Living the Best Life Possible
Doctor and Patient Conversations About Serious Illness and Mortality

Summary

Many Americans may confront illnesses so serious that they are life threatening. These diagnoses may come with treatment attempts and hospital stays. What they may not include are honest and open conversations about the final stages of life. How might the patient want to live during these stages? What choices are most likely to bring a sense of peace and empowerment? How might family members be included in these discussions? A growing palliative care movement is encompassing these questions, bringing together doctors, patients and their families in a new and compassionate way. This Forum event examined this movement, taking a look at the Serious Illness Care Program system developed at Ariadne Labs, as well as the upcoming launch of a national collaborative to test the use of this program in multiple healthcare systems in the U.S. This event also reviewed issues within healthcare systems, including utilization of end-of-life services and the debate around the role of payment for value.

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Presented in Collaboration with PRI’S The World and WGBH

Background Articles

Image Credit: © GettyImages/Dan Dalton

  • The Forum Moderator

    Welcome everyone! Our webcast will begin at 12:30pm ET.

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    We’ll be starting is just a few minutes.

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    Our panelists are getting settled in their seats. We’ll begin in just a few minutes.

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    Thank you for joining us today.

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    Our program has begun. The stream will start on its own. You can also refresh your page.

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    This event is held in collaboration with PRI’s The World & WGBH.

  • The Forum Moderator

    Dr. Atul Gawande has written a new book called Being Mortal: Medicine and What Matters in the End (http://atulgawande.com/book/being-mortal/ )

  • The Forum Moderator

    He also participated in a documentary called Being Mortal for FRONTLINE. This video was filmed for that film. The entire documentary is available online at http://www.pbs.org/wgbh/pages/frontline/being-mortal/

  • The Forum Moderator

    This brief video is called “Debbie’s Dying Wish” and is available https://youtu.be/ybVQF8FUyqc.

  • The Forum Moderator

    Susan Block leads the Serious Illness Care Program at Ariadne Labs. http://www.ariadnelabs.org/programs/serious-illness-care/

  • The Forum Moderator

    We will conduct a brief Q&A during this event. Do you have a question for the panelists? Please post them here.

  • The Forum Moderator

    You can also email questions to theforum@hsph.harvard.edu.

  • The Forum Moderator

    Ariadne Labs have developed a Serious Illness Conversation Guide. It addresses concerns such as:
    Patient understanding of their medical situation
    Patient information preferences to assure that patients have the knowledge they need to make appropriate decisions
    Life goals that are most important at this stage of their health and illness
    Fears and worries about the future
    Views about what abilities are essential to the patient’s definition of quality of life
    Perspectives on tradeoffs between quality of life and the possibility of more time
    Patient preferences for level of family involvement in decision-making

    • Lily Casura

      Outstanding! Is a copy of it available on your website?

      • The Forum Moderator

        Thanks so much. We’ll be posting the video on demand here in the next day or two.

      • Lily Casura

        Not the VIDEO per se — I’ve already seen multiple references to that — but in this threaded conversation — the specific guide mentioned — “A Serious Illness Conversation Guide,” produced by Ariadne Labs. Thanks.

        • The Forum Moderator

          Apologies — I misunderstood. I would suggest contacting Ariadne Labs directly to see if they are able to connect you with a guide: seriousillnesscare@ariadnelabs.org

  • Professor

    I would like to facilitate these conversations using my faculty position at a mid-atlantic liberal-arts and professional college to create opportunities. I would need an external grant for a pilot program $5000-$10,000. What foundations should I look at for a grant for this type of small, community-based project? I would also like to know if there are organizations that I can go to for specific advice on how to create an effective program.

  • The Forum Moderator

    Our Q&A will begin shortly. Post your questions here or email them to theforum@hsph.harvard.edu.

  • Lily Casura

    It sounds like documents that convey best practices — both for physicians and patients — should develop as a result of this scrutiny and insight.

    • The Forum Moderator

      Yes, I think you’re right. Important, too, to include doctors and patients, as you point out.

  • Maureen

    What can we learn from our European counterparts regarding palliative care?

  • The Forum Moderator

    Thanks Maureen. Great question.

  • The Forum Moderator

    Our event will be ending soon. We’ll post the full-length video of this event on this page shortly. We’ll also post it on YouTube and iTunesU.

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    We’ll also post the podcast on iTunesU and on SoundCloud

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    Apologies if we were unable to ask your question. We encourage our viewers to continue this conversation through your comments on this page.

  • The Forum Moderator

    Thank you all for joining us today.

  • The Forum Moderator

    Join us again on April 16 at 12:30pm when we will discuss e-cigarettes regulation and public health.

  • GRACIELA ASTRID LEON ALFONSO D

    The forum was interesting. Thank you

  • Quoiquilsoit

    Since you’re not actually going to provide medical help to these patients, I suppose talk (and trying to get paid for it) becomes your preferred alternative. But let’s be clear that it’s for the benefit of “the system,” not the patient.

    Just to be clear, there’s no “dignity” in dying of thirst/hunger, conscious and without tubes. There’s also no dignity in gasping for breath, vomiting and having diarrhea while conscious.

    If I have serious physical suffering that you’re not going to alleviate and which is likely to extend until death, then knock me out, put in as many tubes as you like, and keep me alive as long as you can. I don’t care who pays for that. If the result is that I don’t live as long as if I had gone on suffering, then I’ll still choose unconsciousness.

    Somehow or other you don’t include what I want in your “options,” so I regard you as a leech and menace.

  • Does palliative care programmes and roles involve the patients being given an oportunity to walk/ wander the MEMORY lane and WRITE about them apart from just being a patient model or a family model that would guide the future patients who would seek a ‘peergroup’ sort of information sharing, however painful or ecstatic days of the pastyears and months. 2. Does theology and palliative medicine have a place in improving health spectrum of a patient in a mutually comprahensive manner any research from Harvard school of public health please?