Opinion: If my dying daughter could face her mortality, why couldn’t the rest of us?
A bereaved mother’s case against our grief-phobic culture.of March 2022, I flew to Miami with my 13-year-old daughter, Orli; her 8-year-old sister, Hana; and my partner, Ian. We were, by all appearances, healthy. Robust, even.
Nowhere is this more true than with the prospect of a child’s death. Death from illness is seen as aberrant, unusual, terrifying. Death from war, gun violence, abuse is lamentable, awful — separate. Healthy children and teens are largely shielded from the critically ill. Visiting the sick, let alone the dying, is associated with the aged and infirm; a charitable act, but not integrated into our ethos. Clergy members are overburdened. Death in America is a whisper, a shame, an error.
Throughout Orli’s illness — from diagnosis forward, and particularly in her final harrowing months — her physical pain was largely addressed. But those efforts were undercut by a terrible absence of emotional support — for her, for us, for Hana. As for how to truly understand the expression “life-limiting illness,” we were largely on our own.
I was driving when a hospice intake nurse called. Orli, I told her, was just about to enter an experimental drug trial, and I understood she was entitled to receive hospice services while continuing curative or life-extending care; she could even leave hospice if she improved. The nurse acknowledged all that was true. But, she added, You know they told me she has six months to live, right?After Orli was discharged, an oncologist caught me in the hallway.
“It is so hard to get clinicians to even talk about death and dying,” said Dr. Tessie October, an intensive care and palliative care physician who briefly worked with Orli. “And part of it is that we spend so much of our energy saving lives that the idea of a life not being saved feels like a failure.”
For cancer families, the transitions between stages of care, from diagnosis forward, are emotionally grueling. Navigating the abrupt shift from curative care to maintenance living — a life extended, but with no known cure — requires an abrupt pivot. Facing the limits of medicine’s ability to cure forces medical teams and caregivers alike to hover in a space between hope and acceptance, love and terror. It’s also where communication falters.
I begged him: Please, let’s wait. Though I have begun having this conversation with my family, I am not ready. He proceeded to lecture: Critically ill children should not be revived. Pulling out a piece of paper, he drew a graph with the high point of Orli’s life, before diagnosis, and then drew a line on a sharp downward slope. The implication was: Now we are at acceptance of the end. But that had not been her trajectory.
When Orli finally left intensive care, I went to see child-life specialists at the hospital who she knew, and who, more important, knew— her perspicacity and her wit, her droll cynicism. I wanted someone she trusted to help her face where we were now. Maybe even to consider death. It couldn’t be someone entirely new: We were too jaded, too sad, too shocked for that.
The lack of psychological support in the hospital meant that it was only when Orli was discharged that she truly understood her new limitations: She would never walk from the car to the house on her own again; she would not swing her legs over the side of the bed and adjust her shelves to her liking; she would not film a new dance; she would not step outside, stand or bathe unassisted. That pain far transcended the physical.
In 2008, Victoria Sardi-Brown’s son Mattie, then 6, was diagnosed with an aggressive bone cancer. “Mattie was treated at three different hospital sites, and at each hospital site the level of emotional and psychological care that he had access to varied tremendously,” Ms. Sardi-Brown told me. Dr. Baker, now at Stanford, underscores the need for a family to recognize that time is limited, rather than fighting that limited time. To measure time in teaspoons rather than gallons goes against every parenting instinct. But such recognition can allow more of those final moments to matter.
Every study on the subject I’ve read has found that the only way to mitigate the terrible comorbidities associated with losing a child — prolonged grief, anxiety, depression, inability to work, suicide, heart disease, untimely death — is with therapeutic intervention with a family in the time before a child’s death and then early, consistent grief work after.
I keep coming back to something Wendy Lichtenthal, a lead author of the Lancet paper, told me: Our culture has a profound lack of “grief literacy.” I developed a working theory over the course of Orli’s treatment that the American ethos that hard work leads to success rendered facing death, let alone dying, incomprehensible. How could we go through something this difficult only to find ourselves, ultimately, someplace worse?
“We need to be taught how to be with grief,” Mr. Weller said to me, “which means we need to witness it as we grow up.” He went on: “And for the most part, we don’t see it. It’s cloistered, it’s segregated, it’s pushed to the side. So when it does show up, we don’t know how to meet it in any meaningful way.”
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