Advance directives give patients a voice
Completing advance directives should not be seen as a legal task. While there is a legal component to the document, it is primarily a communication task, says Charlie Sabatino, JD, director of the American Bar Association (ABA) Commission on Law and Aging in Washington, DC.
When a patient is incapacitated, the person he or she has designated as the health care proxy becomes the voice of the patient. At a time when The Joint Commission is putting standards in place that emphasize effective communication, ensuring patients have a clear understanding of advance directives makes sense.
Since 1990, when Congress passed the Patient Self-Determination Act, hospitals have been required not only to ask patients if they have advance directives when admitted, but also to provide education about them to consumers and staff, says Sabatino.
Yet surveys indicate that only about one-third of the adult population has some form of advance directive, he says. For people over the age of 65, survey data indicates that more than 50% have advance directives, he adds. "But that doesn't tell us how effective they are or how well thought-out they are," says Sabatino.
What information do consumers need to create advance directives that are well thought-out, effective communication tools?
Advance directives do not need to provide detailed instructions about the type of care consumers would like to receive based on medical scenarios. "My advice is that specific instructions are useful to the extent they are based on a person's actual medical history and not imagined ideas or stories about what you might encounter in the face of life-threatening conditions," says Sabatino.
Canned instructions included in living wills don't really address the real circumstances, which are usually quite complicated and unique, he says. Generalized instructions about nutritional hydration or respirators don't really turn out to be very applicable or helpful, he says.
However, patients in their 80s who have lived with chronic obstructive pulmonary disease for years and have had experience with ventilators might have specific instructions based on personal knowledge, not abstract scenarios, says Sabatino.
Advance directives should be seen as a developmental process, he says, and that is why he prefers the term "advance care planning." People in their 20s might simply choose a person they wish to have power of attorney. Yet at age 50 and beyond, people might have come to some decisions based on experience they would like to express. "Depending on what stage of life and health you are at, you are going to approach this somewhat differently," says Sabatino.
Many of the growing number of resources present a workbook approach to the process that provides guidance on how to have the discussions, he says. For example, the ABA has a "Consumer's Toolkit for Healthcare Advance Planning" (http://www.abanet.org/aging/toolkit/home.html) on its web site. The National Hospice and Palliative Care Organization in Alexandria, VA, has guidelines on its site (www.caringinfo.org), as does Aging with Dignity (www.agingwithdignity.org), to name a few. Sabatino suggests hospitals provide educational materials to their primary care physician network.