My last two posts about advance care planning and palliative care have struck some nerves. I’ve heard from people who have successfully had these conversations and, more frequently, from people who don’t know how to begin. So, this week I thought I’d share some thoughts about starting the discussion with your loved ones.
You start. Many (dare I say most?) of us are worried about the end of life preferences for aging parents. It can be tough to start the conversation if your parents don’t take the initiative. So do the work yourself first and use your wishes to start the conversation.
It’s not a one shot deal. This is a process, not a single conversation. And it’s difficult. Start before it’s needed and take it slowly. Present the idea, share your plan, circle back around and try again. Most of these conversations start in response to a life threatening event, but all too often that’s too late.
Know your audience. Some people may be most comfortable with a one-on-one conversation. Others may want a family meeting. For some that may mean just family, for others close friends or health care providers should be involved. If you’re not sure who your loved one wants involved, ask!
Find a way in. The death of a friend or a relevant piece in the news might be a good way to start the conversation. Ask their thoughts and see if it leads to a deeper conversation.
Agree to disagree. Remember that you’re trying to learn about their preferences, not convince them to see things your way. It’s okay to disagree. Ask questions and try to learn why they think the way they think. And share your thoughts and wishes honestly.
In Atul Gawande’s book Being Mortal he tells the story of a man who said, on the eve of a risky surgery, that he would be okay with being paralyzed if he could eat ice cream and watch sports on television. This was completely unexpected to his daughter. When the surgery didn’t go as expected and she had to make a decision on her father’s behalf, she knew what he would decide because she had the conversation with him. And, most importantly, it was different than the decision she might have made otherwise.
Work backwards. It’s hard to think about end of life wishes in the abstract. Once the conversation is underway, work backwards from the types of issues that might reasonably arise and what decisions would need to be made in each. Begin the Conversation has a nice advance care planning workbook that includes a variety of scenarios to get you going. The National Institute on Aging has good resources about this as well.
I’m sorry. There’s no way to make this easy. But it’s worth it.
Most people say they don’t want to be a burden to their family with difficult decisions at the end of their life and yet most haven’t done any advance care planning.
Most family disputes around elder care or end of life issues that end up in court could be avoided if wishes were clearly documented in advance.
Most people say it’s important to put their wishes in writing, but very few actually have.
Do you have other suggestions for having this conversation? Or stories about experiences where an advance care plan made a big difference? Please share.