and early hospices were based in homelike surroundings a long way from hospitals and nursing homes. Hospices in the United States generally continue to identify with the counterculture and alternative medicine, even when controlled by massive for-profit firms or big teaching hospitals.
It is not surprising that a movement that was originally designed to take control of the dying progression from the doctors (oftentimes explicitly to put it back in the hands of religious figures) should frequently find itself in opposition to formal medicine.
Many hospices assume that medical doctors will want to withdraw from the treatment of the patient when he or she chooses the hospice alternative – and they are often correct. Even when the referring physician chooses to continue to be involved with the patient, hospice nurses often expect to operate with great freedom. In a home setting, nurses ordinarily see a patient much more frequently than the doctor does and normally require consent for a lengthy list of as-needed medications. This allows the hospice nurse to adapt medications quickly in response to changing symptoms rather than track down the primary physician to receive verbal orders as the patient declines.
Hospice social workers and pastoral staff are also accustomed to a community environment where they function without much need to synchronize with a primary physician or other nonhospice specialists. Hospices hold interdisciplinary team meetings and develop care plans in collaboration with their hospice medical directors, but these chart entries aren’t always communicated to the main physician.
At the same time, nursing homes are also expected to produce interdisciplinary care strategies and evaluate them with the attending physician. Nursing home physicians must continue to make all the federally mandated appointments and are expected to continue to supply all necessary primary care to their residents. Most nursing homes’ attending physicians are present in the facility routinely and may be physically present more often than the hospice nurse.
There is, for the nursing home, no requirement that care options at the end of life will be ceded to the hospice team, or that the nursing home doctor will cease to offer care, even if the goals of that care have changed from curative to palliative.
When the hospice staff functions independently, the nursing home staff may feel disrespected or even at risk of regulatory deficiencies. That said, nursing homes and nursing home doctors do need to learn more about the provision of care that addresses symptoms while eradicating unnecessary screening and inappropriate medicines. The nursing home medical director and the hospice medical director should help with this process.
No Wrong Answer?
Hospices legitimately assert competence in the care of the dying. Nursing homes legitimately claim expertise in the care of the aging population. Who is the expert in the care of patients who are both elderly and succumbing? Before turf battles break out, both staffs have to be open to the expertise and knowledge of the other. Nurses who have provided loving care of a resident for numerous years must be open to suggestions from "outsiders" when that resident reaches the last six months of life.
At the same time, hospice nurses need to respect the geriatric expertise of the nursing home staff and their knowledge of the resident and the family members that has developed over years of providing care. AMDA’s 2007 "White Paper on Palliative Care and Hospice in Long Term Care" (www. amda. com/governance/whitepapers/palliative_care. cfm) recommends a formal practice to synchronize the two strategies of care. I would propose going further than this to a shared plan created in a meeting of the teams. Coordinated care of the resident necessitates that every person be virtually on the same page.
Many hospices assign their care teams by geographic areas. The staff traveling to your nursing home may also be seeing terminally ill patients living in neighborhoods near your facility. While this saves travel time, it often means that the hospice group has very little familiarity with nursing home care, its regulations, or the resources available there. This, in turn, may lead to care plans that are unneeded or improper. For instance, a lot of hospices typically require that doctors order their standard list of as-needed medications, including many potent anticholinergics and sedatives that are generally unacceptable for the elderly and could represent harmful polypharmacy.
In my experience, hospices with a staff that specializes in the care of nursing home residents, regardless of which home that they may be in, are significantly more effective in communicating patient requirements to the nursing facility personnel. If the hospice’s typical patient roster doesn’t afford that possibility, the hospice should consider more formal education, – at least, of the staff assigned to your facility – on concerns of nursing home care and geriatrics.
When I was a hospice medical director, I was shocked by how little training our staff had in dementia care, the identification and management of delirium, and pharmacologic issues in the elderly. At the same time, many nursing homes are hesitant to provide appropriate doses of analgesics to patients with pain or to accept administration schedules that don’t recognize the regarded half-lives of the pain medications being administered.