Revoked DNR - What are the options to get it reinstated

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Msdclark

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I don't know if this is the correct forum to post this. I am also writing out all the facts in hopes I don't have to answer questions about his state or care that may affect any answers.

My 80-year-old father was diagnosed with ALS 5 years ago. He is a fighter & the worst decline has come in the last year. He wasn't comfortable with the terminology surrounding hospice, so he did not go into hospice at-home until about 8 months ago. As of May he had lost all function to communicate except for blinking his eyes & randomly nodding his head. By June, the nodding of his head was gone. When he went into hospice, as normal, there was a DNR signed. At the time he could not physically sign it so my stepmother as his agent for Medical Power of Attorney signed it and it was witnessed by the hospice nurse. He has been using a trilogy machine for the last 2 years & cannot be taken off of it for more than a minute without panicking because he cannot get breath. He is fed via PEG because he can no longer swallow.

My stepmother is in her late 70s and does not have 24/7 at home assistance, so she reaches out consistently for help from family members and friends locally. All the family members are still in the workforce & a couple of us travel for work, so we are not available most of the time. She has caregivers that come in for periods 5 days a week to perform various tasks from washing him to just assisting with medication and changing diapers, draining urine bag, etc.

He has gone to the hospital a few times over the last few months via ambulance, mostly for infections with his catheter, aspiration, etc. My stepmother called 911 three days back because he couldn't breathe even with the trilogy. His Home Health caregiver was there at the time so he witnessed this as fact. The ambulance driver advised my stepmother and the Home Health caregiver that his lungs were not functioning and he would either have to be resuscitated or die. My stepmother revoked the DNR on the spot and the ambulance team intubated him and rushed him to the hospital.

Due to Covid, the hospital system of choice, which has all his medical records was not able to take him as an ER patient. He was in the ER for a full day in a hospital system that did not have any history of medical records. They gave him norepinephrine, ketamine and fentanyl. They gave him an MRI & xray and removed alot of mucus and fluid from his lungs. His blood pressure fluctuated drastically throughout the day even with medicine to control it. He was moved to ICU around 1030pm that night.
Again, due to Covid, hospital systems are now locked down in our state so only one individual is allowed in to his room per day, limited to 8 hours. No trading out of visits by others.

The only definitive information I have received second party from the medical staff is that they are still having a difficult time controlling his blood pressure. They were also waiting a full 24 hours to see if the fluid and mucus started filling his lungs again before making further assessment.

As I mentioned above, he was placed on a mechanical ventilator. My father's desire was not to be put on a ventilator. My stepmother cannot be convinced that a ventilator is life support. She believes that a ventilator via tracheostomy is life support but the non-invasive kind is not life support.

Most of their 6 children, sister and other close family members do not believe my father would want to live like this because of his desire to have the DNR put in place. My stepmother is having a difficult time letting go and wants to bring him home on the mechanical ventilator. I don't even know what the possibilities are since he will also need regular mucus removal. We don't know what to do.
 

Mary2

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CALS
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04/2021
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GA
Hi Msdclark, I am fairly new to the Forum and there are many others here who are more knowledgeable and will be able to give you helpful answers. I can empathize with your stepmother very much. I might have revoked the DNR if my PALS was actively choking and distressed. I would hope there could be a family meeting with the medical team, but COVID restrictions might prevent this. I also wonder if your Dad would be best off in inpatient hospice so that he could receive medication to comfort him. Your stepmother probably wants your Dad's comfort most of all. My thoughts are with you and your family. I know others on the forum will be able to provide more specific direction.
 

lgelb

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A Trilogy without a tracheostomy is, in fact, noninvasive ventilation, so there may some confusion on terminology here. I gather that he was placed on a ventilator with a different mode and settings than the Trilogy, where the machine is doing more of the work. But you are right, if he goes home on those settings, he probably won't have the quality of life that he was after with the DNR.

I would just sit (virtually, on your phone) with your stepmother as she sits IRL with him, watch him with her, and talk with her about what she knows about him, what he would think of living passively, and so on. So take the discussion away from the semantics of "what is life support" and more toward his ultimate wishes for his life and death. If you can "get to yes" on his approach to life, you are halfway home.

I'm sorry that you're facing this, but glad that you're around for him.

Best,
Laurie
 

AngelMZ

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CALS
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10/2019
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US
I read your post last night just after mom and I discussed her end-of-life wishes. While she would like all necessary life-saving procedures (including a respirator in a facility for up to 23 days), she also understands that artificial life support opens horrible consequences to her own health. She signed the DNR. We have time before mom gets to your own father's stage of ALS (she's ~2 years after diagnosis and only uses the Trilogy at night), but I know it will be excruciating when that time comes. Those of us who care daily for our PALS endure the endless decisions which sometimes need answers quicker than we can think through them. Laurie has given some great advice that can help you walk alongside your step-mom with compassion. If your dad has a regularly visiting nurse through Hospice, you may also ask that s/h join the call in case medical questions come up. My prayers are with your family. -Angela
 

lgelb

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Please express your sympathies here.
 
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