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"Advance care planning" conversations

Doctors are at the center of the health events that begin the end of life experience. How do we make the most of this "launching point?"

Photo of Jim Rosenberg

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End of life conversations and decisions seem to start with some health event that marks the transition to this new phase of life. Doctors are at the center of those health conversations, but our healthcare system doesn't provide the right support for end of life conversations. This article and survey, Doctors Unsure About How To Talk With Patients About End-Of-Life Care, highlights the need for incentives (to compensate for a doctor's time), training, and new norms in healthcare.  A few highlights:

  • Medicare now reimburses doctors $86 to discuss end-of-life care in an office visit that covers topics such as hospice, living wills and do-not-resuscitate orders. Known as "advance care planning," the conversations can also be held in a hospital.
  • While 75 percent of doctors said Medicare reimbursement makes it more likely they'd have advance care planning discussions, only about 14 percent said they had actually billed Medicare for those visits.
  • Three quarters also believe it's their responsibility to initiate end-of-life conversations.
  • Fewer than one-third reported any formal training on end-of-life discussions with patients and their families.
  • More than half said they had not discussed end-of-life care with their own physicians.

What is a provocation or insight that might inspire others during this challenge?

Where are the gaps in our social systems that place constraints on the end of life experience? Can we identify them and come up with ways to change those constraints?


Join the conversation:

Photo of Morgan Meinel

Jim, thank you for shedding light on this incredibly important topic!  Like you noted, most physicians have not had any formal training in the area of end of life conversations. It takes compassion and skill to have these difficult conversations, but they are so vital. A Palliative Care physician at Mount Sinai I work with created this video that illuminates really helpful tips on how to conduct meaningful goals of care conversations with patients and their families: 

Photo of Jim Rosenberg

Morgan -- thanks for sharing this video, this is great. It reminded me of my own experience with the worst and the best ways these conversations can go with doctors. I think there are interesting ideas here for *anyone* talking with people at the end of life about things that are hard to talk about. Do you want to add this video as a separate post in the challenge (you can link it back to this post as an "inspiration" so people can explore the different threads)? 

Photo of Morgan Meinel

Thank you for your thoughtful response, Jim! I agree - how can we utilize the advice from these training tools and apply them more universally to conversations regarding illness, advanced care planning, and end of life concerns with our loved ones? Great questions. I added the video to a separate post - I hope others may find guidance in it! 

Photo of Hattie Bryant

Good for Dr. Meier.  She is a thought leader and real champion for the best care.

Photo of Morgan Meinel

Agreed, Hattie! :) 

Photo of Hattie Bryant

It is great progress to pay physicians to talk about end of life.  However, physicians are not interested in death and dying. They are called to heal and today there are so many healing tools with more on the horizon they just keep on keeping on with what they want to do.    We consumers of healthcare must initiate the discussion.  I did this five years ago and posted in my physician's electronic medical record the name of my proxy and specific instructions as to how I want the end of my life to play out.  

This is the gap. We think physicians are supposed to address this but they don't. So it doesn't get done.
The solution is, DIY. :-)  We cannot expect a physician to initiate.  We each must take personal responsibility for our health and be specific about how much medical intervention we are willing to tolerate.  Like I said in my challenge, it's an inside job and it's personal.  

Photo of Jim Rosenberg

Thanks Hattie. I'm with you -- we each need to take responsibility for our own experiences. But I don't see it as either / or. I'd like to think about how all the pieces go together in the system too. Can we come up with ideas that make the most of all the people, roles, and interactions around end of life? What would we need to change to allow more doctors to be an effective part of a holistic end of life experience? The more open we keep the door at this point in the challenge, the more creative solutions I think we can come up with (for empowering individuals and changing systems).

Photo of Hattie Bryant

As long as the "part" doctors make thousands more than "whole" doctors we have a money problem in terms of the system.  The current way of doing includes patients, providers and payers.  In my life, sad but true, I have learned that what gets rewarded gets done.  Maybe payers could pay the patients to do two things.  One, name a single proxy (not all of my children) and two,  invite patients to describe how they want to live out their last few years, months, weeks and days.  This is what I teach in my book.  The living will doesn't work as it is too vague.  What can work is to specify your personal baseline functionality as you become seriously ill or frail.  For example with me, I want to be able to toilet myself.  I want to be able to chew and swallow food I choose to eat.  I want to be able to interact--give love and receive love--from my family and friends.  Without these capabilities, I will ask for comfort care only.  I not only be DNR, I will be DNH, do not hospitalize.

Photo of Noni Gachuhi

Hey Jim,
Great points and questions about how to get doctors more involved in end of life conversations. Given that not everyone who dies is sick (or old), are there other occasions to get people at different times through out life thinking about the end? It could widen the conversation beyond just the time of illness. Some random suggestions: is the DMV (for people seeking drivers licenses) a suitable time to plant the idea about advance directives? Similar to how in several US states drivers get to chose whether they want to be organ donors. Could the conversation be taken further? Or when applying for a home mortgage, could we use that as an opportunity to think about inheritance and wills- as necessary components of end of life planning? When signing up for gym membership, should you have to consider indicating a health care proxy vs. just an emergency contact- which we are often made to list out during presumably high risk situations. I am sure there are many other opportunities to engage/ raise the issue, we might start to normalize these discussions, a make them less scary and 'morbid'. 

Photo of Jim Rosenberg

Love these ideas and this reframing: where are all the touch points for starting and sustaining these conversations? Thanks.