There's No Time Like the Present

It's never too soon to plan for the rest of your life.

Posted Sep 29, 2017

Pixabay
Source: Pixabay

Think about your average day. How much time do you spend worrying about things that never come to pass? Will my daughter fail chemistry? Will my husband catch his flight? What if my neighbor has a fire? Or, we focus on things that just don’t matter that much in the long run. Will I ever lose that last five pounds? Did I reveal too much on that last Facebook post? 

We spend endless time worrying and planning for things that never come to pass, or are ultimately inconsequential. But we spend almost no time preparing for the one thing that will happen to us all. And which can affect us profoundly, as well as those we love

We will all someday die. 

Possibly it’s simply human nature to avoid this fact. Some would argue our entire advertising culture, which glorifies youth, is built around this denial. And then there is television, where most of us get our ideas of what health care looks like. When most of the patients on Grey’s Anatomy are miraculously saved by Dr. McDreamy, it’s hard to believe that there may come a time when that just isn’t possible. 

In my work as an ICU and palliative care physician, I have seen hundreds of people

IHI
Source: IHI

die. All kinds of people: old and young, the chronically ill and victims of trauma, rich and poor, educated and not. But there is one common theme that binds almost all of them. Very few have considered or planned for this event ahead of time. And so when I am standing at the bedside with their worried loved ones, I often lack a roadmap for how to approach their care. 

You might be thinking: Seriously? Plan for my death? I’m not ready. I’m healthy. I practice positive thinking. I have too many other things going on right now. It will upset my family. 

As an ICU doctor, I can tell you two things for sure: (1) You will, sooner or later, die. And (2) You will certainly have a better death if you plan for it. Those of my patients who have planned die with more ease and peace, with less suffering, and usually with less technology than the default treatment. This is not only true from my personal experience; the data is compelling, too. Research shows that patients who have spoken with their doctors about end of life preferences have better lives, and deaths, than those who don’t.  

spire2030
Source: spire2030

Given that reality, here are some pointers: 

1. Identify what is important to you in life. That way, you’ll know what kinds of states you would, and wouldn’t, be willing to put up with in your final weeks. This is a very personal set of preferences and everyone has to make his or her own choices. In my book, Extreme Measures, I explore a variety of cases where patients expressed a variety of preferences. For some, the ability to communicate was an essential part of life, and they would not want to have heroic measures used if they wouldn’t be able to communicate with their loved ones. For others, full physical independence was an essential outcome. These patients were very clear that if we couldn’t meet these goals, they didn’t want to be on life support. You should know where you stand. And you should know where your loved ones stand, too. It is likely that these preferences will continue to change over time, and it is important to revisit them every so often. One of my friends plays a game called “Go Wish,” which helps to elucidate these preferences and values in a comfortable way, with her husband every year on their anniversary. 

2. Communicate these preferences and values to your loved ones. Play Go Wish.

coda alliance
Source: coda alliance

Talk about Aunt Mae’s death—what went well and what didn’t. Then, talk to your healthcare team, because you might someday be in a situation where you cannot speak for yourself. 

3. Get the facts. Be direct with the healthcare team about wanting information that they may not be comfortable giving you. Many doctors are reluctant to give information without being 100 percent sure of prognosis, but this practice leaves patients in the dark. Give them permission—even demand, if necessary--that they tell you what they are thinking. It can help to explain that you realize there is no crystal ball, but you still want to know what they are thinking. 

Research shows that patients and families often have no idea what their doctor is actually thinking. And this discrepancy of understanding can help us understand why so few people are planning. Because you can’t plan for a good death if you don’t know you are dying. 

None of us gets to decide how and when we die. But we do get to decide how we want to live. There is never a better time than now to think about what truly matters to you…right up until the very end.

More information and guidance available in the appendix of Extreme Measures: Finding a Better Path to the End of Life