Saturday, November 01, 2014

So, finally, my patient died.

Once in a very long while you get somebody under your hands who ought to have been let go months before.

We had somebody like that the other month: multiple surgeries for a brain tumor that was not going to go away (grade IV glioblastoma), multiple rounds of chemo and radiation, and in the middle of all of that, a surgery for an abscess that led to wound-vac sponges all down one side of the poor sot's body.

The spouse didn't want to let them go. The mother didn't want to let them go. The brother didn't particularly say one way or the other.

Ever smell a person who is, quite literally, rotting from the inside out? It's not fun.

Because, see, a glioblastoma (that's the most common form of malignant brain tumor and is, thankfully, still very rare) slowly takes away your ability to think, speak, walk, control your bodily functions. Then it starts to take away your ability to breathe. And your brain's ability to control things like its temperature and blood pressure. And, eventually, it will invade the areas of your brain that register pain. At that point, you will be in pain all the time every day forever for as long as you last.


It sucked. For us, as well as for the patient.

The only reason I can think of that this person was kept alive was that they had a significant pension that would've ended upon their death.

So their spouse, the person who was supposed to keep their best interests in mind, kept them alive for two entire months in order to get money.

I very rarely get *existentially* angry at work. I get angry at the administration, or at Manglement's bad decisions. There's one house supervisor in particular that I suspect was put on this earth to make sure my lungs get a workout every three weeks or so. But I generally don't get to the point that I go in search of things to punch. Ask my coworkers: they'll tell you that I'm the sweetest-tempered, most cheerful, helpful person they work with.

Seriously. And I haven't drugged a one of 'em.

Anyway. When this person came to us (and I'm carefully not using gendered terms here, because it would probably surprise you), they were reasonably compos mentis. By "reasonably" I mean that they knew their name, they knew where they were and why, and they'd mostly follow simple commands.

Within two weeks, the leftover tumor in their brain had doubled in size. Glios do that. The things that cancer loves are space and glucose and a good blood supply, and the brain has all three. What makes glioblastoma particularly nasty is that it's a tumor of the structural cells of the brain, so it sends out little undetectable filaments all around the original site. You can never get rid of it entirely.

But you can resect, and irradiate, and chemotherapize, and that's what happened. And when the patient developed an abscess on the right side of the abdomen, it didn't heal. It kept filling up with pus and tissue kept dying, because all the things we were doing to kill their brain tumor kept the rest of their body from fixing itself.

So at the end of the day we had a patient who was not a DNR, who was not on palliative care, who could not have a feeding tube inserted into their stomach courtesy of the twenty-five centimeter wide wound in their belly that would not heal; who had been intubated and extubated and who, finally, had to be four-point restrained because the tumor had hit the pain centers in their brain.

The family didn't want continuous pain control because they felt the patient was still able to communicate. This, when the MRI showed that three-quarters of this person's brain was tumor.

All of this made me vent uncontrollably to my buddy Mark, the neurointensivist. It made me vent to Ginny The Inappropriate Chaplain, and to my coworkers, and once to the patient's spouse (in a controlled and therapeutic manner). Ethics came in, ethics bowed out, case management was crushed under the wheels of the Sustain Life At All Costs juggernaut, and we all started to have a bit of twitchy post-traumatic stress.

Finally we discharged the patient to an acute-care, long-term setting. And there they died, after multiple codes, a day ago.

.*** *** *** *** ***    *** *** *** *** ***   *** *** *** *** ***

What nobody tells you about nursing is how cases like this can haunt you. I've dreamed about that poor person at least once a week for two months, now; the news that they'd died has turned the nightmares into milder anxiety dreams.

There's something about changing and bathing and turning a person who begs to be left alone to die that scars you. I am supposed to be alleviating pain, not causing it. I have a personal rule to touch every patient in my care at least once a shift *without gloves,* no matter what they've got, in a way that doesn't cause pain. Because, frankly, a lot of people in the hospital don't get touched without at least discomfort, and that fucks a body up.

But what do you do when there's nothing you *can* do? We were barred from starting a morphine drip or giving IV pain meds. The poor patient's brain was working against them. Everything hurt. Everything was futile.

And through most of it, the patient asked, then begged, to be allowed to go home with Dad. Dad had been dead for some fifty years, but showed up at the bedside on a daily basis, trying to get our patient to go with him.

I do not often have to get angry about injustice and cruelty. I don't often cry over my patients any more.

This one, I'll do both.


messymimi said...

Hugs to you. You don't have to publish this comment, i just want you to know i'm crying with you.

Andrea said...

I'm so sorry. Just so very sorry.

I've been there more times than I'd like to admit.

Which makes me very happy and grateful I left the ICU for pre-op and pacu a year ago. I don't regret it one bit.

Blessings to you.

Jennifer Thorson said...

How awful, for the patient, for you, for everyone who had a functioning soul.

And really, what is ethics for if not getting patient a court appointed advocate that can make it right? (I know, they're for not getting sued.)

I'm angry and crying right along with you.

Dr. Alice said...

Dear Lord. Dear Lord.

I am praying for this patient to be at peace. These things should not be allowed to happen.

Take comfort in the fact that it's over. Sadly, I can't think of anything else to say.

bobbie said...

And I will cry with you.

Please consider yourself very hugged ~

Anonymous said...

We had a DNR glio on our unit too. Truly heartbreaking. Wishing you soul balm.

Mike Maisel said...

A moving story with a powerful message: execute an Advance Directive valid in your state of residence. It will make your wishes clear to your healthcare providers and save your loved ones heartache and anguish. Thank you for sharing a case that obviously caused you pain.

Anne said...

And hugs from me. And thank you for doing your best.


Comradde PhysioProffe said...

That is absolutely terrible. It did remind me that I really should execute an advance directive.

Fie upon this quiet life! said...

Wow. What a story. I'm sorry that anyone had to go through all of that. It's so sad that anyone would be so selfish to keep a person alive for their money. Ugh.

Lynda Halliger Otvos (Lynda M O) said...

May we all take away from your experience, the will to do the right thing for our family when the time comes. I'm crying with the rest of your readers; feel the hugs.

gela said...

I feel your pain. Unfortunately these cases are not rare. I've had similar cases. I don't know where people's compassion for THEIR OWN LOVED ONE is. Choosing money over people.....sad.

Anonymous said...

Thank you for all you do. I wish people like you who will be there for us no matter what were more often treated with the respect and appreciation you so deserve.

It is ironic that your post is dated the very day that the young woman with the glioblastoma diagnosis who had moved to Oregon was able to choose to say her goodbyes with dignity and with her family present and supporting her.

Anonymous said...

My worst fears. I am a cancer survivor, although it is expected that the cancer will return (miracle, blah, blah etc.) My worst fear is that I will turn into someone that I wasn't, a bitter, angry, mean person due to brain mets, pain and fear. I have filled out the directive (for all the good it will do in my state) and have begged all family members - spouse, parents, and now that my children are nearing adulthood them too - not to torture me. I am thinking of moving to Oregon when I reoccur. You have just described my version of hell and NO ONE including the care takers should have to live it. I am so sorry.

RehabRN said...


You did the right thing.

This is where we pray that Dad (or whomever is calling them from the other side) gets over fast.

Sometimes, it's ugly the people who have to live for money.

I have to restrain myself...

Carin said...


I had a few, OK, a lot of other patients whose loved ones maybe acting this way too.

Renee said...

Thanks for sharing this, hard as it was to live and to imagine. I have a patient who haunts me, too, but he was lucky enough to be broke and unloved, and so his family let him go, much to my relief. In those moments when there is nothing to be done, everyone else gives the commands and it's us nurses who actually are in there hour after hour as witness to the pain. If they had to live with it the way we do, they would make different decision.

Rosanna said...

In retirement, I'm still haunted, Jo, by that look --(i.e., "that look" of your poor patient here, too)-- of a scared, cornered rabbit ............ except it was my elderly, dying patient, as he was taken on a stretcher out to the waiting Ambulance, because his family absolutely *insisted*, at the very last minute, on an Ambulance Transport from the Skilled Nursing Facility over to our local Hospital ............ where my patient died 24 hours later anyway.

I had offered to sit by my patient while he died and hold his hand ............ i.e., even to clock-out and simply run back to his room, and give him the dignified, peaceful, and comforting death that he so deserved ............ as a good human being ............ yet my Head Nurse said the Family absolutely insisted on his being transported over to the local Hospital.

'All the types of torture that the Geneva Convention expressly prohibits----(and is, as we all know, flagrantly ignored by many countries)----yet we nurses genuinely do the best we can............ i.e., in caring for victims of a different type of "legalized, often unremitting torture," right under our noses @ work. ('Call it what it is, right??)

You did everything you could, Jo, filling your patient's last days ............ and your patient's soul ............ with more love and care than most people can even imagine. And I ache, deeply, with you. I'm so sorry. (((*H.u.g.s.*))), Rosanna

Unknown said...

You are all of the very best things we hope to be as a nurse....and the nurse we want taking care of us. Bless you...

I had a patient in home care, who was also kept alive by tubes and wires and had decubes everywhere despite an expensive specialty bed....for the same reason. When he died, the hefty pension stopped. sad.

Allison said...

My Mom had a glio. My Dad would not accept that she would die. It was just awful, two years of awful. Due to his demands that we be upbeat and optimistic I was never able to tell her what she'd meant to me, or good bye or anything. I'm sorry you've had to witness this.

gina said...

Hugs to you. I have been there, done that, and decided after 12 years that it wasn't for me anymore. I'm so much more content in hospice.

It is horrifying what we put people through.

Chen said...

Several years ago I had a patient, an older woman with some terminal illness who was vented and basically rotting in bed. The attending, fell and even some of the senior residents approached the adult children (by phone as they never came to the hospital) about comfort care or terminal wean. The family refused every time. The eldest daughter phoned me one shift angry that she kept getting calls about this topic and screamed at me to convey that she not be approached about the topic again.

A week later the two sisters of the patient came for a visit and I had the opportunity to lay it out there for them. I explained the futility of care the body rotting in the bed and the children who never visited and did not want to be bothered. The sisters were in tears and thanked me for my honesty.

Thirty minutes after they left the elder daughter of the patient phoned and gave the ok for us to remove the vent and let her mother pass.

I learned from this experience that blunt honesty can be far more therapeutic than all the communication garbage they tell you in school and that being a patient advocate means forcing the issue here and there.

Anonymous said...

Two days ago one of my dear friends called in tears to say her mother has a glio, but her on-site siblings are being uninformative and vague. Your description makes me very sad to think what they're going to have to deal with.

It's often terribly difficult for people to stop denying what's happening and face the reality of a loved one's progressive deterioration. Yesterday I managed to enroll my father in hospice, with the support and encouragement of his doctor. However, my siblings are still insisting that all Dad needs is more "mental stimulation."

Anonymous said...

I have been amazed as to how often people are kept "plugged in" when I am certain they would not have wanted to be subjected to procedures,indignities,and unnecessary pain. I do try to understand the family not wanting to let the patient go, but at best it is very selfish.
I hope I have learned form this,as I'm not sure if a similar situation happened to me I might be initially just as selfish.

Cartoon Characters said...

Anxiety attack just reading your narrative. I guess I can't go back to work just yet.....

Fibril_late said...

We Nurses....are Chronic recepients of PTSD........Thank God for fermented beverages........and Bless us (whatever that means) for all the selfless work that we do.

Unknown said...

It gets so ugly when the family isn't able to let go at the right time. Im sorry you had to have that experience :(

Unknown said...

One of the big things I like about vet nursing is that we can all openly comfortably talk about quality of life and when it is "time". Doesn't mean the pet owners can always handle it, and some unethical horrible vets or nurses rail against it, but at least it is a topic we don't have to dance around. I know it is quite different in areas like consent and the fact that human medicine is more advanced than veterinary, but the essential thought is the same. I hope I retain my clear mind about suffering if any animal or human I love is in a horrible situation like this one day.