How to Talk to Your Parents about their End-of-Life Wishes

The 15 minute conversation that can prevent a lifetime of guilt

By Eleanor Tanno, M.D.

When someone is critically ill and in the hospital, physicians usually first consult their family members about the type of medical care to provide. If a spouse is not available, adult children are typically the next in line for these questions. If you were asked about your parents’ end-of-life medical wishes, would you know what to say? If you are like most families, you have not had these conversations and would have no idea.

How to get started with end-of-life conversations?

Any event where families gather may be a good time to discuss Advance Directives. I know, I know. A lot of people avoid this conversation because they dread it. Who wants to talk about death, especially at a cheerful family gathering?

Keep in mind you may be making these decisions, regardless, for your family members one day. It is so much easier to make these tough calls if you’ve discussed their wishes. If you have, you are able to be guided by their own decisions during this already challenging time. Knowing that you are following their wishes can bring great solace.

You might be thinking, my parents are pretty healthy and it seems too soon to discuss this. Hopefully that is true, but unexpected things can happen. In the world of Advance Directives, the saying goes “it always seems too early until it is too late.”

You are not alone in your discomfort around this conversation. However, most people are actually receptive to these talks. In fact, according to The Conversation Project¹, 92% of people say that talking with their loved ones about end-of-life care is important and 95% of people are willing or want to talk about it. However, only 32% of people have actually had these conversations. If you are worried about upsetting your loved ones, 53% of people say they would actually be relieved if someone else started the discussion.

How to open the conversation with your parents?

As with most things that are hard, it is better if you do some prep work. See below for three guides that can help you prepare.

As for the conversation, pick a quiet time when you are not rushed. Many people find it easier to have tough conversations while they are doing something so maybe bring it up while you go together for a drive, a walk, or while you are cooking or cleaning up. You may also choose to have this conversation with one parent individually, or both together.

Start with a lead in and give them a heads up you plan to bring up something challenging:

“Mom and Dad, I want to talk to you about something that has been on my mind and is more serious.

Have you created a Will?”

Most older adults have created a financial Will, or at least have thought about it, so this can be a good opening to the intended conversation. Of course, you are not asking about the financial part, but this orients your parent that this is a discussion about end-of-life preferences.

“As part of that Will, did you discuss any decisions around end-of-life medical wishes, such as a Living Will or an Advance Directive?

Yes? Can you tell me what it says? It occurred to me that I might be left to make medical decisions and it would be helpful if I knew about the kind of care you might want.”

Now you need to just listen.

It’s a spectrum and you just need to know where they fall.

Most people will fall at one end of a spectrum and either say something like “I don’t want to be a vegetable” or will say “I want to be alive as long as possible.” This is the difference between a more minimalist or maximalist approach, respectively.

This is a great time to explore this a little more.

Ask open ended questions – what is important to you in your quality of life? Have you seen anyone who has had a good or bad end of life? How do you picture the last 6 months of your life? The last month? The last few days? Ask about their Litmus Test – they would want to be kept alive as long as they could still ____.

As mentioned, it might be a good idea to review some guides before this conversation. I recommend 3 possible guides to see different approaches, but looking at even just one would be very helpful. All of these guides are just a few pages and are very user friendly. (I am not sponsored by any of these guides.) Additionally, there are lots of other great resources.

1. The Conversation Project – There is an informative initiative called The Conversation Project which offers materials for non-medical people to have these conversations with their family members. They focus their questions on values and defining quality of life.

2. Advance Directive from Cedars Sinai Hospital – Another great resource to review prior to this conversation was created by the Cedars Sinai Hospital. They have a lot of helpful information and a very easy to use Advance Directive form that acts as a simple-to-use conversation guide, but also a place to take notes. This Advance Directive is designed for California residents, but is a great place to start this conversation with your family no matter where you live.

3. My Five Wishes – There is a third guide, “My Five Wishes” which is actually accepted as an official, legal Advance Directive in 46 states. However, this is a document you need to purchase. It is only $5, but you have to plan for that.

Pro tip: take notes during the conversation

During this conversation, you may want to take some notes. It can be helpful to write down some exact quotes. You may even want to fill out one of the documents listed above. Remember, the conversation is the most important part of planning end-of-life wishes. You will be so glad one day that you had even a 15 minute discussion.

Even just the gist of this conversation will serve you well in the future. Just taking home a few “pearls” from this conversation will be immensely helpful. Comments like “I don’t want to be a vegetable” or “I’d never want to live in a nursing home” or “I always want to be able to bathe myself” can be extraordinarily helpful in guiding you in the future.

Now that you’ve talked about it, what next?

Again, the conversation is the most important part. However, it is helpful if your family members put their Advance Directive in writing. This process varies a little by state, but the AARP has a list of the state advance directives. I have a step-by-step guide on putting together an Advance Directive. If at any point, you need help, the family member’s primary care physician can direct them to the appropriate documents.