Lifeline
Doctor, please do what you can to make my child live. I wouldn’t know what to do if he doesn’t make it.”
For fellow physicians, among the thousand and one things that we struggle with is being asked by a family member to do everything that is possible, even when a patient’s prognosis is grim or unfavorable.
For pediatricians, it is more challenging since it is the parents or the closest family member—not the patient—who make decisions about the medical care. On a personal note, neither time nor experience has ever provided the right formula for how to balance this, even when one tries to adhere to the principle of weighing benefits against risks. There are a lot of factors to be considered, and when emotions are involved, the ability to think clearly and rationally can be difficult, especially in highly critical situations. As physicians, while it is important to convey empathy, our role is to provide a framework for clarity. Maintaining a respectful, open, but comfortable distance should be what we aim to achieve in all our interactions.
Reflecting on the countless times I have been given the responsibility to deliver sad news, I asked myself if there are areas that I could improve on. It always helps to look inward and assess if you have effectively communicated what the patient’s condition is in a language that will assist their loved ones in making a life—altering decision. And even when you have, families in desperate situations may ask you to resort to nonbeneficial measures that can make management more difficult.
While there is some relief in knowing that cost is not an issue when exploring nontraditional or standardized options, what truly drains the physician is not only the possibility of harm, which can never be ruled out entirely since medicine is not an exact science, but also the concern that pursuing a nonbeneficial measure may deprive another patient, one with a greater chance of recovery, of care in the face of scarce resources. The load becomes a lot heavier when the family tells you that their finances are finite and they would have to refuse further intervention. How many times have my colleagues and I been exposed to this reality? This is where our clinical judgment skills are put to a test and where one feels the need to pray more intensely that we are doing what is right for the patient.
I was fortunate to come across a clinical report from the American Academy of Pediatrics on how to respond to parents’ requests for the institution of nonbeneficial treatment in life-threatening situations. While the years have given me a certain degree of confidence in delivering unfavorable news, reading through the suggested goal-based approach made me realize that I may have fallen short in fully exploring what the parents actually hope for their child. It is easy enough to say that our decisions must consider the quality of life that the child may lead if he survives, but what is the measure of what that truly means to a parent?
To lessen the complexity of arriving at shared decisions, both the doctor and the family should work together to come up with a goal-oriented and realistic treatment plan. The doctor must be able to relay the gravity of the situation, the benefits and the risks of treatment, and the prognosis, while carefully attending to the questions that remain uppermost in the parent or caregiver’s mind: their fears, their worries, what they will need to face, and what to be prepared for.
You may never know the extent to which these scenarios can impact us because we have to be that brave soul who needs to keep things on course. A friend has learned to give her husband—a hematologist-oncologist—some time alone at the end of the day. A colleague has learned to give a roommate enough space to compose himself after seeing him in tears. And I have learned to talk less and stay still in silence whenever a fellow physician—the captain of our team—loses a patient we comanaged, because I fully understand how hard it can be to be that person. Sharing this bit of information hopefully can go a long way in understanding why sometimes doctors may seem aloof or even cold. I see it as some sort of self-preservation.
In life-threatening moments, you may regard us as your lifeline, but know that you are ours as well. In our encounters, you teach us to learn more about ourselves, how we can be better, be more human, and accept our limits.
Most of all, you teach us how to keep God close.
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timgim_67@yahoo.com
