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Mom is in the hospital and we don't know what she would want
December 9, 2011 9:06 AM   Subscribe

My mom is in the hospital on a ventilator. She went in three days ago. Things are not looking very good at this point. They've tried weaning her form the vent 3 days in a row with no success. She has never filled out any advance directive paperwork. My siblings, stepfather, uncle and I have all heard various stories from her over the years for what she would want in this kind of situation.

Yesterday, they reduced her sedation so we could speak with her. She was very agitated, in distress and in pain. Eventually we asked "do you want this to stop". She nodded. The problem is that we don't believe that nod can be construed as an informed decision because she has been sedated for the majority of her time in the hospital.

A big problem here is that my mother always specifically avoided doing anything involving end of life planning. There's no orders on what she would wish in this situation. There are no burial arrangements. There's even a huge argument as to whether she would want to be buried or cremated.

So I'm looking for advice on how we should proceed. Do we ask for them to completely remove her from sedation so we can attempt a real conversation to ask her what she wants? Do we take a vote? Draw straws? Obviously, this is emotionally draining for all of us. We've been at her bedside in the ICU since Monday and are all incredibly exhausted. Thanks
posted by Cat Pie Hurts to Health & Fitness (19 answers total) 2 users marked this as a favorite
 
I'm so sorry for what you and your family are going through.

If available, I would contact the hospital's pastoral care department. If you or your mother was part of a faith community, the religious leader can be informed and brought in (they might have some ideas of what your mother wanted). If not, the chaplains on duty should be able to facilitate the group conversation at this difficult time for all of you. You all sound exhausted and getting the fresh set of eyes of a neutral presence in the room might help you.

If that isn't available, the doctor should be able to provide some direction. The problem with the question "do you want this to stop" could mean anything from just "more pain killers" to "let me go." Your mom hasn't given you any definitive plans or signs of what she wants. And there is a chance that her pain, even when sedation was removed, wouldn't allow her to answer in a way that would objectively, for you at least, provide closure that "you did the right thing" (whatever that means).

The pastoral care department is trained to be involved in situations like this. It doesn't matter whether you are religious or whatever the religiousness of the chaplain is - they are trained to engage with people and families when they are in the midst of a crisis such as this. Get them to steer the conversation, to find out what everyone is coming into the conversation with, and what everyone ones. And they, or someone on the hospital staff, should be able to inform you of legal issues, who has judgement capabilities in a situation like this, etc.
posted by Stynxno at 9:16 AM on December 9, 2011 [1 favorite]


there are a ton of details missing here, but i will relate a little of my story, and maybe that will help?

my mom also had an emergency trach (which was inevitable at some point, but happened before we were ready) without much of an AD, other than that she had made clear to each of us at some point in her life that she wouldn't want to live on a ventilator, especially if she could not regain other functions (because portable ventilators are available, so it is possible to maintain a life with one).

it took her almost a year to wean completely off the vent, and that happened only with a LOT of physical therapy and support. she always had days where she went back on the vent at night or for a few hours during the day. (she had ALS, fyi)

i think there is some myth to the idea that lifting someone out of sedation will allow them to tell you what they want. we did this with my mom, the doctors assured us that she would be lucid. and she appeared lucid at the time, and she told us to proceed with the surgery for the permanent trach (which shocked all of us). in recovery, she had absolutely no recollection of the even. none. she had no idea that she'd been sedated for 3 days or that we took her out of sedation, she didn't remember the conversation we had, she didn't remember the doctor telling her what her options were. please note, i don't know if this is typical or that your mother would have the same experience.

in the end, we let my father (her husband of 30 years) make the final call. my sister and i both gave input, but we chose to leave the decision to him, because he knew her best. and we all agreed that whatever he thought was best, we would accept.

feel free to memail me if you want. this is such a hard thing and i'm so sorry you are dealing with this, now.
posted by unlucky.lisp at 9:18 AM on December 9, 2011 [2 favorites]


I'm so sorry this is happening.

My dad's passing a few years ago involved a decision to remove his ventilator. Our decision was made a easier (but not at all "easy") by the fact my siblings and mom were all on the same page. You've got it much harder - again, so sorry.

My thoughts, for what they're worth, are:

1) Who are you talking to in the hospital? We got the best, most realistic advice to help us make a decision from the "lead" doctor -- in our case, a neurologist. Tell the doctor exactly what you're struggling with when he talks to you about the prognosis and your options. There's a tendency sometimes to kind of "freeze up" when you're confronted with the big shot doctor. Try not to do that.

2) Is there a hospital social worker or chaplain available? It may be hard to ask for that kind of help, but lean on those people -- it is what they are there for.

3) I'm not sure you will get much out of taking your mom out of sedation to try and talk to her, besides the stress of seeing her in pain and agitated.
posted by pantarei70 at 9:27 AM on December 9, 2011


In addition to Stynxno's excellent answer, I can also suggest the social worker(s) at the hospital as an additional practical resource, although their availablility varies.

Lawyers got involved in a similar situation with my grandmother--avoid that. What swayed me was when the nurse told my aunt that she would not keep a loved one on life support in that situation. Obviously it didn't sway everyone.

Hang in there.
posted by the young rope-rider at 9:27 AM on December 9, 2011 [1 favorite]


I'm sorry your mother is so ill. What are her doctors saying? What is her prognosis and at what point do they think you should make a decision as to whether to remove her or not? I don't think it's fair to your mother to try and get her to answer this question. She will probably be too ill, too confused, in too much pain, to make a coherent and meaningful decision. You and your family will have to make this very difficult decision. It doesn't appear that you all have to make this decision immediately so don't. It's fine to think about it and reflect on it some.

I know it's been difficult this week but a week on a ventilator is not that long. Talk to the doctors and nurses and maybe discuss this with your family's religious leader or the hospital chaplain. Make sure everyone is leaving the hospital some to get a break. You'll think more clearly with real rest and food and not just sitting there watching her lie in a bed.

If you all do have to make a decision, give everyone a chance to give their opinion and explain their thoughts. Be respectful of each other. Everyone needs to feel heard.
posted by shoesietart at 9:31 AM on December 9, 2011 [2 favorites]


i think there is some myth to the idea that lifting someone out of sedation will allow them to tell you what they want. we did this with my mom, the doctors assured us that she would be lucid. and she appeared lucid at the time, and she told us to proceed with the surgery for the permanent trach (which shocked all of us). in recovery, she had absolutely no recollection of the even. none. she had no idea that she'd been sedated for 3 days or that we took her out of sedation, she didn't remember the conversation we had, she didn't remember the doctor telling her what her options were. please note, i don't know if this is typical or that your mother would have the same experience.

I agree with this. My father was in the ICU, sedated and on a ventilator, for over a week. Later (he made a full recovery) he had no recollection of the times he was out of sedation, or indeed that he'd really been in the ICU at all.
posted by kestrel251 at 9:49 AM on December 9, 2011


this recently happened with my mother who at the time had a DNR. At one point there was a decision that needed to be made regarding a ventilator. Fortunately for us my mother was quite aware of her circumstances and stated that she would only do it if there were a chance of being able to come off of it. The person who had the closest relationship (medically) was her primary physician ( years of regular checkups and other issues). My mother stated that she trusted his opinion. So perhaps you can contact your mother's primary physician and ask if they ever discussed it.

I also have to put in with the others who say that a week on the ventilator is not a long time, and a few attempts to take her off is not at all unusual. In the case of my mother it was a specific combination of blood chemistry, lung, liver and kidney functions that enabled her to avoid the vent.

I wish you the best with your decisions.
posted by Gungho at 9:49 AM on December 9, 2011


I am troubled by a couple of things that are implied but not really stated in your question. Has the doctor actually asked you for direction? It would appear that you are assuming that she is about to die and may or may not want treatment prolonged. You should gather all of the concerned relatives together with the doctor and the social worker and asked for a frank statement of prognosis. What does the doctor think should be done? Is this just a way of making her comfortable while she is dying or is this a means of attempting to make her well? Lastly, and most importantly, whom will the doctor accept direction from? The spouse? The blood-relations? What if there are disagreements? Ask what the hospital's policies are in this situation. They may have an ombudsman for this very situation or a standard procedure. Get their help in finding out just where you all stand.
posted by Old Geezer at 9:59 AM on December 9, 2011 [1 favorite]


My Dad was on the ventilator for four days last year, and on Day Three my brother phoned me and said that the doctor "wanted to talk to the family" and I should get to the hospital ASAP. I thought that meant that the end was imminent and that the doctor thought we should all be at his bedside. Turns out the doctor wanted to discuss "what we wanted to do" regarding a DNR. Dad was 86, he had 15% heart function, he'd been on the vent for three days.....what would Dad want? (No, Dad's condition had not changed since he was admitted to the hospital, nothing was suddenly more critical than it had been three days ago.) Problem was, Dad would never talk about that whenever the subject was brought up, even 10 or 15 years ago. Mom was always very adamant that she never wanted to be kept alive on machines, just pull the plug if it comes to that, and then she'd ask Dad what he wanted he'd literally hold up his hand and say he didn't want to talk about it, it wasn't going to happen to him, by the time he ever got that sick medical science would have a cure, etc. So our family spent many hours in that special ICU waiting room meeting with the doctor, the head nurse and some other hospital social worker or ombudsman or something going over the possible outcomes, what would be best for Dad, etc. I was one of the two dissenting votes over taking him off the vent, based on Dad's previous comments. Finally what we all agreed on was keeping him on the vent, but if he went into cardiac arrest again, no chest compressions (as it would probably break his ribs) or extraordinary measures.

At the end of Day Four Dad had somehow rallied enough to breathe on his own. For the next few days he was mentally confused about some things; he could read all the various signs in his room and knew what they meant but he had no recollection of being brought to the hospital much less being on the ventilator. He did remember having a bad cough and being short of breath at home and Mom saying it might be pneumonia (this happened earlier in the day that he'd later end up in the ICU). He eventually got well enough to go home for a short while (his heart finally gave out). As to why the doctor started discussing removing Dad from the vent back on Day Three, I still don't know what prompted the urgent discussion. I don't think it was financially motivated, as Dad was still on a very generous UAW Blue Cross contract left from the 1970s that covered just about everything. His vital signs were stable relative to his heart function. Maybe it's some sort of standard procedure that after X amount of time the staff must start querying the family about the patient's wishes. I can only advise, based on my experience, that you discuss your mom's prognosis in very minute detail with her physician and then weigh the pros and cons with all the involved family members. Do not rely on anything your mom says even if she's brought out of sedation. I'm so sorry your family is going through this.
posted by Oriole Adams at 10:39 AM on December 9, 2011


If the hospital offers this service - and most do these days - I would suggest asking for an ethics consultation. The best ethics consultants/ethics teams won't give you an "answer" but will help guide you through a framework for thinking through your (very difficult) decisions. Surrogate decision-making is perhaps the most common issue for ethics consultations.
posted by frescaanddietcoke at 10:59 AM on December 9, 2011


You need to ask for the hospital's assistance on this. They will have someone -- social worker, staff ethicist, pastoral care worker -- trained in both the emotional and family component of these decisions and in the general legal outlines. Do you know that you need to make a decision? Are you allowed to? If your mother can nod in response to questions, she may well be alert enough to make her OWN decisions. Only in specific situations will the medical decision-maker be asked to make a decision, and only in specific situations will hospitals withdraw extraordinary measures.

Probably your step-father is her medical decision-maker, if they're married, in the case that she is incapacitated. If it comes down to it, his decision will be the one that counts, short of a lawsuit.
posted by Eyebrows McGee at 11:11 AM on December 9, 2011 [2 favorites]


IANYL, this is not legal advice.

Seconding what Eyebrows McGee just said, I'm guessing that absent any documentation, that your step-father is her medical decision-maker. Regardless of the actual legal status of your step-father as decision maker, it may be simplest for everyone to nominate him as one, rather than putting things to a vote (which is sure to produce dissatisfaction). A clear authority figure acting in the person's best interests counts for a lot.

Regardless, the hospital would have dealt with this situation on a very regular basis, and has the resources (social workers, chaplains, paliative care people) you can go to. I would ask your doctor who they are, and see if their expertise was something you are willing to rely upon.
posted by Capt. Renault at 11:49 AM on December 9, 2011


We recently had an ethics committee meeting with myself, my siblings, my dad's wife, doctors that know his case and people who specialize in ethics. See if you can get something together along the lines of an ethics committee in you mother's hospital to try and get all the issues and opinions on the table. If your mom has a spiritual adviser they should be involved too.

I know from personal experience that this is a very difficult situation. There are no right answers. I would advise you to show as much patience and compassion for your family as possible right now - they might not all be thinking clearly.
posted by shothotbot at 12:20 PM on December 9, 2011


The hospital I work in has ethics professionals on staff who are available to make an assessment of situations such as these, or in any situation where there is a disagreement between the doctor and the patient concerning necessary care.
posted by jph at 1:01 PM on December 9, 2011


So I'm looking for advice on how we should proceed. Do we ask for them to completely remove her from sedation so we can attempt a real conversation to ask her what she wants? Do we take a vote? Draw straws? Obviously, this is emotionally draining for all of us.

I'm very sorry you are going through this. As an intensive care physician who is regularly on the other end of this issue, I would offer the following advice:

a) Always remember that whoever is making this decision is acting as a surrogate. That means it's not really their decision to make, but their job to make a best guess as to what your mother's decision would have been. It's critical then that a certain amount of personal and religious baggage be left at the door, and that everyone realizes that this really is still your mother's decision with you as her proxies.

b) I would suggest that if multiple members of the family are involved in this, that you find something amounting to consensus on the decision rather than draw straws, and that you all voice your concerns in an open forum. That might mean some very challenging conversations, but in my experience, when families are in conflict about end of life decisions or decisions are made unilaterally, it is likely to leave people with a great deal of residual psychological stress and guilt.

c) In my experience, trying to lighten sedation and pain medications to extract information from someone who is critically ill (and very likely not of sound mind) is a fool's errand. Do not do this.

If you have any questions about the medical specifics or are confused about what her doctors are saying, feel free to MeMail me.
posted by drpynchon at 1:49 PM on December 9, 2011 [4 favorites]


You have some good answers. Just wanted to add a few things. You may be asking this now because they are pushing you regarding a decision for an early tracheostomy. You can decide not to trach her but not to remove her from the vent either (although not indefinitely) while you get this figured out if you need to buy time.

The main issue, as some others have alluded to, hinges on the circumstances of the intubation. Was she intubated for pneumonia, and she just needs a few more days of antibiotics for the infection to clear up? Or was she intubated for some kind of progressive disease process that is not going to be curable? Does she have underlying lung disease that will make coming off the vent much more difficult for her than the average person? Does she just have respiratory failure, or does she have multi organ system failure (much worse prognosis)? These are questions to discuss in your 'family meeting' with your medical team.

In my experience, although there are a few people out there who have extremely strong feelings on the subject and do not want to be on a ventilator under any circumstances, the majority of people are willing to be intubated 'for a short time'. There isn't usually a specification given on what 'a short time' is, but I've always taken it to mean that if they're going to have to go through the trach, months of being on and off the vent, and rehab, as described with the ALS patient above, that they do not want that. The answers to the questions above will give you a good idea if this is that sort of situation or not.

The circumstances of being sedated in an ICU cause many people to have delirium and cognitive dysfunction. The medications used for sedation get built up in your tissues over time and do not stop affecting you right after the drips are turned off, especially if you have other organ systems failing too. So no, I would not try to talk to your mother about this. Sorry for the situation, it sounds very tough.
posted by treehorn+bunny at 8:21 PM on December 9, 2011


I'm so sorry you and your family is going through this... I agree with those who say that having a third party who is not involved emotionally (through the hospital) to talk with all of you about the possibilities would be the best way to go. When my mother was dying, I don't know how we would have gotten a clear idea of what she would have wanted because she was under so much morphine that when she did have her eyes open, I can't even be sure she knew we were there.

Above all, take care of yourself and I wish you well.
posted by Wuggie Norple at 5:43 AM on December 10, 2011


As to why the doctor started discussing removing Dad from the vent back on Day Three, I still don't know what prompted the urgent discussion. ... His vital signs were stable relative to his heart function. Maybe it's some sort of standard procedure that after X amount of time the staff must start querying the family about the patient's wishes.

In my mother's case it was at a point where the doctors needed to know how aggressive to be. For example there was a procedure that could have helped her heart, but would most likely knock out her kidneys. The question was about Dialysis. Now in most cases doctors and patients have months to figure out the whole dialysis question. However in her case it was days, and it would have meant only a small chance of recovery etc. and only a month or two of a very difficult (for her) situation before the end.
posted by Gungho at 12:33 PM on December 10, 2011


Hi folks,

Sorry for taking so long to update. My brother and I spoke with people at the hospital, and they said that it was premature to even be going down the "pull the plug" route. They said they hadn't even thought it necessary to provide a DNR order to sign.

So, here we are almost two weeks later. The story of why she's i the hospital is complex, but when she got here, her blood sugar was over 500, kidneys failing, in respiratory distress and had an infected leg that looked like raw, rotting meat that was loaded with MRSA. After 12 days of propofol sedation, proper care (they said the leg wound is "99%" healed, a tracheostomy and a PEG tube, they stabilized her in the ICU and discharged her to a vent facility. We've been at the vent facility for 3 days now. The facility doesn't allow sedation, so her heart rate has been up around 130 for the last 2 days. Things are not yet comfortable or stable. There are issues with infections and fevers. My mom hasn't been responsive for a few days now, so it's tough. My brother and I have been lucky in that our jobs have been ok with us taking the last 2 weeks to be with our mother, but our time is up and we flew home to Boston this morning. We're hoping to fly back down again in the next week or two.
posted by Cat Pie Hurts at 9:10 AM on December 19, 2011


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