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How to Talk End-of-Life Care with a Dying Patient

How to Talk End-of-Life Care with a Dying Patient
These are hard conversations. I’ve blown them many times myself. I’ve not known what to do. And with this study coming out from the Mass General where the patients had seen a palliative care physician, I realised that the gain they’d gotten was that really they’d seen six people who knew how to– that’s the staff at Mass General for palliative care– that they’d seen one of these six people who knew how to talk to them about the end of life. And so what I did was I went to those doctors and just said, I’m really bad at this.
If you had to make a little list for me of what it is that I should talk about with people facing these problems, what would you put on that list? One of the doctors that I spoke to was a palliative care physician at the Dana Farber Cancer Institute named Susan Block. And Susan encapsulated I thought the best for me, at least in a way that I could use. She said that there were four things that she has as a little mental list in her head that she wants to talk about with a patient who is terminally ill. Number one, do they know their prognosis? Number two, what are their fears about what is to come?
Number three, what are their goals? What would they like to do as time runs short? And forth, what are the trade-off’s they’re willing to make? How much suffering are they willing to go through for the sake of the possibility of added time? That list was really interesting to me. It was not a list asking, do you want a ventilator or do you not want a ventilator as you come to the end. Do you want your heart shocked? Do you not want your heart checked? Her point was, if you tell me the answers to those questions, I can make a recommendation to you that says, you would not want this toward the end if these are your goals.
Our misconception is that the conversation is about hard choices. Really it’s a conversation about asking people about what they want to look forward to as time runs short, and what they fear the most? The second misconception is that arriving at what we want at the end is a kind of epiphany. Sign here. Do you want hospice? Do you not want hospice? It’s not an epiphany. It’s a process. It’s a series of conversations and ups and downs as we go through a very hard series of– sequence of things that happen to you as you become ill and have things come to an end.

In the video, Atul Gawande, describes the ongoing process of having hard conversations with individuals nearing the end of their life. In, Being Mortal, he writes:

Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?

What do you think about the ideas in the video and the extract? Please share your thoughts below

In the coming Weeks we’ll revisit these ideas and see how they apply to frontline workers and families.

© Being Mortal: Illness, Medicine and What Matters in the End , Atul Gawande, 2015

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Grief, Loss, and Dying During COVID-19

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