4 perfect questions when facing an end of life situation

In the fall of 2010, Atul Gawande, surgeon at Brigham and Women’s Hospital in Boston and an associate professor at Harvard Medical School, delivered a touching speech at the October New Yorker Festival.  My husband attended with a friend and, because he said it so profoundly impacted the audience, I watched it myself on video the next day. It was indeed amazing. Dr. Gawande, author and national health care presence, spoke unabashedly about his lack of skill in conducting end-of-life conversations with his patients.

How could that kind of conversation ever be easy?  I remember when my father-in-law passed away nine years ago.  A nervous young doctor had the uncomfortable task of telling him that nothing more could be done about his leukemia and it was perhaps time for hospice.  As he stumbled through the explanation, my father-in-law let him off the hook easily by saying “Well, hell son, I didn’t think I’d live forever.”  It wasn’t the doctor initiating an end-of-life conversation, but rather the patient reassuring the doctor by simply announcing, albeit a bit theatrically, that he understood what was going on and he was ready.

In the 2010 presentation, Dr. Gawande talked about how he searched for a way to help his patients understand, accept, and know when they are ready.  He spoke with several end-of-life physicians who told them how they do it every day.

Ultimately, one physician, Dr. Susan Block at Dana Farber Institute, gave a simple, straightforward, and elegant answer that resonated.  She told Dr. Gawande that there are four questions she mentally carries around that guide her through the difficult but important conversations. And those conversations are not about sophisticated hard choices or last minute “epiphanies.” Instead, they are about the process of understanding hopes and fears.

Here are her four questions:

Do you understand your prognosis? What are your fears about what is to come? What are your goals as time runs out? What trade offs are you willing to make?

Four perfect questions.

After seeing the video eighteen months ago, I scribbled those four questions onto a torn scrap of paper and tossed it into a stack of things that I would, like Scarlett O’Hara, think about tomorrow.

But once in a while, I unearth it unexpectedly and then pause to consider the genius of Dr. Block.  Sometimes it is because I wonder if I may personally face the end-of-life choices sooner than I ever expected.  At other times, what really strikes me is that the questions are also about the process of recognizing hopes and fears in every day life.  Think about the daily choices and hard decisions, especially the unexpected ones, that we are faced with. And with each one we have to ask ourselves what is going on; what scares us about it; what do we ultimately want to accomplish; and what are we willing to do or sacrifice to make it happen?

Four perfect questions.

They came to the forefront again recently when I read about a family physician, Dr. Ken Murray, who wrote a Wall Street Journal essay titled “Why Doctors Die Differently.”  He observed that doctors are more likely than other people to decline end-of-life interventions that have little likelihood of benefit.

It’s not something that we like to talk about, but doctors die, too. What’s unusual about them is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently.

Dr. Murray goes on to talk about the importance of advance directives and all the other technical issues that must be addressed. But those not withstanding, I have to wonder if doctors tend to go serenely and gently because they have spent years, by virtue of what they do and see, knowingly answering those questions for themselves.

I recently shared the questions with a friend who is close with someone facing an end-of-life situation.  She was amazed by their simplicity and perfection, and I realized what a small but meaningful gift it is to help someone accept what is to come with grace and dignity.

It was eye opening. It made me think about the fact that one day, we will all be faced with the end-of-life. And so, perhaps today we might promise ourselves for the sake of spouses, partners, family, and friends to make an effort to understand what can truly happen to us, to acknowledge our fears, to plan what we want to do with whatever time we have and to know what trade offs we are willing to make.

They are indeed, four perfect questions.

Elaine Waples underwent major abdominal surgery for ovarian cancer that had metastasized to several organs. Her journey is chronicled on Care and Cost.

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  • http://www.facebook.com/youDunno D’Anne Graham

    Beautiful. And for oneself, why wait for end of life? Now is a good day to ask yourself those questions.

  • gerridoc

    An excellent post. Thank you!

  • http://twitter.com/genespiritus Gene Spiritus

    I agree with D’Anne, these are questions that should be asked, in a caring non threatening manner, when a  chronic disease that has the potential to shorten a patient life is diagnosed.  The only change I would make is to alter the question “what are your goals as time runs out” to what are your goals..that way a physician can truly develop a collaborative doctor/patient relationship.

  • drseno

    Thank you for adding to the much needed information on how to have
    end-of-life conversations that help patients and families get their
    needs met for comfort and information! Love the story about your sweet
    dad!

    Every time we find a way to hit home, more people get good end-of-life care. Thankful for that instead of the horrors (not an exaggeration) mostly experienced today.

    There’s a ‘being’ dimension that is critical in asking those 4 questions – the questions must be asked authentically and with a presence (which I”m sure Dr. Block does), for they can’t stand on their own.

    Health care providers and others who ask these questions need awareness, intention and to confront their first response, fear and anxiety. Then, those questions will offer their potency through that questioner.

    See also  http://www.kevinmd.com/blog/2012/04/successful-life-conversations.html in this same news letter #17

  • Molly_Rn

    Thank you for your post and the 4 questions. We all want to go gently into the night.

  • http://www.facebook.com/janice.mancuso Janice Mancuso

    On this subject, I read a new book by Ira Byock, MD…The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life. It’s an extremely important book that is highly recommended by many, 

  • katerinahurd

    Do you think that, despite the straight forward nature of questions, the answers are not straight forward?  Do you believe that these four questions should be reformed when addressed to a physically or mentally disabled patient?  Do you believe that organ donation is a question that can be incorporated as and end of life decission?

  • http://twitter.com/KnowYourWishes Lauren Jodi Van Scoy

    I definitely agree that these four questions are nearly perfect…yet the most important part for me, as an ICU physician who deals with end-of-life issues with patients every day, is that the answer to the last question “what trade-offs are you willing to make” needs to be grounded in a meaningful discussion and the a MULTITUDE of potential “trade-offs” should be considered. I often phrase this as “what is a meaningful quality of life, TO YOU?”  It’s a nebulous question, but is so vital to be considered before any end-of-life discussion.

    The answer to this question should be explored with a meaningful conversation and consideration of a variety of different “quality measures”.  For example, how important is the ability to eat solid food, to be able to verbally communicate with loved ones, to be able to walk, to be outside and on and on.  

    The discussion should be grounded in philosophy and focused through how medical treatments may impact these virtues.  I’ve developed a tool, called the End-of-Life Compass, to assist with the latter, which I hope addresses the important “trade-offs” that need to be considered. 

    I invite you to take a look at it: http://www.knowyourwishes.com/Compass.html.

    Thank you for this article and these four questions.
    -Lauren Van Scoy, MD
    Author of Last Wish- Stories to Inspire a Peaceful Passing

  • BrooklynC

    I welcome any rational framework for doctors to apply in this situation.  Would that my parents’ doctors had been so wise.  My parents knew their time was up, but doctors who saw them in the ER wouldn’t give a “hospice diagnosis.”  They could have used four simple questions.  Instead, each of them faced a succession of ambulance calls in the middle of the night by an overwhelmed live-in aide, and I had to meet them there.  Finally, a young doctor said, “A hospice diagnosis is what I say it is.  And if your parents last six months, I’ll give them another one.”

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