7 Steps for Talking About End-of-Life Decisions

7 Steps for Talking About End-of-Life Decisions

I can't tell you how many times people have come in after experiencing traumatic grief and loss, and it is the end-of-life decisions that are keeping people from processing the actual loss.  

  

Why don’t we talk about End of Life Decisions?

The problem that most people don't realize is that we all are thinking about it, whether or not we talk about it. I will have thoughts about how to handle decisions should something happen to my spouse or my parents, that's a guarantee. 

Some people will avoid continuing the thoughts at all costs. Sometimes it is with distractions, changing the subject. Or it can be by justifying their avoidance (like saying, “it won’t happen tomorrow, so don’t worry about it”). 

However, this approach can actually lead to intense anxiety for both me AND my parents or spouse. Because we both know, whether consciously or unconsciously, that we are not on the same page about end-of-life decisions. 

Does my mom want to be cremated or buried next to her mom? What things does my dad want me to keep and pass down to my children? What stuff would my parents be okay with me selling at an estate sale? Does my spouse want a big funeral with the procession to the graveyard or a small ceremony, just me and our kids, spreading his ashes? 

If we don't have these discussions now, while they are alive, then we will be questioning every decision we make when they pass away. 

I had a friend whose mother had passed away; the mother had rooms FULL of stuff, and a lot of it looked like junk. The problem was, we had no idea if it was junk or if it had sentimental value. My friend went into a downward spiral around what stuff her mother wanted her to keep and what stuff her mother considered junk and would have been okay with donating or selling it. 

My friend was so overwhelmed with the thought of sifting through the boxes of stuff, she ended up renting a very large storage unit. She continues to pay for it to this day, almost 8 years later, because going through the boxes AND processing her grief is too much for her to handle. 

All because they never had a conversation around what to do when her mother died. 

  

What makes talking about end of life decisions so hard?

When it comes to having these discussions, we often struggle the most because we simply don't know what to expect. We don't know, for sure, without a doubt, whether our loved one will want to be cremated or buried, and we don't know how we will handle the thought of having to make that choice. 

Look at our society right now, with the unknown around COVID-19 and Shelter in Place restrictions. It is causing a panic that we don’t know how to face as a society. 

Now take that anxiety of the unknown, mix it with the emotional attachment you have with your parent, multiply it by the medical or environmental risks they have, and you have some idea of the intense fear we have around these kinds of discussions. 

But the thing with fear is this: when we shine a light on the object of our fear, we find out that it isn’t as scary as we thought.

  

So where do I start?

  

Step 1: We need to have a good SPACE to have the discussion. 

Is your partner or parent someone who has deep conversations easily? Then having the discussion at home, where they can show you their own thoughts in a place they feel comfortable.

Or do they struggle with these kinds of discussions all together? Maybe going for a walk so you don’t have to make eye contact would be more helpful for them. Or perhaps grabbing a coffee and sitting on a park bench, side by side, while watching some squirrels play. 

The important thing to remember is that while this conversation will be hard for you, it will be more difficult for your loved one to imagine their own death. So you need to make sure you have a space that is going to help THEM feel more comfortable, even if it isn’t the most comfortable for YOU

  

Step 2: We need to make sure we have the TIME to talk. 

This will not be a quick discussion if you have never had it before. 

If your parent or loved one is a talker, or feels their emotions deeply, you will want to reserve a couple of hours for this conversation. 

Especially if you are a person who experiences emotions deeply (like myself), you will want some time after the discussion to process your own response. 

If your loved one is not a talker, you will need the time so that you can SIT IN SILENCE while they think about and share their own end-of-life decisions. I cannot stress this enough. If your loved one is not a verbal processor, BE OKAY WITH SILENCE. It is in the silence that you provide that they will be able to process their emotions or thoughts, and then feel safe enough to share them with you. 

  

Step 3: We need to ask open-ended questions.

When we have difficult discussions around end-of-life decisions, we need to be open to all kinds of possibilities. 

If we ask “yes or no” questions, or even “this or that” questions, it can block people from sharing their own ideas that may not fit into one of the boxes you have provided. 

For example, asking, “Where would you want your ashes spread?” is a “this or that” questions; you are having them decide between here (this) or there (that). And what if someone wants to be cremated but doesn’t want their ashes spread? What if they want you to turn their ashes into jewelry, or plant them in a garden? 

Instead, ask questions like, “What would you want us to do with your ashes?” “What” or “how” questions will be the most helpful here. 

  

Step 4: We need to reassure them that we support their end-of-life decisions.

Yes, this will be hard if you don’t actually like the decisions they want to make. 

Maybe it is hard for you to even consider that your parent wants to be cremated, because you want to have a gravesite to visit on birthdays and anniversaries. Or maybe you want them to be cremated so you can take them with you when you move around the world, but they want to be buried next to their mother. 

What we have to remember is this: this isn’t about me. It’s not about me, or you, or cousin Jerry.

This is about the one person we love. And we can show them how much we love them by supporting them in talking about some of the most challenging decisions they can make. 

Step 5: We need to write it down.

In all seriousness, I am a forgetful person. If I don't write it down, my brain will not remember what details were discussed. And I know I am not the only one out there. 

When we write it down, yes, it becomes more final and real. But guess what? Death is final and real.

I can't beat around the bush with this one. You NEED to write down their wishes. They can write it down and give it to you (or tell you where it is stored). You can write it down while you talk with them. You can have a lawyer write it down and get it notarized. It doesn't matter. 

Just get it in writing.

Step 6: You need to determine if your loved one needs to have a will, trust, or Advanced Directive completed. 

I am not a lawyer. I will not tell you about the difference between wills or trusts, and truth be told you don't want me to. I will make it more confusing for you.

You need to discuss this with a professional. Someone who knows the ins-and-outs of these documents. I have a friend who focuses her law practice around estate planning: you can check her out here

Now I can tell you that an Advanced Directive will be CRUCIAL for everyone, yourself included. You have probably heard your doctor ask about this.

Advanced Directives identify the people (you should have two) who will make decisions when you are unable to.

For example, if I get into a car accident, and I fall into a coma, who will make the medical decisions? Because doctors need consent on most procedures and medications. My advanced directive will tell them who I have decided will make those decisions.

And you better believe I have talked about it with those people! (Hint: you should, too).

Step 7: We need to plan to review the decisions annually. 

Yes, you read that correctly. This is not a one-time discussion (or, at least, we hope not). 

We need to check in with our loved ones every once in a while about end-of-life decisions. I suggest annually, because every other year can stretch into every five years and then into never again. 

Also, having the discussion every year can normalize the conversation in a way that makes it almost easy to discuss.

My spouse works in law enforcement, where the risk of death is very real for us. Every year, we go over all of our end of life decisions in order to address any changes that need to be made (such as wills, trusts, and Advanced Directives). 

This way, any anxiety I normally feel around the potential for death is not intensified by the unknown, but rather it becomes manageable because I have the solutions already figured out. 

  

  

Death is a natural part of life. It is inevitable, no matter how much anxiety we have around it.

We have to decide, do we want our anxiety around death and transitions to be so extreme that it becomes a barrier to processing our grief? Or do we have the conversation, knowing it will be emotional NOW, but also knowing we will feel peace after our loved ones die?

Trust me on this, from personal experience, HAVE THE CONVERSATION.

  

  

  

Take care, friends!

Alisha Sweyd

  

  

  

  

Photo by Saad Chaudhry on Unsplash