Advance care directives allow you to make your health care wishes known at a time when you are unable to speak for yourself.
Most of us value our ability and freedom to make choices, especially about medical treatment. But what if you lose the capacity to make decisions or let your wishes be known? How will clinicians know what treatments you want, or don't want? Who would communicate your wishes to them?
The danger is that important medical decisions will be left to a physician who is unaware of your values, beliefs, or preferences, or to a relative who doesn't know your wishes, while your best friend, who knows far more about you, is legally powerless to intervene. One solution to this problem is a living will or health care power of attorney (also called a health care proxy form) — documents known as advance care directives. Every adult should have one or both of these documents.
What do they do?
A living will and a health care power of attorney are related but work in different ways. In a living will, you describe your goals for medical treatment, your religious or spiritual beliefs, and any guidance you wish to give regarding your medical treatment in various circumstances. A health care power of attorney permits you to name a health care proxy, or agent — a person who will make medical decisions on your behalf if you are unable to make them yourself.
People sometimes worry that by signing one of these documents they give up control over their medical treatment. But it doesn't work that way. As long as you're able to make and communicate your decisions, your word supersedes anything you've written or said to others. An advance care directive goes into effect only when you're unconscious or too ill to make your wishes known — and once you recover from the incapacity, what you say takes precedence over any document.
Advance care directives are not difficult to create. You can write one up on your own, without a lawyer's help (see "Selected resource"). Some experts suggest that you either make a living will or assign a health care proxy. If you choose to have both, naming a health care proxy should be a priority, to ensure that someone can act in situations not covered in a living will.
Your health care proxy
If you can't make health care choices for yourself and don't have a health care proxy, the job of making them will likely fall to one or more of your relatives. For many people, this isn't a problem. But if you don't feel close to your legal next of kin, you may not want these decisions to be in his or her hands. Also, if two or more relatives are involved, your clinicians may feel they need to get a consensus before proceeding. This can cause conflict and delay treatment.
Most people pick a spouse, partner, adult child, or close friend as their health care proxy. It's best not to appoint more than one (and in many states it's illegal to do so) because all of them would need to agree on every decision. But do appoint an alternate proxy in the event your proxy is unavailable when needed. You can also instruct your proxy to consult others.
Your health care proxy is obliged by law to make decisions that she or he thinks you would have made. Talk to your proxy about medical treatments you may or may not want and about how your religious or spiritual beliefs and personal concerns shape your treatment preferences in various situations. If you have a living will, go over it with your proxy. You can't anticipate everything, so make sure you feel absolutely comfortable allowing the proxy to make decisions about matters you haven't specifically discussed.
What's in a living will?
A living will provides a written record that can guide your doctors and loved ones in caring for you. Often, it's used to determine how aggressive you would like your health care to be near the end of life. Be careful in describing your wishes, because it's impossible to know all the variables that might affect a future decision. For example, if you say you don't want to be tube-fed under any circumstances, you might be lowering your chance of recovery from a temporary health setback.
Your physician can explain medical terms and discuss what's possible and what's unlikely to work given your situation and goals. It's a good idea to talk to her or him before you finalize your wishes, whether you do that in a document or in conversations with your health care proxy, family, and friends.
The information that's required for a living will or other advance care directive differs from state to state. To download the correct forms for your state, go to Caring Connections, a Web site of the National Hospice and Palliative Care Organization, at www.caringinfo.org.
Living wills generally cover certain procedures that might be performed when a person is incapacitated or at the end of life, including these:
Artificial nutrition (tube feeding). If you can't swallow anything, this procedure supplies nutrients and fluids through a tube inserted through your nose into your stomach (short-term), through the abdominal wall into the stomach (long-term), or into a vein if your gut isn't working properly. Tube feeding may be used as a bridge when the underlying problem is thought to be temporary and the person is likely to recover. More controversially, it has also been used long-term to help keep a person with an irreversible condition alive. Hydration (giving a solution of water, sugar, and minerals through the vein) can also be used short-term or long-term.
Cardiopulmonary resuscitation (CPR). If your heart or breathing stop and you become unconscious, you may be resuscitated by CPR. This technique involves artificial circulation (chest compressions), artificial respiration (mouth-to-mouth breathing), and defibrillation (to shock the heart back into a steady rhythm). If CPR fails, the next step is advanced cardiac life support: intubation and mechanical ventilation plus medications to control heart rate, raise or lower blood pressure, or improve kidney function. CPR can cause injury, and the revival rate with CPR is low — no more than 22% in general, and as low as zero for older, frail people. Some people with terminal illnesses who have been resuscitated this way say they wish they hadn't been. Think about whether there are situations in which you wouldn't want CPR.
Mechanical ventilation. A ventilator or respirator (sometimes called a breathing machine) forces air into the lungs when you can't breathe on your own. A tube attached to the machine is inserted into the nose, mouth, or throat and passed into the trachea (windpipe). Because this is extremely uncomfortable, people on ventilators require high doses of sedatives and therefore are not fully conscious. Like tube feeding, mechanical ventilation can be used for a short period of time, as a bridge to recovery, or long-term. You should decide whether you want to be kept on mechanical ventilation if physicians determine you will never be able to breathe again on your own.
A doctor talks about: Advance care directives
Celeste Robb-Nicholson, M.D.
In my own medical practice, I find advance care directives invaluable. They help me open a dialogue with my patients about their deepest concerns, especially about being critically ill or incapacitated — whether they fear pain, loneliness, lack of control, or becoming a burden. These documents also give family members or friends the guidance they need to make difficult choices for an incapacitated loved one.
But no document can anticipate everything. Early on in many critical situations, it's impossible to predict a patient's outcome. The advance care directive doesn't lessen my responsibility to bring my medical insights to bear on my patient's predicament. She may need a respirator, feeding tube, catheters, or more, to get through a difficult part of her illness. All doctors have seen critically ill patients — burn victims are a good example — who recover a very good quality of life after terrible ordeals. Unless a patient has a known terminal illness, we do what we believe will support her life.
Sometimes the patient doesn't respond, and the medical technology we called upon ends up supporting a kind of life she doesn't want. In these circumstances, patients, families, and doctors may find themselves second-guessing their original decisions. All parties may have to consider withholding or withdrawing medical support. A living will or health care proxy can help in those situations.
Even with a living will, the issues surrounding end-of-life care are rarely simple or clear-cut. A doctor's notion of "quality of life" may differ from her patient's, and she may not feel completely confident of her patient's wishes in the immediate circumstances. Family members may have strong and conflicting views.
We physicians want to help our patients live while honoring their choices about dying and acknowledging their fears about living with a poor quality of life. Advance care directives are important guidelines, but there's no substitute for frank conversations with your physician, your health care proxy (should you choose one), and anyone else who is close to you. Such dialogues help foster trust and confidence that all those involved will work together in your best interest.
Sharing your health care preferences
After your health care proxy, your primary care physician is the most important person to talk to about your advance care directives. A physician who disagrees with your wishes doesn't have to carry them out, but she or he is obligated to find another clinician who will. Make sure your physician knows the contents of your advance care directives and agrees to find a clinician to comply with any requests that she or he finds problematic.
It's important to define any terms in your health care proxy form or living will that could be open to various interpretations. One study found that a group of doctors given a hypothetical living will and patient story came to very different conclusions about what should be done. Terms like "life-threatening," "short period of time," "severe disease," "end-stage condition," and, especially, "quality of life" may require clarification or specification.
Once you've completed your living will and health care proxy form, keep the originals at home in a safe place, and give copies to your proxy, alternate proxy, and physician (she or he should keep the copies in your medical file along with notes about any conversations you've had and the health care proxy's current contact information).
Advance planning for end-of-life care
In 1990, Congress passed the Patient Self-Determination Act guaranteeing patients the right to accept or refuse treatment and to complete advance care directives. Since then, an increasing number of people have made living wills and assigned health care proxies, but the effectiveness of such measures has been the subject of debate. The directives aren't always available when needed; the clinician may not even know a directive exists; the proxy may be unavailable or emotionally unable to provide guidance; or the patient's stated preferences with respect to medical interventions may be outdated or inapplicable to the specific circumstances.
To counter these problems, some experts have proposed an additional form for people with terminal or advanced illnesses, called Physician Orders for Life-Sustaining Treatment (POLST). POLST doesn't supplant a living will or health care proxy form, although it could function in the absence of one.
The first step is a discussion about end-of-life treatment options between the physician and patient (or an authorized health care decision-maker). The patient decides on a treatment plan, and her wishes are then translated into medical orders, which are recorded on a brightly colored form signed by the physician and kept in the front of the patient's medical record, to guide health providers during an emergency. The POLST form focuses on potentially imminent decisions rather than long-term planning. It covers interventions such as CPR, intubation, and tube feeding, and it goes with the patient if she or he moves to another facility.
So far, POLST programs have been endorsed or are in development in more than 30 states. For more information, go to www.ohsu.edu/polst.