Advance Health Care Directives and Living Wills: A Beginner's Guide

Quick summary

Helping your parent prepare for end-of-life medical decisions can be of great comfort to both your parent and to others in your family. The document that helps you do this is an advance health care directive or living will—what it's called and what it includes depends on where your parent lives—sometimes paired with a power of attorney for health care.

Such a document is important because, given a medical situation in which your parent can't speak for himself—anything incapacitating, from a short, temporary condition to a long terminal illness—it lets medical providers and other decision makers know your parent's medical preferences, and it can authorize someone to speak on your parent's behalf. Without an advance health care directive or living will, patients who can't communicate may be left to the confused decisions of squabbling family members or the mercy of doctors who might use artificial means to prolong life, or refuse to do so, regardless of what your parent would want.

What is an advance health care directive?

An advance health care directive is the primary legal tool for protecting your parent's healthcare wishes if and when he can't speak for himself. The health care directive would apply any time your parent is unable to communicate, whether or not the situation is life threatening, and for however long is necessary. Examples are a patient's temporary condition after an incapacitating stroke or his chronic state during the long-term, late stages of Alzheimer's disease. An advance health care directive can set out your parent's wishes regarding the specific care he does and doesn't want, and it can appoint someone—usually a close family member—to supervise that care or to make decisions for him when he's unable to do so. An advance health care directive would not override your parent's direct control over his care as long as he can still speak for himself.

What is an advance health care directive supposed to accomplish?

Advance health care directives come in several varieties and go by several names, depending on the state where your parent lives. Advance health care directive is the general name for all these documents. Some of the other names for particular documents are advance directive, living will, health care declaration, medical power of attorney, durable power of attorney for health care, and patient advocate designation.

These documents—either one document alone, or two in combination—are meant to protect your parent in two ways if and when he can't communicate:

1. Your parent can set out the specific types of healthcare—usually including artificial life-prolonging care, artificially administered food and water, and comfort care—that he does and doesn't want. In most states, this care can be specified if your parent is either close to death from a terminal condition or considered permanently comatose. This clarifies things not only for family but also for medical providers, who are bound by law to follow your parent's wishes or find another provider who will agree to follow them.
2. Your parent can name someone to act on his behalf in making healthcare decisions when he can't do so himself. This designated agent, who's given legal power to act by the document, can make sure that your parent's wishes are carried out and can make any other healthcare decision that wasn't specified in the document.

Which documents does my parent need?

Ideally, your parent will achieve two separate goals, no matter what documents are used. He can spell out specific instructions and name someone to speak on his behalf. This might be accomplished in one document, or it might take two.

The possible need for extra paperwork is that some documents, usually those called living wills or health care declarations, just set out specific instructions from your parent. They spell out the care your parent does or doesn't want if he's terminally ill or permanently unconscious, usually with particular attention to end-of-life decisions such as resuscitation and artificial prolonging of life. The problem with relying solely on such a document is that it can't anticipate every possible medical scenario. Also, it doesn't grant any particular person the authority and responsibility to make sure that your parent's wishes are actually followed.

Another type of document, variously called a medical power of attorney, power of attorney for health care, patient advocate designation, or something similar, names a specific person to act as the patient's "agent," "proxy," or "attorney-in-fact." This person will have legal authority to make sure your parent's wishes are followed and can make all other decisions related to your parent's medical care, including:

• Consenting to or refusing any medical treatment or diagnostic procedure related to physical or mental health, including artificial nutrition and hydration.
• Hiring and firing medical providers.
• Admitting to and discharging from hospitals and long-term care facilities.
• Accessing to all medical records.
• Giving directions regarding organ donation.

However, these power-of-attorney documents don't always include descriptions of what specific medical care your parent does and doesn't want. This leaves room for arguments among family members and doctors, even though the person named in the document has the last word.

In most states, an advance health care directive permits your parent to accomplish both goals in a single document. In other states, your parent might need two separate documents.

What if my parent can't decide?

Perhaps your parent has a very clear idea of what type of life-prolonging or comfort care he would want toward the end of life, but he's hard-pressed to come up with a trusted person to name to supervise that care. In such a case, encourage him to go ahead with expressing his wishes for care in writing in a directive—even if he has to forego naming an agent.

While this method isn't optimal, in such a case medical personnel would still be legally bound to follow the written wishes for care—or find another doctor or hospital willing to carry them out.

On the other hand, your parent may not be sure, right now, exactly what medical procedures he would or would not want to undergo in the future. But he is ready to name an individual to oversee his medical care if he becomes unable to express his wishes—someone who knows his mind and will lobby for that care even when up against an unwilling medical establishment.

In such a situation, encourage your parent to take the step of naming the healthcare agent while skipping the other step of setting out detailed wishes for medical care. That will ensure that one specific person will be authorized to supervise his care, rather than leaving medical decisions up to the whims of a particular doctor or hospital policy.

How should my parent choose an agent?

First, know the rules. In many states, the patient's doctor can't be named the patient's agent in an advance health care directive. In any case, it's a bad idea to name a doctor. Instead, your parent should select someone trustworthy and loyal who, above all else, knows your parent's wishes and can discuss them with him and with others. This, of course, requires that person's willingness and ability to talk openly with your parent about dying and death. Ideally, the agent should be someone who can be physically present or easy to reach when your parent needs to have healthcare decisions made. And the agent should have a strong enough personality to make sure that your parent's wishes are followed—someone who can't be bulldozed by other family members or by doctors.

Your parent should name only one agent, not two. This avoids disputes. But your parent should name a successor or alternative agent, particularly if the agent is also elderly—for example, if your father chooses your mother as the initial agent. The alternative agent will serve if the first-named agent also becomes incapacitated, dies, or is otherwise unable to serve.

What should we do with the completed advance health care directive?

Keep the original advance health care directive in a safe place that's easy to find, and give copies to:

• Each of your parent's regular doctors (request that it be made part of your parent's formal medical record).
• The named agent and successor or alternate agent.
• Your parent's lawyer (even if the lawyer didn't prepare the document).
• Any healthcare facilities that will be treating your parent.
• Close family members.

Your parent can also keep a note in his wallet stating that an advance health care directive exists and giving contact information for any agent who's named.