Advance directives keep communication flowing
A good health care proxy speaks up
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 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, based in Oakbrook Terrace, IL, 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?
Important to know is that 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.
He adds that the canned instructions included in living wills don't really address the real circumstances, which are usually quite complicated and unique. Generalized instructions about nutritional hydration or respirators don't really turn out to be very applicable or helpful, he explains.
However, patients in their 80s who have lived with chronic obstructive pulmonary disease for years and have had experience with ventilators may have specific instructions based on personal knowledge not abstract scenarios, says Sabatino.
He explains that advance directives should be seen as a developmental process, and that is why he prefers the term advance care planning. People in their 20s may simply choose a person they wish to have power of attorney. Yet at age 50 and beyond, people may 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.
The planning process
There are two parts to creating advance directives. The first part is a discussion about values and priorities in regard to health care with family, friends, and a person's physician. The second part of the process is documenting the decisions made.
"The much harder part is thoughtful conversations about one's goals and priorities," says Sabatino.
Many of the growing number of resources present a workbook approach to the process that even provides guidance on how to have the discussions, he says. For example, the ABA has a "Toolkit for Healthcare Advance Planning" on its website. 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), based in Tallahassee, FL, to name a few.
Choosing a health care proxy is a thoughtful process, with consideration given to what the person is asked to do, says Sabatino.
It is not necessarily next of kin that you would want to be the decision maker, he says. While it is probably true that a majority of married couples would name their spouse, if the couple were honest, they would realize a spouse may have the most difficult time letting go at the point requested, he explains.
Also, one criterion for a good health care proxy is that he or she is present at the location a person lives. Therefore, if someone winters in another state, it is a good idea to find a proxy at that location for that time period, says Sabatino.
Once a health care proxy is selected, he or she needs to be educated regarding the job description. "Providing some resources to someone who has to play that role is critically important and is often overlooked," says Sabatino. The ABA has guidelines for making health care decisions for someone else on its website.
There is no guarantee a seriously ill person's medical record will follow him or her to another facility when transferred, so it is the proxy who needs to make sure the provider at each location is aware of the directives and has a copy, says Sabatino.
A medical emergency or pending procedure is not the time to think about advance directives. People really need to receive the information time and again until they finally become open to taking the necessary steps, says Sabatino. He suggests hospitals provide educational materials to their primary care physician network. If physicians ask patients if they have named a health care proxy and provide information on the process, such patients are more likely to put advance directives in place, he adds.
Charlie Sabatino, JD, Director, ABA Commission on Law and aging, 740 Fifteenth St., NW, Washington, DC 20005. Telephone: (202) 662-8686. E-mail: SabatinoC@staff.abanet.org. Website: .