Keeping up-to-date on advance directives

Americans approve, but few have them

According to recent studies done by various advocacy groups, more than 75% of Americans approve of living wills. So why do only 20% actually have them?

The obvious reason is that individuals don’t like to consider their own mortality, so most don’t give much thought to how they would like their end-of-life treatment to play out until they’re getting on in years. Why should they, since the odds of a young, healthy person requiring a living will are low. The unfortunate reality is that a person is never too young to address the issue.

Take the case of Hugh Finn.

Finn, who since a car accident more than three years ago remained in a persistent vegetative state, recently became the focal point of a statewide controversy in Virginia when his wife asked to have his feeding tube removed. By the time he died in October at the age of 44, the case had pitted family members against one another and saw Virginia Gov. James S. Gilmore III petition the court in a failed attempt to block the removal of Finn’s tube.

Perhaps no other case in recent memory has so graphically illustrated the need for end-of-life planning, and this is where the home care field can play a pivotal role, says Karen Kaplan, MPH, ScD, executive director for the Washington, DC-based group Choice in Dying. "Home health care staff have a vastly important role and are pivotal in the end-of-life drama," she says. "They can facilitate a discussion with the entire family, not just the patient, about what the end of life can be and how it can be done well."

Virginia residents were riveted by the story of Finn family. At the center of the debate swirled the question of whether Finn would have wanted the withdrawal of life support should he be unable to feed and care for himself and communicate on his own. Although Finn had discussed his wishes for end-of-life treatment with his wife, he had failed to complete the cycle by documenting those wishes. Fighting against his wife were members of his immediate family, who, because Finn had never discussed with them his end-of-life desires, felt he should be kept alive.

Eventually the court ruled in favor of Finn’s wife, stating there was enough evidence to support her claim regarding her husband’s wishes, but one can’t help but think that his family may have been spared their mental anguish had Finn only drawn up an advance directive. (See Glossary of Terms, p. 190.)

An advance directive is just that: state-specific, written or oral instructions pertaining to the types of medical care a patient wishes to receive in the event he or she is incapacitated by illness and unable to communicate. It boils down to "a person’s values with regard to life and whom he or she wants making decisions for them," says Patrick Dunn, MD, senior scholar at the Oregon Health Sciences University’s Center for Ethics in Health Care in Portland.

"People should consider and express their values with regard to life-sustaining treatment and what they value in their lives and make sure those wishes are communicated clearly to loved ones," he says.

Advance directives take on two forms: the living will and the appointment of health care proxy, or someone to speak for the patient in the event the patient is unable to do so on his own. In the past, these documents have primarily covered only those topics dealing with medical treatment, such as pain management and artificial nutrition.

Increasingly, however, there has been a shift to the more human side of dying. A recent article in the Washington Post’s Health Section examined Five Wishes, a new type of living will developed by the nonprofit group, Aging with Dignity in Tallahassee, FL. Five Wishes covers everything from medical and legal issues to whether or not the person will be alone at the time of death and the details concerning the memorial service.

While every state has some type of law regarding advance directives, few have taken so bold an approach as Oregon. That state has taken the concept of advance directives a step further, creating a directive of sorts, designed specifically for those "who are at higher risk of needing life-sustaining care," explains Dunn.

Oregon’s Physician Orders for Life-Sustaining Treatment (POLST) form, which was developed by his center, "is different than an advance directive," he continues, "and isn’t meant to take its place. It’s an instrument that puts the patients’ words into action. First responders may look at an advance directive and understand what the patient has expressed, but in Oregon, an EMT can’t act on it [advance directive] without the POLST. It kicks the advance directive into action." (See sample form, inserted in this issue.)

The POLST form, in part because it goes into greater detail than a directive, must have a physician’s signature in order to be valid. And while home health aides can fill in a patient’s information, Dunn recommends bringing a physician in on the decision-making process.

The POLST also comes in a handy wallet-size version, which like its full-size relative is printed on hot pink cardstock. "The purpose of the wallet-size POLST was for those patients who already have completed a form and are still reasonably functional and living either on their own or in a residential care facility," he explains. "Should they be in an accident on the way to a doctor’s appointment," he continues, "they would be transferred to an emergency room. While EMTs can’t go through a person’s wallet, the attending physician can to check for ID. The physician would see the wallet card and know to look for the true POLST. It clarifies things."

Advance education

While uncommon, the Finn case boldly illustrates the need for end-of-life planning and the terrible consequences that can occur if it’s left undone. End-of-life planning has become so important that under the Patient Self-Determination Act (see box, p. 188), Medicare- and Medicaid-funded home health agencies are required to discuss advance directives with their patients.

Because of the home health aides’ unique positions "in the middle of the family," says Kaplan, they can play a vital role in initiating discussions with their patients concerning advance directives and actually facilitating the documentation process. (See steps for planning, p. 189.)

As she explains, "Home health aides can provide the documents families need to fill out, and they can be active listeners in the sense that they can evaluate how things are going and pull in resources to further help the family. This could be anything from additional equipment to calling in the family clergy to looking up long-lost Uncle Bob.

"These aides have a golden opportunity to make a difference in the lives of these people, and they’re in a fabulous position to do just that," she says. For this reason it’s critical that agency management take a proactive role in educating its employees on the do’s and don’ts of advance directives.

Offering employees a selection of background material is always a good place to start. Choice in Dying has a 24-hour help line [(800) 989-WILL] staffed by people trained to provide information on advance directives and offer advice in dealing with specific situations, such as a family conflict. From the group’s Web site (, state-specific advance directive forms can be downloaded as well as orders for booklets covering a variety of advance directive-related topics.

Kaplan recommends actual training sessions, such as the one-day seminars conducted by her organization. "We will either train the entire staff directly or just one person who will act as a trainer for the rest of the staff," she says, adding that because of high-turnover it’s usually more efficient to "train a trainer."

Oregon Health Decisions, a health education group in Portland, says Dunn, is similar in its mission but uses laypeople as educators. "These people go into the communities and train the home health aides, who, once trained, can take these skills back to their patients and the patients’ families. They are taught how to respond to questions should they arise and even how to tactfully bring up the idea of advance directives in situations that seem appropriate," he says. Of course, he adds, if aides are still uncomfortable they can always direct patients and their families to their physicians.

No matter how the discussion is broached or aides are educated, says Kaplan, "the most important thing we can do is stress to agencies how important their staff are. They really can bring the voice of knowledge and peace into a family."


Patrick Dunn, MD, Senior Scholar, Center for Ethics in Health Care, Oregon Health Sciences University, L101, 3181 S.W. Sam Jackson Park Road, Portland, OR 97201-3098. Telephone: (503) 494-4466.

Karen Kaplan, MPH, ScD, Executive Director, Choice in Dying, 1035 30th St. NW, Washington, DC 20007. Telephone: (202) 338-9790.

Glossary of Terms

Advance directive

A general term referring to oral and written instructions about a person’s future medical care in the event that person is unable to speak for himself. There are two types: living wills and medical power of attorney. Advance directives are state-specific and should be completed with the advice of a physician, and in some cases, a lawyer.

Living will

A type of advance directive which puts in writing a person’s wishes for end-of-life medical treatment in the event that person is unable to speak for himself. Differing state regulations define when it goes into effect and may even limit the treatment to which the living will applies.

Medical power of attorney

A document that appoints a "health care proxy" or "health care agent" who is authorized to make decisions concerning a person’s medical treatment (not only end-of-life treatments) in the event that person is unable to speak for himself.

Nonhospital do-not-resuscitate order

A physician-completed document which directs emergency medical technicians not to perform cardiopulmonary resuscitation in the event they are called to a person’s home.