Laugh, Cry, Live

Pondering the emotional side of life, beginning to end.

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.

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.

So what’s a parent to think when their baby’s journey comes to a fork in the road, where one path is intensive care and an uncertain future, and the other path is hospice care and certain death? How can it be that the doctors are saying their baby’s prognosis is possibly grim, intensive care has its limits, and hospice is an option, perhaps the only option?  What kind of parent turns away from intensive care for their critically ill newborn? Shouldn’t they reach for the miracles of modern medicine?  

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.

So hats off to Real Simple magazine, which featured an essay, Letting Go, in the April 2014 issue. And praises to the author, Meloney Dunning, who shared her thoughts and feelings about her life-threatening pregnancy complication, the preterm birth of her tiny son, Phoenix, and the dawning realization that intensive care was not a loving or viable path for her baby. Rather than fighting a grim prognosis, persevering with aggressive care, reaching for a miracle, and keeping her son alive with machines, her courage lay in getting out of the way and trusting Phoenix’s life and death to unfold as it was meant to be. With all evidence pointing to a life of suffering and prolonged dying in the NICU, this mother, with the father (Adam), agreed that hospice and palliative care, often called “comfort care”, was the kinder, gentler option-- and in the best interests of their child. She writes:

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.

Indeed, like many parents who’ve endured this journey, Meloney and Adam can probably testify that letting go was the most unselfish thing they’ve ever done. In essence, they were willing to suffer the profound grief of their baby’s death in order to protect their baby from terrible suffering—rather than having their baby suffer a painful life to protect them from terrible heartache. In this way, letting go becomes a powerful act of love—and courage.

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.

Meloney’s essay is an honest, open, and heartfelt antidote to these judgments. It illuminates a parent’s agony when a baby hits the limits of modern medicine. It shines a light on the brutal reality that for some babies, intensive care is merely a burden that induces suffering and prolongs dying.  It shows the complex assessments, careful understanding, and heartfelt decisions parents make as they see past the shiny but often elusive promises of “miracles in the NICU” and weigh the real options. It demonstrates the value in letting nature take its course, and bravely, selflessly, lovingly making the decision to let go.

 

 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.

Deborah L. Davis, Ph.D., is a developmental psychologist and author of 6 books, including one about perinatal hospice titled A Gift of Time.

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