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Memory care – the door is locked, but is anyone home when the ambulance arrives?

When the 911 call may be necessary but not sufficient.  The news about the no-CPR policy in an independent living community in California brought me back.  In the incident reported everywhere, the nurse claimed that the policy in independent living did not include providing CPR – and as a result, the elderly woman died. Years ago when my mother spent some time in an assisted living facility, 911 was invoked nine times within a single year before they ejected her to a nearby nursing home, claiming they could not provide care. Each of her ER visits involved either my sister or me – racing to the ER from work so that we could explain her history – one time we stopped a dose of Bactrim that she was allergic to – another time we interrupted her inaccurate description of her medical history cheerfully being offered to an intern who had not checked her chart and apparently did not know she had dementia.

Absent an advocate, 911 for memory care residents is a recipe for disaster. But what if we had lived a thousand miles away or more? Or were out of town? What if we had never considered that possibility and had no local backup? What was the contingency plan offered by the assisted living community to provide a proxy advocate? The answer is NONE that was described in the stack of papers we signed. So who would have met her, how would that trip to the ER been anything but a disaster in miscommunication and worse?  Some hospitals offer volunteer advocates to at least be present to contact a family member who can provide long-distance advocacy.  But this places advocacy completely outside of the assisted living community which has been entrusted with care. So is this a fundamental process and policy problem and how can family members who believe their loved ones are safe behind a locked door be confident that they are just as safe when 911 is called? 

After the emergency fact, policy is articulated. If you further search about the California CPR incident, you can read Brookdale’s policy on CPR – which is broken down by state – and is clearly lawsuit-prevention-ready. In another scenario in my own town, a 90-year-old resident of a memory care unit was rushed via ambulance because a visiting home health nurse and the shift nurse concluded that the resident was at risk for pneumonia. So 911 was called, EMTs arrived – and the resident was in the ambulance before her own doctor or family (oout of town) was reached. EMTs in the ambulance listened to her lungs, declared them clear, but it was too late. Since an ambulance cannot be turned around, she arrived alone at the ER where, fortunately, a family friend met her and stayed with her for six hours and thousands of dollars of staff time and tests, all normal. The facility cited its policy to send memory-impaired residents to the emergency room unaccompanied.

What is the role of senior housing in reducing trips to the ER?  Many expend energy and expound on the topic of reducing unnecessary trips to the ER and associated hospitalizations. But what is the official policy of the assisted living industry? The industry acknowledges that state-by-state rules put the industry in conflict with new health care regulations.  Okay. And staffing limitations certainly make it difficult for AL or SNFs from sending a knowledgeable person along. But there is nothing in the rules or even its own policies that prevent it from having an on-call relationship with a home care agency. There is nothing in its policies that prevent communication with a resident’s doctor and family before 911 is invoked if the patient’s condition is not dire. Are limitations discussed, disclosed and understood when papers are signed at move-in? Thoughts welcome.


Laurie -

You raise an interesting question about the role of assisted living or a SNF in actually managing the care of a loved one. After a decade advising families and speaking about aging, I've concluded that assisted living is no more than a group housing arrangement and that the family is still responsible for creating a parallel and separate infrastructure of support for their loved one during a medical crisis. If the family is not living nearby, that may mean keeping a geriatric care manager in the loop for just the kind of situation you described.

Many adult children may prefer to think otherwise, but their parents will not be well cared for without their direct intervention or a proxy hired to play the role you and your family played. Seniors remain frighteningly at risk and 911 calls and the ER trips are why we see high medical expenditures in the last few years of life. My guidance is always to move a loved one into a facility near a family member if you want them cared for properly. AL is a business, not a social welfare agency. Consumers must beware.

For reference, my sister and I kept our mother who lived with Alzheimer's disease at home with aides until the end. In the last 4 years of her life, she was hospitalized for five days. She had the highest possible quality of life and it was a FAR less expensive option.

My mom faced similar problems when taking care of aging friends that were in senior housing communities. The lack of communication and centralized records surprised me and we assumed it was an isolated issue in small town Iowa. After searching for solutions and talking to other senior care operators, we found that this was a pervasive problem.

Fortunately, I'm a technology entrepreneur, so I set down the path to creating a solution. Next month we'll be releasing CareTree. It allows senior care providers and families to document all the information in a single place, collaborate effectively, and communicate more efficiently. Now, when a situation like the ones Laurie mentioned happens, the family and emergency contacts would receive a text or email to notify them. The doctors could also log in and see all of the history for the patient.

This is a big problem, but we've created a solution.

Thanks for bringing up such an important point.

It can take a lot of detailed, repetitive discussions about care planning w/ALFs and nursing facilities about how to handle various issues (i.e. not sending someone out to the E.R. for every bump and scrape). ALFs in particular can be challenging because they aren't set up or prepared to handle much in the way of medical issues. It can be done, but often takes a lot of persistence and particularly understanding regulations, the "way things work", questions to ask and what you can expect.

Readers might be interested to read some additional "E.R. stories" which reiterate the need for an advocate at the E.R. As care managers, we have met so many clients at the E.R. over the years (some with families out of the area, others who rely on us to help them navigate things even if they are local)...and I always shudder at the thought of the alternative scenario that might have occurred.

P.S. On the tech side, whether family caregiver or professional advocate, using an online PHR/EMR system is an absolute treasure during these emergencies. The E.R. personnel are typically so thankful to have an advocate there w/good info. being provided...just imagine being a caring professional who wants to do the right thing for the patient, with poor information (or none) as background. I'll never forget coming in to meet one of our clients, the doctor had beaten me there by a few minutes and the conversation was going something like this,

"Ms.___, where did you come from today?"
"Pennsylvania" (hmmm...maybe off by a few years)
"Uh, ok. What brings you to the E.R.?"
"The what?"
"The emergency room."
"Why am I in an emergency room?"

You also bring up an essential point about understanding (digging in to) expectations and limitations upon move-in (and revisit as things change).

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