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Advance Care Directive

An Advance Care Directive is a common tool people use to plan out their ideal end-of-life scenarios with prompts and questions to answer.

Photo of Sami Packard
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I recently attended an end-of-life planning session at Kaiser Permanente. My mother is very pro-active about planning for her death (she is currently a healthy 67 year old). I am the youngest of four and I am honored that she has selected me to be her care agent to make those hard decisions should any accidents or illness arrive. The Advance Care Directive is something she fills out that describes preferences such as how much life-support to be on and even nice things like what kind of music she prefers to hear, or what lotion does she like so that we can make everything as comfortable as possible should she be in that situation to need our care. The Kaiser materials on the matter are here. 

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

If someone does not fill out a signed directive, doctors are legally required to keep their patients alive for as long as possible. This can cause great strife, anxiety, and not to mention, financial pressure on families. How can we ensure that everyone passes in the way that they want to?

This inspired (1)

Death of a Taboo.


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Photo of Chandra Shekhar

Photo of James Senior

Forms are so important in healthcare, but they often feel burdensome or mechanical - for the patient (yet another form? another clipboard) for the medical professional staff, for the administrators. Do you ever see a hotel or spa experience driven by clipboards? All that form filling is usually behind the scenes. The human experience is warmer, kinder.

There is also a politics to form design - how big are those answer fields? what kind of answers are we prompting? what kind of anxieties do we invoke when we only give a binary or handful of radio-button options? what are grey areas of other kinds of more complicated responses? Have we had a service designers or graphic designers look at the Advance Directive materials before? It would be great to see an empathetic design for these kinds of interactions. Maybe a form isn't necessary at all?

Photo of Sami Packard

James- thanks for your comment! My mom is actually filling out her Advanced Care Directive in early June. Perhaps I'll interview her about how it felt to fill out the form. I have noticed that she's been putting it off, so you are likely onto something with how awkward that process might be. Currently, the form is necessary from a legal standpoint, but I agree, perhaps there are more creative ways of gathering that information that is more welcoming for the individual and their family.

Photo of Shane Zhao

Thanks for the post Sami! James, you've pointed out something very insightful — the design of advanced care forms can literally affect how someone may experience death.  It's quite powerful when you consider how your, or you loved ones,' end-of-life experience can be determined by your responses on a few pieces of paper. We've also seen this problem in financial and legal sectors where the (in)legibility of forms have led to big consequences in people's lives. The service, interaction and communications design of these legal forms will definitely be something important to consider in the next phase. 

Photo of Morgan Meinel

Sami, this is so inspiring! Bravo to your Mom for being so pro-active about making her wishes known, and how wonderful of you for being so supportive. I love how she included her favorite music and lotion! 

I think primary care physicians play such an important role here! How often are we asked at an annual check up (regardless of age) whether or not we have an advanced directive, living will, health care proxy, etc.? Our doctors can certainly facilitate this conversation, and as health care providers, should. While I think it's very important to take some initiative ourselves, the assistance of a trusted physician could be tremendously helpful here. Advanced care planning should be the rule, not the exception, right?

5 Wishes is also an excellent way (legal document similar to a living will) to express ones wishes more extensively and is currently legal in 42 states. It addresses the personal, emotional, and spiritual wishes of an individual and allows you to state exactly how you wish to be treated in the event of serious illness. I hope this is helpful! :)

All the Best to you!