How do we decide how we want to be treated at the end of life?
What would a good day look like if you were suffering from a terminal illness?
This is one of the questions Dr. Atul Gawande asks in Being Mortal, Medicine and What Matters in the End, New York: Metropolitan Books, Henry Holt and Company, 2014, his book exploring medical treatment at the end of life.
Dr. Gawande looks at how this one question, along with a series of questions most physicians are not asking their patients, might shape the course of medical treatment and care of those who are terminally ill, as well as those frail elderly who are in need of long term care.
In the book, one patient says that he is willing to have medical treatment for his terminal illness so long as the treatment will allow him to eat ice cream and watch football on television. However, if at the end of the treatment he can’t have that ice cream and television, he does not want the treatment.
Another patient says a great day for her would be to take her grandchildren to Disneyworld. Unfortunately, by the time she tells her doctor this she has undergone months of aggressive treatment that leaves her tired and weak and no longer able to go to Disneyworld. The question then might be, if your idea of one good day is to go to Disneyworld, should physicians forgo treatment that will not cure you in order for you to have at least that one good day at Disneyworld with those people you love?
In our office, we spend lots of time helping clients fill out their Advance Directives for Healthcare, a document that allows a person to nominate an agent to make healthcare decisions for them if they are not able to make or communicate those decisions. We talk about whether the client wants extraordinary medical treatment if they have a terminal illness that will likely end in death and they are not aware of their surroundings. Most people say that they don’t want aggressive treatment under those circumstances. However, we don’t have a good way for clients to really communicate their wishes to their loved ones when the question may be quality of life versus quantity of life. What decisions should a healthcare agent make if treatment will prolong life but may leave that life not worth living for the person for whom the agent is deciding?
Dr. Gawande suggests a series of questions that should be asked while a person is still able to give answers. These questions would also be appropriate to ask someone who is aging and becoming frail :
- What is your understanding of where you are and your illness?
- What are your fears and worries for the future?
- What are your goals and priorities?
- What outcomes are unacceptable to you? What are you willing to sacrifice and not willing to sacrifice?
- What does a good day look like for you?
Here is a link to an article about the author, along with a video discussing the five questions:
http://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/
Of course, the answers to these questions will change over time and as diseases progress. For instance, a young mother facing terminal cancer will have very different goals, fears and worries from the frail 90-year old great-grandmother facing admission to a nursing home.
How would the answers to these questions help if you were the person who has to make or communicate these decisions for someone else? If you knew a good day for your father was for him to be able to sit and eat ice cream while watching football on T.V., would you make decisions for his care that would allow him to do that?
I know how difficult conversations about end of life can be, but perhaps asking these five questions can at least open up a dialogue that will ultimately lead to better decisions about end of life care.