When I started my journey as a hospital chaplain, we had a seminar with a palliative care physician, who manages the pain and symptoms of serious illnesses. She started the day by handing out paper and drawing implements. She asked us to consider our last day: being told that we had less than twenty-four hours to live, how did we want to spend that time? Each one of us drew our own idealized setting, most choosing to spend time with our friends and family at home. Not one person drew a picture of an Intensive Care Unit or hospital room! Since that time, I have learned that most people say they want to die at home, while in fact, most die in an institutional setting (hospital or other care facility). Why would this happen?
In the past, many people had a family doctor who took care of them from cradle to grave, with most care occurring in the person’s home – in fact, only the destitute went to the hospital. Times have changed. Modern medicine provides us with many life-extending treatments and medications that manage serious chronic illnesses. The downside is that instead of enhancing life, sometimes, death is simply being prolonged, along with suffering.
Each of us is a unique individual, with a story, hopes, dreams, and aspirations. At times, illness will slow, but not obliterate, our personhood. However, there may come a time for each of us when modern medicine, even with all of its potions, will not be able to return us to health. What do we do? How do we know when enough is enough? One approach is to understand our own limitations, and more importantly, to talk with those we love about them. The challenge is that most of us want to celebrate life rather than discuss our potential death. It is just who we are.
As a retired hospital chaplain, I have seen many instances when families were asked to make decisions. Physicians, wanting to honor a person’s autonomy, will ask, “what do you want us to do?” The natural response is that “we want you to make our loved one well.” However, many times, the effects of continued treatments are not made clear, and we don’t know the right questions to ask to get the facts that will help us to make decisions in the context of a person’s life. If you know that mom loved to garden and meet with her church friends regularly, but that she will no longer be conscious to enjoy those things, the decisions that you make will be very different from your choices if you know that she can recover and with some limitations, do the things that gave her joy.
If you have prepared a Last Will and Testament with an attorney, the chances are good that you have also signed advance directives appointing a health care decision maker and indicating your choices if faced with a terminal or irreversible illness. This is not enough! Talk to your family and friends about your wishes, telling them what is important to you. Make sure that your health care proxy knows their role and needs to follow your wishes. If you do not have advance directives or want to know more about them, contact me (firstname.lastname@example.org) and I will walk you through the process.
Do yourself and your loved ones a favor – talk about who you are and how this fits into your health care. Even if you cannot control where you die (and most of us can’t!), you will at least remove the guesswork at an important time of your life.