The Most Important Thing We Don’t Talk About

Most of us have thought of it before, whether it was a dedicated meditation or just occasional fleeting thoughts. Many of us have experienced it, the heaviness of grief that comes about when someone close to us is lost. It is the subject of prayers, books and poems (and even comedy). In a way, it surrounds us. But in other ways, we avoid looking at it directly, like we avoid looking at the sun.

Why do we avoid engaging with our own mortality?

The reasons are different for everyone. Sometimes it is our own fear. If we invite the subject into the room, it will consume us. Or, some of us really do want to talk about it, but fear making others uncomfortable (I am often in this category). Maybe we’ve been taught that to talk about a worst case scenario, means giving up hope for the best case scenario. Sometimes we just don’t know where to start. Sometimes all we need is permission.

Whatever the reason, we as a society are not planning for our worst case scenarios. And we are losing out because of it.

Countless articles and books and blog posts have been written about this, much better than my own writing. Thankfully, more and more people see this and are trying to create a culture of permission to talk about serious illness and dying in a meaningful way. The permission is here if you want to discuss it.

But it’s still not enough. Let me give you just some brief facts:

-The overwhelming majority of Americans wish to pass away at home, but only a small portion of them actually get to.

-New York State has the lowest or second lowest use of hospice in the country.

-Even those who have advance care planning documentation on file, find them not being honored at the critical junctures they are planned for.

-Hospitalizations and healthcare related cost at end of life is exceedingly high, and knowledge of resources is low

I will also tell you from my experience, that there is significant mistrust, confusion and anger when navigating end of life issues that can lead to complex grief and put undue suffering on the person experiencing the illness and death as well as their loved ones.

And so much of it stems from not talking about it early enough. From not engaging with the thought, “what is my most important wish, once I can’t have everything?” And once we have those thoughts, not sharing them verbally with as many people as possible, and in writing.

You may hear this old phrase: “Hope for the best, and plan for the rest.”

It means thinking about what to do when things go bad, doesn’t mean not hoping for the good. There is room for both. But a lot of us are only doing one of those things out loud, and it is taking a lot away.

What are some ways we could be doing it better?

-Starting conversations early, to ease off on the pressure. Five minutes every day, or once a week, or just giving it space when it enters your head, is better than fighting it off with a stick.

-Actively engaging our doctors, with important questions about goals of care and treatment, from time of a diagnosis onwards (many doctors are uncomfortable with these discussions as well- most of us did not learn how to have them)

-Thinking about what we want in different scenarios

-Engaging with our loved ones, even generally, about thoughts on end of life and the afterlife, to normalize the conversation. This can be done using templates that exist through DeathCafe or DeathOverDinner, or just on our own

-Ensuring we have advance care planning in place once we know what we want- this includes having a medical power of attorney in place who we trust to enact our wishes based on our values- and talking to them about it

Let’s make sure we get the medical treatment we want and need, and nothing else. Let’s make sure we have the time we want, and not just time. Let’s make sure we are only going through pain we find valuable, and not unwanted suffering. It happens one conversation at a time.