ANN ARBOR, Mich. - It's a bitter battle that's fought every day in hospitals around the world, as physicians clash with the distraught relatives of dying patients about how to treat - or not treat - those who can't decide for themselves.
For family members who are about to lose a loved one, and for doctors who are about to lose a patient, the disputes often make a difficult time even worse. They can even pit family members against family members, tearing them apart when they should be coming together.
But it doesn't have to be this way, says a team of physicians from the University of Michigan Health System and the University of Pittsburgh. In a paper in this week's issue of the Journal of the American Medical Association, they propose a "prescription" for doctors to follow when their medical opinions differ from family wishes. They also hope that patients and their relatives will take note and use their recommendations to heal divides both before and after they develop.
"Ideally, patients make their own decisions about end-of-life care. When patients can't do this because of illness, doctors turn to family members, and there are a number of reasons why conflicts develop between them," says medical ethicist Susan Dorr Goold, M.D., M.H.S.A., the paper's lead author and assistant professor of internal medicine in the U-M Medical School. "We believe that many of these problems can be avoided or resolved if physicians, and even patients and family members, try to understand some of the underlying causes for disagreement."
Adds Goold's co-author, U-M internist and geriatrician Brent Williams, M.D.: "Often, doctors communicate with families in biomedical terms that ignore psychological, social and interpersonal issues. Yet these types of issues are often the root cause of seeming disagreements about how best to care for dying or gravely ill patients. In the article, we hope to give doctors a road map to help them identify and address the types of non-medical issues that often underlie conflicts with families regarding the care of the very ill."
That's why Goold, Williams and others train U-M medical residents in end-of-life care through the Graduate Medical Education in Ethics Program that she co-directs. And, the JAMA paper is being used by the American Medical Association as the basis for its national physician education effort on end-of-life care.
Good says that most commonly, conflict stems from a basic difference of understanding about the patient's condition. In short, doctors and families make a different "diagnosis."
"Medicine is hard to understand, even for doctors. Prognoses are not certain, and dealing with severe illness and death is hard for families especially but for doctors too," she explains. "Families are often grieving, and can be 'in denial' about the severity of the patient's condition. Meanwhile, doctors may feel bad about not being able to 'save' the patient, and can be under pressure to move things along quickly so that hospital resources, intensive care beds and other health care resources are used for those who will benefit the most."
When terminally ill patients haven't made their wishes clear to family members before becoming unable to make their own medical decisions, Goold says, there may be disagreement about what the patient would want to do, even if there is agreement about the condition or prognosis.
"Family members are imperfect spokespersons for our wants and needs," she explains. "Doctors may be uncomfortable taking irreversible steps that will result in a patient's death, or continuing treatment they consider burdensome to the patient, unless they are reasonably sure that the patient would want it done."
Advance directives, like living wills and durable powers of attorney for health care, can help, Goold says, but don't completely eliminate the problem. "Most of the time they are not available anyway," she adds.
For doctors, then, Goold and her colleagues prescribe a healthy dose of putting themselves in family members' shoes, and a regimen of remembering the human side of medical care.
"I think most doctors who face these situations do act out of real ethical concern that they 'do the right thing,'" she says. "But I also think that doctors have not been very well trained in the kinds of ethical problem-solving and communication skills needed in these emotionally and interpersonally difficult situations."
Without such training or perspective, Goold says, doctors may not realize or take into account some of the social factors affecting family members as they grapple with their loved one's care choices. For example, they may lack adequate insurance coverage for certain procedures, or may be dealing with sibling rivalries or grudges inside the family.
Patients and their families may even hold overblown expectations - driven by the sometimes-heroic portrayal of last-ditch medical care in television shows and movies - about the power of medicine to help dying patients. Even something as simple as the number or timing of visiting hours allowed each day can also influence these situations, giving family members an unrealistic picture of how their loved one is doing in the hours when they aren't visiting.
Complicating matters, Goold says, is the new climate in which doctors are practicing medicine. Even as they are allowed fewer minutes to talk with family members, they are being asked to see more and sicker patients whose treatment options may be severely limited by insurance policies, and to use technological tools that may keep patients - and families' hope - alive but not offer a chance for recovery. Also, patients with several major health conditions may have multiple doctors assigned to them, but no one "spokesperson" doctor to interact with the family.
In all, Goold and her colleagues conclude, doctors need to take a step back from any disagreements they have with family members of dying patients. This will allow them to see the "big picture" of the family's situation, and find ways to meet in the middle about important health care decisions. Families can do the same, by trying to understand the perspective of the doctor who brings his or her own emotional and professional baggage to the dialogue.
The paper's third author , Bob Arnold, M.D., of the University of Pittsburgh's Section of Palliative and Medical Ethics and its Center for Bioethics and Health Law, is an expert in palliative care and the ethics of end-of-life decisions.