Stories for Change Action Community

  • 1.  What to do in an elder emergency....do advance directives matter at home when 911 called?

    Posted 08-31-2015 12:19 AM

    Two weeks ago today, the second night of my visit to St. Louis to stay with my mother who has dementia and relieve the overnight caregivers, she fell.  It was the kind of scenario our family imagined would be the impetus to have her move into a facility, but I was in fact relieved that at the time, she didn't have any injuries.  Growing up during the Great Depression, at 90 she still likes to have all lights off in the house except for nightlights.  However, I like to have a light on in case I wake up in the middle of the night (or sadly, if she does) so I put one on in a room at the far reaches of the house but alas, she turned it off just after I went to sleep and fell, somehow landing on her back.

     
    As it was close to midnight on a Sunday when this happened, I only contacted one of my 3 siblings who lives in St. Louis for advice.  After trying to help my mother get up from a seated position, it was clear I could not do so without possibly harming myself.  She was confused and shook up so I called 911. Two EMTs showed up (and briefly, a police officer!) and they determined she had no apparent injuries.  When they asked for her Social Security Number, I thought I would find it on her recently updated Power of Attorney for Health Care/Advance Directives form.  However.... they were not in the safe where the older documents were still in place, and I realized that there might not be a copy on hand!  So I decided to ask some questions, for example, what would happen if someone did not want CPR after calling 911 at home -- would having POA/Advance Directives suffice?
     
    Having learned about POLST(Physician Ordered Life Sustaining Treatment) a year ago from a friend who is a hospice nurse in California, I discovered at that time that Missouri did not have things in place for me or anyone else on my mother's documents to prevent her from getting CPR if it was determined to be warranted, even if that is not what she would want.  I was told I could take the documents along with me to the ER, however, and doctors there could then withdraw life support.
     
    Today my mother was taken to the hospital in an ambulance -- her mobility deteriorated over the last 2 weeks and I asked the caregiver to make sure the documents went with my mother in the ambulance.  She said they looked at them but in the blur of helping her get situated, the caregiver was not certain if they went along with her. It's late on a Sunday night again, so.... I'll have to find out tomorrow! I am hoping that when she was admitted the relevant questions were asked regarding advance directives.
     
    It's great to have Amy Vandenbroucke, JD as part of our Action Community.  Amy is the Executive Director of the National POLST Paradigm -- Amy, your thoughts on how this type of story could be used to help change legislation?  I'll have more on advocacy when I share a story about my Alzheimer's advocacy activities this year (to be submitted to the special issue of THE GERONTOLOGIST; the issue is called "Aging: It's Personal").
     
    In the meantime, I look forward to an exchange on this topic and of course, share your stories too!
     
    Connie

     



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    Connie Corley
    Professor
    Fielding Graduate University
    San Gabriel CA
    626-532-7438
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  • 2.  RE: What to do in an elder emergency....do advance directives matter at home when 911 called?

    Posted 08-31-2015 04:32 PM

    These are the kinds of stories that more and more of us are becoming all too familiar with.   I'm glad that, in this case, it is a matter of diligently looking ahead rather than reflecting upon a tragic outcome.  

    The availability of properly executed advanced directives and POLST (or similar) orders with people in the community and across the continuum of care is such an obvious area for improvement.  People in all sectors--including entrepreneurs--recognize this as an area in which quality of care could be increased while potentially decreasing costs (and making things more person-centered).  

    Are any of you seeing exciting innovations in this arena?   Have you noted any effective use of stories to advance these efforts?   


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    Scott Kaiser
    Chief Innovation Officer
    MPTF (Motion Picture & Television Fund)
    Woodland Hills CA
    (818) 876-1758
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  • 3.  RE: What to do in an elder emergency....do advance directives matter at home when 911 called?

    Posted 09-01-2015 05:25 PM

    Thanks for sharing!  First, I wanted to make sure you knew about TPOPP, which is the name for POLST for the KS-MO POLST Program (TPOPP Transportable Physician Orders for Patient Preferences-- it may not be available state-wide yet, but they have a coalition working to get there.

    Second, to your question "what would happen if someone did not want CPR after calling 911 at home -- would having POA/Advance Directives suffice?" Hopefully they told you the answer was no; this is the value of a POLST-- it is a medical order that EMS can follow unlike an advance directive.  We've tried to emphasize that with our story about Max (you can find that here: POLST Stories).

    Finally, these are the kinds of stories I think can help.  It shows both the importance of occasionally reviewing key documentation with family members (social security information, advance directives, etc)- making sure people know where these documents can be found-- during an emergency is not the time to go hunting for them!  It also shows that, even if you are aware of the documents and process, that transitions to new care locations are messy- we need processes where you are confident that the admissions process includes a review of advance directives and, if applicable, POLST forms.  This is fundamental to ensuring a patient's right to receive treatment they want- and not receive treatment they do not want.  Medical emergencies can occur at anytime so this _must_ be part of any admission process.  I am personally hopeful that technology can help us solve this, ensuring these vital documents follow patients along any transitions of care settings.

    Back to the story though- there is value in that this is not a unique or unrelatable story.  This is easily a story many people have experienced or can imagine experiencing so I think (but don't know) that there is likely value in using it to show how technology can help or why it matters to make sure key documents are available.  The challenge I see is how to get people to consider that this isn't unique and could happen to them- and to help them realize there are things they can do today to perhaps make it easier.

    I'm excited to be part of this discussion.  People connect with stories and I want to explore how to better find and use them to communicate more effectively.


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    Amy Vandenbroucke, JD
    Executive Director
    National POLST Paradigm
    Portland OR
    503 494-9550
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  • 4.  RE: What to do in an elder emergency....do advance directives matter at home when 911 called?

    Posted 09-04-2015 01:38 PM

    Thank you Amy all of this is very helpful and supportive!

    Just to update, I discovered on Monday, a full day after my mother was admitted under "Observation" status at the hospital, that she was on Full Code.  At the time I had just left the Chinese Consulate having picked up my visa for trip to China next week with th GSA delegation presenting at a Chinese gerontology/health conference.  I had to pull over and see if one of my siblings could email the document to the hospital (after first checking the doctor's office -- they also did not have her POA/Advance Directives I so diligently made sure were updated earlier this year!).

    A piece of this puzzle is the long-distance caregiving factor.  Time differences, travel schedules and so on can make it difficult to handle these kinds of things so I have become increasingly motivated to see how these issues can become more centrally addressed in the public domain.  However, there is still the stigma of talking about end-of-life issues so...we have our work cut out for us!

    In any event, my mother is now settling into a specialized dementia care home, on a skilled unit, and I learned that "Observation" status at the hospital did not count as the Medicare hospital admission needed for covering some of her SNF costs....but at least it helped transition her out of her house where she was determined she would never move from....  I'm keeping clips of my stories from this sojourn for future writing and sharing.  Stay tuned!

    Connie


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    Connie Corley
    Professor
    Fielding Graduate University
    San Gabriel CA
    626-532-7438
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