This is fantastic! To me it fits into the "hacking the hospital death" theme. We can do so much to make the experience better for the many who currently die in hospitals and nursing homes. Also, don't forget the practical and physical needs of the family -- for food, for sufficient warmth or blankets. During long stressful vigils, these can be immensely helpful and keep the focus where it belongs. See also Kaiser ER doc Scott Schmidt's protocols for "hacking" the ER death by providing a similar quiet space. thank you Loretta!
I don't know how IDEO or funders can operationalize this, but patients and families need straight talk from doctors about the pathway ahead YEARS before the crossroads that leads to the final "No more." So they can get used to death's approach. 70% of us die slowly and undramatically of degenerative conditions (including just plain aging) like heart failure, kidney failure, lung failure and "the dwindles." Do we need scalable "straight talk" websites that allow regular folks to plug in their conditions and find out: A. How long am I likely to live with this condition? B. What will my downward course look like? Will I need caregivers, and for how long? C. Have I become so physically or mentally fragile that the stress of surgery or a hospital stay or another round of chemo has a 50-50 chance of destroying my current quality of life and plunging me into debility and/or a nursing home? There is a site called "ePrognosis" that has made a start at this, founded by Eric Widera, MD, who created the Geri-Pal blog.
PS. I think the problem starts with doctor-patient-family communication about the landscape ahead five years "upstream." Words like "advanced," "progressive," and even chronic are confusing -- how about incurable, worsening and worsening? Then there's my favorite --"multiple system organ failure." How about "Dying?" Eric Widera MD of Geri-Pal has done beautiful work with ePrognosis, a site where anyone, patient or doctor, can plug in some figures and get an estimate of remaining lifespan. I hope someone funds it and widens it so that we also get decent predictions of the "house of cards" stage of living and dying, where ANY hospital stay sets of a downward spiral to a hospital death. Nothing can be exact, but doctors who have seen many people die of lung cancer or heart failure or anything else know a lot more about the landscape ahead than the rest of us do. We need to ask: what is the natural course of my illness?