The great health reform debate over alleged death panels has fizzled. Lawmakers guaranteed that by stripping provisions supporting end-of-life planning from legislation enacted.
What remains is the status quo. It's left to individuals to decide if they want to think about their medical destiny at life's end, talk to their families and make their wishes known — as it has always been.
Some doctors initiate these discussions before people are at death's door, but most don't. Despite intensive educational efforts, only 30 percent of adults have prepared an advance directive: a living will or a durable power of health care attorney appointing a surrogate decision-maker. To many experts, this indicates that current approaches to advance care planning aren't working and that a fresh approach is needed.
In particular, experts criticize living wills that lay out the kind of medical care people might want in the future under various circumstances.
The documents are overly vague, often not available when needed most, and frequently difficult for medical providers to interpret, they say.
"Living wills have failed to achieve their promise," says Dr. Muriel Gillick, a specialist in geriatrics and palliative care at Harvard Vanguard Medical Associates in Massachusetts.
What's needed instead are better conversations between doctors and patients, and patients and their families, she says. For their part, doctors should clarify patients' current medical status, how it's likely to change, what medical interventions may be necessary, and what benefits and side effects can be expected.
Patients, also, need to take a different approach. While many ask their doctors "is my condition curable?" or "how long do I have?" few think to ask "what level of disability lies ahead and what do I need to do to prepare for that," said Dr. Maria Silveira, an assistant professor of general medicine at the University of Michigan.
These conversations necessarily involve ambiguity, uncertainty and complexity, which often characterize medical care at the end of life, according to Dr. Terri Fried, a professor of geriatric medicine at Yale School of Medicine. "So much of what we confront are gray areas, which living wills don't address," she says.
Take someone with moderately advanced dementia who develops pneumonia after food goes down his windpipe. What if his living will says "I never want to be on a respirator" but a brief period on the breathing machine might be helpful while the pneumonia is being treated? Fried asks. If the intervention wins another year or two of life, is it worth it? What if repeated bouts of pneumonia are likely, given the man's deteriorating condition?
"We need to move away from a legal model of filling out forms to a social model of having conversations about values, preferences and goals of care at the end of life," says John Carney, a vice president at the Center for Practical Bioethics in Kansas City.
Other experts agree, but say it doesn't have to be an either-or proposition.
In her Michigan practice, Silveira initiates discussions with patients when they have a sudden deterioration in health: for instance, when someone with emphysema becomes dependent full time on oxygen or is being hospitalized more frequently.
If a person has a living will, that can become part of the conversation, Silveira says. "Anything that helps me understand how a patient thinks about these issues is helpful," she says. Silveira recently published research in the New England Journal of Medicine showing that seniors with living wills usually get medical care consistent with their stated preferences.
Instead of saying advance care planning doesn't work, medical experts should be teaching doctors how to have these conversations with patients, says Dr. Linda Emanuel, professor of geriatric medicine at Northwestern University's Feinberg School of Medicine.
"The debate should be over the best way to honor the wishes of the individual, whatever those might be," Emanuel says. "In that light, this isn't a polarizing issue at all. It's something we can all believe in."
Some help starting the conversation
How do I talk to a family member about my end-of-life wishes?
What if my doctor has never brought this topic up?
What do I do when my father or mother is failing but refuses to talk about an advancing illness?
It's not easy, but here are several guides to help you get started.
Keep in mind, these discussions aren't a one-time thing. Any time your health changes significantly, you may want to revisit end-of-life planning with family members and your physician.
It's OK to change your mind: Just be sure to communicate your change of heart to those close to you.
Caring Conversations. Prepared by the Center for Practical Bioethics. Go to practicalbioethics.org.
Finding Your Way. Prepared by the Center for Healthcare Decisions. Go to chcd.org.
Caring Connections. Prepared by the National Hospice and Palliative Care Organization. Available at caringinfo.org/ PlanningAhead.
Five Wishes: Next Steps. Prepared by Aging with Dignity. Available for $5 at agingwithdignity.org.
The Medical Directive. Originally published in the Journal of the American Medical Association. Available for $15 (4 copies) at http://www.medicaldirective.org.
End of Life: Helping with Comfort and Care. Prepared by the National Institute on Aging, National Institutes of Health and U.S. Department of Health and Human Services. Available at http://www.nia.nih.gov/ healthinformation/ publications/endoflife/.Copyright © 2014, Los Angeles Times