He had a drain put into his abdomen a week ago, to drain the fluid because it continues to build up, making it hard to breathe, and the drain was causing him pain. I changed the dressing, had him assessed by the doc who put the drain in and we talked, the patient and I. He wants to have children he said. He still thinks that's a possibility and it broke my heart. I didn't tell him he's dying. Didn't tell him that he's only going to get worse. He's twenty-seven. He still believes there is a future for him. He still has hope and I couldn't destroy that.
Yesterday we had a woman, a year older than me, slated for a port insertion. On the requisition it said that the patient was autistic and nonverbal. I talked to the doc and he said he wouldn't do it. He said it would traumatize the patient and the nurses and himself. This poor lady had a biopsy in our department a month ago and had to be held down, even after giving her ativan. She sat up and contaminated the sterile field during the biopsy.
I talked to the patient and her caregiver. I told her what was involved. She would get a minimum of eight needles into her neck and chest. There would be a metal tunneler going under her skin and there would be a lot of pressure on her neck and chest. The patient would have a drape over face and would have to keep her neck turned the whole time and not move while we did this. I told her all the facts that I usually gloss over. The caregiver agreed that it wouldn't work.
The caregiver seemed to think the patient didn't know what was going on because she can't talk. The patient sat up during the biopsy; she was clearly communicating that this was not what she wanted. Katie can't talk and doesn't miss a thing. Behavior is a form of communication. I told the patient that we would not be doing anything to her today, no needles and she relaxed. As they were leaving I also noticed that the patient had a huge burn scar on her right neck and chest, another reason we couldn't have put the port in. It will have to go into the left side of her chest which is more difficult and more painful.
I called the oncologist, who seemed slightly irritated that we wouldn't put the port in and then told him he would have to arrange for it to be done at another hospital, which also irritated him. What I didn't say is that if it was my disabled daughter, I would not do any of this. The patient is sixty years old. I'm sure she has had a lot of trauma in her life, even if she can't express it. Chemotherapy would only add to that trauma. It's inappropriate in my opinion. We all have to die but we don't have to traumatize this poor lady again before she dies.
I'm off today. A day to weed the garden, work on some sewing, clean the floors and walk the dogs later. I'm trying to not push myself so hard to get things done, to take some time for myself, to relax. I'm not stressing over my children, they have their lives that they will have to sort out and I need to let go of what I think they should be doing. I have my own life to deal with. Of course I want them to be happy but I also don't have control over that.
I read an article the other day, and heard a radio program the same day, about magic mushroom reasearch. Apparently there is research going on to treat depression and PTSD with micro doses of magic mushrooms. The article is here.
It would be nice to be rid of the black dog for good.
Oh my heart just breaks for that young man. Only 27 and no future to look forward to! As for the autistic lady, I think you showed tremendous compassion. You are obviously such a blessing in your role!
ReplyDeleteI am not sure what I think about a patient who does not realize he is dying. On the one hand hope is, of course, good. On the other- instead of focusing on what he thinks may be his future, he could begin the process of letting go, making the connections, saying the words that need to be said. That he might want to say, knowing the truth.
ReplyDeleteBut that is probably not true for everyone. And if he really wanted to know, he would. I suppose it's that simple.
As for the autistic woman, you absolutely did the right thing. I do admire your compassion, the way you honor your patients.
Have you read any of Michael Pollan's books on psychotropic drugs? They are very, very good.
This is certainly an intense post, and I appreciate your wisdom discussing the procedure with the autistic woman. I often wonder what I would do if Sophie developed something like this, even as I know what I would do. Like Ms. Moon, I so admire the way you honor your patients and show everyone so much compassion. It's good to hear that you are "letting things go." And my friend Heather Barnes Jackson (the founder of Realm of Caring and a pioneer in cannabis medication) is now actively involved in the use of psilocybins -- she is working with Johns Hopkins on some research.
ReplyDeleteI don't know how you do the work you do. It is not at all surprising to me that the "black dog" makes periodic appearances given the intensity of your working environment. It takes a special person to be able to do that kind of job, and I admire you for it.
ReplyDeleteI love those coneflowers -- I don't think I've ever seen any quite like that. I have some miniature sunflowers in the works, too! Not sure if they're exactly the same, but I guess we'll see when they bloom. Yours are farther along than mine are.
My one regret from my twenties is that I didn't try mushrooms before I quit doing recreational drugs.
ReplyDeleteTo me, sunflowers always seem to smile.
ReplyDeleteI have no idea how you keep level and sane with your work and the challenging health issues you see. I listened to a podcast recently about Kubler-Ross and how she pioneered helping health care workers accepting and confronting death in patient care. We are such helpless creatures.
When I think of some medical procedures and treatments, and some of the conditions people live with for a while (especially if they know they don't have long to live anyway) after certain operations, I wonder if I'd choose to go ahead or to be euthanized. Seriously. That's how big a wuss I am.
ReplyDeleteI did magic mushrooms a few times in my twenties. The first time was the first time I had the experience of everything I could see (the brook, the horse, the trees, the moon, the stars, and me) being one; I've never had it again.
Bet you won't get that with your clinical doses, which I hope help.
I recall being pissed off at my mother's doctor for telling her she didn't have a hope in hell, that she had only months to live and might as well face it. In his experience it was just giving her the hard truth so she wouldn't have false hope. But I felt it also took away any hope she may have had of an unexpected recovery, too ... which some kidney cancer patients had had.
And what do we do with children, or with people who are like children? Which we all are, actually, but ... I think about Emil getting a terminal diagnosis. Would I tell him the truth when he asked "Mom, am I going to die?" It's hard to even think about that situation.
-Kate
Thank you for your kindness to the autistic person. People should not be tormented for very little gain. It's surprising that the young man has not googled what he's suffering from and learned what he can expect. The medical community too often does not stop to consider if they should do something, rather than if they can.
ReplyDeleteI'm guessing he does know how little time he has left. I had a good friend with breast cancer and brain mets and she knew but also didn't want to know. It was her way of protecting herself from the awful knowledge that she was dying; that's what she told me. I think that happens a lot and can you blame the young man?
DeleteI cannot see magic mushrooms ever being a panacea for depression. They might give relief but later there would surely be a price to pay. Thanks for giving readers like me a better understanding of what your kind of nursing entails.
ReplyDeleteI also wanted to say that sunflower is a burst of sunshine. Just beautiful.
ReplyDelete