Hey everyone. I'm sure in this forum, everyone here has been apart of or seen withdrawal of care, but I am having a difficult time with one this week.
I have been working in the hospital setting for 12 years, and about half of that as an ICU nurse. I have withdrawn on multiple patients in the past, probably over 20, but never like the one I am encountering this week. The patient is on VV ecmo support, and has been for many, many weeks. The patient has had their up and downs, but has finally run out of options and has been given the news that there is nothing else that can be done (due to multiple reasons). The thing that is bothering me is that this patient is alert and orientated! I have NEVER withdrawn on someone that is alert and orientated that is being solely supported on a device that, if shut off, would pass within minutes.
The patients family has been fantastic and impossibly strong throughout the patients stay.
Has anyone ever encountered this unique scenario before? I am just concerned about the patient going peacefully and how that might be difficult to achieve.
Nov 29, '16
I also am a CCU nurse and generally have no problem withdrawing on patients, especially under circumstances. However once i had family withdraw on a patient who i thought could make a pretty good recovery. Patient was in her late 40s w/ a head injury. After we turned off sedation pt started to slowly make process (ex try to pull at tube, track with pupils). Neuro surgeon and I both explained to family that it is hard to say with head injuries but she is probably going to make a good recovery...could have some deficits...
family said that she wouldn't want to live if she couldnt run 5 miles every day like she used to. So we withdrew care (pulled the tube)...she lived for a few days and basically died of dehydration
The only time ive ever really struggled. It was very hard to be supportive of the family because i felt like i was literally killing a person...but it is what it is.
Nov 29, '16
What are the patient's wishes?
Without compromising patient confidentiality obviously, can you say in a very general way why the patient is out of options?
Nov 30, '16
I have, I had a middle aged pt with ES cancer, mets everywhere, so lymphedema so bad they were bedbound and became septic, on 3 pressors. Still awake alert oriented. They decided to stop the pressors. It was heartbreaking as all day people came to say goodbye. We had hospice, a chaplain and all. But the moment I had to hit the stop buttons I felt so sad.. and I have also done hospice for 5 years ICU 8. they slowly got more and more tired eventually became unresponsive, but remained comfortable. It took about 12 hours. I imagine your pt will pass more quickly. Just remember it is their right, and Remain their advocate, get them on a morphine some type of drip even though it maybe quick it will assure them they won't suffer even if they wont need it. But i would give them some along with lorazepam several minutes before withdrawing care. I would want to be asleep if I were that person! I def. suggest hospice .. a lot of Docs in the hospital think they don't need it but as a hospice nurse that went to hospitals to help to withdrawal of care it gives the families and patients extra care and attention and helps the nurse. Also the chaplains are amazing even if the patients are not religious. They don't have to pray, if patient doesn't want that. they are just amazing support! At the end of the day knowing you made that pt pass with dignity and in peace is what matters. Focus on what you did to help their comfort and their spirit, not what buttons you had to push
Nov 30, '16
Hugs. I'm sorry things are not working out for this patient. This is a hard one for sure. I agree with the PPs... get all the support you need -- that your patient needs at the bedside -- just as you would for any patient. And as you process through it -- talk to someone about it -- even a coworker/friend who knows the situation as you do. This one will stick with you and that's OK. ICU nurses become pretty adept at the arms-length thing, but you're human and you feel things and that is good.
I wanted to add -- I don't think I've withdrawn life support on someone this coherent, but my dear friend experienced this with her dad. He was very much with it when the tube was pulled. He knew he would quickly pass as did his family at the bedside. He was awake before the extubation to say his goodbyes and hear the goodbyes and then with sedation and pain control he passed with his family holding him right after extubation. It was peaceful and beautiful, even ... and though he didn't want to leave his family he (and they) had prepared for what they knew was not a choice, but the inevitable. I think that gave them the ability to make it what they could. Most of us won't have that ability when our time comes, but he/they did.
Last edit by WestCoastSunRN on Nov 30, '16
: Reason: typo
Dec 1, '16
Thanks for the words and support everyone. I am back to work tomorrow so we will see what comes of it.
Dec 1, '16
I didn't see this while working icu but have had multiple hospice patients in this situation. Some examples: several cardiac patients on milrinone/pressors/lvads that were to be discontinued; a couple ALS patients on vents who no longer wanted to be on the vent; ALS patients or cancer patients deciding to stop tube feeds; and a couple patients who were intubated for severe incurable diseases like copd who woke up after being on the vent for awhile but would not be able to survive without it and didn't want to be trached and peged.
In all cases the patients were the decision makers. Our doctors would generally ask the patient how alert they wanted to be when the support was withdrawn (especially in cases of vent removal). Obviously all were medicated as needed for signs of pain or distress- for anticipated quick declines it's good to have meds at the bedside and 1:1 nursing with either an ordering provider close at hand or liberal prn orders with titration if applicable.
Depending on the situation sometimes these patients lived for days- -a couple who were told they would have minutes after extubation actually woke up from the meds hours later asking "what now? " and i tried to make sure that the patient and family understood that prognoses are never certain before hand. Many families had a tough time watching someone comatose for days (even if they were totally comfortable) when they expected a very quick death.
I found it helpful to be there for the family meetings or to read the notes or listen to the family explain how the patient made the decision to withdraw support. Typically the decision was well thought out and often the quotes from the patients were incredibly poignant and showed total acceptance that they had reached the end of their life. many had great faith that they were headed to a better place or would be reunited with a decreased spouse/ child/parent who had been missed for so long. And hearing about the pain and suffering they often had gone through that made them decide they were done with the ventilator or whatever, you could often completely understand their choice. The wife of one younger cancer patient who stopped life sustaining meds said "my mother just died but she was old and she was ready to go. My husband wanted so badly to live, he didn't want to leave our children, but after the third day in the hospital this time he was so exhausted and having such pain and trouble breathing he told me he wanted to live but if life was going to be like this he just couldn't do it anymore-it was to hard and he was just too tired and it has just been getting worse for so long. "
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