While the medical community can do a great deal to improve and extend people's lives, it's still working on effectively addressing the way patients die.
As it stands, there is little federal policy -- and a lot of ethical confusion -- about patients' end-of-life options. Choices run the gamut from palliative care, which focuses on pain management and is most often provided in a hospice, to physician-assisted suicide.
"Our culture doesn't like to acknowledge that people die, and doctors are trained to keep people alive," says Michael Werner, counsel for legislation and policy for the American College of Physicians-American Society of Internal Medicine. "In the time leading up to death, the system spends a lot of money on patients. Still, many die in pain or in a setting they don't like, so there's a clear need for some kind of federal policy."
While hospice care is regulated by Medicare, the general field of end-of-life care has experienced limited federal congressional activity.
The Lethal Drug Abuse Prevention Act, introduced last June by Sen. Don Nickles (R-Okla.) and Rep. Henry Hyde (R-Ill.), would make physicians prescribing pain medication vulnerable to prosecution. The bill would enable the Drug Enforcement Agency to revoke a physician's license to prescribe controlled substances if it could show the doctor prescribed the drugs to help a patient commit suicide.
Katie Gumerson, a staff assistant in Nickles' leadership office, says the bill was drafted because Oregon's assisted suicide law is at odds with the federal Controlled Substances Act. "The aim (of the Lethal Drug Abuse Prevention Act) was to clarify the (federal) Controlled Substances Act so it would apply equally to all 50 states," Gumerson says.
Besides Oregon, which passed its Death With Dignity Act in 1994, most other states still consider physician-assisted suicide a criminal act.
The Lethal Drug Abuse Prevention Act died in the 105th Congress and is expected to be reintroduced in the 106th Congress. "If this legislation had been passed, Oregon (physicians) could still practice assisted suicide; they just could not use controlled substances to do it," Gumerson says.
When the bill was introduced, the ACP-ASIM and 57 healthcare providers and consumer groups got together to oppose it.
"This would hurt pain management and good end-of-life care because it would make physicians reluctant to prescribe controlled substances, since they would be afraid of prosecution," Werner says.
Another hindrance to effective end-of-life care is that not enough doctors are adequately educated about it, says Perry Fine, M.D., national medical directo for Scottsdale, Ariz.-based VistaCare, a hospice services provider with 50 operations in 15 states.
Palliative care "is a large and well-developed discipline, but it's not integrated into the undergraduate or graduate medical curriculum," Fine says.
The American Medical Association hopes to remedy the situation with a program developed by its Institute for Ethics. The AMA held its first of four regional conferences on Educating Physicians in End-of-life Care this past January. The program is supported by a grant from the Robert Wood Johnson Foundation, a Princeton, N.J.-based healthcare philanthropy.
The program's curriculum covers the full range of issues that pertain to end-of-life care, from care planning to breaking bad news to patients and their families. A total of 270 physicians are expected to participate in the four conferences, and as part of their commitment to the program, they agree to take the material back to their community and share it with colleagues.
Fine says research has shown patients want pain and symptom management, and they want to be assured dying won't be inappropriately prolonged. They also want to maintain some measure of control over their care and to make sure they aren't a burden to loved ones.
Palliative care addresses these concerns by focusing on patients and their families rather than the disease. The goal is to provide an environment of comfort and dignity in which the patient has some control over the treatment.
"In acute-care medicine, physicians make very aggressive efforts to change the course of curable or reversible illnesses," says J.R. Williams, M.D., executive vice president and chief patient-care officer at Vitas Healthcare Corp., a Miami-based hospice-care provider that operates 27 programs in seven states.
"Palliative care, however, recognizes that the end point of a clinical illness is going to be the patient's demise and focuses on alleviating symptoms and managing pain rather than reversing the disease."
Williams says hospice is the ideal palliative-care model. It functions on four levels: home care, inpatient care, continuous care (at home, 24 hours a day) and respite care (inpatient care for a short period to give the primary caregiver a break). Historically, cancer and chronic progressive illnesses have fit easily into the hospice model. Hospices provide medical, nursing, psychosocial and spiritual care for patients and their families at each level. Most also offer bereavement care to families for up to a year after a patient's death.
While hospice care seems to address virtually all a dying patient's needs, financial support is a struggle for many hospices and supply of such programs significantly outweighs demand. According to the National Hospice Organization, Arlington, Va., 37% of hospices had operational budgets of less than $500,000 in 1995. And while there are approximately 3,100 hospice programs in the U.S., they serve only one in five people who die every year.
In many cases, terminally ill people don't receive hospice care because they're in acute-care hospitals or long-term-care facilities without hospice programs, according to the NHO.
When patients do access hospice programs, they are actively dying rather than in the earlier stages of terminal illnesses. Medicare guidelines state that hospices should serve people who are not expected to live longer than six months if the disease follows its normal course. But according to the NHO, the median length of stay in 1995 was 29 days.
Williams says one of the main factors influencing shorter length of stay is the tightened regulatory environment. Under Operation Restore Trust, an anti-fraud initiative, auditors target home health agencies, nursing homes and durable medical equipment providers. HHS launched the initiative in 1995 because hospices in Puerto Rico allegedly had been admitting patients who weren't terminally ill. In their audits, investigators reported that 60% to 70% of the charts they reviewed were for patients who weren't eligible for admission. As a result of the initiative, hospices nationwide had to tighten their admission criteria.
"We've done our best to determine guidelines, but nobody has a crystal ball," says Stephen Connor, vice president for research and professional development at the NHO. "There is a population of people who are classified as chronically terminal. Those are patients whose diseases are terminal but don't necessarily fit into the less-than-six-months category. We're asking ourselves how hospice can adapt its structure to serve the needs of those patients."
When hospice is used effectively, he says, it improves prognoses, and patients live longer. Ninety-three percent of admitted patients live longer than six months, he adds.
When patients are admitted in the late stages of terminal illness, hospices find it difficult to provide top-notch care, Vitas' Williams says. "When someone who is actively dying with only a week or two left comes into hospice, the hospice needs to perform crisis management rather than quality end-of-life care. The hospice is unable to deliver the full package of end-of-life care it was designed to deliver," he says.
In addition, he says, national debate about physician-assisted suicide, specifically the activities of Jack Kevorkian, M.D., has brought the wrong kind of attention to end-of-life care.
"This is unfortunate because what really should be happening here is that the healthcare system should be spending its resources facilitating the access of terminally ill patients to hospice care," Williams says. "The country shouldn't allow the physician-assisted suicide debate to obscure the tremendous need for quality end-of-life care."
While he believes the debate on physician-assisted suicide is misguided, Williams does recognize the exposure it gives to the subject of end-of-life care. "Indirectly, the physician-assisted suicide debate has raised the plight of the terminally ill in the consciousness of the American public. . . . But it should focus (instead) on how to increase the utilization of the gold standard of end-of-life care, which I believe to be the hospice system."