By Farrah N. Daly MD MBA
Associate Medical Director
Capital Hospice and Capital Palliative Care
Falls Church, VA
As a hospice neurologist, I have been with many families as they tried to make decisions regarding the care of a critically ill loved one. It is a difficult time on so many different levels. I see family members struggle, agree or disagree with each other, and bond together or split apart around the crisis.
The families that do best — and by "best" I mean the ones that are unified in their decisions, seem at peace with their choices and don't spend this awful time fighting with each other — are the ones who feel confident that they are honoring their loved one's wishes. They know that they are not making their own choice, but rather representing the choices of their loved one.
What is advance care planning?
Advance care planning means discussing with your doctor and your family how aggressively you wish to be treated in the event that you can not make your own health care decisions. Would you try anything to live longer, no matter the physical burdens? Would you try nothing? Or something in between? What does "living" mean to you?
Advance care planning typically results in a document that lists your preferences about specific things like staying long term on a ventilator or receiving artificial nutrition. It also designates a person who would make medical decisions for you in the event that you couldn't do it yourself.
There are too many variables to predict every possible situation in advance; and more important than the document is the discussion that it provokes with your doctor and your family, so that your family can understand how you define "living" and what is most important to you.
The conversation is important because when people are critically ill, they are not likely to be able to make and communicate their own decisions. They are often confused, if not unconscious. Their family members, or a designated medical decision maker, are the ones who make decisions.
They might choose to continue aggressive treatments, they might choose to focus on comfort only, or somewhere in between. The critically ill person might live or might die. Regardless of the outcome, the family that is less tormented is the family that can stand together and say "we know this is the approach our loved one would choose."
This is the value of advance care planning. Yes, it increases the chances that your treatments will be consistent with your own ideas and values. More importantly, it gives your family guidance, and ensures that they will always have your support.
Tools to help start the conversation about advance life care:
Learn more about advance care planning:
What your neurologist is reading: