More attempts — and earlier efforts — needed for advance directives to work
More attempts — and earlier efforts — needed for advance directives to work
Hospital education often too late
A 22-year-old accountant, just out of college and beginning his first job, applies for health insurance through a plan sponsored by his employer. As part of the process, he is asked to complete an advance directive indicating what lifesaving measures he would like to be used in the event he is seriously ill or injured and unable to communicate with medical personnel.
A 32-year-old new mother files for a change of status with her existing health plan. As part of the routine paperwork, she completes an advance directive form or reviews a prior document to ensure it still reflects her wishes.
Take a proactive approach
If advance directives are going to have the impact on end-of-life care planning that policy experts hope, efforts need to be made to get people to think about such decisions before they are faced with a health crisis, not after they enter a hospital, argues Arnold Eiser, MD, professor of general internal medicine in the school of medicine at the University of Illinois at Chicago.
"As a clinician and as a bioethicist, my experience has been that these issues are not considered until the patient is in the hospital, loses his or her decisional capacity, and cannot make decisions about care," he says. "It is then up to the family and the health care provider to try to determine what the person would have wanted."
The Patient Self-Determination Act, passed by Congress in 1991, requires states to recognize living wills and durable powers of attorney for health care as advance directives and as informed consent for medical care. Among the act’s provisions was a mandate that hospitals provide education about advance directives and that patients be given information about advanced directives upon admission.
While well intentioned, the law has not had the intended results, Eiser says. Despite targeted efforts to increase the number of people completing advance directives, the completion rate nationwide remains under 25%. Focusing on hospital admission as the point when a directive should be completed also misses the boat, he adds.
"When people are admitted to the hospital, they are already in a crisis situation," he says. "It’s not the best time for them to objectively consider what they want."
Tie directives to health coverage
Amending the law to require insurance companies to offer advance directive forms when initiating or changing a person’s coverage is the best way to get more people to take part in the process, Eiser says.
"We are asked to fill out a lot of forms when we get our first job, about things we don’t always like to think about, like life insurance. This would be similar to that," he says. "And given that the average person changes coverage about every three years, there would be plenty of opportunities to update the information."
Although such a policy would not cover uninsured Americans, Eiser notes that only 1% of uninsured Americans are over the age of 65. And, the majority of people who die in hospitals are covered by health insurance. Therefore, the people most likely to need advance directives would be reached by such a policy change.
"And people who are uninsured are not prevented from filing out advance directives," he notes. "Anyone can decide to do one."
Asking people to consider completing advance directives at a time when they are healthy and stable has the advantage of forcing people to think about the medical treatments that they do or do not want without the pressure that an immediate medical problem adds. And because most advance directives require a person be designated to implement the document, it ensures that the patient has involved family members or friends in discussions about his or her wishes.
Incentives might be the answer
Even if opportunities to complete advance directives are improved, policy makers must address the fact that many people just do not want to think about death or serious illness and therefore, don’t plan for that eventuality, says William Lamers, MD, medical consultant with the Hospice Foundation of America in Washington, DC.
"The first problem is that we as a society don’t like to think about death and dying, and we don’t want to talk about it. Even physicians don’t want to talk about it," he says.
In addition, the current level of specialization in health care, with patients seeing several different specialists for different health conditions, lessens the opportunities for the person to discuss his beliefs and wishes with a single, trusted provider, he adds.
"Even when an advance directive is completed, it is not always respected and adhered to," he says.
Lack of compliance with advance directives is, in part, a result of so few directives being in place, Eiser believes. Unless a significant percentage of patients at the end of life have advance directives in place, physicians and health care systems won’t see a need to make their implementation a priority.
Eiser agrees incentives also are needed to induce people to complete an advance directive, even if the forms are made available more often. Even extensive education efforts by the Chicago-based American Medical Association and the American Association of Retired Persons have not resulted in a substantial increase in the number of people completing advance directives, he notes.
"I think it should be some small incentive, possibly involving a free health care service for people who are already ill, or a coupon for an exercise class or program if the person is healthy — something of that sort," he says. "It doesn’t necessarily have to be health care-related, but I think, since we are talking about medical care, it makes sense to offer something that would benefit their health."
Model directives
Several different advocacy and professional groups have developed educational materials about advance directives, many of which are available on the Internet, Eiser says. "It’s not as if we need a number of new programs."
It would, however, be useful if the National Bioethics Advisory Council or a similar group to develop a model living will that is comprehensive enough to include a wide variety of medical situations that might arise, he says.
"Some advance directives are too vague and some are too specific as to conditions that would trigger implementation," he explains.
For example, failure to list the triggering conditions under which an advance directive becomes operative limits its utility. Conversely, if a living will cites a persistent vegetative state as a triggering condition and the patient presents with advanced dementia, the living will would not be in force.
Benefits of advance directives
It’s important to increase the percentage of people completing advance directives for two reasons, Eiser says. One, to remove the unfair burden placed on families forced to make decisions about a patient’s care when the patient has become incapacitated and, secondly, to reduce the provision of unwanted medical care.
"While it’s true that we might be creating significant record-keeping costs with significantly more people completing advance directives, it is possible that these costs may be offset by a cost-savings from a reduction in performance of unnecessary medical procedures," he explains. "But, the real reason we should do this is to prevent families from being put in the position of deciding what to do, when they haven’t discussed these issues with the patient. It is a horrible situation."
Suggested reading
- Eiser AR, Weiss MD. The underachieving advance directive: Recommendations for increasing advance directive completion. Am J Bioeth. Available on-line: www.ajobonline.com/infocus/infocuseiser-weiss.htm.
- Arnold Eiser, MD, University of Illinois at Chicago, MC 787 840 S. Wood St., Chicago, IL 60612.
- William Lamers, MD, 2001 S St., N.W., #300, Washington DC 20009.
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