Choosing Palliative Care Is Sometimes the Best Decision for Patients and Families

The following is a translation of a February 4, 2023, perspective article by medical student Golda Grinberg in NEJM . It describes a mother's experience of making the right decision for her child in hospital. A baby found after birth to have a neurological condition in addition to a cleft lip was unable to breathe independently after an operation, and doctors recommended a tracheostomy. Concerned about this radical procedure, the family began considering other options...

When will our baby leave this hospital breathing independently, without a tracheostomy tube for respiratory support?

It was an uncomplicated cleft lip operation, to be followed by a 2-night hospital stay for observation. But 5 days had passed, and our baby had undergone two extubation attempts (removal from the breathing machine). We were told that, at best, several complications had occurred, perhaps because of an underlying neurological and respiratory problem, and that our son could no longer breathe on his own. Just when we thought we had overcome the other medical problems, everything turned upside down again.

We would have to learn how our son would live with a tracheostomy. We would have to watch him 7 days a week, 24 hours a day, putting everything else aside, including my final year of medical school. At night, we would wake repeatedly to prevent silent mucus blockage and choking. Our son would not see his cousins, lest a virus send him back to intensive care; instead of learning to walk together, they would grow up apart. Was a tracheostomy really the best and only option?

We needed to schedule surgery but had not decided whether to accept the tracheostomy. We wanted to consult our rabbi, an international expert in Jewish medical ethics, and wrote a long email describing our son's 8-month medical history, which felt like years. As we wrote, we realized that his height and weight had fallen below the second percentile even for a baby half his age. His head circumference was two standard deviations below the microcephaly threshold. His seizures were worsening, and at times we needed to provide oxygen to his lungs. His brain MRI closely resembled those of the only two children in the world known to share his genetic condition, both immobile and nonverbal.

Our son, hospitalized for the first half of his life, had been admitted five more times since then. "He is a sick child."

There Must Be Another Way

For the first time since his birth, we looked at our son as "a baby enduring countless medical interventions" . We had accepted everything, but instead of accepting his "failure to thrive," we stopped and reflected deeply. We presented a plan B that would surprise, perhaps even shock, the team awaiting surgery: If we truly cannot extubate him, perhaps we should forgo the tracheostomy and move to palliative care . We knew such care existed because a relative in our family was an adult palliative care physician, whom we had also consulted.

The team listened carefully and began considering every possible path. How could the next extubation attempt be optimized to avoid a tracheostomy at all costs, and what exactly would happen if it failed? For a child with previous failed extubation attempts who was becoming more deconditioned each day, the team had made a safe, standard, familiar recommendation: tracheostomy. It would maximize his chances of returning home and accelerate recovery after the next three operations. Still, we paused to consider the past 8 months. We wanted the doctors to incorporate our experiences and expectations into their insights about treatments and outcomes. We had been told there was only one path, making us feel as though we were rejecting treatment at our baby's expense.

A study examining attitudes toward palliative care reported that pediatric intensive care specialists felt less confident managing chronic symptoms than acute ones. The greatest barrier to palliative care referral is insufficient space and resources. Palliative care therefore takes a back seat to tracheostomy.

The Right Decision?

According to American Academy of Pediatrics guidelines, we should have been referred to the pediatric palliative care team when our son's genetic diagnosis was confirmed a month after birth. But once we chose to focus on ongoing interventions and intensive operations to sustain his life, we were not asked to reconsider. Perhaps they understood our determined optimism. Or perhaps his problems had progressed so gradually that we had not recognized he fit the definition of a patient needing palliative care.

Fortunately, our son—nothing short of a miracle—was successfully extubated. After 3 days, he could breathe comfortably and came home. We enrolled him in a care home. At first, choosing this felt like giving up, as though we had a responsibility to try modern medical interventions. That was our emotional response. Rationally, we believe our new approach will mean less time in hospital and a longer life for him and us.

Pediatric palliative care models allow us to receive as much care as we want, including changing and improving treatments. Our main focus is maximizing quality of life, relieving symptoms, and increasing our time together. We had prioritized his neurological needs, but we also emphasized exercises to help his orthopedic needs, hoping that one day he might roll over, sit, and grasp.

Our son can now enjoy bathing without his casts and having his legs tickled. We no longer dwell on long-term neurological damage from longer and more frequent seizures. At last, we enjoy all our cuddles and giggles with him, whether we have weeks or years. We feel much happier and healthier. Looking back, we realized that our fear of tracheostomy was precisely that—a drive to give him the best life we could. We do not know what the future holds, and uncertainty remains difficult, but we are not giving up.