Medical Ethics in Pediatric Oncology

Oncology Fellows, September 2017,

Everyone, at every level, is checking, rechecking, thinking, researching, asking questions, discussing, analyzing, and trying to help patients.

Nitya A. Narayan, MD

"First, do no harm.” This Hippocratic Oath is practically the initial we hear when we graduate from medical school and are set loose on patients as real doctors. In fairness, I think it hits very few people in that moment what that oath is about. You think you know what you’re saying—you certainly don’t plan to hurt anyone, and you are hoping to help many. In my case, as an oncologist and hematologist, I am focusing specifically on helping children.

On my last 10 days ever on the inpatient service (as a trainee), and after 4 years of medical school, 3 years of residency, and 3 more years of fellowship, I still often don’t know the right answer. Medical ethics are so complicated. We are a team of attending doctors, experienced nurse practitioners, fellows, residents, and medical students. We teach medicine, we learn, we make rounds, we examine patients, we place orders, and we ask for help when we don’t know the answer—sometimes from the pharmacist, other times from the research personnel, sometimes from the social worker, or sometimes from another specialist.

Everyone, at every level, is checking, rechecking, thinking, researching, asking questions, discussing, analyzing, and trying to help patients. We go home and read, we contact world experts, we search through the latest medical literature to see what is available; we try as hard as we can. We work in shifts so there is never a drop in momentum—sometimes 12 hours or sometimes a week. It depends.

What do you do when you have the best mentor and cutting-edge therapy, and yet nothing you do is working? The cancer and all its associated illnesses are leaving people literally broken, in multiorgan failure, with rare but very deadly syndromes and with rapidly enlarging tumor burden. You have to make decisions with your teams, both quickly and correctly. What’s the right thing to do when you know, medically, nothing short of a miracle is going to heal this person? “Do no harm.” Is it more unethical to not offer something that is medically available when the family is willing to try anything, because you do not think it will work (and no one has ever survived the treatment)? Sometimes these ethical dilemmas seem like they have an “of course” answer to them. The answer is easy if it is well researched and people know the benefits and the risks and aren’t just making decisions based on desperation. But what if it’s an experimental drug? It has worked in “10% of rats,” and the adverse events can kill your patient much faster than their disease. Do you roll the dice then? “Do no harm.”

Maybe the ethical thing to do is to help a family understand when it is time to focus on the quality time that is left available rather than try to offer something that will likely not work for various reasons and achieve what is, unfortunately, medically impossible. The patient (in this case the child) is suffering, sometimes consciously, with issues such as severe pain and difficulty breathing.

Just recently, one of our little angels who went to heaven was literally gasping for each breath in her final few days because of her tumor-filled lungs. However, she wanted to fight. “I’m not worried about myself, but I don’t want to leave my mom behind,” she said. “Are you saying there is nothing else you can give me so she’ll have more time with me?”

And sometimes, even when the patient is no longer conscious, the next ethical issue becomes, “In the midst of trying to help this person, am I doing things for them or to them?”

You overhear one supervising (well-intentioned) doctor make a decision to try yet another drug, and you see the sadness on the training residents’ faces as they look down and shake their heads because they feel it’s the wrong thing to do. Along with the dedicated bedside nurses, they’re the ones who spend day and night in the hospital trying to bring comfort to the patient and their family.

Who is right? The person with the expertise who thinks, “This could work,” and wants to give the patient another shot—or the person who has watched all the suffering and wants to stop prolonging what everyone knows, in their gut, is the end of the game? Plus, it’s important to factor in what the family believes is in their child’s best interest. There is no correct answer.

What complicates the ethical issues even more is when a mom looks at you and begs you not to give up hope on her child. I have heard about “maternal guilt” and, admittedly, don’t know what that feels like. However, I certainly know what “doctor guilt” feels like.

You wish you had something that worked. You’re hoping for a miracle just like the patient and their parents. But you see which direction this is going, based on lab tests, imaging results, and your experience. You are praying and hoping, too. You do your best to try not to cry in front of the patient and their family because they need someone who is composed and has a plan, not someone who is a crying mess (so you wait until you get to your car and you cry all the way home).

You understand they are angry, and they remark that they wish they had sought a second opinion. They wish you had told them they had only a few days to go (but you didn’t think that was right, either, because you’re only a human, not God, and the fact is, you were hopeful for more time, too). You hear, in their voice, that they came to you for help and, despite your best efforts, you just couldn’t deliver. That hurts as deeply as the kind of hurt of your worst broken heart—the one that leaves you a little broken forever because it never made sense to you. The same hurt as one where you still can’t even walk by the exact spot you were when it happened, because it makes you sick.

The only word I have to describe how it feels when someone says they are excited about college, and you know they’re likely not going, is sick. Or in another instance, they are not ready to die because their worry is, “But that means I won’t see you guys at the hospital ever again.” Or they plead with you to try something else (but there is nothing else).

We take care of many children with various problems, 2 of whom are currently the sickest kids I have ever seen in my entire career. Both with loving families, both who are just…sad. Who are we to strip people of their last hope? But on the other hand, is it fair to offer a solution that will have the same poor outcome, only with more suffering and less quality of life? Isn’t it our moral obligation to tell the truth without trying to either give or take hope? Easier said than done. All these questions are obviously not meant to be answered, because there is not one correct solution, especially when no part of it is clear-cut. That’s why they are ethical dilemmas.

Like any other person, I feel grief. But I then have to turn around and walk into the next patient’s room, as the patient’s doctor, not a grieving person, because they deserve the same care and my full attention, too.

The doctor guilt creeps right back in when wellmeaning loved ones say things like “I don’t know how you do it.” You feel guilty because you didn’t actually do much. You hope you did the medically and ethically responsible thing, but you didn’t change the outcome for that person. Overall, I’m at the balance between being thankful that I’m not too jaded to feel nothing (if I ever get there, something is wrong with me) and, simultaneously, wanting to run.

I looked down today and realized my white coat pocket pretty accurately sums up my life in the past 2 weeks: a mangled, coffee-stained reference book, a stethoscope with a dinosaur that lights up, a full beeper, a Sheraton pen, and an emergency fork. “Do no harm.” Many times I do not know what that means after all