An advanced care directive can help you and your loved ones be clear about your wishes, should you no longer be able to speak for yourself.
Question: What are the important questions to ask and answer on a health care proxy?
Leslie Michelson: This is an excellent question and one that I wish more people would consider now, while they are healthy. People approach sickness in different ways. Some patients prefer to accept the disease progression; others want to try the standard treatment protocols, but if their disease advances beyond hope, they would forgo risky or costly treatments. Then there are those who take an aggressive, go-for-broke approach.
How you approach an illness is completely up to you—and it can change with the circumstances. As long as you are making informed and thoughtful choices about what you want, there is no wrong approach. The decision of how and when (or if) to treat is yours alone.
But it’s important that your caregivers and family members are clear about your wishes ahead of time, so that they are never in a position of having to make painful guesses about what’s best for you.
One way to make your wishes explicit is by completing a health care advance directive, a multipage document in which you provide basic instructions for your care.
An advanced care directive often includes a living will, which states treatment preferences if you are no longer able to make decisions or speak for yourself, and a health care power of attorney, in which you appoint a proxy to make decisions on your behalf if you cannot. The nonprofit organization Caring Connections provides state-by-state advance directive forms that you can fill out, and a wealth of information and guidance about important things to consider.
Those diagnosed with terminal illnesses may also want to complete a more detailed Physician Orders for Life-Sustaining Treatment (POLST) form, which a patient and caregiver discuss and complete together. A POLST carefully spells out preferences for such medical interventions as CPR, tube feeding, antibiotics, do-not-resuscitate orders, and comfort. (You can find your state’s POLST form here.)
This can be a very difficult topic, yet it’s so important to decide what you want as early as possible, and then have a conversation about your choices with the people who are most involved in your care. You can say:
I want everyone to understand what my wishes are. I know you may have different views, and I’m happy to talk about them now. But please understand that it will make it much easier for me to go through this if I know that you understand what my goals are, and that you will respect them.
I would also suggest a visit to the website of Ira Byock, who is a leading palliative care expert, and has written some wonderfully insightful books about improving care at the end of life.
Finally, if your family is facing an end-of-life issue, it can sometimes be comforting to have a trusted internist weigh in with guidance. They’ve been down this road before. They can often bring clarity to a difficult situation.