PDIA Memo to the MediaEconomic Barriers to Palliative Care
Any discussion of palliative care is incomplete without considering the economic barriers preventing terminally ill patients from receiving such care in the United States.
Most countries with well-developed palliative care, such as Great Britain, Australia and Canada, have national health care systems that guarantee all residents access to comprehensive health care services. In these systems, palliative care is part of the continuum of care provided throughout the lifespan rather than a set of segregated services that may or may not be available.
The United States stands alone among industrialized countries in its lack of a tax-supported, universal health care system, its patchwork assemblage of palliative care/hospice benefits, and its treatment of essential health care services as "entitlements."
For example, older Americans enrolled in Medicare Part A are entitled to hospice care. Although Medicare's hospice benefit was implemented almost 20 years ago, it has not been widely known nor utilized. In recent years, advocates for older Americans have been promoting the Medicare hospice benefit because it covers more services for terminally ill patients at home than does the home health benefit. Indeed, Medicare pays for approximately three-quarters of hospice care in this country.
Still, an eligibility barrier stands between a patient and hospice careÑthe requirement that a physician must declare in writing that the patient will live less than six months. In other developed countries doctors can usually initiate palliative care services at their own discretion. In the United States, because patients may view a six-month prognosis as a death sentence, physicians and nurses often feel that if they suggest hospice they will be robbing a patient of "hope." Many seriously ill patients who are unwilling to place a time limit on their lives may not be open to even discussing the hospice option.
Physicians may discourage hospice or delay referral for other reasons. A physician who regards death as a professional failure may be reluctant to accept the fact that a patient is dying. A physician may not want to share control of a patient's care with a palliative care team or with hospice program nurses. Financial self-interest might also play a role in a physician's decisions. Also, since it is impossible to know how long a patient will live, especially older patients with illnesses other than cancer, physicians may resist having to "play God" by certifying a less than six-month life expectancy and terminating curative treatment.
These attitudes are confirmed in a number of research studies which show that physicians, even oncologists, either don't refer at all or postpone referring terminally ill patients to hospice programs until very late in the illness. Hospice nurses and physicians say that at least three months of palliative services are usually needed to make the patient comfortable and to ease the dying process. One study, however, found that the average patient entered hospice with only a little more than a month to live, and one in six hospice patients died within a week of being referred to the program.
Today, the disincentive to refer is increasing. Medicare, in an aggressive cost-cutting mode, warns that it will investigate physicians who refer patients for hospice benefits prematurely, and may charge them with defrauding the government.
This pattern of delayed referral does more than deprive individuals of palliative care-it jeopardizes hospice programs themselves. To be financially viable, hospice programs, which receive per diem reimbursements, must be able to balance out the high initial costs of services to new patients with the lower costs of maintaining stabilized patients. That can only occur if patients stay in the program a number of months. If patients are referred only at the end of life when a high level of services is again required, hospice organizations cannot possibly be adequately compensated. A number of well regarded not-for-profit hospice programs have either shut down, or may soon do so, because of late referrals.
Despite the complexity of Medicare provisions, they are more codified than those of other reimbursers. Medicaid, the health care program for low-income Americans, for example, does not cover hospice care in all of the states. HMOs and other insurance programs may-or may not-reimburse for hospice care. An insurer may reimburse for hospice care on a fee-for-service basis and may be reluctant to pay for anything but narrowly defined comfort care. Other treatments for physical distress such as radiation or antibiotics, or visits from a social worker or chaplain to address the patient's and family's emotional and spiritual needs, may be "disallowed." Similarly, despite growing hospital interest in palliative care services, very few actually offer such services. One barrier is a general administrative belief that palliative care will be a drain on hospital resources. The clinicians pioneering such services have found ways to support them financially. However, direct reimbursement for end-of-life care would be likely to make these services more readily available to patients.
The shifting sands of today's market-driven health care threaten to weaken rather than improve end-of-life care. Today's "dehospitalization" trend sends very sick patients to their homes or to nursing homes for terminal care. While many seriously ill people prefer to be at home, Medicare's home care services were cut by 30 percent in the Balanced Budget Act of l997. This severely constricts the availability of much-needed home care nursing. Moreover, it creates added stress for home-care nurses who have little time to both work with patients and instruct family members who shoulder the bulk of the care.
Similarly, to maintain their profitability, many nursing homes are pushing toward greater "efficiency" in providing services, which raises the question of what resources will be dedicated to staff training and delivery of palliative services.
High quality end-of-life care depends upon an integrated network of in-hospital, out-patient, home, and nursing home services. Because the barriers to providing comprehensive palliative care in this country are multifaceted, several issues require further exploration. These include:
1) How does the six-month eligibility requirement affect patient access to end-of-life care?
2) What is the impact of delayed referrals on hospice services?
3) Are there cost incentives within HMOs to rush patients receiving expensive curative treatments into less expensive hospice programs?
4) How does "dehospitalization" impact the ability of medical centers to provide cost-effective palliative care services?
5) Will capitated managed care, under which physician groups are paid a lump sum to care for each enrollee, undermine the viability of hospital and home palliative care services? Will capitation shift more patient care to family members?
6) Where are the resources likely to come from to provide widespread, humane end-of-life care?
