MAR 1997

Michael E. Holtby, LCSW, BCD

DenverPsychotherapy.com

ADVANCE MEDICAL DIRECTIVES

First published in March, 1997 in Colorado's AIDS Newsletter, Resolute!

Not to be reproduced without the author's permission

"It is one of my pet peeves," states Pat Gourley, RN, the Head Nurse of D.G.'s ID/HIV Clinic, "that discussions of these issues are often precipitated by a medical emergency -- a very unfair time to be asking people about these issues." This was echoed by the many health care professionals I consulted to do this column. Michael Shernoff, MSW, the editor for the AIDS & Social Work Association's journal, would challenge you as to why you haven't taken care of this before now. As Gourley says, "Unaddressed issues are almost always handled poorly on the death bed!"

Advance medical directives basically cover three things: 1. Living wills, 2. Medical Durable Power of Attorney, and 3. A CPR Directive. The latter can only be applied to a specific medical condition, signed by a doctor, and instituted within a short time of its being needed.

LIVING WILLS specify what your wishes are in the event that you "have an injury, disease or illness which is not curable or reversible and which, in the judgement of two physicians is a terminal condition; and for a period of seven consecutive days or more, you have been unconscious, comatose or otherwise incompetent so as to be unable to make or communicate responsible decisions concerning your health care." A living will clarifies your wishes concerning: 1. The withdrawal of life-sustaining procedures, 2. The use or lack of artificial nourishment, and/or hydration that might unnecessarily prolong your life. You may wish to add procedures such as amputation, antibiotics, chemotherapy, radiation, blood transfusions, or the use of any mechanical or artificial interventions which would extend your life by replacing a failing vital bodily function.

Other Points To Consider:

You might want to add to this that you favor pain relief medication which might risk ending your life in an effort to keep you comfortable. If you believe in physician-aided dying under some circumstances it may be helpful to state that, although it is not a directive your physician can legally follow at this time.

Doctors will tell you pain is controllable, but in a large study on the last three days of life of over nine thousand seriously ill patients, four in ten experienced severe pain most of the time. Further, a recent study specifically of AIDS pain found doctors typically underestimate and undertreat.

You can also state that you will not pay any bills incurred if treatment is provided against your wishes or your agents. A large study done by the Robert Wood Johnson Foundation reported in the December '95 Journal of the American Medical Association found living wills are not necessarily followed. Ken Greenberg, M.D. has pointed out that the key here is your relationship with your doctor, and having explored these issues well in advance of facing them. Another study reported in the American Journal of Respiratory and Critical Care Medicine (Jan. '97) indicates things are getting better: The researchers found that for 1987-88, recommendations to withhold or withdraw life support preceded 51% of the deaths. But by 1992-93 in the same intensive care units the figure had increased to 90%.

It is very important that you deliver a copy of your living will to everyone who may be involved: health care providers, family and friends. It is also advised to carry one in your car, or have a card in your wallet with directions as to who is your medical, durable power of attorney and where your living will can be found. If you want your advance directives followed its best to discuss them when you are healthy. As Pat Gourley advised, "Surprises at the bedside of a dying person are never well received." As Dan Perlman, M.D., says, "I feel I learn a lot about my patient's wishes by having these discussions, and have a better understanding of their needs if they are to deteriorate and the living will is activated." This sentiment was echoed by Bob Janowski, M.D.: "In my mind, the most important functions of these documents is to stimulate thought and discussion before a health crisis occurs and then keep all the important players informed."

Attorney, Steve Ellis of Sarasota Florida, advises that Living Wills be updated every two years, as the older the document, the more conflicted a physician will be about carrying it out. He also suggested that older versions be kept as evidence of your consistent intentions.

MEDICAL DURABLE POWER OF ATTORNEY is a person assigned in your living will to be your advocate in the event that you cannot do so for yourself. Charles Steinberg, M.D., emphasizes this person may be even more important than your living will, as he will see that your wishes are carried out. He goes on to point out that for many gay men this is vital because without it one's partner may be excluded by family members who don't really know the patient.

Other Points To Consider:

Your Health Care Proxy should be a person who won't waffle making decisions on your behalf, and who is an assertive person willing to stand up to doctors and family members. He/she should be prepared to fire your doctor, involve the hospital's ombudsman, legal department, social services or transfer you to another hospital if necessary. An alternate advocate should be named, but they should not have joint authority to avoid consensus conflicts.

As Faye Girsh, Ph.D., the Executive Director of the Hemlock Society states, "We have been told that hospitals recommend to doctors to keep people alive when there is a dispute among family members about what the patient wants, even though there is a living will." So to avoid this, fully inform your family of your wishes, and who you have designated to have the ultimate say if you are unable.

Dr. Girsh also points out that you can include your wishes about the disposal of your body (cremation, organ donation etc.) and can restrict examination of certain medical records to specific people. Pat Gourley adds that if you don't specify your Medical Durable Power of Attorney's responsibility in this area, his/her authority ends upon your death. He recounts an ugly situation in which a gay partner's wishes were superceded by the biological family with regard to autopsy and cremation, even though he was the patient's proxy.

Hospital administrators and doctors are not compelled by law to participate in your living will. This is particularly a risk when you're traveling. Living wills are not internationally recognized, and nineteen states do not have reciprocity agreements to honor out-of-state documents. Trip insurance which provides evacuation coverage is recommended.

Advance Medical Directives do not need to be drawn up by an attorney, and a standard form can be obtained by calling the Colorado Hospital Association: 758-1630.

Ken Lichtenstein, M.D. points to the fact that a conscious and competent individual can override his living will at any time, and there are times when ventilation, for instance, might be used to correct a short-term problem if "return to baseline quality of life is expected." You can change your medical directives at any time. Charles Steinberg observed that with the recent optimistic changes in the prognosis of HIV some of his patients are revising their living wills. Faye Girsh concludes, "Give yourself and your agent some latitude. This is a good time to examine what you value in life, that without it, life has no value. Remember, when the time comes, you may change your mind. Don't cut off your life prematurely!"

For more information on advanced directives:

See the Right to Die part of my web site.

Last messed with November 15, 2001