NEW YORK (Reuters Health) - U.S. laws surrounding advanced planning for end-of-life care set up too many practical roadblocks, according to a report published Monday.
In a study of advance directive laws across all U.S. states, researchers found that the documents used in end-of-life planning were written in legalese that the average American would be hard-pressed to understand.
And most states, the study found, had practical restrictions that could make it difficult for many people to complete an advance directive.
The study comes as Congress debates the future of health care reform, a debate that has included false rumors about “death panels” that would determine which Americans would receive care at the end of life.
Among the most affected by existing laws would be people with limited literacy and those in nursing homes or other institutions who do not have family or friends, the researchers report in the Annals of Internal Medicine.
Advance directives are legal documents that allow people to state their wishes for end-of-life care, in the event they become too sick to make their own medical decisions.
One example is a “living will,” which spells out the types of life-prolonging measures a person does or does not want — whether, for instance, you want to be put on a ventilator if you cannot breathe on your own, or if you want doctors to attempt resuscitation if your heart stops. A 2007 Harris poll found that about two in five Americans have such living wills.
Another type of advance directive is medical power of attorney, where people choose a “proxy” who will make healthcare decisions for them if they cannot do so themselves.
In the U.S., states each have their own laws on advance directives. But a common thread is that the laws set up obstacles that could deter people from end-of-life planning, according to the researchers on the new study, led by Dr. Rebecca L. Sudore of the University of California, San Francisco.
Across states, they found, advance directive documents were written at a reading level above 12th grade.
That’s a problem, the researchers say, given that 40 percent of Americans are at no higher than an 8th grade reading level.
Other obstacles, according to Sudore’s team, include the fact that most states do not allow oral advance directives, and usually require that written documents have witnesses’ signatures, be notarized or both.
For people who are socially isolated, including many elderly adults, those requirements may be too restrictive, the researchers argue.
Another problem for isolated people is that laws ban health providers and social workers from acting as healthcare proxies. But for some patients with terminal illnesses, these may be the only trusted people in their lives.
Among the remedies, according to Sudore’s team, would be for states to allow oral directives, get rid of witness requirements and loosen restrictions on who can become a healthcare proxy.
The researchers also argue that domestic partners and same-sex partners should be given the same legal status as spouses. That is, they should automatically become the “default” healthcare proxy in cases where a person has not chosen one.
Forty U.S. states do not allow that.
Dr. Arthur L. Caplan, director of the Center for Bioethics at the University of Pennsylvania in Philadelphia, agreed with the researchers’ suggestions for law changes.
“But I think part of this is just wishful thinking,” said Caplan, who was not involved in the study.
“As far as allowing oral (advance directives), a lot of states have considered this already, and just said ‘no,’” Caplan told Reuters Health. “So they’re probably not going to change that.”
The same is true of allowing domestic and same-sex partners the same status as spouses, Caplan said.
He also noted that while the study highlighted some legal obstacles to Americans planning their end-of-life care, “I don’t think that these are the largest obstacles.”
“The biggest issue is that people do not want to do advance directives,” Caplan said. “There is a fear of planning for how we die.”
Only about 30 percent of Americans, Caplan noted, have a living will. “And we’ve been trying to promote living wills since the 1990s, and Terri Schiavo,” he said.
Terri Schiavo was at the heart of a years-long “right-to-die” legal battle between her parents and husband after Schiavo suffered a cardiac arrest and brain damage in 1990. The brain damage left her in a persistent vegetative state, and her husband — arguing that she would not have wanted to live that way — wanted her feeding tube removed. Her parents disagreed.
Schiavo died in 2005, after a state court ordered that the feeding tube be removed.
End-of-life planning has been in the news more recently as well.
Last month, the Obama administration announced a new regulation that would give doctors Medicare reimbursement for counseling patients on end-of-life planning, as part of patients’ routine annual check-up.
But the administration quickly reversed course, citing procedural reasons. (The new regulation had not been subject to public comment.) But observers pointed to political concerns.
Similar proposals about end-of-life planning had initially been part of the healthcare reform legislation signed into law last year. But those proposals were dropped after rumors spread that government “death panels” would have a say in which Americans could have life-prolonging care.
Caplan said that an open, frank dialogue is what’s needed to encourage more Americans to plan for end-of-life care.
“It would have been useful,” he said, “for healthcare reform to have addressed this.”
SOURCE: bit.ly/an7XRm Annals of Internal Medicine, online January 17, 2011.