Subject of death has lots of life in health care debate

June 7, 2011

As reported by Paul Fanlund in The Capital Times

When you lead an organization that touches nearly one of every two Dane County deaths, you are likely to be part of debates about health care.

Susan Phillips is president and CEO of the state’s largest hospice, the Madison-based nonprofit Agrace HospiceCare., which serves people throughout south-central Wisconsin.

Hospice, of course, aspires to make patients with terminal conditions comfortable in their last days, whether at home or in a place like Agrace HospiceCare’s beautiful center tucked in a woodsy setting off Fish Hatchery Road about three miles south of the Beltline. Agrace HospiceCare assists family caregivers and offers patients pain and symptom management as well as emotional and spiritual support.

Surveys here and nationally suggest people increasingly accept the hospice philosophy for end-of-life care, an approach that eschews futile cures that can be extraordinarily expensive.

Ironically, despite growing awareness of what hospice can accomplish, Phillips says decreases in Medicare reimbursement payments due to national health care reform will hurt her nonprofit hospice and threaten the survival of smaller hospices across the state.

“In the big scheme of things,” harming hospices through lowered reimbursement rates was never a health care reform goal, she says. But it is a possible outcome.       

This comes as a new local telephone survey conducted for her organization showed 92 percent of respondents said if they received a terminal diagnosis they would expect a doctor to include hospice as one of the treatment options. The survey of 500 Dane and Rock County adults was conducted by Chamberlain Research Consultants Inc.

The survey also showed that 91 percent of respondents would prefer to spend the last six months of life with family rather than being treated for an incurable illness in an intensive care facility.

And on the national level, a major survey three months ago found that 93 percent of respondents said decisions about palliative care should be “a top priority for the health care system in this country.”

Sponsored in part by the National Journal magazine, the national survey also found more than 70 percent agreed that it is “more important to enhance the quality of life for seriously ill patients, even if it means a shorter life.”

The key element to the Medicare financing problem, Phillips says, is that the health care law rewards “productivity,” which relates to services performed, as opposed to the “per diem” approach central to hospice care. An additional irony of the possible cuts is that providing compassionate end-of-life hospice care actually saves money by decreasing use of futile treatment.

Phillips says the combination of changes to Medicare reimbursements could mean cuts of more than 14 percent to hospices over the next few years. Her comparatively large organization, with its fundraising ability and economies of scale, would likely fare better than smaller nonprofit hospices in less populated areas, she says.

Phillips has been lobbying Congress on behalf of hospices about these reimbursement rates. She says her nonprofit operates on less than a 3 percent margin. The comparatively recent entry of for-profit hospice businesses has complicated the debate.

But then, when it comes to health care, nothing is simple, or apolitical. Even the language used in the current health care debate is heavily charged.

U.S. Rep. Paul Ryan confronted President Obama at the White House last week for describing Ryan’s Medicare proposal as a voucher program. The Janesville Republican wants to dismantle the current Medicare insurance program and instead give older Americans a fixed amount of money to shop for private insurance. It’s an approach that looks, well, pretty much like a voucher. The fact that Ryan’s approach is wildly unpopular across the country may contribute to his pique with Obama.

So, if “voucher” is a loaded term, are there other examples of distorted language around health care? Oh yes, remember “death panels?”

The term “death panels” was concocted in 2009 by Sarah Palin, the former Alaska governor and Republican vice presidential candidate. She claimed that Obama’s health care legislation would require Americans “to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide, based on a subjective judgment of their level of productivity in society, whether they are worthy of health care.”

The law actually only spoke of reimbursing doctors for counseling patients on end-of-life issues, but that did not stop Palin’s fiction from being trumpeted as fact by commentators Limbaugh, Beck and Hannity. The furor helped kill the end-of-life counseling provision.

And, sadly, like so many things in politics, truth sometimes matters less than repetition. In the National Journal survey, some 23 percent of respondents indicated they believed — falsely — that Obama’s health care law allows the government to make end-of-life decisions for seniors. Another 36 percent said they did not know.

PolitiFact.com named Palin’s invention of the death panel term the “lie of the year,” while FactCheck.org called it one of the year’s “whoppers,” and the American Dialect Society declared “death panel” as its single most outrageous wording for 2009.

Palin’s distortion was particularly unfortunate because it made it harder to really talk about the always difficult subject of death.

Dan Chin, Agrace HospiceCare’s vice president of public affairs, calls death the “last great taboo in American culture.” He says sexual references are embraced in the media today more readily than references surrounding death. When death is depicted on television, “it is still portrayed as a dark and scary process,” Chin says, “but it doesn’t have to be.”

For most of us, death remains a tough subject to discuss. In addition to fighting for hospice funding, Phillips and her colleagues are trying to encourage health care providers to more readily mention hospice to patients.

They distributed their survey results to area physicians and other health care providers to show them their patients expect to hear about hospice as an option. “The survey absolutely substantiates the research nationally, that people want physicians to tell them all of the options,” Phillips says.

Her organization is distributing a new pocket-sized booklet called “The Agrace HospiceCare conversation … a pocket guide for clinicians.” It is designed to help health care providers know “how to have the conversation,” Phillips says. And for patients, Agrace HospiceCare has a five-question business card for use when they receive a “life-limiting” diagnosis. The card poses thoughtful questions about the merits of treatment.

The process of trying to engage health care providers in hospice, Phillips says, has been enlightening to her staff.

“We really do not have the hardest job here at hospice,” she says. “Everybody thinks that, because we are caring for people who are dying. The people who have the hardest jobs are the people who have to (first) mention hospice,” Phillips says. “It’s the person who has to share with the patient that there is not a treatment that will cure their illness.”

From out here, all these jobs sound pretty hard.