- Golda Grinberg, B.S.
“You mean our baby won’t leave this hospital without a trach?” I held the doctor’s gaze before glancing at the crib, where my baby was intubated, sedated, and paralyzed. Unlike his previous ICU stays and lifesaving surgeries, this was supposed to have been an observational 2-night hospitalization after an uncomplicated cleft-lip repair. Now, 5 days and two extubation attempts later, the SICU team’s best guess was that multiple complications had occurred, perhaps because of underlying neurologic and respiratory fragility, and now my son could no longer breathe on his own. Just when his other complex medical conditions had stabilized and he had gained a chunky roll under his chin, the carpet was yanked out from under us.
We were jarred by the idea of facing another surgery and recovery and then having to learn how to manage a tracheostomy. Trach care would push our son’s list of daily medications, G-tube feeds, and physical therapies onto a second page. The need for constant trach supervision would mean I’d have to further delay my last year of medical school, given the shortage of home-care nurses who could watch him 24/7. We would be repeatedly awoken at night by pulse-oximeter alarms reminding us to suction his secretions lest he silently choke on a mucus plug. We would dread visits with our son’s toddler cousins, knowing that any common respiratory virus could land him in the ICU again. Was a trach really the best and only option?
Amidst pressure to book operating-room time for the procedure, the question of whether to consent to the trach gave us pause. We consulted our rabbi, an international expert in Jewish medical ethics, on possible courses of action and wrote a lengthy email to him describing our son’s medical history over his 8 months of life that had seemed like years. As we typed, we realized that his weight and length fell below the second percentile for a baby half his age. His head circumference was two standard deviations below the cutoff for microcephaly. His seizures had been worsening and at times required us to bag oxygen into his lungs. His brain MRI was far more concerning than those of the two other children in the world known to have the same genetic condition, both of whom were immobile and nonverbal. He had been hospitalized for the first half of his life and had had five readmissions since then. As one family member put it, “He is a sick kid.”
For the first time since he was born, we looked at our son as a baby who had withstood endless medical interventions. Rather than taking each new diagnosis in stride and refusing to accept a diagnosis of “failure to thrive” (worried that it implied “failure to parent”), we stopped to reflect. To the surprise, perhaps even shock, of the SICU team, we tossed an option B onto the table: if we truly could not extubate, we suggested, maybe we should skip the trach and transition to comfort care. We knew such care existed because we’d previously discussed it with my sister-in-law, an adult palliative care physician. When we finally spoke those two words, the medical and surgical teams listened attentively and began devising possible avenues. How could we optimize the next extubation attempt to avoid a trach at all costs, and what exactly would happen if that attempt failed? Though this scenario was not foreign to them, no clinician had brought it up over 5 days of “family-centered” rounds.
When presented with a child in whom previous extubation attempts had failed and who was becoming more deconditioned by the day, the SICU team had made the standard, safe, and familiar recommendation for an acute problem: place a trach. It would maximize our son’s chances of coming home and expedite recovery from his three upcoming surgeries. The red flag of such a drastic procedure, however, signaled to us — the people who were the most intimately acquainted with our child’s problem list — that we should stop and reflect on the past 8 months. Our holistic view could help clinicians incorporate our experiences and expectations into their insights about treatments and outcomes. Yet because we raised the subject after being told there was only one path, we felt like we were refusing treatment at our baby’s expense. It would have been tremendously helpful if, from the beginning, we’d had an open conversation with our son’s medical team and discussed all the options.
We can understand why it never came up. In one study surveying perspectives on palliative care, pediatric intensivists indicated that they felt less confident about managing chronic symptoms than acute ones and said the greatest barriers to palliative care referrals were a dearth of hospice resources and the perception of “consulting out” care of the patient.1 In accordance with guidelines from the American Academy of Pediatrics, we had been referred to the pediatric palliative care team when our son’s genetic diagnosis was confirmed a month after his birth,2 but once we’d chosen to focus on life-sustaining interventions and intensive surgeries, we were never prompted to reconsider that decision. Perhaps the team had been picking up on our steadfast optimism and recognized that we lacked prognostic guidance, owing to the rareness of his genetic condition. Or maybe our son’s problem list had grown slowly enough that we never realized it met the definition of “progressive,” which qualifies patients for hospice.
By nothing short of a miracle, our son was successfully extubated and came home 3 days later breathing comfortably on room air. And we enrolled him in hospice. Admittedly, electing for hospice care initially felt like giving up: surely we had a responsibility to try every modern medical intervention! But that was our emotional response. Rationally, we believe our new approach will translate into less time in the hospital for our son (and us) and more time living — a mindset we have since internalized and even embraced.
The open-access model used for pediatric hospice care allows us to pursue as much care for our son as we like, including curative and disease-modifying treatments. Our main focus is electing care that maximizes quality of life, relieves symptoms, and enhances the time we do have together. In crafting our goals of care, we opted to prioritize our son’s neurologic needs over orthopedic ones, in an effort to reduce the number of outpatient excursions. Only after doing so did we recognize the stress that had been caused by weekly serial casting appointments for his club foot and the pressure we’d felt to perform his physical and occupational therapy exercises diligently, with the hope that he might one day roll, sit, or grasp. Now, without the casts, he can enjoy baths and leg tickles. We no longer get nauseous contemplating long-term neurologic damage caused by longer, more frequent seizures. Instead, we modify his regimen of antiseizure medications from the comfort of our home, according to his level of discomfort and sleep quality — an approach that keeps us more in tune with his well-being.
We finally feel happier and healthier, enjoying all the snuggles and giggles we get to have with our son, whether they last weeks or years. In retrospect, we realized that the trach scare was just that — it was a nudge toward refining our goals for our son to give him the best life we can. We still don’t know what the future holds, and the uncertainty remains hard. But in pursuing hospice care, we are not giving up.
Disclosure forms provided by the author are available at NEJM.org.
This article was published on February 4, 2023, at NEJM.org.
N Engl J Med 2023; 388:486-487
DOI: 10.1056/NEJMp2213031