On Parents who Choose Hospice Care instead of Intensive Care
It’s not about giving up in fear, but letting go with love—and courage.
Posted May 11, 2014
We’ve all heard "miracle stories" of babies surviving arduous journeys, including complicated pregnancies, unfavorable prenatal diagnoses, premature birth, and life-threatening conditions. These newborns benefitted from the medical expertise found in an amazing place: The Neonatal Intensive Care Unit (NICU). These stories also describe the fortitude and persistence of doting parents who camp at their baby’s NICU bedside for weeks or months, often following up with surgeries and therapies beyond the NICU, as they achieve their dreams of raising a healthy, robust infant who beats the odds. Miracle stories tend to get media attention, as we're awed by modern medicine, the doctor's skill, the parent's courage, and the baby's resilience.
Indeed, with “miracle babies” as a popular frame of reference, it is normal for these parents to doubt themselves and wonder, Doesn’t modern medicine fix everything? Are we doing something terribly wrong by wanting hospice care for our little one? No one will understand!
Many of these parents experience feelings of guilt and isolation because we don’t get to hear enough about this fork in the road. If hospice-seeking parents were given more opportunities to go public, they could offer comfort to those who’ve made the same decision for their babies, and also educate us, the unwitting friends and relatives of these parents, about how sometimes, turning away from aggressive medical intervention is the laudable decision. It’s not about giving up in fear, but letting go with love.
The truth is, it didn’t take long for Adam and me to decide that what we wanted was to keep our son comfortable. I thought of his tiny body in the incubator, respirator in place, blood-pressure cuff pumping, needles and catheters and scans and transfusions. It was not how we wanted him to live. What we wanted more than anything was for him to live the time that he had left knowing our touch, knowing our love, feeling that we were with him, no matter what.
Still, such decisions are agonizing to make, and parents typically second-guess themselves. But second-guessing is not a sign that the decision was wrong—it’s an indication of how difficult such decisions are to make, and a testament to how careful, conscientious, and devoted these parents are.
In the days and years since his death, I have turned it all over and over in my head. I no longer ask why. Things, bad things, happen to people every day. I have doubted our decision at times, but I know that those thoughts come from fear. In my heart of heart, I know that we did the best thing we could for our child.
In fact, Real Simple awarded Meloney Dunning’s essay First Place in this year’s Life Lessons Essay Contest. The theme: “What’s the bravest thing you’ve ever done?”
It is especially affirming that Meloney’s experience was judged to be a supreme demonstration of bravery. Far too often, folks assume that parents who choose hospice care are cowards who don’t have the stamina or will to pursue the miracles of intensive care. Indeed, some folks view them as selfish parents who would “allow” their baby to die. Some folks see them as faithless pragmatics who trust neither modern medicine nor a deity to perform a miracle of healing. Perhaps most damning of all, some folks consider these parents unloving and uncaring, hence unable to determine the best interests of their child. This thinking sometimes leads to the pursuit of court orders to wrangle custody from the parents, only adding to their trauma. This thinking also ignores or downplays the risks and burdens of prolonged dying or ongoing medical complications, disability, and suffering.
In honor of all bereaved mothers this Mother's Day...
...you will always and forever be your baby's mother.
For more on that fork in the road and how end-of-life decisions are made in many NICU’s, see Neonatal Guidelines formulated by the Colorado Collective for Medical Decisions.
For more on hospice and palliative care, go here.
For another story about a mum who faced a heartbreaking choice and opted to let nature take its course, read here.