AS LONG as doctors and patients alike find it difficult to talk about end-of-life issues, patients with terminal illnesses may be denied the kind of death they would prefer. But state and federal health officials can take concrete steps to promote this crucial conversation — and a simple two-page form that’s already in use in Worcester is a case in point.
All too often, patients with terminal illnesses tell family members they don’t want to be hooked up to machines when they are dying. Sometimes, though, relatives are reluctant to carry out wishes that aren’t put in writing. More often, patients don’t explain their wishes to their doctors, who then — in the absence of family members — put the patients on breathing or feeding devices.
This would happen less often if the Massachusetts Department of Public Health were to promote statewide adoption — as a committee of medical and public-policy specialists recommended in a report earlier this month — of a standardized form that helps make patients’ wishes known. The two-page document, which has been tested in a pilot program in the Worcester area, would let patients decide if they wanted to be hooked to machines for feeding, breathing, and kidney function. A health care adviser would sign the form, indicating that he or she had gone over the options with the patient.
The Worcester pilot program found ready acceptance of the form, but doctors reported that they often lacked the time to complete both sides. That speaks to the time constraints on doctors. But it’s crucial that some health provider whom the patient trusts explains the “medical orders for life-sustaining treatment’’ in clear terms.
And it’s entirely appropriate that doctors be eligible for reimbursement by Medicare and other insurers if they take the time to have a detailed conversation with terminally ill patients. Earlier this year, the Obama administration proposed just that, but soon retreated for fear of being unfairly accused of convening “death panels.’’ It should reconsider; doing so would send doctors a message that eliciting patients’ wishes should be a standard practice.
On their own, the Worcester forms will help to some degree — by offering an impetus and a structure for the the end-of-life care discussions that take place much too infrequently between patients and their doctors. Also helpful is the state advisory committee’s recommendation that a broad range of health professionals be trained for such discussions. But at some point, US officials must stop letting a Sarah Palin sound bite influence whether terminally ill patients get a say in their own care.