Yesterday my sister received a call from my mom’s assisted living facility that she had died. By the time my sister arrived, EMS had resuscitated her and transported her to the hospital. When my sister got there, Mom was intubated.
Mom had a DNR. The assisted living facility was aware of it but did not communicate that to EMS. We asked that she be extubated in accordance with her wishes. She is now in hospice and will likely pass today.
I feel like I went through so much of the grief process yesterday, and now I’m sitting with anger. My mom was down for about 10 minutes. Her clearly stated wishes were not followed, and she is now having to endure more because of that failure.
Is there any recourse in situations like this? Who should I speak to so this doesn’t happen to another resident?
The first step of action to take is to carefully read your mother's assisted living facility's lease/bylaws about how DNRs are handled. There's typically a policy in place that they follow regardless of a resident's DNR directive.
***Actually, come to think of it, your first step is to get the physicians to give your mother meds to ease her spasms/pain/discomfort. Even with her DNR (finally) being respected, she needs "palliative care" to ease her suffering. These meds won't prolong her life but will make her more comfortable.***
Back to my DNR comments, continued- every assisted living facility has their own legal process in place for dealing with DNRs which are designed to protect the assisted living facility itself from lawsuits. Ethically the DNR should have been respected, but legally there's very little a person can do to enforce the DNR directive in the immediate event.
Agreed, the assisted living facility *should* have followed the DNR directive but in reality DNR directives are ignored all the time. You can speak with the assisted living facility Director about how you believe your mother's DNR was ignored and I'm sure the Director will be extremely sympathetic but will do nothing and change nothing.
There's been an ongoing major outcry in the public domain regarding how DNRs are NOT being followed in the USA. Many people are actually considering getting a large "DNR" tatoo on their chest in hopes of getting their DNR respected. Our medical system in the USA is broken.
So very sorry about the loss of your mother and how her DNR was ignored at first.
Regardless of existing advanced DNR directives (whether posted in a resident's apartment or not) once 911 is called the responding EMT must ALWAYS resuscitate and take the person via ambulance to the nearest ER. Whether the ER staff will adhere to any DNR orders is iffy. Usually the DNR order will go into effect once the immediate crisis calms down.
The only way to prevent this scenario is to die in hospice with clear DNR directives in place or to refrain from calling 911 at all.
Unfortunately it sounds like an Aide found your Mom and followed the assisted living facility's rules to immediately call 911. This involves a lot of CYA legalities. EMTs and assisted living facilities have these policies in effect to minimize lawsuits.
PS - Assisted Living Facilities State Omsbudsman are generally ineffective at resolving anything - sadly.
If I understand correctly, Assisted Living should not have called 911 and should have allowed her to pass naturally under her DNR. My understanding is that honoring a DNR is how you ensure a resident is not resuscitated.
We are not interested in pursuing a lawsuit. We simply don’t want another family — or another parent — to have to go through what we’re dealing with right now.
POLST's do get missed, and people get resuscitated at home or in the hospital despite all our efforts, but if that wasn't done it should have been. I'm sorry for both your loss and the unnecessary trauma.
"The long-term care ombudsman service is for adults aged 60 or older. An ombudsman responds to issues and complaints from people who:
Live in licensed and certified community-based living facilities.
Live in nursing homes.
...
An ombudsman can help older adults with concerns and problems related to their rights as a long-term care resident or consumer. This includes:
Quality of life and quality of care.
Privacy in care and visits.
Choice over care or treatment
Freedom from abuse and neglect.
Freedom from physical or chemical restraints.
Appeals and grievances.
Starting a resident or family council.
Denial of long-term care supports and services.
Problems with a guardian or power of attorney agent.
Issues related to transfer or discharge."
So, check whether your state has a resource like this. Also contact the on-site manager of the assisted living facility and, if the facility is part of a chain, contact the corporate headquarters.