This Wednesday, April 16th, is National Healthcare Decisions day. I'll be leading a workshop at my church to discuss Advance Directives and having conversations with family and friends about our wishes in the event of life-limiting illness or injury. It is also a time to open up conversation with loved ones who may be facing these issues. Almost all of us will, at some point, need to make or help make these decisions for someone we care about.
Here are ten points about end-of-life decision making. At the bottom of this post are some links to other resources. Email me if you have any questions.
Ten Points about End-of-Life and Advance Directives
1.Think about what quality of life means to you.
Is it enough to be biologically alive even if machines are needed? If you needed machines to exist, would you want that long-term?
Do you have to be awake for life to be worth living? How awake?
How aware do you need to be to consider it worth continuing? Does your mind need to be fully intact?
Are there certain activities that define an acceptable quality of life for you? For example, “If I can't talk [or eat, or play golf, or listen to music, or go the bathroom by myself] then I may not want to prolong life any further.” Think about whether there's something without which life would not be worth living.
Everyone's answers are different—there is no right or wrong here. For some, not being able to interact with family might be a threshold. For others not being able to perform basic activities of daily living might cause them to make particular choices regarding health care. These are hard questions to answer because as illness or age take things away from us, we often find life still holds enough to keep us wanting to be here. It's important to understand that, in general, we're talking more about acute and clearly life-limiting illness or injury, not chronic, slow progressive processes—though age also is a factor. Decisions you would make at 62 are different than ones you might make at 92. Finances can also play a role here. Many people express concern about being a financial burden to family. Setting can be a part of the decision-making mix. Some do not want, under any circumstances, to live in a nursing home. There is no way to answer all the questions ahead of time, but we can give some thought to the broad categories of possibility in an effort to be more prepared.
2.Have The Conversation with family and friends. Talk about what you think and want in the event of catastrophic illness or injury. Few statements are more powerful than a family member or friend saying to hospital staff, “We spoke about this last Thanksgiving. Jane said she would never want to be kept alive like Terri Schiavo.” Be assured that any discomfort felt now will be more than offset by the peace of mind you've helped provide to family and friends when the time comes for these incredibly hard decisions.
3.Have Advance Directives in place. Encourage other family members—adults of any age—to have these documents in order. Ask older relatives what they want. Give copies of your Directives to family, close friends, and your physician. Revisit your Advance Directives and Financial Will once every decade of life.
4.Have realistic expectations for medical treatment.
CPR survival rates on TV can be as high as 85%, while real life is less than 15% overall and less than 2% for the elderly and/or those with more than one significant medical problem. Those who survive are often worse than they were before and may have brain damage.
Medical technology is such that we can keep bodies alive even when the disease process cannot be stopped and death is inevitable. We often need to make choices about how prolonged the dying process is. Again there are no clear answers. One might, for example, choose to keep someone on life-support until a family member can arrive to say good-bye.
5.Understand that doctors are, for the most part, trained to save lives at any cost. The family often needs to look to themselves for guidance at end-of-life. Doctors will often present all that can be done, but they are not always good at clarifying what should be done. It is reasonable to ask direct questions like, “How likely is this treatment to prolong life with good quality?” Medicine during critical illness is increasingly the role of specialists who sometimes focus on one body system. Ask for the big picture: How is the patient as a whole doing?
6.Artificial ventilation and artificial hydration and nutrition is transitional help for ill people, but often is not appropriate at end-of-life. The natural cycle of death usually includes a decreased need and desire for hydration and nutrition. Providing these items via IV or other non-natural routes at end-of-life can often increase discomfort. If someone wants to eat or drink, they should, if at all possible, be given food and drink. However, for the unconscious person who is in the process of dying, giving these substances by artificial means often creates more suffering. As the body shuts down, it has little need for this material and forcing it in may short-circuit the body's natural way of making us comfortable as we die.
7.All medical treatment has a goal. If the goal isn't being achieved, the treatment can be stopped. The quality-of-life questions discussed in #1 above can help you identify what your goal is, for yourself or for a family member.
8.You, not the doctors, are in control of your health care.
9.In general, there is no reason for a patient to be in pain, anxious, or uncomfortable at end-of-life. As our goal moves from cure to comfort, more options may open up in terms of palliative (symptom management) medicine.
10.Live your life.
Here are some links to resources: