George has dementia and is no longer able to make medical decisions for himself. Physically, George is fairly healthy, but has developed some heart issues that would benefit from a pacemaker. Prior to developing dementia, George appointed his niece Amanda to be his Health Care Agent and drafted a Living Will, wherein he stated he did not want any heroic measure in the event he was in an end-stage of a terminal illness. George told Amanda “I don’t want to be hooked up to all those machines. Just let me die!” But that was the extent of their conversation. Amanda was close to George when she was younger, but didn’t have a chance to see him too often in recent years. Now she needs to decide whether Uncle George should receive the pacemaker, which would probably prolong his life. But would he want to prolong his life given his advanced dementia?
I always talk to clients about how important it is to communicate their wishes to the people they appoint. Most clients say that they have and emphasize what they want when the end is near. But what about that gray area in time? The time between when you can make your own decisions and when you are actively dying? If George was able to step outside of his disease for a minute, would he decide to get the pacemaker knowing that it would likely prolong his battle with dementia? Is it fair to expect Amanda to be able to make that decision without having discussed this situation with George?
Do you think that you would want a pacemaker if you were in George’s shoes or a similar situation? What if you needed a different type of procedure that you’ve never even considered? It’s important to decide what you’d want and communicate with the people you’ve chosen to be your decision makers in the future. These are serious, often uncomfortable discussions to have. But they are necessary to ensure you get the care you would choose for yourself. You do not want your agent left making serious medical decisions they may not feel adequately informed to make. These conversations need to cover not only the big stuff like what happens when you have a terminal disease, but the in between situations as well. While the end-stage decisions can and should be included in your Living Will, it is impossible to draft a document that will encompass every possible medical decision your agent might face.
So how should you approach these discussions? There is no right answer to this question. Only suggestions. Deciding and communicating your wishes is a process, not a once and done plan. What you want now might look very different 5, 10, 20 years from now. As life changes, your conversation should continue. Communicate your values, goals, and priorities for your healthcare. Looking for more information on how to effectively communicate your wishes? Check out The Conversation Project. This is a great resource to help you figure out where to start, how to talk to your family and your doctor.