Q. Our parents are up in years and have become increasingly frail. I know that they both have definite wishes about advance care planning and end-of-life decisions. Any suggestions on how we might help them make sure that their wishes are honored?
A. Yes, I do. The first step is to begin the conversation. There is an excellent “Conversation Guide” prepared by the California Coalition for Compassionate Care that is available for free download at www.finalchoices.org, or by calling 916-552-7573. It is not necessary to conduct the entire conversation in one sitting. Instead, it can be an extended discussion that is raised from time to time, just in case your parents’ wishes change over time. One of the best ways to ensure that their wishes are honored is for you to help them communicate their wishes to their family and physicians.
In terms of legal documents, I also suggest that your parents sign an Advance Healthcare Directive, which expresses their end-of-life wishes and appoints a health care agent to implement them if they are unable to do so themselves. They can either sign a preprinted form or they may have a customized document prepared by their estate planning or elder law attorney. Please Note: While this is a very valuable and important document, studies do show that end-of-life decisions are, unfortunately, not honored as often as most people think. Sometimes the signed directive is not available at the time of need, or it is not clear, or the designated agent is just unwilling to give up the hope that further treatment may restore their loved one’s health. We therefore recommend that your parents also take the following further step in the following circumstances:
For persons faced with a serious or potentially terminal illness, they should initiate a discussion with their physician with the idea of jointly signing a document known as “Physician Orders for Life-Sustaining Treatment (“POLST”). This is an innovative medical form recently created under California law that allows patients to specify what kind of care they wish at the end of their life. The most important feature, and the one that distinguishes it from the Advanced Healthcare Directive, is that the form is signed by the patient’s doctor and becomes an actual physician’s order. As such, it carries special weight because it must be honored by all medical personnel involved in treatment. Your parents’ physician, rather than any designated agent, would have responsibility for implementing your parents’ wishes. By doing this, your parents can relieve you and your siblings of the responsibility of making the final decisions.
The POLST form is designed to become a permanent part of the patient’s medical records and to travel with the patient as he/she moves from one treatment facility to another. It is often printed on bright pink paper so that it is easily identifiable in the patient’s chart. At least one study has shown that patients who had properly executed POLST forms had much less unwanted hospitalization and medical interventions.
For more information on Advanced Healthcare Directives and the POLST form, click our own article entitled ” New POLST Raises Awareness About End-Of-Life Decisions” or you may contact the Coalition for Compassionate Care of California at 916-489-2222 ( www.capolst.org), or the California Medical Association at 1-800-882-1262.
Remember, that opening this conversation is an act of love for all parties.