As a longtime professional chaplain, mostly serving people with cancer and their loves ones, I have been invited into many family conversations about making health-care decisions for a loved one at the end-of-life. Unfortunately, all too often, these conversations were held absent the person who was dying because that person was no longer able to participate. And too often, these conversations focused on trying to come to consensus in the family about “what mom would want.” And since no one had ever asked mom directly, the family was left to guess as best it could.
Sometimes these conversations were quick and everyone agrees readily that “Mom wouldn’t want to live this way” but often they were contentious or at least didn’t result in a way forward that everyone was confident was the right one. These endings often left family members second-guessing themselves long after their loved one’s death.
Many people think that the solution to this issue is to have the proper documents in place. Have a will, have your state-approved advance directive document and health-care proxy filled out, share those documents with your physician and your family, and make sure your proxy understands what your wishes are as expressed in those documents. These are all wonderful and helpful steps and everyone should take them, but it is a mistake to think that this is enough.
One night a few years ago, my two twenty-something sons came to hear me give a talk as part of a panel on dealing with these issues. They are backup proxies to my wife and I and we have done all the steps mentioned above. After the talk, my older son, obviously speaking for the two of them, said very nicely that the talk was wonderful, but I had not been living what I was preaching. Being a good chaplain, I resisted being defensive and tried to understand what he meant. What he quickly got me to understand was that while the documents were great and our instructions around them were clear, he still did not understand enough of what decisions we would want him and his brother to make if they had to. In short, we had not “talked.” We had not had a real conversation. We have now “talked” seemingly to their satisfaction. However, I am no longer under the delusion that this conversation is over. Nor should it be. Just like any good lawyer tells you to review your will every few years, we need to keep this conversation going. How could our sons be sure that our wishes are the same as they were several years ago?
Having been involved in many of these conversations, I know how to do them. This doesn’t make it easy or comfortable but I know the drill. But what if you don’t have his experience? There are many good brochures but their overall value is limited. But help has now arrived!
The Conversation Project is a one stop shop for those who want to see how others like them have dealt with “the conversation”. It much more than a “how to”. It is a community of those who both learn from each other and teach each other and understand that this is difficult stuff. It is practical advice you can use from people who have been there. It is mostly not professionals (although the ones they have as advisors are the absolute best) but reflects the wisdom of people who have “been there and done that”. Kudos to Ellen Goodman, the driver behind this initiative. Even if you think you have these issues covered for your family, and especially if you are concerned that you don’t, this is the place to go.
The Rev. George Handzo is a board certified chaplain and senior consultant for chaplaincy care leadership and practice at HealthCare Chaplaincy in New York.