Preparing for the End of Life
by Barbara Maltby, M.A.

Why is having an advance directive important to you and your family? Here are two "reasons" among many: Terri Schiavo and Karen Ann Quinlan. Both were young women who ended up in long-term, irreversible comas (persistent vegetative states) after serious accidents or illnesses. Both became the focus of legal, governmental and public attention for many years while their families suffered great anguish. All because they did not have advance directives that would have clarified what kind of medical decisions they would want made for themselves.

Perhaps you yourself have experienced the emotional trauma of trying to decide what decisions to make for a terminally ill person who had never talked about their own wishes for end-of-life care. You might have witnessed the prolonged suffering of someone you loved while the medical team and family, sometimes at odds, struggled to make the choices they thought, but weren't sure, the person might want. Or you might have been part of a family unit who fractured under the burden of competing beliefs about when or whether to withdraw treatment from a "loved one."

In all these cases, substantive evidence of what the patient would choose for him or herself is lacking, an absence that substantially increases the moral burden for those to whom the decisions have fallen. Just as important, in such situations the patient may not receive the kind of care that he or she might have actually wanted.

Why then doesn't everyone over 21 have an advance directive? Many people, including physicians, don't want to talk about dying. It can feel scary, or seem unnecessary, i.e. "My family will know what to do." Some people are in denial, even though "life," as someone, perhaps a comedian, said, "is a terminal condition since no one gets out of it alive." Having an advance directive is a form of insurance that helps you and your family if and when you can't make decisions for yourself. They will know what kinds of choices you would want made, and you will then get the care you would want.

So What Is an Advance Directive?
An advance directive can take two forms. The first is a written document, often called a Living Will, that contains your wishes for care should you become terminally ill or irrevocably incapacitated. This document can also contain a section, commonly known as a values history, where you can elaborate on those things in life that are most meaningful to you... for example, being able to recognize and communicate with others... or, say, maintaining a spiritual life.

The second type of advance directive involves appointing a person to make health care decisions for you in the event you can no longer make them for yourself. This person is known as a healthcare proxy or a health care agent. NY and other states have a specific form for appointing a proxy.

Studies have shown that having a healthcare proxy is the most effective mechanism for ensuring that you get the care you want, but only if that person knows your general wishes. This means you must talk to your proxy, preferably before you get really sick. And you must continue to have conversations over time in case your wishes change, A well-prepared healthcare proxy is better than a living will because 1) a written document can get lost; 2) what you have indicated in such a document may be too vague, or not applicable to the actual medical situation you are in; 3) medical situations are often very complex, prognostically ambiguous, and fast-moving. They require a decision-maker who can make interpretive judgments that best match your wishes with the specific medical circumstances; 4) a health care proxy is your advocate, your voice, if you can not communicate; 5) a health care proxy has legal standing, recognized as the person you chose to represent you. If a family is deeply divided about what to do, your appointed proxy is the final arbiter.

How Do I Appoint a Health Care Proxy?
Before you do anything, think about the best person to be your representative and advocate. For some, this person might be a family member. For others, it might be someone you feel would not be so emotionally involved. The only person it can't be is your doctor. Picking someone who shares your general values is important, as your proxy has to make decisions as if he or she were actually you. Example: If you know a person believes in trying all aggressive measures no matter what, and you are someone who doesn't want your life prolonged in certain situations, that person would not be the best proxy for you.

The next step is to ask this person whether he or she would be willing to take on this role for you. In other words, it is not fair to pick a proxy without first asking if that person is willing to take on such a responsibility. Next, you need to obtain state-specific appointment forms by: 1) asking your doctor for one; 2) getting it from your hospital; 3) downloading it from www.caringinfo.org. Note: you do not need a lawyer for any part of this process unless you want specialized advice.

If you get your health care mostly in New York, you only need to fill out the New York form. This form requires two witnesses to your signature but does not have to be notarized. In New York State it is critically important to appoint a health care proxy. Why? Because New York, unlike most other states, does not officially recognize a family member or close friend as someone who is allowed to make decisions about refusal or withdrawal of treatment for someone else. In actuality, doctors confer with the family, but if the decision is particularly difficult, or if there is a lot of dissension, the lack of a proxy can be a severe detriment. In addition, New York State requires "clear and convincing evidence" to refuse or move life-sustaining treatments, particularly artificial nutrition and hydration. The New York State proxy form has a paragraph where you can also write down your wishes about these treatments.

Final Steps
As mentioned, it is very important to have a discussion with your proxy and your doctor about your general wishes for care. The relationship between you and your proxy is one of mutual responsibility: yours to prepare your proxy to make decisions for you should that become necessary; and the proxy's, to carry out that weighty role.

The course of action I have just described can seem difficult. For that reason, I recommend the use of a workbook I co-wrote called Fidelity, Wisdom & Love: Patients and Proxies in Partnership. It takes you through a step-by-step process for appointing a proxy and having meaningful discussions. You can use this workbook on your own, or you can make an appointment for a personal consultation with me by calling (860) 435-2749. (The workbook can be ordered online at www.fidelitywisdomandlove.org.)

Barbara Maltby, M.A. is a medical ethicist specializing in improving end-of-life care.