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Torrie commented on I Know Something About This

Hi Jim,

A couple of thoughts:

1. As someone who is a "survivor" I will tell you that the most powerful, insightful, useful information about my treatment came from those who "knew something about that". Bravo. Please connect with Diane Mapes (@double_whammied on Twitter) to discuss her and the thoughts of HICOR in Seattle about this idea having come up several times in patient groups. Absolutely a necessary resource not only at end of life, but through treatment. 

2. Activities and tips are useful and helpful. I would consider adding in self rated health quick quizzes or a place to log self rated health in the app. It helps with end of life mindfulness and ownership of feelings. 

3. As someone who works in palliative care (my other hat), think through a way for patients to give access to their stored stories to their treatment team. Sometimes patients can write for say things alone that they aren't able to share with a care team. This platform can act as a powerful connection tool for the patient with their care team in documenting their quality experience with end of life. 

Hi, Justin!!

There's a group in Oregon who put one of these out as well (departing decisions). I'm coming from a business standpoint, and the guides were difficult to use in paper form. One thing I contained in Oregon was to make an online repository with a governance structure (so there was an approval process). This is not only lucrative  for individuals but also for the care managers trying to look for resources for patients. You have absolutely no idea how essential a guide like this is for the gathering of resources for these individuals... Google is great, but it's not reliable. 


Torrie commented on Dying Parent resource [Updated August 1]

Hi Josh, very interesting idea. I work with a lot of patients who seek very aggressive treatment when they have serious illness because of having small ones at home. Preparation and a guide is vital.

It reminds me of Randy Pausch's end of life wishes he shares in The Last Lecture. He chose more treatment so that he could live long enough to get affairs in order for his children. 

I think your idea is good, but your approach is a bit too philosophical to be useful. Think through what tactical things might be good for families left behind. For those children I counseled who'd lost their parent, they benefited most from art, activities, lists, and more concrete things to do, rather than narrative and stories.