When the End is Like the Beginning

In perhaps the greatest irony of my short career, after finishing my pediatrics residency I began a fellowship through the division of geriatrics. The actual training program is in Hospice and Palliative Medicine, but at my institution this subspecialty is housed under the auspices of Geriatric Medicine. As a result, the weekly didactic sessions focus on diseases to which I have given little thought since graduating from medical school. And my patients are older than before. Decades upon decades older.

I chose an adult-based program with the goal of gaining the broadest experience possible. There is also the reality that the board certification exam is the same no matter what flavor program (adult vs. pediatric) one has completed, and less than twenty percent of the material covered relates to children. I also have the sense that the utilization of hospice and palliative medicine is more pervasive and readily accepted within adult-focused fields. Witness the reaction I frequently receive when explaining my area of focus: “End-of-life care? But that’s not something that you need for children!” All the more evidence of how far we have to travel in establishing this field.

Regardless of my commitment, apprehensions swirled as my first day approached. I resurrected what I refer to as my “big people” stethoscope, whose diaphragm and bell easily dwarf tiny chests. A pre-emptive review of the hospice certification guidelines released a flood of pathophysiology that had lain dormant for years, as well as a reminder of why I had chosen kids over grown-ups.

But when I returned home on that first evening and my husband asked how it had felt to once again examine people my own size, it took me a beat to register the fact that I had spent the day attending to a completely different patient population than I was used to. And as my experience continues to unfold and I look more closely at my lack of discomfort (in fact my familiarity) with many of the clinical experiences, a symmetry has begun to emerge that is far more striking than I could – even during application season, while waging a campaign to convince an adult-centered program to accept a pediatrician – have predicted.

The first patient I encountered at the inpatient hospice was mostly unresponsive. She had moments of wakefulness, occasionally arousing to voice or touch, but mostly laid quiet and motionless. In other words, she was not so different from the intubated teenagers over whose beds I had kept vigil in the pediatric ICU. When patients lose the ability communicate and to make decisions regarding their care, family members must begin to parse the differences between their own preferences and what the patient would want. And with multiple family members involved, it often leads to disagreements. But that’s not unfamiliar territory to someone who is used to treating patients who are unable – legally and often developmentally – to make treatment decisions for themselves.

In fact, the whole-picture mentality is part of what drew me to pediatrics. No child exists in isolation; the home situation, education level and setting, and social milieu are just a few of the factors that inform and influence care. So, too, must we consider the surroundings and support of any patient whose life is limited by disease or drawing to a close. If they reside at home, who will assist with cooking, bathing, and medications? Who will help with travel, who will coordinate and communicate with the medical community and the outside world?

When patients lose the ability to swallow, how will we control their symptoms? Although progress tends to march in the opposite direction – instead of Child Life specialists coaching youngsters into swallowing Tic Tacs and working up to pills, our patients decline from swallowing tablets to liquids to relying on a few drops of concentrated medication placed under the tongue – both cases require consideration of which medications are available in which formulations, how accessibly, and at what cost.

And then there is the GI tract. He’s barely eaten, family members protest in both situations. Shouldn’t we do something about that? What will happen if he doesn’t? And the pooping. Toddler diets and opioids both tend to back people up. It’s second nature to me to discuss frequency, quality, and ways to prevent or alleviate discomfort related to moving or not moving one’s bowels.

But most important of all is the human connection. In pediatrics and in end-of-life care, I see patients and families who are frightened. Who feel frustrated and powerless. Who are looking for a guide. It’s not all rainbows and unicorns and happy endings. In fact, there are tears. So many tears. But whether I’ve got my big people stethoscope or my little one draped around my neck, whether I’m caring for a patient who has not yet learned to speak or one whose ability to do so is fading, I get to look at the whole picture, engage with a family, and do whatever I can to make to make their journey even just a little bit easier. No matter what the patient’s age, it feels like the most natural thing in the world.

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