Breaking bad news

A recent assignment for school caused me to recollect a patient from my previous hospital. An excerpt (the original essay is several paragraphs longer) from my assignment summarizes the story...

The patient, an 8-year-old boy, was the elder of two sons of a recently immigrated family. He had been admitted for status epilepticus, which proved to be refractory. He was ultimately placed in a medically induced coma (which he continued to seize through for a month) and the parents were asked whom else they would like present for a discussion of his prognosis.

The family requested that a doctor from their home country be involved and so a teleconference was established. Various members of the care staff reported their opinions and summarized the boy’s course to date. There was almost as much silence as there was talking and each person was careful to solicit and answer questions. The questions themselves guided the discussion. The parents really needed to believe that every option had been exhausted. They believed that because we had been able to find an etiology, we should be able to find a cure.

From a physician’s perspective, after a month of seizing and coma there was likely to be little brain function left. A multitude of testing revealed a genetic defect in a sodium channel, which was blamed for the seizure activity. The boy was not a surgical candidate because the seizures were multi-focal and originated from both hemispheres. Everything had been tried and nothing would break the seizures, which were still occurring roughly every three minutes. There was nothing more that could be done.

Most of the conversation centered on the futility of our treatments. That we, as doctors, could not even promise he would wake up if we took away the sedatives. Eventually the parents chose to withdraw support. I think they knew their decision from the moment they sat down; they just couldn’t say it out loud. I didn’t get the sense we had persuaded them; more that we gave them a safe and justified way of letting go and not feeling as if they were bad parents, that they were simply giving up because it was hard.

It was then, when they stated their decision, that I was so thankful for the private room (not a patient room) the whole conversation took place in. The family had somewhere they could be where they wouldn’t be disturbed or overheard. Not by a nurse who needed to take vitals, not by a doctor checking on another patient. They couldn’t hear the business of medicine still working around them, healing some of the other children who would eventually be able to go home to their parents. But the room also allowed us, as the medical staff, to separate the conversation we just had from the rest of our work. When you walk out the door and back onto the ward, you leave the heaviness in that room and focus on health and healing on the floor. The spatial separation aids the mental and emotional one.

That separation is not learned with one conversation. Or maybe it’s always imperfect. But I do know that I was unusually quiet the rest of the day. When a friend needed sympathy later that night, I just couldn’t muster any. His problems seemed so petty. The boy was only eight and he was dead. Dead because of a sodium channel, which seems like such a insufficient and small reason. He had a little brother who clearly didn’t understand what had happened. He had a mom and dad that somehow had to keep going. And while I wasn’t consciously dwelling on it, something in me didn’t let it go immediately. Within the week though, the petty problems regained their gravity and the pressing concerns of work and medical school applications took over.

- * - * - * - * - * -

I have to admit that delivering bad news became easier. Maybe not in the moment, but my recovery got much faster.

With regard to the family in the story, the little brother had ongoing issues coping with his brother's death. I personally think some of this had to do with the fact that the parents never allowed the younger son to visit the older one (they didn't want him to see his brother sick or in pain). Then again, I am neither a parent nor a psychologist, so I am not at all qualified on the subject.

Rest in Peace

I would like to take a moment to honour the memory of a 3 year old boy I knew in Philadelphia. He recently passed away due to GI complications and a genetic illness. I met him several times over the two years I was there and his whole family were warm and wonderful people.

It's not all in my head

In medicine, we call it emesis. The other research assistants favoured the term "booting." Whatever you call it, I was holding the sides of a toilet and vomiting neon yellow bile yesterday one hour after watching a neonatal autopsy.

The baby in question was about one week old and died shortly after surgery to embolize a vein of Galen malformation. Basically, the baby was born with an extremely large vein in the brain -- this causes low blood pressures in the arterial system and high venous pressure (reversal of normal, also termed persistent fetal circulation). One potential repair is to fill the vessels feeding the oversized vein with glue (yes, literally glue) to lessen the amount of blood flowing through the malformation and restore normal blood pressures. This baby died shortly after surgery after two mysterious distended abdomen complications and difficulty ventilating.

An autopsy is not an elegant or a respectful procedure. The body is handled roughly, like an object, and no care is made to preserve the features that viscerally remind us of the corpse's humanity. The first part of the autopsy was an excision of the brain done with incisions from each ear to the center top of the head. The face is then peeled down and the skull cut into 4-5 triangles, which are peeled open like a flower to provide unhindered access to the entire brain. Unlike television, the baby bled when it was cut; this is not CSI, the bodies are not embalmed prior to examination.

Upon opening the skull it was immediately evident that there had been a substantial subdural and subarachoid hemorrhage (bleeding in the space between the brain and it's covering layers, the meninges). Thus, there was a lot of blood and it lots of gauze was required to visualize the venous system within the brain (you can see the vein of Galen by pushing apart the two hemispheres, gently). The spinal cord was then severed and the brain extracted and placed in diluted formalin to "set" for two weeks before the brain cutting (serial sectioning of the entire brain and spinal cord).

Once the brain is removed the face is pulled back up, but the skull is left open. The next question was what substance was filling the belly. To see whether it was air, the baby was submerged in a basin of water and a hole poked in the abdomen to see if bubbles would result. No bubbles. The body was removed from the basin and held upside down to let the (empty) skull drain (it filled with water when submerged: no brain, remember).

A Y incision was made, which is really more of a U from nipple to nipple and then a line down past, but around, the belly button. Care has to be taken not to cut to deeply, only skin and fat, not the organs beneath. Once you cut into the body, yellow liquid runs off - I think it's the water mixing with the fat (adipose) tissue.

A probe was used to spread the skin around the abdomen and below - the baby had no testicles in the scrotum so, where were they? Gently the intestines were pulled out (not all the way, just a bit) and nudged sideways so that there was a view of the interior of the body cavity. One of the intestines was brown (my guess: large) and the other more greenish (my guess: small), but both smooth and slimy. The testes looked like miniature pearl onions and they were floating off on the left side, not in the track they descend down so something was wrong there.

I didn't get to see then crack the chest because at that point we had to go see another (living) patient. Frankly, I think this was about as much as I could handle... I mean, this was a newborn and it didn't look dead.

While I was in there, watching, I felt mostly fine. I had a low level of queasiness, but I was interested in what I was learning about anatomy and pathology. My brain was on board, but my body was apparently not. I think there is something primal within that rejects the desecration of your own species and produces a visceral reaction. I was told you learn to control it, but that it never really goes away and to be honest, I'm glad. I'm even a little proud that I got sick (especially that I held it together until later, when none of the doctors could see) because it proved that despite my ability to be detached, I have not lost my empathy.

You're probably thinking... but you're going to do this in gross anatomy. Well, yes and no. One, those bodies are preserved (less blood). Two, they are skinned (much less human looking). Three, the faces are draped (again, less human looking). Four, they are adults, not babies. But, yes, I will have to touch dead bodies again.
And if I "boot" when I do it, I promise to tell you all.

Welterusten, oma

On Thursday night I wanted time to freeze. I didn't want those hours counted against my MCAT study time, deadlines at work, and my ever-growing to do list. It wasn't the worst news, my parents and brother are healthy, but it was close. Apparently my maternal grandmother (oma, in Dutch) suffered a stroke and was in a coma.

I love my oma and I am sad that I will form no new memories with her, but she was in her eighties and had moderatley advanced Alzheimers. What really makes the death of a grandparent hard is watching the effect on my parents. My mother was flying out to the Netherlands, after much deliberation, and in the end missed seeing her mother lucid(ish) but just a few hours.

So when my mother returns and I am able to speak to her on the phone, what do I say? What do I say to my mother when she has lost her mother?

And then it was Friday and I had to be at MCAT class. I had to go to my medical school applications workshop - I had to catch up on the work I didn't do while I was staring at the walls on Thursday night. The computer that scores my MCAT isn't going to care that oma died. Neither will the recommendations I need, the deadline for my next vacinnation, my next organic chemistry exam, or the IRB continuing review. Nothing changes.

The biggest change between life before and life in the real world is how hard it is to keep it together. Because nothing changes.