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."