Friday, March 04, 2011

I've been thoughtful lately.

Not the sort of thoughtful that sends flowers for no reason, but the kind of thoughtful that explores ethical problems.

If you were taking care of a patient who'd specifically asked--when he could talk--for certain things *not* to be done, and you'd heard a doctor promising his wife that those certain things, if done, would only last for a couple of days and give that patient a chance at recovery, and you knew that statement was a bald-faced lie, what would you do?

*heavy sigh*

Here's the deal: a nice guy, about my age, came in with a nasty infection secondary to a recent bone marrow transplant. It was a MUD, not that that matters; what matters is that he and his wife had agreed on what was appropriate in terms of heroic care and what wasn't. He was able to talk for the first two weeks of his hospitalization, so we had a number of discussions about allowable things and dis-allowed things.

The poor guy took a nosedive a week ago. When I say "nosedive", I mean nosedive in the sense that only somebody with a platelet count of fifteen (not fifteen thousand) and a white count of two (not two thousand) can take a nosedive. It was sudden, unexpected, and horrible. I watched as the docs intubated him nasally because he was too jacked up to intubate in the usual way, then spent hours suctioning him so that he didn't choke on the blood he was oozing from every orifice.

That was something he and his wife and I had agreed wouldn't be done. Yet, because his doc said Oh, What The Hell, We Do This All The Time And People Are Better In Seventy-Two Hours, his wife gave the go-ahead.

I knew the doctor was lying at the time. I've never seen anybody get better after they've been intubated in this (much more complex than I'm telling you about here) situation.

The textbook response would be to schedule a meeting with the family and the doctor and lay out your concerns there. The textbook response never, in my experience, works. The Manglement response would be to involve Manglement, but again, Manglement never responds in the way you might feel is best for the patient.

Years and years ago, I had a guy in who was obviously actively dying, yet his docs (the same doctor, come to think of it) weren't willing to let him die. They kept pumping in fluids and pulling labs and running antibiotics, and it took me having an actual shouting match with a resident (me as a new nurse of less than a years' experience!) to change the treatment plan.

I'm not any less willing to shout now, and I'm not any less sure that what Dr. X is ordering is a bad idea, capital B, capital I. It's just that, in a critical-care unit, the stakes--no, the expectations--are different. You can't let people die with dignity in the CCU, because it's seen as a defeat. On the floor, where people die more often without the sort of technological insults they sustain in the CCU, they see dying differently. At worst, it's a neutral ending to a battle that's been hard-fought with honor. At best, when you have the privilege of laying a hand on a patient's chest to feel their heart stop, it's a victory over cruelty and unreasonable hope.

If I ruled the world, things would be different. People would still die, but it'd be seen for what it is: a transition in the same way that birth is a transition. I've talked before about midwifing the dying, and that still holds true: dying as an active process is just as much work as is giving birth. It's the lying there intubated with drips going and a tube in your nose and a tube in your bladder and more tubes here and there holy shit that deprives you of the chance to do your work.

And that, friends, is the problem with critical care: we do not allow things to take their natural course. There are some things we can intervene in, and should: brain tumors, spinal problems, you name it. The trouble comes when we start keeping people technically alive when they shouldn't be.

I do not know what to do. For the first time in my practice, I am at a loss. This is a bad feeling.


Susan from the Pacific Northwest said...

Not working in the medical arena, I would have no idea what to do. Talk one on one with the doctor? Discuss with administration your concerns in a general, rather than specific way? Like I said, I have no idea.

As a PATIENT, I would never, ever want this to happen to me. I have my directions all layed out as completely as I legally can. But my husband can be a pushover and/or easily overwhelmed. And I could see him bending to the expertise of a doctor.

Anonymous said...

You are right. In the ICU we flog people long past the point when we should stop and let the angels do their jobs. I wonder if part of this is because he is so young. Because sometimes we are reluctant to "give up" because they are young and young people aren't supposed to die.

On my unit, some doctors are much more infamous for this than others. And luckly they rotate through our unit (even the staff and fellows) and often some of the more palliative friendly docs come in at just the right time and we can take a good hard look at the goals of care.

Is it worth talking to some of the more senior nurses, the social worker, or spiritual care? How is his wife doing right now?

Let us know how things go...

Peggy said...

As the next of kin, I faced this several years ago. CCU,and young doctors all around me wanting to try this and that. A wise and kind nurse explained what life would be like if what they wanted DID work. I said enough,and I could not believe the bushy tailed younguns that seemingly wanted to try out all their bells and whistle if they could.

I will always be grateful to that nurse for giving me strength to do what I knew was right.

I'm just a civilian, but it seems the doctors fly in, wave their wands, then let you nurses deal with the aftermath.

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

Dilemma for certain. Boy howdy, Jo, I have no advice for you. May each step you take lead the way to Peace. Whatever that Peace is for the patient, hopefully.

Anonymous said...

Ethics committee?
If he's written down his wishes, the doctor should be legally bound to follow them. That is a horrendous story.

CQ said...

Does your hospital not have an ethics panel or committee or whatever you'd call it? Perhaps you should join. I think talking about it is the first thing to do. Talking about it is the only way to change the culture.

Anonymous said...

I'm healthy. I'm young. I've told my family that I am DNI/DNR, even for the short term (yes, I'd rather be dead than spend two weeks intubated in the ICU).

Professionally, I am a veterinarian. What I see done in the medical profession to patients on a routine disgusts me. I've seen physicians torture many of my loved ones and clients, then turn around and say: "the family told us to do everything,"

I agree: join your hospital's ethics committee. Or the patient advocacy group.

My experience with physicians - coming from the perspective of a veterinarian - is that physicians lie all the time about prognosis and ultimate outcomes. It's not right.

rebekah said...

That's why it's so important to have an Advanced Medical Directive. I know it can't cover every possible situation, but it helps.

I admire that you are so compassionate about this, Jo. Every post you make about things like this makes me wish I will have a nurse like you if 'the time comes'.

Watching my mom die, at home with me and the Hospice Nurses following her wishes, was hard enough. I can't imagine a wife/family going through what your patient is going through now. Peace to all of your hearts.

Phiddy said...

This has got to be one of the hardest things to go thru as a nurse. I too worked an ICU/CCU. The things that were done to patients who had specifically requested not to have them done. And, the damn doctors who did them.

We are our patient's advocates, especially when they can't speak for themselves. I have stepped on doctors toes more than once over doing what I felt was right in the situation. Thank goodness I had a head nurse who backed her staff up to the hilt.

You are still in there doing what you feel is right. I unfortunately burned out and have retired. You know what, I still on occasion miss being a nurse tremendously. I cared and I see you do too. Take it easy on yourself. You will find the right way to deal with this. If not, find someone and talk it out.

rnraquel said...

What does MUD stand for?
I'm sorry you are having to deal with this horrible situation. When bone marrow transplant patients go bad, it is awful. What is the wife's take on all this? The false hope that the MD gave her is so very cruel.

Becca said...

Rnraquel: MUD is Matched Unrelated Donor. That means the bone marrow came from someone who was a good match immune-wise (making it more likely to succeed but far from guaranteed) and not a relative - likely from a bone marrow registry. The alternatives would be a related donor (if a good match could be found who is able and willing to donate) or the patient's own cells being removed, cultured and replaced.

HeadNurse, it sounds like a terrible situation. I think what I would do would depend on how the wife is feeling now. If she's already angry and feeling like her husband shouldn't have been put through that I would encourage her to complain both to the doctor in question and to whatever authorites are appropriate.

If she isn't angry already it seems cruel to upset her more than she is just by having her husband die, so I wouldn't involve her, but might still try to either speak to the doctor directly or someone senior to him to point out that the process was always unlikely to succeed, was counter to the patient's wishes and distressed him and his wife more than necessary. I guess he's unlikely to listen, but it might make you feel better :-/

Anonymous said...

In my experience, a lot of hospital ethics committees are total bs. Maybe yours isn't, but I wouldn't trust mine with the life and comfort of anyone I care for.

I think Peggy's right- tell the wife the truth. It's really her call to make, and she sounds like she's capable of making it, once she sees the full picture.

Choose your powers of attorney wisely, people, and choose them now, way before you see any need on the horizon. Don't let these decisions fall to your nearest biological kin ... which they will if you haven't formally specified otherwise, even if you haven't talked to your crazy kinfolk in a decade.

Just My 2¢ said...

Your guy with bone marrow problems was like my Dad. He had AML leukemia and relapsed after 2 years in remission. The 2nd induction chemo killed his bone marrow and he developed multiple infections. Near the end, the medical staff was frankly stupid. Dad was able to die his way only by having family present who was willing to go toe-to-toe with any and all staff that forgot that they worked for HIM.

bobbie said...

Truer words have never been written, Jo ~ I HATED situations like this when I worked ICU.

I do, however, love your phrase "midwifing the dying" ~ it perfectly captures the essence of the ritual ~

No advice ~ just sending vibes for patience and strength for you, and a peace-full as possible end for the pat.

sherry Nelson said...

I am sorry you are feeling at a loss. I am an ICU nurse and not only have I dealt with this as a nurse, but on the other end when my FIL began to swirl the drain with end stage COPD.

It sucks. It sucks arguing with Doc that they are not listening, that they are going against the wishes of the patient and family, and that they are straight out lying.

I say call the doc on their bullshit and pull in manglement. Sure it is going to suck and it will be frustrating. Remaining true to yourself and your patients is the only thing most days we have going for ourselves. We have honor that. Feeling forced to act without integrity is how we burn out.

Anonymous said...

I hate this part of critical care. We have had a number of inappropriate intubations lately--Thank God for our critical care pulmonary group, who then says this should never have been done and takes the tube out. It is total crap to go against the POLST or the advanced directive. It makes me SOOOOOO mad sometimes. Because yes, doctors and nurses do have a responsibility to be honest, not overly optimistic about outcomes.

shrimplate said...

"Forget it, Jake. It's Chinatown."

RehabRN said...

I guess I should thank my lucky stars I'm not in an ICU/CCU setting.

Robert said...

You have no idea how pertinent this post is. Yesterday I took care of a double lung transplant on his 105th day in ICU. His necrotic bowel had backed up far enough that he was oozing gastric contents from around his trach...

And surgery was consulted.

Did I mention he's DNR?

Materials girl said...

I've had enough of my own shouting matches with Residents and Attendings for this to really hit home.
Too many times I've personally heard the patient explain what he wanted done and the MD come in when things go bad and try to bully the patient and/or wife into something that we all know will be painful and disastrous.

Sometimes short of throwing yourself across your DNR/DNI patient so they can't intubate them, there is nothing you can do.

This job is so frustrating sometimes......but I keep going back for the times I win the shouting matches and get to let someone die with some dignity.

clairesmum said...

Yuck - and docs wonder why people don't trust them anymore! Once he passes, I don't know what the rules are about contacting his wife, and you don't want to give manglement a reason to discredit your concerns. Recent article in NYT about 'unrealistic' optimism in patients who enroll in clinical trials. In acute settings, docs may be taking advantage of this thought bias to plow ahead with aggressive care.

WV glialma - sounds like a very bad cell to have show up on a pathology report

terri c said...

I heart all of you commenters above. And, Jo, this just plain sucks. Is this infamous doc a hospitalist? The one good thing about that model is they eventually go OFF for a few days and maybe the next doc on will have a clue, and a set. Meanwhile I have been told that in my state a nurse cannot initiate the kind of conversation with a family member that some have suggested you have with the wife. I don't know if that is true, though.

Anonymous said...

Amen, sister!!

jmo said...

Even though I don't work in critical care I go through a lot of the same dilemmas. I work in peds oncology & sometimes the doctors just don't know when to stop despite the wishes of the patients & families. It's especially hard when the child has no quality of life, the parents don't know what to do & one of the docs just keeps pushing one more round of chemo/radiation or one more new drug may cure the child. As nurses we do our best to advocate for our kids & families, but we often get pushed aside by overbearing attendings. Thankfully, we do have some great attendings who are honest with the families about the child's condition & tell them that the best thing we can do is make the child as comfortable as possible. I just keep fighting for my kids & families & supporting the docs who do listen.

Anonymous said...

My boyfriend spent his last few weeks in a hospital-without a directive. Fortunately they allowed him to die peacefully, but i do wonder...if he hadn't a girlfriend who would've raised hell if need be, and (probably far more effective) a brother who also grasped reality-and is an MD...would they have been as graceful?

Anonymous said...

Hey Jo ... I think about this stuff a lot, as I'm surrounded by oldsters (mom and animals) for whom I make decisions.

This is one of the BEST articles I've ever read on medical care vs. good death:

I read it a few days before I had one of my beloved pets euthanized. It really, really helped me to finally say, with a clear head and heart, ENOUGH.


I hope you have a chance to read it. It's really long.


Mary in Pittsburgh