Fuck you and your paternalistic attitude

The BBQ Pit
1

I don’t want to get into a debate about this, hence it’s in The Pit. I realize some decisions are beyond the pale, and I don’t want to debate the merits of this decision. It’s the attitude that makes me so fucking angry.

An essay in the latest issue of Newsweek cost me a few hours of sleep. I get so fucking angry at paternalistic attitudes in the medical community. This “ethicist” is of the position that if only the baby’s parents could be made to understand, they would do what the medical folks think they should do. Anytime someone has a different view, or reached a decision different from that of the medical folks, it must be because they don’t “understand”. It apparently never crosses her mind that the parents do understand, but happen to have a different fucking outlook on the situation than they do. This “ethicist’s” last sentence makes it pretty clear: “I wish, and the hospital staff I work with wishes, almost beyond telling, that people could know what they are asking when they ask that ‘everything’ be done.” You know what? Maybe they do know. Maybe it’s the hardest, most heart-breaking decision they’ve ever had to make, and the decision they made just wasn’t the one you would have made. You’re the one who doesn’t fucking understand. People may arrive at different decisions regarding life and death than you do. But from your elitist position, they’re wrong, and if only they could be made to understand as you do, they would see The Truth .

This ethicist asks a bunch of questions in one paragraph about why the parents made the decision they did. Asking those questions tells me no one much bothered to talk to the damn parents. You wonder why they chose this course? Try asking them. Were they there when you had your committee meetings to discuss the merits of their decision? Doesn’t sound like it. And what’s with the “they were young and from Haiti” bit? What does that have to do with anything? Oh, I see, being young and from Haiti solidifies your point about them “not understanding”, because young people from Haiti are incapable of making informed decisions and acting in accordance with their own principles - they should just submit to the superior insight and enlightenment of the medical community and cease trying to make their own sorry decisions by their pitiful, uncomprehending selves. That’s why you didn’t bother to find out where they were coming from, or have them at your “ethics” meeting - their views are so ill-informed and unenlightened as to be inconsequential. If they were professionals from Palo Alto would you be writing this? Oh, of course not. I forgot. By definition, they wouldn’t have had to be made to “understand”.

And what’s with this “why did they put us through this” shit? Since when do I have to consider how you’re going to feel about the life-and-death decisions I make about my loved ones? Fuck you. You don’t agree with me? Tough shit. It’s going to make for a difficult situation for you? Fuck off - it’s going to be immeasurably tougher on me/us.

I was an ICU nurse. I saw this kind of stuff all the time. Do I want to be flogged, or to flog, my loved one when it seems there is no hope? NFW. But can I conceive that some people may see life as so precious that one must do whatever is possible to preserve it? Or that they may have some other well-considered reason for arriving at a decision differently from me? Yup. I don’t happen to agree, but I understand that people may have different outlooks than mine on these most personal of decisions. When I was a nurse, part of my job was to make sure people had all the knowledge and information available to them so that they could make a decision that they could live with. My job was not to try to sell them on a course of action I felt was best, but to support them in the decision they arrived at, no matter my personal feelings on it.
Do you think that these parents were too stupid or ill-informed to sense the palpable disapproval for their chosen course of action for their child? You may think you can “detach” and provide “professional” care, and have them be none the wiser, but that never happened in my experience. Patients and families would pick up on staff attitudes, and it made the situation that much worse. I’ve had families come to me and say something along the lines of “We know people here are upset that we’re________”, or “I know everyone thinks we should______”, and it would break my heart. They’re in the midst of a terribly painful time, making terribly difficult decisions, and they have to feel like the medical staff is disapproving, or angry with them. And the rest of their days they may be haunted with questions about whether they did the right thing. Not just the usual questions, but questions buttressed by the disapproval and/or anger of the medical staff.

Do I agree with the decision the parents made? No. Do I think it’s just because they don’t “know what they are asking when they ask that ‘everything’ be done” and are in dire need of enlightenment? No, and that attitude really pisses me off.

Go pound sand up your ass. And I wish you had had the balls to say what hospital you worked for so I could be sure never to end up there.

Shaky Jake

2

I’m with you, Skaky Jake. That “ethicist’s” attitude was condescending. I, too, was struck by her repeated references to the parents’ youth and their country of origin. So if the parents had been older, well-educated white people they wouldn’t have made that decision? Bullshit. Some would, some wouln’t.

I had a friend whose 80-something father suffered a massive stroke. Numerous people told her to pull the plug on him. But she wouldn’t. She felt she needed to give him a chance, she thought it would be against her religion. She called neurologists all over the country for a consult, got Jewish ethicists to the hospital to talk over her options. She kept him alive with artificial nutrition and hydration for weeks because no one could conclusively tell her he would never wake up. He eventually got pnuemonia–she ordered antibiotics. When he died she knew she had done everything that she believed was right, everything she thought he would have wanted. I might have made a different decision, but it wasn’t my call. She is an intelligent woman–she researched similar cases, called in experts and, in the end, did what she needed to do.

Damn that ethics bitch for her condescension! As you said, it seems clear that she never talked to the parents about why they held out hope for so long. Who the fuck is she to decide how this couple should feel about their baby? Since she never bothered to ask those questions to the only people who could answer them, I guess she (and we) will never know.

3

Oh, I’m sorry, I’m just too angry to leave this alone. I forgot about this:

(Earlier she had mentioned “Her parents, who were working, weren’t there.”)

Been in the unit lately lady? This is far from a universal experience. Death doesn’t always “come gently”. Neither can deaths be “scheduled” all the time. Sure , we’ll wait until the family is all gathered and extubate the patient. Yeah, we expect them to go within a few hours. Then sometimes they linger for days, or even weeks. And all the family members have to decide “do I go back to Kansas”…“Do I go back to work”…and sometimes they die in the middle of the night, when everyone else is sleeping, or home…or at work, because they like to live indoors and eat regularly. And where do you suppose the “ethicist” is then? Not at the bedside stroking the patients hair and holding their hand, talking to them about some of the things that happened in this world during their lifetime, not even sure if they can hear or comprehend but assuming they can, telling them it’s ok to rest now, it’s ok to be tired, they’ve done they’re part. That would be me. If you’re so concerned about the quality of death, or the quality of end of life, why not pull up a chair and do a few hours with the patient, since this is so important to you? I got off at 7, but I’m going to wait until the family comes in around 8:30 to lend my support, and answer any questions they may have, because I’ve established a relationship with them. Try it some time. It does wonders for helping you see things through someone else’s eyes.

Oh, and we “make the decision together”? As if you have a say? Fuckyoufuckyoufuckyou. Your self-importance and assigning yourself significance that doesn’t exist is beyond…I’m so fucking angry at this I can’t even think straight enough to rant or think of words.

Done with that sand? Go pound some more.

Replying to my own tread. Sheesh.

Shaky Jake

4

Gee, from the thread title I thought somebody was flaming me.

Read the article. Agreed with the ethicist.

5

Have never worked in a hopital, and never will. But if something happened to my daughter, and some doctor told me I should give up hope and let her die, I’d find me a new hospital. Screw you. They kept trying because they loved their child and wanted her to live. It’s not that difficult a concept.

6

I just hope I never have to go through with this. It isn’t just whether you could stand to let your child die, it’s also whether you could stand to let it suffer such agony.

7

Subject matter aside,
Am I the only one who finds a job as official ethicist a bit troublesome? Does one get a degree in ethics to get this kind of job? How are ethics taught? Graded? What is the “graduation requirement”?

I appreciate that their job may be as a kind of facilitator for discussions or ombudsman to represent the unrepresented (e.g. the patient), but that doesn’t seem to be the role the author is playing, and to confer (or assume) some kind of meta-authority on someone because their job title is “ethicist” seems presumptuous, to say the least.

It somehow conveys “I know better than you” (what is ethical), which is, essentially, the definition of “paternalistic” as I understand it. So I guess I agree in large part with the OP.

And something about “young, unmarried…from Haiti” absolutely makes me queasy. It’s code for something much more malevolent. It was how she was defining them, not merely describing. I would have expected a lot more empathy, and a lot less prejudice, from an “ethicist”.

8

Not too many years ago, the question as to whether or not to keep Charlotte alive would have been moot, the technology would not have existed, and once that sac containing most of her brain had been removed, she probably would have died.

The entity that was Charlotte that was kept alive by tubes and machines would have had very little awareness of anything. While the parents’ plight was very sad, and their love for her very real, I personally see very little good purpose in having her kept alive that long. And not to sound crass here, but it takes LOTS of money to keep someone alive by artificial means, money from public funds that could possibly been put to use somewhere else.

I gotta go with dropzone on this one.

9

I personally agree that the decision should have been made to pull the plug–at least from the info there.

The attitude of the article, or at least certain bits of it, was irresponsible at best.

10

Ooops, forgot to mention one bit that hadn’t been quoted (the Haiti thing was already mentioned).

Bodies don’t try to die; they try to live. Some of them just aren’t up to the task, and start shutting stuff down as a last-ditch run at it. The nurses and doctors were only aiding with what the body was trying to do but * couldn’t. * Big difference.

[sub] Again, I agree with the overall position, but stuff like that needs to be cut [/sub]

11

Let me tell you a story, Jake.

Twenty two years ago, this coming October, a little girl was born. She had a seizure that very hour. She had another about every hour for the next few months. She had multiple metabolic disorders, and a set of blood chemistries that got the lab techs on the phone in the middle of the night.

Of course, everyone knew she would die fairly soon. In fact it was a mystery how she was living at all. The social workers, and the psychiatric councilors provided grief management for the family. The best advice was that they should keep their attention on the siblings, and each other. The child would die, although no one could say if that would happen today, or in a week. The mother stayed at her bedside for a month. The father steeled himself to the inevitable, and went back to work.

I met the little girl a month later, at the age of two months, when she was transferred to another facility, because the Neonatal ICU needed the bed. Still suffering from the same overwhelming symptoms, and now loosing weight, and choking on any attempt to feed her, the little girl was pale yellow, and as fragile as a spider web. Her parents permitted the transfer to the less supportive environment because “It isn’t a favor to her, to prolong her life.” It was what every professional told them. Their grief and sorrow was heart wrenching.

Now, I help care for that same little girl. She never did die. She still has handicaps you might find overwhelming to contemplate. And the thing I hear from the staff here, now is: “How could her parents have left that darling child in an institution. Don’t they love her?” They missed out on the seven or eight times that her parents were summoned to what was assumed to be her death watch. They don’t know about the patient professionals who advised them that she could never survive. They did not know the heartbreak of having a child die, not once, but every day for a decade.

No one understands the pain of a child’s critical disease, or handicap, and what it means unless they have experienced it, as the child, or the parent. They don’t give a degree in that. Pompous Assholes indeed.

Tris

12

I gotta chime in here.

It’s very easy to sit back, read an essay in a magazine, get pissed off about the author’s attitude, and make a value judgment based on a remote situation that gets introduced into a hypothetical discussion (If it were MY kid, I’d…).

It DID happen to my kid. My month-old son was on life support, and by all indications, it was hopeless. Although he was physically all right, he was so brain-damaged that he would essentially remain a vegetable for the rest of his life. I consulted with a rabbi, the baby’s doctor, and thought about it long and hard before I ever made a decision on what to do. This wasn’t a decision based on convenience or financial considerations. It was a decision on what was in the baby’s best interests. I chose to terminate the life support and let the baby go. He died a relatively peaceful death, with little suffering. I have not regretted my decision and I do not apologize for it.

I read the essay, and I did think the author’s attitude was a bit condescending. However, I also think there could have been considerably more communication between the hospital and the parents. The hospital should have explained their position more clearly, and the family (or a representative) could have done the same. There are no right or wrong answers to ethical dilemmas; in fact, the opposite is true. There is lots of room for finding common ground, if we would only do so.

Robin

13

Doctors are often in the unfortunate position of being the advocate for reality, when reality itself is the enemy.

I just finished my first clinical rotation, during which I saw a man die for the first time. What struck me about the experience was how death is not an event, but a judgement call. There is a protocol to be followed, for sure, but the time of death comes when the doctors decide that he’s not coming back. If he’s called at 11:48, he’s not really any more dead than he was at 11:47 or 11:46.

Is that “doing everything”? Not really; they could keep doing CPR all day and all night. But doctors understand the reality, and know when they’ve reached the point of futility. Should a family expect the code team to keep going for hours upon hours, despite the fact that the patient will not breathe or pump blood on his own again?

A doctor needs to try to understand the emotions and the wishes of the patient’s family, but he also has to see the situation objectively. A doctor who is cold and uncaring will be of little help to a family in this time of need, but a doctor who is overly emotionally invested can let it cloud his perception of reality, and can offer hope when there is none. It’s a fine line to walk.

As bad as I hate to even think about it, the doctor also has to be mindful of finances and resources. The family might say that money is not any concern, but the doctor should be mindful of the fact that extending a newborn’s life for two days might leave this family destitute, or cost them more than they will make in five years. Again, the decision ultimately rests with the family, but the doctor needs to help them understand the reality of the situation.

I, too, took issue with the author’s implication that “young and from Haiti”=incapable of understanding. The point could have been made otherwise. The problem is that these are extremely important decisions being made during a time of extreme emotional stress, a situation that often leads to regret. The doctor needs to make sure the family is making a decision they will not regret later on, whatever that decision may be. If the family will not be at peace unless “everything is done”, he should respect that. If they want to spare the patient suffering, or if they don’t want to postpone the inevitable, he should respect that as well.

Sorry for rambling–it’s been a long week.

Dr. J