A year ago, I found myself sobbing in my kitchen at Rob Delaney’s direction.
I was one chapter into A Heart That Works, Delaney’s memoir about the illness and death from brain cancer of his two-year-old son, Henry. As both an avid fan of Delaney’s Amazon television series Catastrophe and a health humanities educator who regularly teaches a class on death and dying, I had both looked forward to and dreaded the release of this book: looked forward to, because I knew Delaney’s unique comic talent would bring a brilliant edge to the genre, and dreaded, because who wants to witness someone’s utter emotional devastation?
Delaney himself, actually; at one point, he reflects on precisely this kind of witnessing when he recalls the near-narcotic effect of Joan Didion’s The Year of Magical Thinking: “reading about someone being dragged by the ankles through hell could just absolutely wash me in the waters of peace” (82). Misery, meet company.
Illness memoirs often begin with the sea-change moment of diagnosis. Delaney’s does not. Rather, in the opening chapter, Henry’s illness and death are invoked as mere fact: “When our son Henry was sick and in the hospital,” Delany writes (4), and, after a section break, “Some months after Henry died” (5). The cancer narrative is a signpost, marking the chronology that will ever define the grieving parent’s life.
In lieu of a diagnosis-focused exposition, Delaney begins with a metaphorical and literal wade-in: a sardonic meditation on swimming, in which he confesses his lifelong fear of lakes and ponds—a fear that does not, he explains, extend to the ocean, because “if something killed me in the ocean, I would understand what had happened; there would be no mystery.” It is rather the infinite mystery of the freshwater death that has long unsettled him, leading him to speculate that were he to die in this milieu, it would mean that, in all probability, “the gas-bloated zombie corpse of a murdered postman had slipped a rusty handcuff around my ankle and was going to yank me down and make me be his wife for eternity” (2).
By the end of the first chapter, though, the full reality and force of the father’s grief surfaces. “Not infrequently, I find myself wanting to ask people I know and like to imagine a specific child of theirs, dead in their arms,” Delaney confesses. “If you have more than one child, it’s critical that you pick one for this exercise,” he continues, shifting toward direct address; “If you’re reading this, and you have a child, do it now” (9).
Dutifully, I did.
Delaney continues here with a kind of macabre, grotesque guided meditation, one where the end goal is not fostering a sense of inner peace so much as shattering your psyche permanently and beyond repair. Having endured a modest share of medical trauma with both of my young sons, the imagery Delaney evokes was readily accessible to me, already living rent-free adjacent to my current reality: a corner around which I might have, or had not yet, turned.
Like Delaney’s unsuspecting pond swimmer, I was sucked under.
I placed A Heart That Works on my syllabus this year for my class “How We Die,” in the space that had been formerly occupied by Tom Hart’s stunning and searing graphic memoir Rosalie Lightning. Rosalie Lightning is a book about grief, about the sudden and unexplained death of his toddler daughter and its aftermath: the book is an the attempt to come to terms with senseless loss, to make art where one fails to make meaning. A Heart That Works is, of course, also a book about grief. But more pertinently and pointedly for my class—unfailingly comprised of a majority of nursing and pre-medical students—A Heart That Works is also a book about medicine: specifically, it is about the limitations of medicine, and the unimaginable ethical decision-making that falls to patients in the wake of these limitations.
Fundamentally, then, A Heart That Works is a book about care.
“When you’re a parent and your child gets hurt or sick, not only do you try to help them get better, but you’re also animated by the general belief that you can help them get better,” Delaney writes in the run-up to his dead-child thought exercise (7). Medicine, too, is overwhelmingly animated by this belief; most students who pursue this field are in the thrall of the gospel of cure. But Delaney puts it simply: “Sometimes, the nurses and doctors can’t fix what’s wrong. Sometimes, children die. Whatever’s wrong with your child gets worse and they suffer and then they die” (8).
Pre-medical students need to hear this, loudly and repeatedly. They need to know that they may not be the heroes and healers they envision.
And what does care mean in these circumstances?
Delaney’s toddler son’s harrowing course of treatment (all undertaken in London, where Delaney lives with his family as an American expat) includes a disabling brain surgery, chemotherapy (and concomitant sepsis), a tracheostomy, and over a year of life in a hospital. But despite anyone’s best efforts, Henry’s cancer eventually returns. Rather than continue to “do everything”—the Hail Mary surgery, the further radiation that would only prolong suffering— Delaney and his wife decide to discontinue treatment: “We just didn’t want to torture him anymore” (151).
On learning of this decision, Delaney notes, a nurse and a doctor, separately, had the same reaction: both cried with relief. “They said they wished more parents would do what we were doing. I am so grateful to that pair of witnesses,” Delaney writes. “They helped underline for us that though we were awash with pain, we were making a good decision, based in love for our Henry” (149). The “good decision,” of course, is a nearly unthinkable, impossible one, as Aleksandar Hemon illustrates in his gut-wrenching essay “The Aquarium,” about the death of his infant daughter from a brain tumor. It is a decision that most parents do not make, and one that doctors, in the name of upholding the principle of respect for autonomy, will not make: “They made it clear that we would have to be the ones to tell them when to stop trying,” Hemon writes. And there is an aberrant ethical equation at work here, in the stopping trying, as Delaney articulates: “Loving him meant we had to let the cancer spread and kill him” (152).
Notably, Delaney expresses gratitude for health care professionals here not for their roles as heroes and healers but for their roles as witnesses. Indeed, though Delaney’s book is rife with praise for the care his son received under Britain’s National Health Service, of which he has been an ardent and outspoken supporter—“such a glorious institution that I almost cannot believe it exists” (57)—the primary objects of Delaney’s admiration in the text are not the oncologists and surgeons who work valiantly to save Henry’s life. Rather, it is the care workers who helped make his life meaningful. I want my students to hear this. That it is the entry-level nursing assistant who sits with Henry and sings “The Itsy-Bitsy Spider.” It is the hospital volunteer who brings in a therapy dog to lick his face. It is the children’s hospital television personalities who perform in Makaton (a sign language communication system in which Delaney later performed for British children’s television, an experience he heartbreakingly recounts). It is the support worker from Rainbow Trust Children’s Charity who assists with daily tasks. And it is the play worker and the music therapist provided by Noah’s Ark Children’s Hospice who “did the equivalent of aiming a firehose of pure joy” (119). And as a result, Delaney explains, he has focused his fundraising efforts on the aforementioned charities rather than on pediatric brain cancer research because the benefits of children’s hospice services are immediate, palpable, and “astonishing” (120).
Children’s hospices were first founded in England in the 1980s, on the heels of Dame Cecily Saunders’s inauguration of the hospice movement there in the late 60s, as Dr. Sarah Friebert, Director of the Haslinger Family Pediatric Palliative Care Division at Akron Children’s Hospital, details in her discussion of the development of the specialty of pediatric palliative care (PPC), of which she is a leader. Friebert dates a watershed moment in PPC at the turn of the twenty-fist century, with the publication of Joanne Wolfe and colleagues’ study in The New England Journal of Medicine on the end-of-life suffering of pediatric cancer patients. According to interviews with over one hundred parents of children who had died of cancer in Boston between 1990-1997, 89 percent of their children “experienced a lot or a great deal of suffering from at least one symptom” in their last month of life (Wolfe et. al. 330). These children had received “aggressive care,” and almost half of them had died in the hospital (half of those in the ICU). “As would be expected,” the authors write, “during the last month of life the majority of children had little or no fun (53 percent), were more than a little sad (61 percent), and were not calm and peaceful most of the time (63 percent), according to their parents. Twenty-one percent were described as often being afraid. The children who died of a treatment-related complication had a poorer quality of life than those who died of progressive disease” (331).
Despite such striking findings—and despite the Institute of Medicine’s 2003 report When Children Die, another landmark publication that Friebert identifies as “launch[ing] a call to action not only in clinical care but in research and program development”—the reach of palliative care continues to be uneven at best. According to a 2020 Pediatric Needs Assessment by the National Hospice and Palliative Care Organization, the majority of the United States lacks access to pediatric hospice and palliative care services, “with 71.5% of counties without access to home based hospice care, 81.2% without home based palliative care, 78.7% without inpatient-based hospice care, and 81.5% inpatient based palliative care” (National Hospice and Palliative Care Organization, 9).
Imagine your child dead, Delaney demands.
Now imagine what it would mean and take to say, as Delaney does: “His death was good” (163).
Works Cited
Delaney, Rob. A Heart That Works. Spiegel and Grau, 2022.
Hemon, Aleksandar. “The Aquarium.” The New Yorker, 6 Jun. 2011, https://www.newyorker.com/magazine/2011/06/13/the-aquarium.
Friebert, Sarah. “Pediatric Palliative Care: A Specialty Comes of Age.” Cancer Commons, 14 Oct. 2019, https://cancercommons.org/latest-insights/pediatric-palliative-care-a-specialty-comes-of-age/
National Hospice and Palliative Care Organization. “NHPCO Pediatric Facts and Figures: 2023 Edition.” National Hospice and Palliative Care Organization, June 2023. https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2023.pdf.
Wolfe, Joanne, et. al. “Symptoms and Suffering at the End of Life in Children with Cancer.” The New England Journal of Medicine, vol. 342, no. 5, pp. 326-333.
Cover Image
Photograph by Peter Funk. Public domain, via Wikimedia Commons.