We won't have to live with George W. Bush for much longer. But now, it appears, we can't die with him, either--at least, not with any comfort or respect. Included among the many parting shots from the lame-duck Bush administration are two actions that will add to the suffering of the terminally ill.
The first of these actions makes it easier for health care workers to ignore or override the wishes of dying patients. The second threatens the availability of hospice care--the one setting in which such patients can be sure that their choices will be respected and their pain subdued.
On December 19, the administration issued what is being called the "right of conscience" rule for health care workers. As the Washington Post describes it:
The far-reaching regulation cuts off federal funding for any state or local government, hospital, health plan, clinic or other entity that does not accommodate doctors, nurses, pharmacists and other employees who refuse to participate in care they find ethically, morally or religiously objectionable. It was sought by conservative groups, abortion opponents and others to safeguard workers from being fired, disciplined or penalized in other ways.
But women's health advocates, family planning proponents, abortion rights activists and some members of Congress condemned the regulation, saying it will be a major obstacle to providing many health services, including abortion, family planning, infertility treatment, and end-of-life care, as well as possibly a wide range of scientific research.
Such rules are implemented in 30 days, which means this one will go into effect on the eve of the inauguration. As the Post reports: "The 'right of conscience' rule could become one of the first contentious tests for the Obama administration, which could seek to reverse the rule either by initiating a lengthy new rulemaking process or by supporting legislation already pending in Congress."
While opposition to the rule comes primarily from supporters of reproductive rights, the organization Compassion and Choices points out that it also has serious implications for "end-of-life care, especially the palliative care measures that rescue patients from unbearable agony. This ill-conceived rule will surely obstruct and delay good care in many instances, increasing the suffering of dying patients and their loved ones." On the basis of "conscience," the group warns, health care workers could refuse to disconnect life support, or could withhold medication for "palliative sedation," where patients are rendered unconscious if it is the only way to control pain.
One place where the dying might escape such treatment is in hospice care. But another measure, tucked away in Bush's budget for FY 2009, cuts federal Medicare reimbursement rates to hospices, which are largely (83 percent) financed by Medicare. The online magazine Obit summarized the impact of the cuts, which went into effect on October 1, and could add up to more than $2 billion over five years:
It is estimated that this will result in hospice staffing cutsdoctors, nurses, social workers, bereavement counselors, and eventually hospice services. And these reductions will affect the people least capable of fighting back.
Or, as Don Schumacher, president of the National Hospice and Palliative Care Organization (which is, among other things, the lobbying group for hospices), puts it: "That $2 billion the government wants to save? They're doing it off the backs of dying people in the United States."
Obit goes on to describe just what it is that's being threatened by the Medicare cuts:
About 1.4 million people receive hospice services these days, meaning more than one third of those who will shortly end up dead: Hospice care is generally only for those within their last six months of life, and its mission is not to prolong existence, but to make those last months bearable and, ideally, pain-free.
In fact, the best and most effective treatments for very bad pain are to be found not at the doctor's office but in hospice in-patient units: There no one is shy about administering morphine or even methadone to the dying. And no one is going to lecture patients on the perils of addiction
Contrary to what most people believe, the majority of the terminally ill never see the inside of a hospice in-patient unit, unless they're in severe pain or have a condition that needs to be stabilized. Most are treated at home by hospice-trained nurses, social workers, and volunteers.
In addition, patients who are denied hospice care are likely to end up in emergency rooms or costly hospital beds, which will increase rather than reduce health care expenditures.
Last year Duke University released a study on hospice cost-effectiveness, which was published in the journal Social Science and Medicine. "We found that hospices reduce Medicare spending by an average of $2,309 per person compared to normal care, which typically includes expensive hospitalizations near death," said Don Taylor, an assistant professor of public policy who was also the primary author of the study.
Taylor added that although the average terminally ill person gets hospice care for only 15 days, it might be better to extend that period. His study "found that patients who use the benefit for the last seven to eight weeks of life maximize cost savings
." They also got "to fully experience the benefits of hospice, such as bereavement counseling, palliative care, and respite for care-givers."
In fact, he concluded, "The hospice benefit appears to be that rare situation where something that improves quality of life also saves money."
The hospice cuts went into effect despite efforts to pass a bipartisan Medicare Hospice Protection Act, and despite a lawsuit by the National Hospice and Palliative Care Organization. In November, the Witchita Eagle was already reporting the impact of federal cuts on that city's hospices.
One--Trinity Hospice--recently closed. One is for sale. Another has had layoffs, and others are finding ways to cut expenses. The biggest pressure, hospice service providers say, is from Oct. 1 cuts in their Medicare reimbursement rates. Nationwide, the cuts have averaged 4 percent.
As fewer hospice beds and home hospice services become available, the repercussions of these cuts will be felt across the aging community, as well as among younger people with cancer, AIDS, and other illnesses. Some of those who might have died in a sympathetic and pain-free setting will end up spending their last moments in the emergency rooms of hospitals. Average waiting times in some ERs are up to 10 hours, and measures to control pain are often inadequateeven if they don't enounter a health care worker whose "conscience" trumps their agony.
As they prioritize their agenda for the new administration, Obama's HHS health care czar Tom Daschle and members of Congress would do well to pay a visit to one of these ERs and spend some time with the suffering and the dying.
A version of this post appears on James Ridgeway's new blog, Unsilent Generation.