Including End-of-Life Talk In Your Holiday Plans


USA – The holiday season has dawned. Family members far and wide are reconnecting for parties and cookies by the fire. Gifts will be exchanged. The old recipes will make their way to the table. There will even be a glass or two lifted, perhaps some glogg.

And, hopefully, adult children and their aging parents will find some private time to have satisfying conversations about upcoming end-of-life health decisions.

I am not being a killjoy grinch bringing this up. Really, I am not. But there are realities. There is no getting around the basic fact we get old and then we die, that is if one is lucky enough to escape early calamity. The only question is how to die. When the time comes there will be countless issues that must be resolved, usually by family who in the best of situations know the wishes of the patient. But when these end-of-life questions have not been previously discussed, costs escalate and the well-being of all involved declines.

So, the issue is not whether to have these conversations but how and when.New research from the University of Kentucky suggests that what matters is the quality and not the quantity of end-of-life discussions. Furthermore, when attention is paid to the quality of the conversation then the result includes good feelings and stronger relationships. See, I told you I was not being a killjoy.

Allison Scott and John Caughlin, the authors of the just published research titled  “Enacted Goal Attention in Family Conversations about End-of-life Health Decisions, elicited end-of-life conversations from 121 older parent/adult child dyads. They then had them report on their experience of those conversations. Important patterns emerged within those conversations judged by the participants to have been satisfying and successful. The research demonstrated “that the quality of family communication about end-of-life decisions matters.” In other words, more is not better, better is better.

But what is better? How to have a satisfying conversation about end-of-life health issues? Based on the research, and an email exchange with Professor Scott, several guidelines emerged. Please keep in mind that if you and your family already have ongoing, satisfying conversations about end-of-life questions that seem to work for you please ignore what I am saying. You’re doing great. But if the topic is something studiously avoided or is often a source of tension and upset then the following just might be of real value to you and your family:

Value the person and the relationship first

When talking with an aging parent (or other loved one) let them know you value who they are (identity) and who they are to you (relationship). What’s most important is engaging the process with in a respectful intimacy-inducing manner more than coming to a definite conclusion about specific task content (like, for example, whether or not to use a mechanical respirator). In the language of the research monograph, one should recognize that “discussing end-of-life choices in a way that attends identity and relationship goals may be more important in determining conversational satisfaction than is actually reaching a decision.” All you need do is trust the process. If you have satisfying conversations trust you are creating space for all the questions that need asking and answering.

A “topic pyramid” for end-of-life health conversations

In the research Scott and Caughlin elicited conversation by giving their subjects 6 topics to discuss in sequence, from the easiest to the more difficult. Professor Scott was kind enough to share those questions. While they were used in the context of a research protocol these questions might also prove useful to you as a way to have the conversations that need to be had.

One: What health decisions have you made recently? What health decisions do you anticipate having to make in the future?

Two: Do you know someone who has had to make end-of-life decisions for themselves or for someone else? What was your impression of the person’s experience?

Three: Where would you like to receive end-of-life care? At home? Hospice? Hospital?

Four:  What life-sustaining treatments are acceptable or unacceptable to you? Why? (e.g., mechanical ventilation, CPR, dialysis, chemotherapy)

Five: How do you personally define “quality of life”? How do you define “reasonable chance of recovery”?

Six: “Is there anything else you’d like to discuss?”

And remember, the goal is to create a process in which there is ample respect and validation for what the other person thinks and feels, who they are and what your relationship with them is. Each question does NOT need a specific answer the first time it is asked. If you find yourself too focussed on the task and not enough on the person and the relationship then it’s time to turn to other holiday activities.

Make the topic routine

I asked Professor Scott about the advisability of having these conversations during the holidays. She once again emphasized that it is important to make it routine, to integrate the topic into the fabric of the relationship and family life. She told me “I think the holidays are a good time to talk about these things, but again, sitting down over turkey dinner on Christmas Day isn’t the best approach. Instead, bring up the topic more casually, and have a series of conversations about it.”

Don’t Wait

It’s best not to wait until there are emergent health issues. On the golf course or enjoying an afternoon in the park is a much better time for these conversations than while waiting in the ER for an admission.

Again, Professor Scott: “I think it’s best to talk about these decisions before they are imminent. If you wait until later, most people end up having to talk about these issues when decisions must be made soon. People’s ability to think through a choice is much greater when they are not distressed. In addition, introducing the topic now and checking in about end-of-life preferences every once in awhile makes the topic less threatening – it’s something that you touch base on from time to time. Waiting to have The Big Discussion at some point can be intimidating and overwhelming to people. Saying things like, ‘Hey, if you were ever in a situation like Uncle James, what would you want me to do for you?’ is much more manageable.”

Be Inclusive

The research looked only at conversational dyads, i.e., two people. I asked Professor Scott about larger groups. Again, her response was instructive:

 “Conversations can happen with any size group. Obviously with 6-8 people, you’re not going to have the same kind of discussion, but I think a mix of several different size discussions is a good idea. Talk one on one with your parent. Then talk with all the adult siblings in a family. Ask a fun ice-breaker question with all the extended cousins and aunts and uncles (“If you were lost at sea and someone was in charge of deciding how long to look for you, who would you pick and why?”). Again, since a series of conversations is the best approach, it’s best to have several conversations with several different sets of family members. This also helps “triangulate” what people are saying as you can check your perceptions and interpretations of others’ preferences when they say them again or when you hear them explain their wishes to someone else.”

If you have read this far take a look at the video below from Professor Scott. And with that let me be among the first to wish you a happy conversation-filled holiday season.


Originally published by Forbes, author Todd Essig.