Will end-of-life policy change?

While the high-profile end-of-life case involving Terri Schiavo attracted considerable public and official attention in the first months of this year, and in fact over several years, experts say it may not be enough to bring about needed changes in public policy.

“Regrettably, there hasn’t been a lot of progress since the late 1990s,” medical ethicist Joseph Fins tells State Health Watch. “There’s been a cultural backlash against people’s right to articulate their purpose and preferences.”

Mr. Fins, chief of the division of medical ethics at Weill Medical College of Cornell University and director of medical ethics at New York-Presbyterian Weill Cornell Medical Center, says Congress’ intervention in the Schiavo case was “an erosive act” in terms of the right of people to make choices about the care they do or do not want to receive at the end of life.

Public policy issues still to be resolved include development of a continuum of care, encouraging people to make their wishes about end-of-life care known, and appropriate funding for end-of-life care.

In the 1990s, Mr. Fins tells State Health Watch, many foundations were interested in the issue and funded workshops and presentations at which many of the questions being posed today were raised. But the effort never made it to mature program status within the medical and health care communities, he says, and thus much work remains to be done.

Creating a continuum of care

At forums in the 1990s, Mr. Fins spoke of the need to develop a continuum of care involving palliative care, long-term care, acute care, and preventive care. “My goal as a physician would be to try to avoid the last hospital admission, the terminal admission, when the patient dies.

“And there has been some pioneering work done with palliative care units and palliative care services to identify patients a little bit upstream so they get to die at home rather than in the hospital.

“But all the palliative care units that I know of and palliative care services that I know of are so highly leveraged with philanthropic support that they’re not really sustainable without a revenue stream from the federal government. . . . Every hospital that we know of has an intensive care unit. And that’s the standard of care. Every hospital also should have some sort of palliative care service or palliative care unit. That should be the standard of care. And I think if we looked at it in the context of a global budget downstream, and not in silos, we would see that it will decrease aggregate spending,” he continues.

Even in 2005, Mr. Fins tells State Health Watch, palliative care remains outside the mainstream of U.S. medical practice and probably will remain that way until policy-makers start to give incentives to graduate medical education in support of a palliative care context. “It’s an orphan topic. It should be everywhere but it may be nowhere.”

National Hospice and Palliative Care Organization (NHPCO) CEO Donald Schumacher tells State Health Watch there has been no more interesting time for those working in hospice and palliative care than the last four or five years.

“The Schiavo situation raised consumer interest in deciding what they want [for end-of-life care],” he notes. “One evidence of the increased interest is the number of people who are downloading advance directive materials from the NHPCO web site. There is pressure on consumers to know what their options are and what they want.”

Commercial coverage?

Mr. Schumacher also says he is seeing more commercial insurers covering hospice and palliative care. “There’s still not much change at the federal level,” he points out, “although Medicare remains very supportive.”

He says that a study being conducted at Duke University that should be released in the next few months is expected to show that hospice care is a very comprehensive package of services and saves Medicare a lot of money. An issue that Mr. Schumacher had raised during talks in the 1990s was the opposition of some physicians to hospice and palliative care because it could reduce their income from the services they provide.

He says that today more patients are asking physicians for appropriate referrals for the level and type of care they want.

“We find that it’s not that the doctors don’t want to refer but that it can be hard to have that conversation,” he tells State Health Watch.

He also had expressed a need to expand end-of-life care planning to include children, and says that a variety of organizations have attempted to provide concurrent therapy in which end-of-life care is provided simultaneously with aggressive treatment.

“We’ve met with some success,” he says, “and Congress has funded some demonstrations. But there hasn’t been enough of a push to remove restrictions on the current funding streams.”

Clearly, funding of end-of-life care remains a major issue. One of the complaints some raised about Congress’ intervention in the Schiavo case was that many of the lawmakers who wanted steps taken to ensure that Ms. Schiavo remained on a feeding tube were the same lawmakers who argued for significant cuts in Medicaid.

“At every opportunity, [House Majority Leader] Tom DeLay has sanctimoniously proclaimed his concern for the well-being of Terri Schiavo, saying he is only trying to ensure she has the chance ‘we all deserve,’” the Center for American Progress said at the height of the emotional debate.

But DeLay also “marshaled a budget resolution through the House of Representatives that would cut funding for Medicaid by at least $15 billion, threatening the quality of care for people like Terri Schiavo,” the Center pointed out.

Patient care at the Florida hospice where Schiavo lived averaged $80,000 a year, according to media reports, but for several years the hospice company absorbed that cost.

Medicaid covered her other medical costs, however, including prescription drugs. U.S. Rep. Debbie Wasserman (D-FL) said Medicaid’s share of Schiavo’s care was “a big chunk. . . . Gov. Bush and President Bush are both professing deep concern for the rights of one disabled person, yet their rhetoric doesn’t match their actions.”

Florida’s Medicaid budget is about $14 billion, with the state covering about 41%. Florida receives $1.44 in federal funds for every $1 it spends. Gov. Jeb Bush has proposed limiting Medicaid spending and essentially giving beneficiaries a voucher to use in shopping for a health plan. Advocates for the poor and disabled have said the approach would leave the most vulnerable without coverage.

In Washington, DC, House Republicans approved a budget resolution calling for more than $15 billion in Medicaid cuts over five years.

Senators balked at a similar approach, and the two chambers will have to work to resolve their differences. Families USA executive director Ron Pollack said there were ironies in a situation in which congressional leaders were trying to keep Terri Schiavo alive at the same time they were voting to cut the Medicaid program that keeps millions of people alive.

Mr. Fins says it’s important that policy-makers look at preserving the right to die while still affirming the right to care for those who have a credible possibility of recovery. “The first step in making these cases instructive is to engage in diagnostic discernment in which we truly assess a patient’s status,” he says. “There can be different views of what to do, but the first step is to get a good diagnosis. The diagnosis should not be a moral choice. It is what it is.”

Americans are influenced by accurate information, Mr. Fins says. There is ample literature available showing that when people are given accurate information about their status they will make appropriate choices.

Policy changes are likely to come in the future, he says, because today’s baby boomers will not be willing to die as their parents did. But he argues that funding should be made available so that all patients can make appropriate choices, not just those who have sufficient resources of their own.

Even though we’re facing massive budget deficits, he says, some capital expenditure is needed to improve end-of-life care. “I’m concerned that we could have further stratification,” Mr. Fins tells State Health Watch. “Those who are well accumulate more resources, but the poor and the sick don’t have resources.”

He says that while it would be important to build an infrastructure for end-of-life care soon, he doesn’t see it happening in the current political climate. “People talk about a culture of life, but not a culture of care,” he says. “I’m not optimistic about what’s going on right now. There’s a sea change in our overall politics, with attention going to laws that restrict our personal choices. They’re looking to score political points but not improve the quality of life.”

[Contact Mr. Fins at (212) 746-9663 and Mr. Schumacher at (703) 837-1500.]