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A centralized database for Living Wills

A centralized, national, easily accessible, database of living wills should be created.

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

Recently the father of my 2 sons died. None of us knew he had a living will, or if he had one, where it was kept. By chance, we found it 2 weeks after he entered the hospital. It changed EVERYTHING. Not only in terms of treatment, but also in removing incredible stress from the family who thought, but couldn't be sure, this was what he would want. A centralized database where all living wills were kept would mean they could always be found, & should always be searched for by hospitals & family.

Recently, my ex-husband,  the father of my 2 sons died. None of us knew he had a living will, or if he had one, where it was kept. By chance, we found it 2 weeks after he entered the hospital. It changed EVERYTHING. Not only in terms of treatment, but also in removing incredible stress from the family who thought, but couldn't be sure, they knew he would not want to be kept alive in this situation. Before we found it, at the family's request, the hospital removed his ventilator. (Note: The hospital would not even have done this if the family hadn't been all on the same page - and not all families are.) But the hospital would not remove the feeding tube without a notarized living will - which we didn't know existed. Purely by chance, we found his fully notarized living will in a file box in his apartment. It not only stated no feeding tube, it also stated no hydration. Once we presented it, the hospital complied with his wishes, removing hydration and feeding tube, and sending him to a hospice to die peacefully as he wished, surrounded by family and friends. Just as importantly, his family no longer faced the stress and guilt of making a decision to withdraw all life support when they couldn't be absolutely, 100% sure that was what he would want.  (And there were no longer recriminations by friends who thought the family might have some sort of ulterior motive in making the decision to remove life support.)

 A centralized database where all living wills were kept would mean living wills could always be found, & should always be searched for by hospitals & family. It would maximize the chance your wishes would be followed, and minimize stress, guilt, and fights between those you love most at the most difficult moments.

Tell us about your work experience:

I've held director level positions in social service organizations for well over a decade. (Most recently with Meals on Wheels of Central Maryland, overseeing services for 1500- 1800 elderly clients daily.)

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Photo of Jim Rosenberg
Team

Great idea. Making the choices for your living will is hard enough. Making sure everyone who needs to know about it does, that they don't forget, and the papers and information are available at the critical moments is a mess. A centralized database that EMTs and doctors can access when needed would be a big step forward.

Photo of Bettina Fliegel
Team

Barbara, Jim and all - 
I commented below also - I really wonder what the barriers are for this.  I reached out to a doctor friend who works in Emergency Medicine in Australia as well.  (I am an MD in the US)  Like us they do not have a centralized data base - and their medical system is much more of a spoke and wheel than ours is.  I am going to follow up with him to get more info.  Two things that he wrote that were interesting - 1) Directives can expire.  Many elderly that come in from nursing homes to the ERs in Sydney where he works have Directives but occasionally they have expired.  
2)  Not infrequently the on call intensive care physicians refuse to start ventilation if they feel it is medically futile, even if the patient had wanted it.  The ER doc then needs to explain this to the patient and family.   Interesting.

Photo of Barbara Levin
Team

Assuming there are expiration dates on living wills, those dates could be listed in the database. Actually, more importantly, folks having their living wills entered into the database could be TOLD that they need to renew their living will at specific intervals.
Right now, most folks assume that once they make a living will they are set, and never need to update it. As things currently stand, many people think they have valid living wills, when realistically those wills would not be honored due to their age.  Folks need to be told that living wills don't last forever. Even if there is no expiration date, doctors may be loath to honor it if its very old.
That's extremely problematic since people aren't updating their living wills who would choose to update them, if they only knew they needed to do so.
So, part of the solution should include standardizing how long Living Wills are good for, and making sure everyone knows that they need to renew their living will at specific intervals.  (Say every 5 years.) Actually, a database could help with that, since it could automatically contact folks when their living will was about to expire, and let them know that it needed to be renewed.

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