What's the procedure for switching off life support?
July 22, 2013 5:50 PM   Subscribe

My brother-in-law's girlfriend is on life support and has been for 2 days, her medical team were meeting with family yesterday evening to talk about switching it off, this seems terribly quick, does anyone know if this is normal?

This occurred in Melbourne, we are in Sydney and BIL is too distraught to answer calls, so these are the only details I have. His early 30s girlfriend complained of a migraine late Saturday afternoon, collapsed, not breathing, an ambulance was called and got her breathing again, she was then placed on a respirator in hospital. When we were told that evening, BIL had been informed that prognosis was not good, encephalitis or meningitis was mentioned, swelling of the brain and he was told to expect either permanant brain damage or death.

On Sunday his girlfriend underwent MRIs and testing. Her family by this point has flown in to be by her side. Yesterday we are told that she's not responding and has no brain function, they are having a meeting with family late last night to discuss switching off life support and planning a funeral (I've yet to hear the outcome, it's not my plan to interfere in any way with whatever information I get here, and BIL is not married to her so has no power of attorney or say in any way with this decision regardless, though I imagine the family will certainly take his wishes into consideration).

Obviously we are all devastated and reeling - I saw her a week ago so they could meet our new baby and it's very hard to wrap my head around. Do medical teams make decisions that quickly in these cases? Do they not give any time whatsoever in case of recovery?

Obviously I'm missing major details but am under the impression it's encephalitis. It appears there's no coming back from this. Would time make a difference? Is the hospital being hasty? You are not her doctors, this is not advice etcetc.
posted by Jubey to Health & Fitness (20 answers total) 4 users marked this as a favorite
Best answer: When it's a case where there's no brain function whatsoever, the medical team will tell the family/spouse that the life support should be turned off, but then the next of kin gets to decide when that will happen, so though this is certainly a shock, they won't be pressured or rushed into turning off the machines immediately.

I'm so sorry you've lost a friend.
posted by orange swan at 5:57 PM on July 22, 2013 [12 favorites]

Best answer: Do they not give any time whatsoever in case of recovery?

There is no recovery from brain death, hence the short time frame. I'm so sorry for your family and hers.
posted by DarlingBri at 6:05 PM on July 22, 2013 [4 favorites]

So sorry this has happened.

If it's clear that there is no brain function, this isn't fast at all. The times that there IS delay after brain death is diagnosed, it's often because the family simply doesn't want to accept that diagnosis --- "That can't be true! She WILL wake up! God will give us a miracle!" --- or perhaps the family has accepted the diagnosis but the body is being mechanically maintained for an organ donation.
posted by easily confused at 6:08 PM on July 22, 2013 [1 favorite]

I had to make this decision for my mom - don't second guess anyone. This poor person could be kept alive as a vegetable indefinitely. Allow her family to make the right decision and leave it in God's hands.
posted by brownrd at 6:13 PM on July 22, 2013 [6 favorites]

When my husband was in this condition, the doctors waited two full days. They told me he lacked nearly all brain function, but they nevertheless monitored for those two days without dwelling on next steps. I trusted their procedures. On the third day, I made arrangements with the organ donation organization, and we had to wait for an operating room to become available.

From the perspective of the bedside, knowing what the outcome was going to be, those two days were quite long. Peace.
posted by Fichereader at 6:23 PM on July 22, 2013 [8 favorites]

My brother collapsed similarly when he was 31. We flew in as he was being operated on to stem bleeding and relieve swelling with a shunt. My sister and I visited him in the hospital at 1:00 a.m. and the next day the doctor met with all of us and showed us the brain scans, etc. They said if he'd been elderly they wouldn't have even bothered operating. But there was zero response and his organs were already starting to shut down.

We were given a choice of keeping him on life support or taking him off, and based on the information, we opted to take him off, as it was a matter of a couple of weeks instead of days.

Same thing with my mom when she had a hematoma. She was getting IV fluids plus extra oxygen and we opted to take her off life support as it was the same situation. However in both cases I don't think anyone would have said no if we wanted to keep it going. I can say they absolutely do not offer the option if there is any hope.

Very sorry for your loss, it's doubly hard when someone is so young.
posted by Marie Mon Dieu at 6:27 PM on July 22, 2013 [1 favorite]

Anectdata: when my brother died, the timeframe and circumstances (with regards to brain death) were similar. Once the respirator was discontinued, he was gone within about 20 minutes. It was the only thing keeping him going.
posted by jquinby at 6:46 PM on July 22, 2013

My experience is the same as jquinby's.
The only good thing to come out of the whole experience was the organ donation. Knowing that other people, and the folk who loved them, benefited from my loss has helped immensley.

Condolences to you and your family.
posted by Kerasia at 6:49 PM on July 22, 2013 [3 favorites]

My uncle fell when he was playing tennis, hit his head, fell unconscious, and never regained consciousness. His brain swelled, and he was declared brain dead only two or three days later. It was a terrible shock, not lessened because he was in his 60s, with three grown children and many grandchildren. My deepest condolences to you and her family and friends.
posted by computech_apolloniajames at 6:52 PM on July 22, 2013

And as far as the decision, in our case: there was a 24-36 wait. Periodically, brain activity levels were tested, but nothing ever showed up and by the end of that period, it was pretty clear that there would be no recovery.

The entire care team assembled in a room with all of the family present. All of the specialties were represented and each gave a rundown on where things stood - pulmonology, neurology, etc. All of the data and findings were laid out and we all sort of hashed through various options together. Ultimately the decision fell to his partner and my parents. Things moved pretty quickly after that.
posted by jquinby at 7:01 PM on July 22, 2013

My mother-in-law died last month after tripping and falling and injuring her brain stem. She fell on a Sunday and the family decided on Tuesday to stop life support on Wednesday after all the family arrived (she was airlifted to another state). I am so sorry you are going through this.
posted by 4ster at 7:27 PM on July 22, 2013

She could have an Advance Health Directive that specifies that she not be kept on life support in the event of brain death, which might explain the seemingly abrupt arrival at that step.
posted by bizwank at 7:55 PM on July 22, 2013

Response by poster: Hi everyone. We've heard back and it's bad news. Doctors have pretty much confirmed what everyone here has said. They don't know exactly what caused the brain swelling, but there is no hope. The family have chosen to keep her on life support for the purpose of organ donation and then switch it off. At least some small amount of good may yet come of this.

The really awful thing was that we actually thought the next time we heard from this couple, they'd be announcing their engagement. I expected her to become my sister -in-law, I sure as hell didn't expect this. Thank you for your kind words and information, my sincere condolences to all of you who have gone through something similar - and there's so many of you! - it's a shitty club to belong to. I'm going to go hug my baby now and try to stop crying.
posted by Jubey at 10:02 PM on July 22, 2013 [3 favorites]

Best answer: To clarify from bizwank's comment, advanced directives are used in cases where the outcome is more uncertain. An advanced directive is typically used in a situation where a person is comatose, but not brain dead. Sadly, there are many patients who fall into this gray area - they retain basic brainstem reflexes and so forth, but have no higher function. Such situations are much more difficult for family members. These are situations of severe brain damage.

In brain death, there is no possibility of recovery. Various tests are done, usually by a neurologist, to determine whether brainstem reflexes are present or absent and to diagnose brain death.

Even if a person for some reason wanted to create an advanced directive trying to require that they be kept on life support after being declared brain dead, it would not be heeded. Physicians are not required to provide futile care and it is generally accepted that once a person is brain dead, he or she is dead. Discussing shutting off the ventilator with the family in this case is a courtesy, not a means for medical decisionmaking. I wanted to make this clear although the answer to the question has already been provided. As cited in the article, the longest wait recommended to declaring brain death is 48 hours, and that is only for infants less than 2 months old.

I am very sorry for this terribly sad situation that has befallen your family, Jubey. My sympathies.
posted by treehorn+bunny at 10:27 PM on July 22, 2013 [3 favorites]

posted by amaire at 11:50 PM on July 22, 2013

Condolences to you and your family. Take care of yourselves and the new little life you have.
posted by Cranberry at 12:14 AM on July 23, 2013

posted by SillyShepherd at 12:18 AM on July 23, 2013

My deepest condolences to you and your family.
posted by SyraCarol at 3:18 AM on July 23, 2013

Fellow Aussie here. This question has had me upset for you all day. It's so sad for you and the two families. My deepest sympathies to you and your brother in law.
posted by Youremyworld at 3:38 AM on July 23, 2013

I'm so sorry. What a sad day for you and all the families.
posted by Dolley at 6:18 AM on July 23, 2013

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