Let’s chat about advanced directives and end-of-life planning. I know, I know, not a very sexy topic to talk about. But if you’re reading this, then I encourage you to stick around for a few minutes and read on. Why? Because every single one of us will inevitably die (shocking news, right?). AND many of us (if we haven’t already) will end up being a decision maker or part of the decision-making team for a loved one.
The cruel thing about life is that it hands us a shitty card more often than we’d like. We may find ourselves in the role of medical decision-maker when we least expect it. A parent has a sudden stroke and can’t speak for themselves; a sibling has complications in surgery and names you Healthcare Surrogate at the last minute without informing you; or your unmarried, only child, best friend suddenly dies in a fatal car accident. If we haven’t had any conversations with our loved ones related to what kind of medical interventions we do or not want; our preference for funeral vs celebration of life vs cremation or some sort of combination of these; what kind of pain management is desired; and finally WHO we want in charge of communicating this information to our medical team, then we risk putting someone in charge that may not want the role, may not be prepared to answer these questions, or might make decisions based off of their own values and wishes, not yours.
In my personal experiences with family members who had a serious illness or were dying, I’ve witnessed the patient’s loved ones struggle with major decisions that doctors, nurses, and other staff are asking of them. What I’ve noticed is that these family members are unprepared to answer major medical or end-of-life questions; they don’t know what their loved one would want; and they inevitably disagree on what’s “best” for the patient. Yes, only one person is ultimately named the decision-maker. Still, in scenarios where families usually come together to support the patient, these decisions are often made collectively, for better or worse.
So how do we get better at talking about death and dying? Generally, these tough conversations are either avoided altogether or not had because of poor health literacy. I don’t blame anyone for not talking about medical emergencies or end-of-life wishes- I get it, it’s uncomfortable and strange to talk about one's own death- but not discussing these important topics only creates more stress and anxiety in situations that are already emotionally distressing.
In my opinion, holiday get-togethers are a good time to start these conversations. It’s a natural time for families and close friends to gather; everyone is in one place, so it lends itself well to dialogue; and if we’re honest, isn’t there at least one uncomfortable moment during a family holiday celebration? Why not be weird on purpose? So, given that your holiday parties are mostly enjoyable and with people you feel safe with, I encourage you to be the brave soul who is willing to get a bit uncomfortable. You don’t have to have an entire sit-down planning session (unless that’s how you and family roll), but begin by asking a couple of questions that get the conversation started. Keep it light, add some humor, and bring some resources (linked below). Finally, know yourself and your audience: if you’re a family that uses humor, maybe you bring a planner like the one below, F*ck! I’m Dead. Now What? Do you need a simple and clear guide? I recommend the Five Wishes Booklet. As a former hospice social worker, I’d give this guide out to families most often. Do you need a comprehensive guide with lots of questions and ways to approach this topic? Then check out The Conversation Project; they have several free guides you can print or download. Here are examples of questions and statements that gently open the door to end-of-life discussions, all taken from the resources listed below.
“I need your help with something.”
“What does a good day look like?”
“Even though I’m OK right now, I’m worried that something might happen, and I want to be prepared. Can we talk about some things that matter to me?“
"If something happens to your primary POA, who would be the next person you’d want to speak for you?”
“My wish for how I want someone to treat me is...”
“Let’s review these plans regularly so we’re all on the same page.”
I’ve had the privilege of supporting patients and families during my hospice work and while in private practice. One of the greatest gifts patients give their loved ones is taking away the guesswork and confusion about their preferences related to medical decisions and end-of-life care. I’ve worked with families who were open about advocating for their loved one’s wishes with the medical team; patients having the opportunity to die where and with whom they choose; and funeral/celebration-of-life details shared with those who matter most to them. All of that is possible for families when they allow themselves to get a little uncomfortable and come to terms with the reality that death happens to all of us.
I kid you not, when I worked in hospice, I would have adult children ask me not to say the word hospice around their dying parent because they didn’t want them to know they were…yes, dying. Let’s not be that person. Instead, let’s use the time we have with our loved ones now to begin these vulnerable conversations. Give yourself and others this gift. When the time comes, you’ll be able to focus more on quality time and comfort together. You’ll have peace of mind knowing you’ve shared your wishes with the people you trust the most. And if you end up being a caregiver, you’ll be able to focus more on your role of “loved one” instead of scrambling or making guesses about what they would have wanted.
So this holiday season and the ones to come, get a little uncomfy with your family and friends. Ask one or two of the questions this time and a couple more at the next get-together. I believe it’s the only way to normalize death and dying.
Illinois Health Care Power of Attorney
Maria Rubio-Moore
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