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Common Good Advance Care Planning

Create a system that helps people get informed advance care planning done efficiently, and makes it immediately available in an emergency.

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Who is your idea designed for and how does it reimagine the end-of-life experience?

It is designed for interested individuals, but more for those responsible for medical care of populations. I imagine never again breaking the ribs of a person I later learn never wanted that. I imagine every adult who comes into the hospital has had prior education regarding care options in critical illness/injury, and has their values and preferences clearly defined and accessible.

This is designed for the current reality of medical practice, where there is time pressure to get things done efficiently. When someone identifies a population, for example adults coming to X clinic or health system, we help build a standardized process where those people are contacted by email or push notification through the patient portal. They can work on the process at home, or they can be walked through it by an assistant at the provider's office. The start of the online process involves the person choosing someone who looks like they do, and who speaks the language they feel most comfortable in. This person then "walks them through" the whole process through video assistance on each page, so that even if they are illiterate or have poor eyesight, they can do this themselves and preserve dignity. If desired, they can see a leader in their spiritual tradition offering guidance regarding advance care planning.

They choose their surrogate decision-makers, and give them general a general outline of what type of care they'd like if they got too sick to communicate from their current state of health. Then they imagine how those care preferences might change it their circumstances changed... for example if they became demented or had only a short time to live anyway.

The person then reads a short prompt into their phone or computer while video capture positively identifies them. The prompt has the person name decision-makers and express their general values for care currently. This video is linked to the AD which gets sent out to decision-makers and other interested parties via email. Thus, although the person can make it legal by going to get it notarized or witnessed, even if that part doesn't get completed, the family knows the person's values and wishes.

The system can then be done as little as 10 minutes into the process, or if appropriate can go on into great detail regarding values and wishes, including the interactive creation of a sample POLST/MOLST form to greatly simplify the conversation with the signing provider.

Patients retain control of their info, which is protected in the cloud and can be changed by two-factor authentication (including fingerprint ID on smartphones). Their choices are available via one click from the header of the inpatient and outpatient EHR, and available to emergency responders.

We envision a not for profit foundation which helps connect the excellent work already ongoing in the field, such that whatever electonic process a person uses to document, it can be accessed by providers who need to know.

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

See above poster presentation where we did something similar in paper, and got the majority of our 20,000 adults to have their wishes documented. Next step will be testing with a simplified website.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

We are looking for partnerships to help build this into the most beautiful option for helping people get care that's true to their values. We envision this being held in a sacred public trust, not-for-profit collaborative. We envision financing to come from health systems most likely to benefit. We'd be grateful for ideas, web user experience experts, and financial partnerships.

Tell us about your work experience:

I work in healthcare as a family doctor, in hospital medicine, and palliative care. I have an interest in design, but apart from building an airplane haven't done much formally in that arena.

This idea emerged from

  • A group brainstorm
  • An Individual

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Team

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Photo of Lois Perelson-Gross
Team

Hi Doug,
This is an exciting concept. Thank you.
Question: Your project depends on a number of technological features that may be unfamiliar to people of the age &/or SES you want to reach (fingerprint authorization, video capture) and also seems optimistic in getting people from zero to completed video in 15 minutes. If the lower-tech version of working in person with a human assistant proves more appealing to your target population, how would the human assistants' time be reimbursed?

Photo of Doug Wilson
Team

Thanks for these helpful points, Lois. It's clear that I wasn't ;)
Medicare now reimburses $86 for the conversation, and I think the ideal would be for healthcare providers to train their staff to walk people through this so that the conversation with the provider could be more focused.
The completed video I see as just people reading two sentences, which the program customizes to include their desired DPOA's and general values. I don't know if that will work for most people across a population, but I'm excited to find out!
Most of the AD is just a PDF, with a link to the video.
I appreciate your design creativity!

Photo of Bettina Fliegel
Team

Hi Doug.  I like the idea as it recognizes the extreme time limitations that are the norm in clinical practice.   I also really like the video idea with translation services!  Will one need to schedule an appt. to get on to use the online service with the virtual assistant, or will it be open and available? 

A few questions/ thoughts….  
You mention that a surrogate can be identified and the name and contact is entered into the document.  If I were a User sitting down with the assistant virtually when I got to the point of naming a surrogate I may stop to think about this.  What if there is no surrogate already in place?  Does your system save the data entered until that point?  Will at least that information be in place?  Can this question be skipped and the patient come back to it at a later date?

Have you considered an adjunct video that explains more about what a surrogate does and how the person might think about choosing them, and preparing them?  Might a video for surrogates also be useful?  There has been some writings on the trauma that this position causes some surrogates.  How can your system help to prepare surrogates and patients so that this does not happen?

 When are you thinking about sending the Push Notifications?  How about during one's birthday month and presenting it as the opportunity to plan as a gift to oneself and their families?  Maybe offer a monthly class/gathering/social event in the center to review what advance directives are and invite those that have birthdays that month?  Maybe have a notary present at these events so that those that want to speak with them about legalizing the online directive they can do it at that time?

Would access to a spiritual advisor be online at the time when one fills out the directive, or will it be in person?

Will patients' primary providers be notified after this is completed so that they know that it is in the record at that time, or will they find it at a subsequent appointment?

Good luck developing this!  Great idea!

Photo of Doug Wilson
Team

Thanks Bettina! I'm interested in how you imagine this, because I think I envision it differently. I see it working like this: you choose the language and a picture the person you feel most comfortable with, and then the program guides you through  using videos of that person to explain each question if desired. So it's always available.
I see the site saving information as you go, so that you can drop off at any time and come back to it if desired. You should be able to go on and skip the surrogate part. Some people don't want to name a surrogate, right?
Your idea about a video for the surrogates is great! We have a video the user can click on to learn more about choosing a surrogate, but haven't made one yet to help the surrogate. We were just chatting about how emotionally charged it could be to get an email with an AD, and how we need to find a way to make it gentle. We're thinking about building in a delay to make sure the emails go out in the evening the next day, so that people have a chance to call their surrogates if they wish.
In my experience much of the surrogate trauma is caused by poorly crafted AD's that don't give much direction to the surrogate, and didn't start conversations. When people have been clear about their wishes I see surrogates experiencing much less stress.
Push notifications on B-day as a gift to family???? Brilliant! I'd envisioned just sending them before an annual physical or routine doc visit, but your idea is much better :) 
We're doing these AD gatherings currently with the notary present, and they are good but we aren't getting the work done at the population level this way. I hear online notarization is coming...

The Spiritual advisor I'd envisioned was just  a youtube video link to leaders in various traditions talking about ACP from the perspective of the tradition. 
As a primary provider who definitely suffered from "alert fatigue", I would say it would be better to just have it automatically go into the record.  I envision a little "ACP" link in the header that is greyed out until the person completes something at which time it becomes a hotlink out to the cloud-based repository.
I appreciate your feedback and creativity!

Photo of Scott Joy
Team

For those in critical illness situations, it's important to explain the importance of making these decisions in a way that doesn't feel like your care providers have given up and believe the end is near.

Photo of Doug Wilson
Team

I agree. My vision is for this information to become normally available for all adults.

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Team

Welcome to the Refinement phase Doug! Here are some key questions and milestones we encourage all idea teams to consider in the Refinement phase:

1. How might this idea address the unique needs of the target audience you're designing for?
2. Clearly summarize the value offering of your idea in 1-2 sentences
3. Communicate your idea in a visual way with user experience maps http://ideo.pn/UX_Map 4. Identify assumptions that need to be answered in order to validate your value offering: http://bit.ly/1Oi8ZHu
5. Collect feedback from potential partners and users to answer the assumptions you’ve identified.

Lastly, here's a useful tip: When you update the content of your post, it'd be helpful to indicate this in your idea title by adding an extension. For example, you can add the extension " - Update: Experience Maps 07/12" to you idea title. This will be a good way to keep people informed about how your idea is progressing!