Length-of-stay problems lead to quest for survival
As hospice providers continue to struggle with declining lengths of stay, little has been done to provide relief for hospices that are experiencing short patient stays. As hospices struggle with this dilemma, the question is whether they should begin taking steps of their own before cost-prohibitive stays drive them out of business.
The problem hospices face is clear. Length of stays have declined to a point where many hospices find the two most costly periods of patient care — admission and the patient’s final days — are overlapping, putting a strain of the per-diem payments made by government health programs.
To date, much has been said about the issue, and national organizations have made it a priority as they lobby lawmakers for relief from restrictive regulations. The National Hospice Organization has set its sights on eliminating the "six-months-or-less" requirement for hospice admission, which many blame for the length-of-stay problems.
The way one expert sees it, hospices are also victims of their own success in increasing admissions, and their inability to convince referral sources and the public that hospice care should begin months before death, rather than days.
"There is a diminished ability to hang onto long-term patients," says Peter Moberg-Sarver, MSW, president of the Hospice Central New York and president and chief executive officer of the Upstate NY Hospice Alliance, both based in Syracuse. "Patient stays of seven days or less have been increasing."
The Hospice of Central New York in Syracuse has seen its admissions grow from 70 in 1985 to more than 900 a year. But that growth has included a large percentage of patients who are admitted days away from death.
Like other hospices, Hospice experiencing the same length of stay challenges seen by others. "While the number of admissions keeps going up and up, most of the increase has been people whose death is imminent," Moberg-Sarver says. "Too many people think we’re here to just help people die. What we really do best is help people live their final months as fully as possible."
The increase in shorter stay patients did not happen overnight, and Moberg-Sarver acknowledges that this issue has persisted for years. Other than industrywide efforts, individual hospices have been unable to adapt to a trend they have watched unfold for years. Should hospices begin to accept their role as caretakers of the dying in their last days and adapt their services to efficiently provide care?
From Moberg-Sarver’s point of view, the short answer is "no." "It can’t be done," he answers. He advocates that hospices continue their efforts to educate referral sources and influence public opinion, while national trade organizations continue their efforts to bring about regulatory change.
"Shorter stays are the inevitable function of the six-months-or-less requirement," Moberg says.
Since July 1998, the NHO has been making an organized effort to bring about regulatory changes. On the top of the priority list, is the six months or less to live as a requirement for hospice admission.
Because a six-months-to-live diagnosis is difficult for many physicians to make, and oftentimes families resist the notion that curative options have been used up, patients are not admitted to hospice until the last few days of life.
The NHO’s Committee on the Medicare Hospice Benefit and End of Life Care in its 1998 report on the industry’s future in end-of-life care cited the six month requirement as the biggest problem hospices face. Because of the lack of scientific data in predicting whether a patient has six months or slightly less to live, the committee wants to see the requirement removed via legislative action or research initiatives to test alternate eligibility criteria.
In the meantime, however, Moberg-Sarver says hospices need to keep up marketing efforts to help the public understand the true hospice mission and work with referral sources to educate them on making timely referrals. For example, the Hospice of Central NY conducts programs for referring physicians, nurse practitioners, hospitals, long-term care facilities, and home care agencies.
Waiting for change not best for some
But not everyone believes that waiting for industry changes is the way to go. In July, Hospice Management Advisor detailed how Hospice Care Inc. in Stoneham, MA, partnered with an area home health agency to promote earlier referrals.
"If we wait until HCFA [Health Care Financing Administration] to make changes, all of us may not be here," says Kate Colburn, MA, executive director of Hospice Care, a home hospice provider.
With its median length of stay at 14 days and its average length of stay 41 days, Hospice Care’s dwindling length of stay made it imperative that the organization take matters into its own hands.
It is Colburn’s belief that Hospice Care’s program will increase its median length of stay to 20 days, which would take a tremendous burden off the organization’s reliance on donated money.
Hospice Care fashioned an arrangement with a local home care provider that calls for the home care agency to subcontract a hospice nurse to provide home health care to the agency’s patients on a per visit basis. The hospice/home care nurse — aside from delivering visits and providing palliative care services on behalf of the home care agency — can help educate patients and their families on the benefits of hospice. The process begins at the assessment stage during home care admission. Patients admitted with potentially terminal illnesses are cared for by Hospice Care nurses.
By using a hospice nurse in a home care setting, the patient is given the opportunity to forge a relationship with a nurse that could potentially carry into the hospice setting, says Colburn.
One of the struggles hospices face in order to increase lengths of stay is an unwillingness to move into another health care segment out of fear of losing the special relationship the patient has forged with members of the home care team, Colburn says. The prospect of a new care discipline and a new set of caregivers, no matter how comprehensive or compassionate, can be unsettling to those who have come to rely upon the care and kindness of the home health providers.
"Patients don’t want to lose the two people that they have developed a close relationship with," Colburn said in the July issue of HMA. "Once they move into hospice, they continue their relationship with their home care team and gain new members through the interdisciplinary team, each of which sees the patient for assessment."
To further promote the continuity of health care providers, Hospice Care will also subcontract the home health aide from the home care agency to provide services after the patient is referred to hospice.
"This way, they don’t lose the two people that they have developed a close relationship with; and when they re admitted to hospice, they gain the additional members of the hospice [interdisciplinary] team," said Colburn.
While the success of the program is yet to be determined (Hospice Care is collecting data to measure length of stay changes), Colburn says the program is an example of a hospice finding a way within its own mission to access patients earlier.
Colburn suggests hospices think beyond Medicare and find new ways to access patients. "We need to look outside of Medicare conditions of participation, but along the mission of hospice. Managed care offers opportunity to access patients with life threatening illness."
Profiles of caregivers
Seven out of 10 caregivers caring for terminally ill loved ones are women tending to their husbands, siblings, or children, and many are doing it without the help of paid caregivers.
The typical caregiver is a female family member who alone is responsible for the tasks of homemaking, transportation, nursing, and personal care needs, according to a groundbreaking study published in the Sept. 22 issue of The New England Journal of Medicine.
The study found that 96% of primary caregivers are family members: 72% of them women. Researchers also found that fewer than 20% of patients received paid professional caregivers in addition to family assistance, and that the proportion of assistance provided by non-family volunteers was negligible.
For terminally ill patients without families to care for them, more than 15% of them rely almost entirely on paid assistance to meet their caregiving needs. According study data, these patients tend to be unmarried, poor, and elderly. Compared to other patients, they are also significantly more likely to have unmet care needs.
Results of the study point to the great need for caregiver support and the need for professional caregivers for those without families. The study’s findings shed new light on patterns and disparities in meeting the caregiving needs of people with terminal illnesses, and raises questions about the future of caregiving for these patients.
About 1,000 terminally ill adults, 90% of them living at home, and their primary caregivers were interviewed between March 1996 and March 1997. Researchers chose six randomly selected cities — Birmingham, AL; Brooklyn, NY; Mesa County, CO; St. Louis; Tucson, AZ; and Worcester, MA. The most common illnesses among those surveyed were cancer, heart disease, and chronic obstructive pulmonary disease. Patients with HIV/AIDS were excluded from the study.
The study was the first to examine caregiving needs among dying patients with a range of illnesses, and is one of the few studies on caregiving to be conducted in more than 10 years. The study was also able to measure the impact of recent efforts to reduce hospitalizations and shorten hospital stays.
"What’s quite clear from the data is that families bear a huge responsibility in caring for people who are dying," says lead study investigator Ezekiel J. Emanuel, MD, PhD, chair of the department of bioethics at the National Institutes of Health. "In effect, they have developed into a separate, unpaid service sector, filling a tremendous need that is not falling on the commercial or the pubic health care sector."
Yet because the family unit has changed in the last generation, particularly the higher number of two-income families, single-parent families, and children living distant from their parents, the challenge for caregiving will become greater as America’s population ages and gets sicker.
As a result, Emanuel believes it is likely that an increasing number of terminally ill patients will rely on paid caregiving assistance. "The problem then becomes: Who will pay for these services once family members are no longer available to provide them?" he ponders. "This is an issue that insurers and health care policy makers will have to consider for the baby boom generation."
Women are doubly affected by caregiving needs at the end of life. Nearly three-quarters (72%) of all caregiving responsibilities for terminally ill patients fall on women. Yet when women fall sick with a terminal illness themselves, they must rely on paid help to a significantly greater extent than men. This is true even among women who are married. For instance, 33% of men rely on paid assistance for personal care. Among women, that rate is nearly double (58%).
Volunteer nonfamily assistance in meeting the caregiving needs of terminally ill patients is astonishingly low. Only 4% of patients in the study had primary caregivers who were not family members, and less than 3% of patients needing care reported receiving any volunteer assistance at all.
Patients dying of cancer have fewer caregiving needs, fewer unmet needs, and rely less on paid assistance to meet their caregiving needs than patients with other terminal illnesses, such as heart disease and emphysema. Researchers found that most attention directed toward the terminally ill during the past two decades was focused on cancer patients. As a result, their needs have been better delineated than those of other patients, and programs have been designed to meet those needs. However, such programs may not apply to patients with other terminal illnesses.
African-Americans are less likely to rely on their families, and therefore more likely to require paid services than white and Hispanic patients.
The findings have implications for how the health care industry and government health care programs deal with caregiver needs, Emanuel says. Researchers cited four policy implications from their findings:
1. Efforts to reduce the use of paid caregiving assistance are likely to have an adverse impact on many terminally ill patients. Limits on reimbursement, benefit limits, and other interventions are examples of barriers standing between caregiver services and patients. These policies are likely to hit hardest those patients who are most vulnerable and rely most on paid assistance: women, African-Americans, widows, and older patients.
2. Men, friends, and colleagues need to be more actively engaged in caring for terminally ill patients. Religious, social, and other organizations must become more actively engaged in assisting with the caregiving needs for people who are dying.
3. Policy-makers need to consider the implications of demographic changes on the needs of the terminally ill. Because those changes often result in less stable family structures, future dying patients may increasingly rely on paid caregiving assistance. This will place additional demands on home care services and increase health care costs.
4. Additional research on the caregiving needs of terminally ill, noncancer patients is needed. Data from the study suggest that those patients have greater unmet needs than cancer patients. More data are required to develop appropriate care programs for noncancer patients.
"Caregiving is an extremely important issue for women, and will have a strong impact on women’s futures," says Karen Davis, president of the Commonwealth Fund, a New York-based organization dedicated to improving health care services. "The question of public policy to address caregiving needs must be addressed now, while the proportion of elderly people in America is still beginning to grow."
"This study highlights large burdens being borne by unpaid, often untrained family caregivers," says Charles Halpern, president of the Nathan Cummings Foundation, a New York-based organization that focuses on improving care for the dying. "We need to assure that these caregivers are suitably trained and supported. We also need to integrate effective paid caregivers into care for the terminally ill. Since the poor and elderly are among those who rely most on paid caregiving, we must protect policies that help pay for this essential care at the end of life."
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