I have been thinking about this for a while, and even more since I recently retired from practicing medicine (but not from teaching) and realized while working through our retirement plans that my current will contained instructions about who should care for our young children if my wife and I would both die. Well, those children are now 40, 37 and 34. They have their own children and will be fine on their own when we die. I need a new will and one part of that is that I need to decide who will make medical decisions for me when I am unable to do so for myself. All three of our children share my values and will make excellent decision makers for me, but I want them to have something to go by, so they understand how I want those decisions to be made. After all, I have been a physician for over 40 years and I teach bioethics, so I should be able to give them some guidance.
My decision to post these guidelines publicly is in part based on what Ezekiel Emanuel did about 5 years ago when he wrote about no longer doing any medical treatments that focus primarily on prolonging life after he turns 75. As Neil Skjoldal wrote a couple of days ago, Emanuel’s plans are driven by his concept of what makes life meaningful. My concept of that is different. Being creative and productive are important, but meaning in my life comes from my relationship with God, and that impacts how I want medical decisions made for me. So, here is what I wrote to my children.
Principles for making medical decisions for me when I become unable to make my own decisions:
- Every human life has value because we are made in the image of God, so nothing should be done with the intent of ending my life even to avoid suffering.
- Even though human life has great value my eternal relationship with God has greater value than my life on this earth, and that relationship will continue after my death, so it is not necessary to do everything possible to prevent my death.
- Decisions about medical treatment should be made based on whether the expected benefit to me is more than the expected burden to me from the treatment. They should not be made based on an idea that my life itself is burdensome.
Examples of how to apply these principles:
- If I am dying and death is expected soon, no treatment should be done other than comfort care. Sedation is appropriate if needed to control pain or behaviors that are harmful to me or others. Comfort care can usually be done outside of a hospital, but professional caregivers should be used as needed.
- Simple treatments such as antibiotics for an infection and minor surgical procedures should be done if it is expected that I will benefit from them and there is little risk involved.
- Complex treatments such as ICU care, ventilators, chemotherapy, major surgery and other invasive procedures should only be done if I have a reversible condition and it is expected that they will only be required on a short term basis. Such treatments can be done on a trial basis and stopped if they are not effective. This type of treatment should not be done if I have a condition that I am dying from and the treatment will only prolong the process of dying.
- The use of feeding tubes can be a difficult decision. Feeding tubes may be used if they can be used on a short term basis to help me recover from a reversible condition. If the condition I have is irreversible, I would prefer to be fed by mouth to satisfy my hunger and thirst as well as possible, even if feeding by mouth may have some increased risk.