Sunday, March 1, 2009

Quadrapelgic for Life

“Do you have any sensation in your body?” I ask. Mr. Murphy is a little annoyed by the question. Does his nurse not know anything about him? “I am a Quad,” he mouths (he is on a ventilator, so he cannot speak). “I know that,” I say, “Some quads have sensation.” This is apparently a new piece of information for Mr. Murphy and he pauses, pleased, to chew on the new bit of knowledge. ‘What would that be like? Would it be better or worse?’ I imagine he was thinking like that.

Mr. Murphy was a patient that other nurses tried to avoid. Unlike most ICU patients, he was very sharp mentally. His situation was so frustrating to him that it had driven him to the edge of madness. When you took care of him, his lips would run a mile a minute as he told you urgently whatever was on his mind and especially what he wanted you to be doing. You could not understand any of it, and I think the other nurses found this disconcerting. He would generally ignore requests for yes or no answers, so you were left to try to figure it all out on your own. Every move you made seemed to increase his frustration.

I stopped him and told him that I wanted to do what he wanted, but could not follow him at all. In this way, I extracted a few begrudging yes’s and no’s. When he found me responsive to these, he slowed down a little and I was able to catch a few words here and there.

He wanted a speech valve for his trach so that he could talk. I told him that valves only worked for patients who are not on ventilators. He insisted emphatically that that was not the case and that he had had one before. I agreed to call speech therapy. The answer came back as I expected – no such thing existed. I told Mr. Murphy. “Thanks for trying,” he mouthed.

He could not even talk. He was helpless. He could only feel his head, and on the back of his head was a large bed sore which had just been cleaned and debrided. A white circular area the size of a yarmuka (about 5 inches in diameter) was his skull. This was the result of neglect.

Mr. Murphy was the poster child for “I would not want to live like that,” but he did not seem to know it. He did not ask for death and he did not seem interested in it (not that I asked). While I still think that, in similar circumstances, I would want to be allowed to go, I did not feel the emotional resistance in myself that one often feels when taking care of hopeless cases. Mr. Murphy was psychologically intact, and I guess this made all the difference.

As the shift went on, I took opportunities to talk with him. I could not catch every word, but sometimes I could get enough to follow what he was saying. I tried not to ask him to repeat himself too much.

How had he been injured? He had had a minor neck surgery and had fallen just afterwards. I asked about the specialty hospital where he stayed when he was not in critical care. He shuddered, “A horrible place.” He told me something more about it, but I could not follow. Something about the people there not caring I think. From other sources I heard that his sister had tried to care for him at home and that the ulcer on his head was from that time.

I asked him what his work had been. He had worked in corrections as some kind of counselor. Did he like it? “Yes. I was good at it,” his silent words were full of feeling and memory.

As I excused myself, he thanked me, “It is not often….” I could not catch the rest although I have a pretty good idea sadly.

Mr. Murphy’s sister arrived in the afternoon. They were clearly close. I gave them privacy as they talked for an hour or so. What a difference it makes to have someone who loves you in your life.


risaden said...

Thank you for caring enough to communicate with a "difficult" patient. So easy to do really, and such a gift to the person. Yet so often, people who don't speak articulately in "our" language, are not heard at all.


Leo, I have been reading your post for the past couple of weeks and I really enjoy your writing. I am amazed by some of your stories and experiences. My wife was the medical reporter for her newspaper here for 10 years and it is hard to fathom some of the things that happen out there in the medical world and facilities. Some things are just unbelievable.
You seem to have a deep compassion for the people you care for and it must be difficult to witness some of the things you see in your day to day life.
I appreciate your insight and the knowledge you have to offer for those of us who don't always get to see.

sharon said...

There is a valve that can be used on patients while they are on a ventilator. Hope this helps.

Jay said...

Dear Leo - where are you?! I'm missing my Leo "fix."

Hope all is well,


Leo Levy said...

Hi Jay. Thanks for writing. All is well. My muse seems to have abandoned me for the time being. Maybe I have said everything I needed to say. I am not sure. I am giving it some time and will see how I feel after a bit. I hope all is well with you too.

Satyavati devi dasi said...


I worked at home with a vent/quad patient and we used a PMV on her vent with no problem. Basically we put it between the trach and the vent circuit with no problem.

Some of it may be due to the vent settings; she was on SIMV. She wasn't able to tolerate it for long long periods but she would ask to have it put on for doctors' appointments, phone calls and things like that.

It *can* be done. :) Maybe ask your RT team or if they're not helpful, get in touch direct with the people at Passy.

I know this communication breakdown frustration well, so I hope you get somewhere with it. :)

Anonymous said...

leo you are such a special kind caring compassionate man. i hope your wife appreciates you!

Liz said...

Leo, I have enjoyed your blog...because I see myself here.

I worked in oncology/bmt for awhile and grew really tired of seeing so many fight so hard...their lives revolved around MD's, hospitals, clinics, nausea/vomiting, surgery...this became their life(!)...and their family's lives...and they suffered and died anyway. With a few rare exceptions, we did not get to see the success stories.

I'm a hospice nurse now and it's a good fit for me. Your blog has been a validation.

I thought, when deciding it was time to go to hospice, "At least everyone will know the score! We'll all be on the same page"...and the reality is, MD's are in denial, families are, and so are patients. They come on still fighting for a cure (not all, but probably most), still hoping things are going to turn around. The hardest part of my job is just sitting with a patient or family member, in silence, while they hope against hope and grasp at straws. At that time I don't have anything to offer but the feeble assurance that they won't have to walk this walk alone.

You take care!

Leo Levy said...

Thank you for the nice note Liz. The way things are and the way we feel they ought to be are often far apart. I think that somehow I like the exertion that is required to find a balance. Maybe that is what keeps me in the ICU. I do feel leanings towards hospice work. Maybe I will find my way there one day.

Christian Sinclair, MD said...

Hey Leo, Dethmama reminded me you had not posted recently. Glad to see you had a comment here from late April.

Everything OK?

Got any posts coming up soon?

dethmama said...

Hi Leo, I'm missing you!. Please keep writing!

Leo Levy said...

Thank you for your support Dr. Sinclair and Deathmama. I have had some thoughts to write, but have been feeling satisfied and was not sure if I should continue or not. I really appreciate that both of you have helped me to share this blog so much. I will try to oblige the request. I have been well, started a new ICU job about 6 months ago and have found it a good work environment (so there is less need to vent). I do not want to write for the sake of writing; only if I have something that I feel really ought to be said.

We just started a vacation and I do not like writing on laptops, so do not expect anything for a few more weeks. Thanks so much for your comments. - Leo.

Something Happened Somewhere Turning said...

Leo, your blog is fantastic and your writing is beautiful. You have truly captured a side of the human spirit that most people never see. I will miss your writing, but I will continue to come back and look. I hope your new job is going well.

Christian Sinclair, MD said...

keep writing.....