Make your wishes known

I have advocated the use of advance directives for most of my career. The basic concept is that a person who is in good health and thinking clearly is challenged to think about what might happen if she or he were incapacitated. Then they express their desires for what should happen. For more than a decade, our church has promoted the use of a simple document called “Five Wishes.” The document is centered around five considerations:
  • The person I want to make care decisions for me when I can’t
  • The kind of medical treatment I want or don’t want
  • How comfortable I want to be
  • How I want people to treat me
  • What I want my loved ones to know

The document, once filled out is valuable. It is a legal document that can be submitted to a health care provider and will be considered in making medical decisions. More important than the document, however, is the process. The process encourages conversation with loved ones about topics that are uncomfortable and sometimes difficult to address. Having been with a lot of families facing extremely difficult medical decisions, I’m convinced that the conversations and a sense of knowing the wishes of the individual involved are the most important considerations.

What experience has taught me is that you can’t imagine every scenario in advance. None of us knows the exact path our living and dying will take. We know we will all die. We know that there is a possibility that there may be moments in our lives when we are incapacitated and decisions need to be made by others. What we don’t know is an exact response to every possible situation.

In general, most people are reluctant to have life-sustaining medical treatment once there is no possibility of regaining consciousness and recovering to the point where they can engage others in conversation. There are a few folks who want every possible treatment, regardless of cost or comfort as long as it will prolong life, but most of the people with whom I visit see some limits of medical care. “I don’t want to go on as a vegetable,” is the way that some folks put it. What they mean is that they want their life to have some quality - and usually they mean some ability to carry on relationships with others.

There are, however, some times when the use of these highly invasive technologies and techniques is appropriate and a choice made by families. I’ve been around when a family decided to keep a loved one who showed no signs of brain activity alive on a ventilator and other devices for a period of time so that the family could gather and say their last good byes. In another case life was artificially sustained for a period of time so that maximum organ transplant could be arranged. In both of those cases the decisions made by family made sense to me.

I’ve also been present on multiple occasions where a decision was made to withdraw life support. It isn’t at all what some people imagine. There’s no switch that gets thrown or plug that is pulled out of the wall. The withdrawal of a ventilator, for example is a careful procedure done with attention to the comfort of the patient. Because the tubes cause some discomfort there is often a sense of relief from the patient when the procedure is done. Care is given to clean up the places where tape and other adhesives have been attached. The machine is detached from the power source and removed from the room only after the care of the patient has been completed.

I also have witnesses many cases where the temporary use of life sustaining equipment has been a route to healing. The use of life support is necessary for short term recovery. Last fall we faced that decision with my wife. She experienced a severe reaction to a medicine administered in the hospital and her heart stopped. Prompt CPR and the use of a defibrillator got hear heart going again and her breathing restored, but she was supported by a ventilator for about 24 hours during that long process. Her recovery is now complete and she is able to life a full life, return to work, exercise daily and soon will not even require any medicines. Without the machines she would have died. With them we have this wonderful gift of ongoing life and relationship. A simple “Do not Resuscitate” order would have been out of place in her particular situation. That order might make sense for someone of a different age or with different life circumstances or different health conditions.

Care decisions are complex. They need to be made in context. And sometimes, as was the case with my wife, they need to be made very quickly. A simple advance directive such as our decision to not place a “do not resuscitate” order when my wife’s hospitalization began can be very important.

I always make sure to tell people how they can change their advance directives. If you change your mind, you don’t have to be “locked in” to a decision that was made at a different point in your life. Conversations about life and death and care need to occur on a regular basis with loved ones who will be making decisions in the case one is incapacitated. Perhaps the most important legal document is a durable power of attorney for health care decisions or another clear statement of responsibility for decisions in the event one is unable to make them for her or himself.

As my family has discovered on several occasions these decisions often come up very quickly. You need to make a decision about a surgical procedure or an implantable device quickly in order to get maximum effect and assure the best outcomes. Having talked about them in advance can make a big difference when a health crisis appears.

Please talk to your loved ones. Then have the conversation again as your thinking and circumstances change. Make your wishes known.

Copyright (c) 2020 by Ted E. Huffman. I wrote this. If you would like to share it, please direct your friends to my web site. If you'd like permission to copy, please send me an email. Thanks!