Editor’s Note: Last month it was made public that former First Lady Barbara Bush decided to forgo medical treatment toward the end of her life, and focus on comfort before her passing. These types of end-of-life decisions are something many people will have to make at one point — but will they be prepared? And will they actually achieve their wishes? In the wake of Bush’s death, Uken Report was approached to have a well-known author on the topic write an exclusive story for Uken Report. We readily accepted and hope you and your loved ones find it valuable.
What does it mean to “die well”? The simple answer is it means dying the way you want to. Of course that then leads to more complicated and thought-provoking questions: How do you want to die? And when is it time to start thinking about that?
There is no one answer. It all comes down to what’s best for you and your family. For my husband Bruce, who was diagnosed with terminal cancer, it meant dying peacefully at home surrounded by his loving family, free of fear and pain, without regret. It meant living fully right up until the end. His decision to stop treatment allowed him to spend his remaining time doing what he loved to do with the people he loved most, being present and savoring every moment.
Unfortunately many people’s end-of-life experiences are quite different. According to a study in the Journal of American Medicine, although 90 percent of those on Medicare say they want end-of-life care at home, only one-third achieve it. Far too many of us die in hospitals, in pain, isolated from friends and families, often after a long medical struggle with an incurable condition. All too often well-meaning physicians try in vain to extend the life of a terminally-ill patient, at a terrible cost, financial and emotional. I witnessed in my bereavement group, when one after another grieving spouses recounted heart-wrenching tales full of tears, anger, regret, and loneliness, the devastating effect that kind of death can have on survivors.
So, why should you care about what it means to die well? Because if you haven’t defined what it means to you and your family, it’s unlikely you’ll achieve it. Chances are you’ll get too much, too little or the wrong kind of healthcare because your family and physicians, not knowing your wishes, may make wrong decisions on your behalf. You may run out of time before achieving the sense of closure that you want.
A good way to define what dying well means to you is to start by asking yourself a few questions. Is quality of life more important to you than quantity? Are you worried you’ll get too aggressive care? Are there kinds of treatment you don’t want? Do you want to spend your last days at home? Do you want to be surrounded by your loved ones? You might not have formalized your opinions but you’ve probably observed how other people faced death and thought about whether you would have wanted to do things differently.
Perhaps my personal definition, based on our family’s experience, can provide a starting point for you. Here’s how I define what it means to die well:
1. You are prepared for death. You have an informed understanding about the process of dying, i.e., that there is an orderly process for bringing gentle closure as the body gradually shuts down. You know how proper care is able to ease anxiety and fear during this process.
2. Pain and symptoms are well managed. Medical treatment is of the right kind and at the right time because you, or someone you have appointed to speak for you, is in control and able to make decisions about treatment preferences.
3. Your physicians know your goals and wishes. They are there to help you understand your options and decide what treatments to accept or reject. They are honest about the benefits and side effects of potential interventions.
4. Your family has accepted that you are dying and are fully supportive of how you want to spend your last days. You are able to talk openly with them about your prognosis and wishes. They understand your decisions and are ready and willing to do whatever it takes to help you.
5. You know when it’s time to transition from “being sick” to “dying”, i.e., to stop hoping for a cure and start hoping for the best possible quality of life in the time you have left. You find it calming to have a more certain future, the priorities clear. With friends and family gathered around to ease your passing, you have time to achieve a sense of completion, make meaning of your life and death, tie up loose ends, resolve conflicts, say goodbye, know that survivors will be OK, that all will be forgiven, and that you will be remembered.
While you may not be able to control the cause of your death, you do have control over many aspects of how you die. We found that with advance planning, a supportive medical team, an informed understanding of the process of dying, and the help of family and friends, it is possible to take control of your end-of-life journey and achieve what you want. If you want to ensure you will die well, the time to think about it is now. It always seems too early, until it’s too late.