Some throat clearing:
I’m pretty sure regular readers of this sub-blog are familiar with the fact that I fishin’ adore my disabled son. People who come to only this post might not be aware of it. So allow me to say right off the bat, I am writing about a different era. He’s now 2 1/2, and I love him with my whole heart, and if I believed in God, I would thank Him every day for letting me parent him just as he is.
I know a fair amount about applied ethics in the realm of medicine. Abortion, euthanasia, enhancement, prenatal testing, autonomy, beneficence, etc. I’ve taught applied ethics courses, although I would not consider it my area of specialization. What I don’t know very much about, although it’s a related topic, is the professional ethics of doctors. I want to discuss my experience as a parent of a newborn patient and what it led me to believe should be the way doctors conduct themselves under similar circumstances. I would welcome any corrections from doctors (including my esteemed and beloved co-blogger) on what their professional ethics require.
Some background on my son’s condition, which will help explain why the doctors and my husband and I were all thinking and acting the way we did. My son has two genetic disorders. No one else in the medical literature has these two together. The first one has a name and at least has a tiny bit of research behind it. In one study, everyone who had a remotely similar arrangement was profoundly disabled (i.e., no speech, non-ambulatory, little to no self-care). There is much less information on his second disorder (which involves some extra genetic material). People who had less of the same chromosome’s extra genetic material tended to be mildly affected. People who had more of the same chromosome’s extra genetic material were profoundly disabled and died in childhood. No one had just his amount of extra genetic material. The combination of the two disorders did not paint a pretty picture.
So things looked bleak in the months after his birth. He required a feeding tube and supplemental oxygen, and occasionally intubation. He barely responded to his environment. An MRI suggested he would be blind since his optic nerves were tiny. A sensorineural hearing test showed moderate hearing loss. His brain was not growing. He would randomly stop breathing and needed oxygen bagging. We were woken by a 3 am phone call saying he had been near death but revived.
Here’s my advice to doctors dealing with a patient or patient’s family facing a catastrophically life-altering condition. 1) Coordinate with one another about what to say. 2) Stick to your specialty or subspecialty. 3) Most importantly, give patients the facts, but let them make ethical and lifestyle decisions without trying to influence them (unless of course, there’s a totally gross violation of ethics).
Before we got our genetic test results back, doctors guessed at diagnoses, but no one knew for sure. Which is fine! He had an unusual presentation of what turned out to be a unique variation of a very rare syndrome. So that makes total sense. But then one doctor told us that our son would never have a normal life. But, she continued, I should be okay with that, since her cousin had Down syndrome and he was her best friend. A few minutes later, another doctor charged into our room and announced it was completely inappropriate for the other doctor to make guesses as to prognosis, and no one knew anything yet. This second doctor had been very upbeat; much more upbeat, I now gathered, than she actually felt. If they could have coordinated, maybe they could have come up with the middle ground of telling us the truth, which was that they strongly suspected he would not have a normal life, but there was no proof as of yet. And, I wish it were needless to say, having a cousin with Down syndrome does not give one the authority to tell a parent how to react to devastating news.
After two MRIs showed no brain growth, a neonatologist told me that he would never walk or talk. As a neonatologist, she does not see the long term outcomes of her patients. So she knew this…how? An ENT told me not to worry about hearing loss because he would never speak anyway. So….he’s suddenly a geneticist? A developmentalist? A neurologist?
Another doctor sat us down and advised us to institutionalize him. How does being a doctor give one any expertise on what it’s like to live with a disabled person? Does he have any idea what he’s asking a parent to do when he’s asking them to say they cannot raise this child? And again, he was another neonatologist, and did not see the long term outcomes of his patient. (Actually, I’ve always wondered if Gene Tierney’s severe depression was not simply because she had a disabled child, as she apparently thought, but because she was pressured to institutionalize her at the age of 4.)
The worst was a situation about a DNR (that is, a request not to resuscitate). One doctor told us we really ought to create a DNR because we should “think about quality of life.” The obvious implication was the she thought his was a life not worth living. Another called us at home later that evening to say we did not know how his life would turn out. He said over and over, “I just want to make sure you know what you’re doing,” effectively communicating his opinion without directly saying it.The next day at the hospital, when I was at my son’s bedside, another doctor and and nurse sat down next to me and asked what I thought about a DNR. I said we hadn’t decided anything. They gave each other an uneasy look, and the doctor said, very unpleasantly, “Most parents come in here asking us to do everything they can to save their kids’ life.” It was so nasty and snide and judgmental. And something tells me that she had no idea what it was like to even have to think about such a terrible thing about one’s own child. (In the end, we got the paperwork for the DNR specifying that we should do most interventions to save his life, and not doing only the most invasive interventions, but never even signed it).
I think the behavior of all of these doctors were completely inappropriate. If they think it inappropriate to advise us directly, as some of them obviously did because they avoided direct statement of their opinion on the issue, I’m not sure how they possibly felt that indirect but perfectly clear implicature was appropriate.
When a patient or her relatives are going through unbelievable stress, it is that much harder to deal with a cacophony of diagnoses, prognoses, and life advice. Can this be coordinated? Like parents should with a child, present a unified front. Also, please remember why we are seeing you. It’s because you have greater knowledge of the human body, what ails it, and what can fix it. The nature of medical expertise is empirical, not ethical. Taking one or two ethics courses in medical school likely does not give you all much greater insight than anyone else into the nature of the ethical problem the parents are facing. Give the facts. Let the parents figure out what should be done given those facts and how they will adjust their lives to their new reality.
As it happens, my son has perfectly functional vision. I’m guessing he won’t be a fighter pilot, but there are probably other reasons he shouldn’t do that anyhow. With ear tubes, his hearing is functional. He is a playful, social busybody. He clearly understands some language and learns to communicate more all the time. He has not had a non-surgical hospitalization since he left the NICU. He has exceeded my most cheerful prognosis. For what it’s worth, I am awfully glad that he was never institutionalized and he was resuscitated. But his neonatal period was the worst period of my life. Doctors saved his life, and for that I will be forever grateful. Some doctors were wonderful to us personally. But some also made that time much more confusing and painful. I do wish they’d figured out how to harmonize together, and understood where their expertise was welcome, and where it was intrusive and judgmental.
Here’s my advice to doctors dealing with a patient or patient’s family facing a catastrophically life-altering condition. 1) Coordinate with one another about what to say. 2) Stick to your specialty or subspecialty. 3) Most importantly, give patients the facts, but let them make ethical and lifestyle decisions without trying to influence them (unless of course, there’s a totally gross violation of ethics).
Doctors have little excuse for doing as you say. In some cases it may be difficult to coordinate with each other perfectly, but coordination should be arranged to the greatest degree possible. If coordination is not possible, rule 2 MUST be kept in mind. It is egregious that anyone would give advice from authority that they don’t actually have. When I send a patient for evaluation by a subspecialist, I will sometimes give a rough outline of what I think are some of the more likely outcomes based on my own training, but I ALWAYS stipulate that I could well be wrong, and defer to those with more expertise. And I try very, very hard not to weigh in on ethical decisions for parents unless I am asked to offer an opinion.
I’ve often wondered where the physician’s art ends and the ethicist’s begins. It must be a heart wringing profession at turns.
When Sarah Palin was talking about Death Panels, I can safely say I was never more angry at a line of rhetoric. The Palins have a Down’s Syndrome child: they know this part of the landscape. But I’ve sat in conference rooms in hospitals, I suppose you’ve been in such conference rooms many times, with that box of Kleenex in the middle of the table and that piece of bland abstract art on the wall you’ll never forget, with the agonised family and the doctors and the hospital staff, everyone trying to arrive at a correct course of action for someone who’s in serious medical trouble, for whom no amount of medical intervention will make much difference. A Death Panel in all but name.
It was bad enough being part of the agonised family contingent. I can’t imagine what it’s like to be on the other side of that table, with the medical staff and the physicians.
It sucks.
When my mother was still practising anaesthesia, her hospital would routinely rotate the onco nurses with the neonatal nurses, just to keep the onco nurses from burning out.
Good point, Blaise, and I wish I were more sympathetic in this post now. I hate telling a student that he is getting a C. I remember two separate doctors shaking as they talked to us. And the upbeat doctor came over and apologized later after the diagnosis. I imagine that was insanely difficult.
Although, in the first of those conference room discussions, the neonatologist actually ended up checking his email while the geneticist did the talking. (To be fair, the meeting had gone well over an hour, which was clearly more than expected, as we had lots of questions). But I did gather he wasn’t too broken up. I’m guessing neonatology is a specialty where devastating diagnoses are pretty frequent?
I’m guessing neonatology is a specialty where devastating diagnoses are pretty frequent?
At least relatively speaking. Neonatologists very often deal with the extremely premature, who have a much higher rate of adverse health outcomes than full-term infants. They deal with distraught soon-to-be or only-just-now parents who have had a dramatic turn for the worse in their hopes and dreams. So perhaps there is a tendency to be less empathetic over time as a defense mechanism, or because they’ve become inured to the human suffering on the other side?
FWIW, I haaaaaaaated neonatology, and my residency actually got dinged for having us do too much of it.
I’m guessing neonatology is a specialty where devastating diagnoses are pretty frequent?
I imagine that a startling number of folks say something to the effect of “we’ll just press the reset button” and go on to do so.
That has not been my experience.
Do you mean parents or doctors?
That has not been my experience.
Really? That’s… that’s not as bad as I thought then.
Do you mean parents or doctors?
I had assumed parents. (I know that, ideally anyway, doctors don’t suggest anything but just give available options and likely probabilities of various levels of success for various avenues of treatments.)
Not my impression of the parents around me, but I didn’t interact with them much. And obviously at least one doctor had the impression that the majority of parents were nowhere near the rest button.
I may be misremembering, but not one single parent I encountered during my time in the NICUs where I worked seemed at all cavalier about the prospects for the child who brought them there. All of them seemed to treat the situation with gravity, and on those occasions when a child died there was genuine grief. None of them treated it like a bye game.
Oh, I feel stupid. I was thinking that we were still talking about babies in the womb rather than ones that had been born.
I apologize.
Yes, I can totally see parents who have reached that point uniformly (with, perhaps, one insane exception or two) acting like parents.
When we were pregenant we had the docs do genetic testing early on, and then after we approved the testing realized we had to talk about how we’d react to the testing. It was one of the hardest conversations we’ve ever had as a couple.
On the other hand I also came to the discussion as being very pro-life with a very religious family who would have echoed that sentiment if it had ever come to light.
Teacher, same with us. It was a calculation that we didn’t want to introduce any risk to the pregnancy that we did only screening, not amnio with the child who turned out to have a genetic disorder. He passed the screen.
And the conversation was all the harder when we were pregnant again when we had a disabled child whom we adored.
When I’m having to deal with a big crisis in my professional life, and they’re surprisingly frequent, I always demand (and get) a single point of contact on the other side of the crisis. That’s how the military does it, establish some liaison, put a face on the problem.
Perhaps that’s what such situations require. Not all questions can be answered immediately but it sure does put the problem in perspective when you know who to ask.
In this hospital, doctors rotated in and out every six weeks. My son’s stay was much longer. Also, it was a teaching hospital. Sometimes the face wasn’t there.
Your writing is always a treat for me, Rose. I am put in mind of a poem which has always given me some stern comfort, by Robert Frost, Home Burial
“My words are nearly always an offense.
I don’t know how to speak of anything
So as to please you. But I might be taught,
I should suppose. I can’t say I see how.
A man must partly give up being a man
With womenfolk. We could have some arrangement
By which I’d bind myself to keep hands off
Anything special you’re a-mind to name.
Though I don’t like such things ‘twixt those that love.
Two that don’t love can’t live together without them.
But two that do can’t live together with them.”
She moved the latch a little. “Don’t—don’t go.
Don’t carry it to someone else this time.
Tell me about it if it’s something human.
Let me into your grief. I’m not so much
Unlike other folks as your standing there
Apart would make me out. Give me my chance.
Thank you, Blaise.
“Another doctor sat us down and advised us to institutionalize him.”
Seriously?! This still happens?
Yes. Yes, it does. And people do it. I knew nothing about the disability community at that point, and even I was shocked. It is MUCH less common now than it was, say, 15 years ago. As far as I know, I’m the only syndrome mom of a kid of similar age who was advised, but he was thought to be an especially devastating case.
Especially sad, because in the syndrome, there are least two studies that show that the prognosis for home-rearing and institution-rearing are absolutely drastic.
I have to admit, I considered it. I just thought I couldn’t handle it. But just the considering made me realize that the effects of institutionalizing one’s own child must be psychologically devastating in itself. It’s horribly guilt-inducing, and forces you to confront whether you might actually love your children conditionally after all.
A question for the medical practitioners but…
How much does your on the job training (thinking specifically about residency here) actually prepare you to do things like the necessary coordination? Does this depend entirely on the hospital system you wind up working at? Is there a course that deals with this in medical school?
I’m just thinking about it in context about how ethics and leadership is taught for policy analysts (not well most of the time) in a similar light.
Thank you for sharing your experience, I empathize with the extreme frustration you feel. I wish there would have been more support and understanding from the medical community for your son and your family, but it seems like you have that for miles in your own heart. Lucky boy you’ve got there! Congratulations on the birth of your lovely son and congratulations to you for being such a strong advocate for him.