Palliative care doctor gives my dad less than 5% chance to live. Has anyone else had to make this same decision?

Yes, last year my mother contracted Covid. At age 92 with COPD and advanced dementia I knew she had little chance of surviving. And if she did her quality of life would be poor. I knew her greatest fear was being kept alive on a ventilator. So when the pulmonologist at the hospital told me she had a low chance of survival I made the choice to let her be. No intervention, no intubation, just palliative care. The doctor agreed with me. At that time, early December, cases were surging and I chose to let someone with a better chance of survival to get the ventilator and care Mom would have been given in ICU yet still would have died. I was fortunate that my siblings both agreed with my decision. Mom died a week later and I do not regret my decision.

It is a tough decision, but your father entrusted you with his POA and trusted that you will make the best decision. My sympathies to you and your family.

I have been the RN of patients placed on comfort care.

Thank you for allowing him to get compassionate care for however long his life is,

I’m sorry for your loss and wish you comfort and peace in the days ahead

I'm sorry for your loss.

Update: My dad passed away on 11/24/21. I was there in the hospital room sitting right by his side. I really think he held on until I got there to see him one last time. I would like to thank you all for your advice during my time of need.

I believe I just heard on the CNN news of a woman who had Covid19 and was on a ventilator in a coma. The doctors were recommending to take her off the ventilator just before they did that she awoke!

https://www.cnn.com/2021/11/18/us/coronavirus-maine-recovery-trnd/index.html

I know it’s hard, but you need to make the best choice possible. Pray to God to help you.

My Caregiver LO started to develop breathing problems. When it first occurred I was able to stop it and my LO responded well. Two days later in morning my LO’s breathing problem resurfaced and I took him to the Hospital ER. The hospital placed my LO in ICU with a ventilator for about a day and later replaced it with only nasal oxygen support. The following day my LO was exhausted and tired, but was released from the ICU to a regular hospital room. At night I went home feeling good that my LO was doing better. I got a telephone call the following morning about 4AM from the hospital doctor who called to tell me that my LO had passed away in his sleep.

My sister in law is on a ventilator right now with Covid in the icu after getting CPR. This is day 3. She has severe diabetes, lupus, is an amputee, has cirrhosis of the liver, needs blood transfusions 2x a week, has severe varices in her throat, kidney disease and even more issues I can't remember at the moment. She literally eats crap all day long and goes into a diabetic coma 2x a WEEK. Honest to God.

Why the family is allowing the doctors to keep her on the ventilator is BEYOND me, truly. To save her life now so she can die in agony in a few months ANYWAY???

You're doing the right thing, my friend. I only wish my husband's family would wake up and make this choice for my SIL. Immediately.

Sending you a hug and a prayer of empathy and compassion. I'm sorry you're going thru such a thing, I really am.

God bless you Donte. I work in an ICU and I can;t tell you how often we wish people would do this for their loved ones. We watch the pt struggle, be in pain, fight the vent and the staff, and be in horrible pain and suffering while the family thinks they are fine because they are "in the hospital", I recently had a pt we coded 4 times in 2 hours before the family came to the realization that he was beyound help.. and he did not want this. Broken ribs, smashed heart and lungs,, it is brutal. Palliative care is available in my hospital, and we ask for a visit to every pt who we feel may benefit from it, or the FAMILY might. I was lucky my Mom was VERY clear on her wishes,, she signed herself up for hospice from PC and passed peacefully 1 week later. Was it easy? Not for me but for her it was. You did the right thing.

Dear Donte1423,
i am so sorry to read about what you are going through and the difficult decision you have had to make.

i was in a similar situation this time last year with my mom. She had Alzheimer’s and caught COVID. Her symptoms of COVID were not what everyone else experienced. But as per the doctors at the hospital something they saw frequently in elderly patients. Aside from the positive COVID test her symptom was an increase in her dementia. She no longer recognized me (for the first time) and was refusing all food, fluids and medications. Because she would ask “intelligent” questions the drs couldn’t force meds or fluids into her. Her questions were asking what the medications were that they were giving her. Then she would refuse. My mother was a nurse for decades and it was drilled into them that when medications are offered or given you always triple check what they are. Anyway the dr believed if they could force fluids and meds into her she would recover to at least how she was just before her COVID. So I got a court order to declare her unable to make her own safe decisions and they started her on fluids. Up until then when the drs would tell her that refusing food and fluids she would pass away, is that what she wanted. She would be silent. My mother loved life so I assumed she still felt that way and believed the drs when they said her refusal for food was due to the COVId delirium and once she got fluids she would be better. Once they started the fluids she was saying she wanted to pass away. Since I had the court order they couldn’t stop fluids unless I said to. I felt that if she wants to pass away I cannot deny her that for my own selfish wants (wanting her to still be here). She would not let me suffer so I cannot let her suffer. I told them to stop the forced fluids and to make her comfortable. Still offer her food and drink and if she wants it to give it to her but no more forcing her. I told them she is not to suffer in anyway. If her soul wants to move on I have to let her. I also told the doctors that because she is not to suffer they are to administer any meds that are needed to ensure she feels ok physically and emotionally. Even if it means she would pass sooner. It broke my heart and I was able to be with her the day she passed away. She did not appear to be suffering in any way which was my prayer for her. All of this broke my heart and the guilt I felt over having to make the decision to stop treatments was awful but I knew it was the right choice. A choice for my mother’s soul/heart over a choice for my own happiness (if that makes sense). I loved my mother dearly and still do and miss her terribly but still feel it was the right choice. A hard choice but the right one for my loving mom.
i hope this long response made some sense and helped a bit.
know you are not alone in having to make these difficult choices for your very loved parent and know you are doing the right thing. Your heart knows what is right for your dad. And your dad knows that you live him so much.
God bless.

I am so very sorry. I am glad that the doctor has leveled with you that further torment by medical intervention cannot help. Ask the doctors to reassure you that your Dad will be medicated below the level of struggle or dreaming so that he has peace. You are facing the loss of your Dad. When a doctor tells you 5% he is really telling you that he sees no hope to survival. I am so very sorry for this loss. In my own case my brother had little survival hope from sepsis unresponsive to antibiotics and asked to return to his home, was still able to communicate. He lived only four days more heavily medicated so as to remain at peace. I actually had to fight the doctors long distance (it was covid times) to get him home per his request. They knew he had little hope but were reluctant to let him leave. Hospice was my stalwart, and my great help at that time, because this nationally known teaching hospital had no palliative care specialty (and still does not in these our times).
I wish your Dad peace and again, am so sorry for this loss. It is a difficult decision for a lay person; for me as a nurse it was an easy decision, but difficult to get done. So again,I am grateful for the good doctor in this case.

I think you’re very brave and kind to make the hard choice to reduce his suffering.

Hugs to you as you travel through this difficult time.

My dad made the decision himself to stop treatments that weren’t helping anymore. He was ready and lived only about a month. You’re looking out for his best interests and he’s blessed to have you. I’m sorry you’re going through this and wish you both peace.

My dad refused the vent when he was admitted for covid and he kept removing the oxygen.

He was really sick and he died quickly. Which I am grateful for. He had put up a good fight and it was his time to go.

Great big warm hug for doing what you believe is the best thing for his quality of life. That is what really matters IMO.

Sometimes stopping all that aggressive care and letting the body rest can turn things around. Sometimes it won't, but at least it isn't a daily struggle to keep going.

My mother was put on hospice on January 1 this year, but we continued her regular medications. Finally in early July we decided that her meds were no longer doing what they were supposed to do and took her off them.

After seven years on diuretics and still having hugely swollen legs, we took her off and the swelling went away overnight. We took her off blood pressure medication, and her BP didn't change. We took her off the medication to regulate her heart, and her heart stayed about the same. She seemed more comfortable than she had in years.

Yes, she did die three weeks later, but she was truly comfortable at the end and that was my goal. There was never any recovery expected, but I'm happy her body let go on its own terms.

I am a firm believer in a case where there is no cure then Quality of life is better than the quantity of life.
You know your dad. What would he want? What choice would he make for himself? He made you POA for a reason. My guess is that he knew that you would do what he would have wanted to do himself if he had the voice to say so.
Not exactly the same but when I placed my Husband on Hospice all the choices I made for his care were choices that would put less stress on him, limit anxiety, limit testing, limit discomfort. If that meant choosing NO medical intervention that is what I did. These are tough decisions and if made with your heart in the right place they are the right choices. I learned to not second guess myself.

My MIL's story is not quite the same as your fathers, but she is 88 (now) and was in LTC when covid ran through her facility in May 2020. Because she signed a DNR and had a Living Will instructing no heroic medical efforts for her, they put her on 5% oxygen and Tylenol. She got very sick and barely ate or drank for 4 weeks, not even as IV. We called her out-of-town sons in to say goodbye to her (standing outside her window where they were venting her room as that's how it was at that time). The doctor recommended her for hospice and so she had more tender attention but still no more meds or fluids or anything. Then, at the end of her first week in hospice, she improved, to everyone's astonishment.

I don't want to fill you with false hope, especially since she didn't have any other underlying health issues, and no blood clots, but just saying that anything can happen after he's on hospice. My MIL was so weak she couldn't even hold the phone to her ear to talk to us through the window. She has mild/mod dementia and memory impairment. She did make a full recovery. I wish you much peace in your heart at being in this situation and wisdom as you make decisions for him.

I have not personally, but I feel this is the right thing to do.

Does this entail him coming off the vent?