(Odessa Sawyer is a program coordinator at the Center for Practical Bioethics, providing support for the Ethical AI Initiative, Caring Conversations in the Latino community, and other programs. Odessa graduated with her Masters in Social Work with a focus on macro and policy work from the University of Kansas in 2023. Her experience in the military and in other social service roles has enforced her belief in the value of the individual. This article first appeared online at the Center for Practical Bioethics and is used with permission.)
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Discussions about death are never easy. The subject is fraught with uncertainty, disagreement, and varied beliefs. Despite these barriers, it will happen to all of us. So why go through the discomfort of talking about the inevitable? What is to be gained by starting a family argument or going against belief systems?
If going silently into the night were an option, most of us would probably choose it. The reality is, in our current society that is not a choice. The pandemic was a collective eye-opener to the morality of being human. Instead of looking at death as an adversary, it could be viewed as an opportunity to heal wounds and allow those you care about to celebrate who you are in their lives when the moment arrives.
The process of having that uncomfortable talk, I’ve come to believe, is where the magic lives. I’ve seen it happen in my own family, as well as in guiding these conversations in the community. Sharing steps that have helped me will, I hope, also help to empower you to be the narrator of your own “sunset” chapter.
Be aware of your mindset
The first step to having this conversation is being aware of your mindset. When I was younger and about to deploy to Afghanistan, I had a mindset of fear, denial, and resentment at having to discuss my wishes if I came home to my family in a different physical condition. This mindset impacted the way I discussed my wishes.
Because I was laden with hostility and discomfort, those around me reacted to my feelings, not to the details I was expressing. When, for example, I tried to discuss my wishes with my mother, who was listed to be my executor, it put her on the defensive to protect her child from this discomfort. My approach – in a mindset of fear and denial combined with her protective attitude – shut down all lines of communication. The result: My wishes were never heard.
The unknown is scary. Knowing that your voice is heard and wishes are known is not only reassuring to those hearing it, but also offers you a path to evaluate what brings you joy, what memories you want uplifted, and what a “quality of life” means to you. I have found comfort in thinking of this discussion as a preparation stage – like preparing to have a child or welcoming a new pet into your life. Taking this approach, you can look at other areas of your life where you may have more certainty about what you value and trust.
For example, you know who you trust to watch your dependents, which doctors you trust, which clothes you want to wear, and which values you want to instill. Also, recognize that your mindset will fluctuate. Some days you are at peace with who you are and can focus on the beauty and natural flow of life. Other days you will feel loss and mourn that you will not be with those you care most about and moments you will miss.
Take small steps
As you work through these feelings, baby steps may be helpful.
One step to finding the motivation and strength to narrate your sunset chapter is by collecting the items and documents you want in your “go bag.” Find a time and place to write down the things that bring you joy. Think about the blanket you curl in when your stomach hurts, the cardigan you wore for your first job offer, the necklace you received for your wedding night — whatever brings a touch of warmth and calms your heart.
You might be asking, what does this have to do with healthcare decisions for my end of life? Studies show that people who are terminally ill and have planned their sunset chapter receive less-dramatic clinical interventions. Having joy items for your go bag may make it easier to share your wishes, medically and non-medically, with those closest to you.
Make it comfortable
The sunset conversation is not easy, and every relationship will dictate the unique particulars that may need to be present. It can help to start thinking about what you need, how to have the talk, and even the time and place it should occur.
One strategy I use while guiding these conversations is to have food. This serves multiple purposes, the first being that it meets a basic human need required for us to be present and focused on you.
Having a meal or snack available gives you the stage. For example, there are limited interruptions while someone is chewing, and conversation happens at natural pauses between bites. The final reason for eating is that natural chemicals are released in the body, dopamine in particular, which has a soothing effect that can make hearing about death less jarring.
Try multiple sessions
Another factor in a sunset conversation is to do it in multiple, short, intentional sessions. Allowing your wishes to be heard – then letting the other person digest them – can allow them to go through the stages of grief without facing you immediately. Grieving blocks the intended message from being heard. If time allows, have the talk in small bits.
Lastly, where you talk to someone about how you are designing your sunset chapter is just as important as whom you are talking to. Just as you would discuss any important life event, make sure it is comfortable, private to your standards, not too loud for ease of hearing, and does not bear too many distractions.
Just because we are talking about death and dying does not mean it has to be stuffy, cold, and somber, but you do want to ensure you can get your point across and feel heard.
Death is a natural part of life, and so are the feelings that accompany the moment. There is no “set in stone” rule book for talking about the final chapter of life or the “perfect” steps to prepare. The things that I’ve mentioned are just a starting point to help in feeling comfortable to take charge. The goal is to focus less on the moment of death and more on the legacy you want to leave.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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Very helpful suggestions. Great to normalize these conversations as much as possible.