That's the response I dread when I speak with a patient about that person's wishes for care in the event of a life threatening illness when he or she is unable to participate in the decision-making process.   

Why do I dread that response? Three reasons.   

First, I try to tailor care to the informed wishes my patients. Part of being a good physician is working with your patients to make sure they are cared for in the ways that they desire. If individuals don't want to think about health-care crises, I don't know what their goals are. The care they get may not be the care they want.

Second, not thinking about or planning for a health-care crisis can be truly selfish because it puts the burden on family members. Doctors will turn to your next of kin and discuss how best to provide care. It is very common for family members to disagree as to what should be done, and arguments at the bedside can split family members when they should be coming together. As I say to many of my patients, imagine the disagreements your grown children have now and then imagine them deciding how to care for mom or dad. If you care about your kids, you need to think about this and not dump the burden on them.

Third, I am personally saddened when patients won't talk about the kind of care they want in a life threatening situation, because my desire is to provide personal care that respects a person's wishes and avoids family discord. I have seen situations where patients and family members are upset about the outcomes when aggressive life-sustaining technology is used because the patient had not expressed his or her wishes, the children were divided, and the doctors ended up "doing everything" even though that course of action carried with it tremendous burdens of suffering with very limited benefits.  

What is the alternative? Throughout the United States, an individual has the right to create an advance directive that specifies wishes for care in the event of a life-threatening illness when he or she is too sick to speak. The American Hospital Association is sponsoring a campaign to encourage people to create advance directives. Information can be found at www.aha.org. Also, the Illinois Department of Public Health Web site http://www.idph.state.il.us/public/books/advin.htm offers specific information and forms for Illinois.

There are two main types of advance directives in Illinois: a living will for health care and a durable power of attorney for health care. From my perspective as a physician, I recommend that my patients designate a durable power of attorney for health care and not use the living will.

The durable power of attorney for health care works this way. If you are seriously sick, and the doctor cannot have a conversation with you, then the person you designate with the durable power of attorney for health care can speak with your voice regarding decisions about medical procedures and treatments. The proxy makes decisions based on his or her best idea of what you would desire in the situation. The doctor is the one who should be making life and death decisions. The durable power of attorney is there to provide the viewpoint of the person who is too sick to be part of the discussion. It is very important to note that the proxy only has decision-making power when the patient is too sick to participate and lacks decision-making capability.

Why do I like the durable power of attorney over a living will? It gives me and other physicians someone who can advocate for the patient when a complicated and unanticipated situation arises. I find that it is the best vehicle to preserve the voice of the patient in ambiguous situations. I also like the durable power of attorney because it creates a process where the patient, the doctor, and the person the patient chooses have a conversation about the patient's goals for care.  

Having a conversation with your loved ones and your doctor is really crucial. If you want to use a lawyer as a resource, that is fine but it is not necessary. You can get the forms for Illinois, talk to your doctor, and talk to your loved ones. The conversation with your physician can clarify your choices and help your doctor understand what you want.   

Sometimes people will say they "want everything" or "just let me die." That is not really helpful clinically. What is helpful is a sense of what specific treatments a person would find burdensome. It also is helpful to remove misconceptions about what medical care is and is not capable of achieving. Make sure that the person you designate as the proxy knows your wishes. It is ideal for the doctor to meet with you and the proxy. The doctor can make sure the proxy is noted in the medical record and that a copy of your durable power of attorney becomes part of the chart.

Simply speaking with a lawyer without informing your doctor is not wise. Your lawyer will not be with you in the ICU when decisions need to be made. If you do not share the directive with your health-care provider, it may mean that in an emergency no one will know about or have access to your directive. That would be a shame.

Myles Sheehan, SJ, MD
Associate Professor of General Internal Medicine
Loyola University Chicago Stritch School of Medicine

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