Tuesday, May 25, 2010

She's Not Dead Yet!



Monty Python's classic "Bring Out Your Dead" clip pretty much describes how my day at the hospital nearly went.

My mother had a bad setback two days ago. As many of you know, she was rehospitalized a week ago with dehydration and high potassium but she had been making progress, was eating about as well as she usually does, and was doing OK using a Bi-Pap machine to help her breathe except when she was eating, since it involves a mask over her face.

So I had gone to the hospital around suppertime since that was when I could talk to her without her wearing the mask, plus I could help her eat. So there I was, trying to be the ever-helpful daughter, and coaxing her to eat and drink more. She was having a little trouble with choking a bit on her food and said she didn't want anymore, so I encouraged her to have a sip of milk. She sipped it and at first she seemed fine but then started to cough. Not a big deal for anyone who has something go down the wrong way, but because of her weak lungs she was having trouble getting it out. I asked someone to get the nurse, thinking perhaps she needed some suction or something to help her, when suddenly she just flopped over.

After I tried to wake her up I went and got the nurse, who came in and checked her pulse and found there was none. In a split second I had to decide whether to have her revived or not, and since I felt responsible for the whole thing, decided to have her receive a full "code." I was kind of crowded into the back of the room so I just sat there calmly while all this went on around me, as if I were an extra in an "ER" episode playing the part of the concerned family member. (No, they didn't need to use the paddles or yell "Clear!" so apparently it wasn't that hard to bring her back with some CPR and epinephrine.)

Naturally she was entubated to be able to keep oxygen going to her brain during all of this, so they took her back to the ICU and put her on a ventilator. She woke up and was aware of her surroundings, and the next day, although not able to talk due to the ventilator, she was perfectly cognizant and able to nod yes or no and express things with her eyes and hands.

But immediately the resident doctors who are in the ICU began asking me what the next step would be if she couldn't get off the ventilator. I had decided I didn't want her resuscitated a second time, and signed a paper stating that. I also knew I didn't want her to have a tracheostomy, where they would put a hole in her throat to assiste her breathing so that at least she could talk again. But she would have to have it for the rest of her life and it sounded like a very uncomfortable procedure with a limited outcome, given her age and condition.

She did well overnight but when they tried to wean her off the ventilator yesterday they said she couldn't come off it yet. The resident again asked me what my next step would be. She said they didn't usually keep them on a ventilator more than 3 days if there isn't an ability to take them off. Her recommendation was the tracheostomy which I had decided not to do.

We waited till today and went to see her and another resident asked me bluntly if we had made a decision yet on the ventilator. My mother, you have to understand, at this point is doing fine on the ventilator - oxygen levels, heart rate, blood pressure all good. The only problem is they don't think she can go off of it. My aunt and I came back later on and told this resident that yes, we would try taking her off it and that we understood she might not survive. I did say I'd like to talk to the attending physician first.

Lo and behold, the pulmonologist came in to the room and said Mom is doing OK - that she is 91 years old and will naturally take longer to come back and be able to get off the vent. He said he certainly saw no reason to rush into anything without giving it a few more days. They had started giving her liquid nourishment (since she can't eat with the vent in her throat) and he said this may give her more strength and she'll better withstand the removal of the vent.

Thank goodness he came in and told me this. I had made up my mind to be resolute and get this done for my mother's own good, thinking there would be no other choice. I know she hates the thing being down her throat and she did say yes (nodding and even writing it on a piece of paper) when I asked her if she wanted it off "no matter what" and gave her a pretty good idea that if it didn't work, that would be it.

But as it turned out, once again, "reports of her death were exaggerated." It is my belief that residents, no matter how skillful and and well-intentioned, should not be the doctors discussing end-of-life decisions with the family. They don't have enough experience to know what may or may not happen in specific circumstances. They only know the protocols and procedures they have been taught and only have limited experience in real life situations.

This is another example of the failure of our health care system and another reason "end-of-life" discussions should be covered in our healthcare as a matter of course, so that we get a better opportunity to talk about all of the pros and cons of a situation with a team of knowledgable professionals.

I am not blaming only the resident; I experienced a similar situation last time she was hospitalized with the pulmonologist who is the partner of the one I spoke to today (I like to call him "Dr. Death.") He practically convinced me my mother was not long for the world when she was in the hospital last time. She came home and lived two months at home after that, enjoying her day-to-day life; she had Easter dinner and Mother's Day celebrations over at our house, as well as enjoying a lovely lobster dinner sitting outside on our deck, with us, her stepdaughter (my half-sister) and her husband, who came up to see her from South Carolina earlier this month.

I sometimes wonder whether doctors realize how influential their attitudes can be on these types of decisions. In the case of Dr. Death, I got the distinct impression he disapproved when I told him I had not signed a DNR on my mother at that time. Guess he thought at 91 she wasn't worth saving, or knew that even if she recovered this time, she'd be back again soon - and of course, she was.

But what these doctors don't realize is that even a couple of months can be worthwhile for a person that age - another enjoyable family get-together, another chance to smell flowers and feel the breeze on her face. It isn't the quantity of the time, but the quality.

I second-guessed myself somewhat after I had them resuscitate my mother the other day. It had been very peaceful and I wondered if I'd done the right thing by having them revive her. But she did come out of it with her brain intact and as a result, at least my aunt, her sister, was able to come in and visit her and talk to her again. These things are important, both for the ill person and for the family.

I'm not saying anything against anyone who has made the choice, with or without a discussion with their loved one, not to pursue aggressive treatment. Each choice should be individual and based on the feelings of both the patient and their family.

But the doctors' influence should be kept to a minimum. The doctor should tell the family and the patient what the pros and cons are, what the prognosis is, what they might expect depending on what course of action they take, and then let the patient and the family decide. The family should not be rushed in this decision and should be given as much time as is needed, as long as the patient is not suffering.

Just thought I should share this experience in case anyone else has been struggling with this type of situation. There are no easy answers, but be aware that you need to get plenty of second opinions before making a decision. You don't want your loved one to be put in the position of yelling, "But I'm not dead yet!"

10 comments:

Annette said...

It is a very difficult decision to make. No matter how old or how young the person is. I had to make these decisions with my brother and it was the hardest thing I ever had to do.

I feel for you and know what you are going through to a certain extent.. You are all in my thoughts and prayers... and for me, you did the right thing.

Fran said...

Wow Maui~ They throw these choices at you like as if you were at a deli counter.
Make a life & death decision right now!

It is a delicate balance & one of the most important and heavy decisions for a person to have to make.

Sorry you had to go through this in such a stressful way.

D.K. Raed said...

I love that Monty Python clip!

"The family should not be rushed in this decision and should be given as much time as is needed, as long as the patient is not suffering."

To me, that is key.

Thanks so much for sharing what you & your mom are going through. It really points out the need to have a firm grasp on what the patient would want and to be nimble enough to re-evaluate changing situations. I really admire all the thought and care you are taking at this difficult time.

Damn right a woman in her 90's is gonna take a bit longer on the ventilator. Let's hope there is another wonderful lobster dinner in the future!

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Randal Graves said...

Definitely a tough call either way, but you're 100% correct: the staff (doctors, especially) is there to dispense the proper information, nothing more. The decision is yours and if I could get a few more experiences out and be aware of them, damn right I'm going to take them.

Charles said...

Maui,

Thank you for sharing. I am sorry to hear about your mother. I pray that any pain she experiences will be slight and short, no matter how long she is here with us.

You fight a good fight.

Mauigirl said...

Thanks everyone. Mom was able to get off the ventilator yesterday and was on a regular oxygen mask all day and doing well but she got tired by the end of the day so they put the "bi-pap" mask on which actually helps push air in (she still has to breathe on her own though). She didn't have much energy today but was awake and responding. I hope maybe tomorrow she'll be better...will keep you updated.

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TomCat said...

Mimi, my heart goes out to you. How difficult it must be to have such a grave responsibility, especially in the face of such poor advice. Your strength of will is inspiring.

Could it be that the reason Republicans were so opposed to needed end-of-life planning in advance, even calling them 'death panels', because they prefer saving their corporate cronies money by relegating the decisions to insurance companies and ignorant residents?

justhinkin said...

Mauigirl, please see my response (in part) to your replies in "Denver Doc Online: the mind and its matter", regarding nicotine and other therapy for the Alzheimer's patient.

There are two long posts under the name "justhinkin", and a shorter afterthought. I published them there because of interest in the material by others and I don't want to take up more "1s and 0s" and put it all here too. You may copy it here if you desire. Perhaps this link will work

https://www.blogger.com/comment.g?blogID=22979093&postID=804722921679467910&page=1&token=1275352857168_AIe9_BEzxS64i7QuPXyCRcFhUtk6Ou1Cnpd8KuZBu57SFTt7VNYHh_ZoBTyEsh1XrY866dBLULm4V4IiaSfz6jda8K3T9Qv5-MC2KOx-ew1f8HnVaMwaWAyDkr9M0X2J2xTOKVN2Y26MV0u6JixIjsZDqmmcdjDrPDA6JAx9YwXbOrLnu6fwrXdkfK7tzA6oBvduLrfelUojRUZVaxOFJbqf0HQY3Jrqp4hZ6z-QC5pZ-AAjPeqZKWg&isPopup=true

If not, the thread link for the subject is

http://femailhealthnews.blogspot.com/search/label/The%20mind%20and%20its%20matter

Look under "comments".

I know it's "pretty late" for your mom's sake, and using a dissolvable tablet may be difficult, but you had expressed interest, there, in the possibility of trying (just) nicotine, and what I suggest may be better, for reasons you will see there, if it can be tolerated.

Good luck and best wishes.