At Bel-Air Country Club, with stunning views on a smogless day of West Los Angeles, there’s a par-4 hole that doglegs to the left around tall eucalyptus and calls for a comma-shaped draw, which is a shot I have, and not a banana-shaped slice, which is the shot I hit, and as my ball soared right, over bushes and chain link and into the back yard of an in-my-dreams mansion, the two UCLA golfers with whom I was playing said, in stiffly accented unison, emphasis on the first syllable of the second word:
It was a sunny afternoon in the Santa Monica Mountains, but their reaction to my drive had nothing to do with time of day, and as I teed up another, muttering about the lost ball and penalty stroke, my hosts explained their words of farewell:
My golf ball had sailed into the back yard of Alfred Hitchcock.
“Good evening,” Hitchcock’s greeting on his marvelously macabre TV series, became the parting words to my tee shot, and to all of my out-of-bounds golf shots ever since, if only to myself. The director of “Psycho,” “Marnie” and “Vertigo,” to name a select few Hitchcock films, also altered my sense of roadside motels, birds on a wire, heights, and the neighboring coastal towns of Bodega and Bodega Bay in Northern California.
I love the drive from Santa Rosa to Bodega Bay. I’ve made it many times during visits with family, and the drive itself is like a Hitchcock film — the way a bend in the road changes reality from bright sunlight to damp, dark fog. Around one of those bends, Hitchcock himself stands outside a store, in life-size cutout form. Around another is the hilltop St. Teresa of Avila Catholic Church, famous for its flock, in the cinematic sense, if not the religious. “The Birds” was filmed here.
Hitchcock’s birds found something uniquely compelling about Bodega Bay, and I have to agree with them.
But as often as I made the drive to Bodega Bay, I had not noticed the cemetery. If you’re in a place that celebrates Hitchcock, you really ought to notice the cemetery, but I never had until that day in the mid-1990s when I drove my elderly parents and sister to see the memorial to Nicholas Green, a child from Bodega Bay. Hollywood made a movie about Nicholas. His headstone is in the Bodega cemetery.
Hitchcock and “Nicholas’ Gift” are connected by more than Bodega Bay. Janet Leigh, the actress who played Marion Crane in “Psycho” (and thus changed for a generation the simple act of taking a shower), was the real life mother of Jamie Lee Curtis, who played the mother in “Nicholas’ Gift.” It is hardly worth mention that the actor who played the father had the last name Bates; Alan and Norman were no relation. All that is trivial, though, and Nicholas’ story is not.
“Nicholas’ Gift” is a TV movie, albeit a very good TV movie, more compelling than overwrought, and tells its story without tugging excessively at the heartstrings. The simple details of the true story of what lies around the bend do that quite sufficiently: An American family on vacation in Italy, driving late at night, children in the backseat, highway bandits mistaking the car for an intended target, and peacefully sleeping Nicholas never again to awaken.
The bullet wound to Nicholas’ brain is fatal, but not immediately, as he is mechanically sustained in a Sicilian hospital in the department known as Reanimazione. But hopes for his recovery fade fast amid signs that his brain is no longer functioning, and this is when the film becomes fascinating to me. Nicholas’ parents are in shock and confronting the sad realization that their young son, a life force only hours before, is now breathing only because of machines. He is dying, can no longer sustain life on his own, and his parents come to the brutal acceptance that they must let go. In the TV movie, the scene is compelling and deeply human. I can only imagine the scene in real life.
The doctors are compassionate, and there is emerging agreement that keeping Nicholas alive only delays the inevitable and is not in Nicholas’ best interest. But removing Nicholas from life support will require a legal process sure to last longer than Nicholas. Had Nicholas never been placed on artificial life support, this would not have been an issue. But he was, to buy time and assess his chances, and now prolonging his life has transitioned to that impossibly bizarre place where the harm of “hastening” his death, by withdrawing mechanical life support, collides with that in dragging out his process of dying. In my work with Community Voices in Medical Ethics, a Boston nonprofit, this is the most philosophically baffling place I’ve found myself.
What changes this equation, and what I find so compelling about the film, is when the parents, in a remarkable epiphany of generosity and humanity, suggest that Nicholas’ organs be harvested to save the lives of others. This is where the historical significance of the Greens’ story lives: Before Nicholas’ corneas, kidneys, liver, pancreatic islet cells and heart were transplanted in seven Italians, organ transplantation had little support in Italy. Transplantation was done, and done successfully, but donation was rare. The remarkable generosity of an American child’s grieving parents, coupled with the astounding ability of surgeons to remove organs from one newly deceased human, pack them into several coolers for transport, and then place them into other humans in need, significantly increased organ donation in Italy and beyond. Perhaps no other single event ever has promoted organ donation in such a way. Italian TV personality Maurizio Costanzo told the Greens, “You have taught us a lesson in civility.”
Nicholas’ story has moved so many for obvious reasons: from one family’s tragedy, five lives were saved and two gained sight. Four were teen-agers, two were parents of young children. And maybe that’s all we need to know. But when it was Nicholas’ life alone, when there were no other human lives to think about, removing mechanical life support would require a judge’s permission. It was only when Nicholas ceased to be autonomous, and became part of something considered bigger than any one human, that his dying could be allowed, not prolonged, without a judge’s permission.
Why was allowing natural death unacceptable without a judge’s OK when the only life involved was Nicholas’? What changed? Was it the disappearance of autonomy? Was individual autonomy something of an illusion in the first place?
DIFFICULT DECISIONS in care of the dying, or those who seem imminently terminal, are a recurring theme in the work of Community Voices in Medical Ethics, and its affiliate Community Ethics Committee. The former grew from the latter, which in 2007 began its work reporting to and advising the ethics leadership of the teaching hospitals affiliated with Harvard Medical School. The decisions I struggle with most, as a member since 2008 of this remarkable, all-volunteer group, recur in conflict between choice and life.
Pro-life and pro-choice have come to have meaning mostly related to the fate of pregnant women and the unborn beings inside of them, but the questions of who lives and who chooses only begin then.
Erring medically on the side of life, and regularly allowing for recovery until even mechanical efforts have been exhausted, have transformed critical care into pulse maintenance, and the modern ICU into an warehouse of oblivion, to paraphrase the horrifically descriptive words of the surgeon and journalist Atul Gawande.
Over the past several years, Community Voices has studied and reported on intractable disputes in end-of-life care, the politically charged physician-assisted suicide, non-therapeutic CPR, palliative sedation of the imminently terminal, and the very first study, of pediatric organ donation, rife with questions about timing of organ harvest and cardiac death. (See http://www.medicalethicsandme.org/p/publications-of-cec.html)
I’d watched “Nicholas’ Gift” years before participating in most of these studies. Watching it again was different. The tragedy of his murder hadn’t changed, but I have a new and growing desire to distinguish prolonging life from prolonging dying. Nicholas was in the Reanimazione department for his own reanimation, but acceptance of the death of those autonomous hopes allowed seven others to experience reanimazione. For some the gift was life itself. For others it was quality of life.
Putting a child on life support is so easily supportable, there’s almost no decision involved, and yet removing life support can seem heartless and unthinkable. The story of Nicholas Green and his parents’ extraordinary decision sheds light on an area of medical ethics that I find especially challenging: how often we err on the side of prolonging life, even at the cost of prolonging suffering and dying. And yet it is easy to see why prolonging life is thought to be a good, but not so simple, in a pluralist society, to see the wrong in prolonging dying.
Such was the impetus to save a human life, or more than one, that it justified allowing the natural death of Nicholas Green without a judge’s approval. The surgeons were entrusted with harvesting the dying boy’s organs and transplanting them into seven other humans, but without donation as a factor, the doctors would not be trusted with allowing Nicholas to die, even with the parents’ support. That would require a higher, if less medically informed, judgement.
IN THINKING THROUGH hard questions with Community Voices, the Big Four ethical values of medicine (beneficence, non-maleficence, justice and autonomy) are useful, but what I cannot do without, I’ve discovered, is a real person with real loved ones. This is why Nicholas Green and his family became so important in trying to make sense of a world of organ transplant in which there never are enough organs to go around, and decisions must be made involving life, choice and even rationing.
When applying the values to a question without a real person to complicate my thinking, I can usually come up with strong opinions and reasonable certainty that tend to expire once a real person enters the equation.
In Spring 2013, another real person entered the equation. Sarah Murnaghan, a 10-year-old Pennsylvanian nearing death due to the progression of cystic fibrosis, was given new hope by a double lung transplant. Organ donations from children are especially rare, and as recipients children are low on the transplant list for adult lungs. So Sarah’s parents sued to have their daughter considered for surgically modified adult lungs. It became a heated topic in national media, and thousands signed an online petition to win priority for her. Congress grilled the secretary of Health and Human Services about it. A judge decided in Sarah’s favor, and an organ soon became available for her. That first transplant failed, but within days she had received another pair of lungs.
The complexity of transplant ethics is such that Nicholas Green, at age 7, likely wouldn’t have qualified for an adult lung, had he needed it, and perhaps that would have been appropriate. Fair? Just? Those are harder questions. If the chances of success with an adult lung are significantly lower for a child than an older patient, those improved chances should be weighed. So should the potential additional years for a child recipient.
To be considered for transplant with a major organ, a patient must need the new organ to survive, but that is only the beginning. The hopeful recipient needs to have no other significant complicating factors that would diminish the chances of a successful transplantation. Otherwise, that person can’t even get on the waiting list. Desperation isn’t enough; there must be a reasonable chance of success
So to be eligible for a transplant, you need to be dying for lack of a working organ, but otherwise in good condition. How Hitchcock is that?
There is a shortage of all organs for transplant, but lungs and hearts are especially scarce, and for every patient chosen to receive a transplant, another dies for lack of one. That is, someone must die for an organ to be available, so someone else might live, and another likely will die because the needed organ went to someone else.
As a society, we tend to love the happy endings in transplant, and loathe rationing.
COMMUNITY VOICES has taken on the task of providing community-based, non-clinical perspective on what is appropriate to consider in stewarding a scarce organ. Much of the answer is based on medical necessity, which can only be ascertained by transplant physicians. But the questions before us include whether access to the waiting list should be influenced by scarcity of the organ, and whether anticipated quality of life is something that can reasonably be considered by anyone other than the patient and family.
Our internal survey begins: Do you think organ transplantation is a good thing? So I must dutifully answer yes, no or maybe. Maybe is a near worthless answer. No is a mostly wrong answer. And yet my answer barely tips in the balance of yes. My yes becomes stronger when I’m assured that the organ in question was procured by moral and ethical means.
To even begin comprehending such questions, I have to humanize them, and so Nicholas Green and Sarah Murnaghan, who I only know through social and traditional media reports, a TV movie and a father’s book (“The Nicholas Effect” by Reg Green), are humanizing these questions for me. Two others play a similar role.
One is a Down’s child I got to know in the hospital in the months leading up to my own daughter’s bone marrow transplant. The Down’s child, now with successful treatment of blood cancer and heart surgery behind her, has enjoyed several wonderful and happy years. She has the sort of parental love and support all children should enjoy.
The other is a young adult with serious neurodevelopmental issues who hugs more and better than just about anyone I know. Neither, I’m happy to say, needs an organ transplant. But if they did, should they even be considered, if their health otherwise makes them good candidates? What if their parents weren’t such committed supporters and advocates? Who would see them through the relentless and rigorous days of post-transplant? One of them is a teen-ager now, and teen-agers have a certain earned reputation for not following orders, medical or otherwise. How certain must transplant surgeons be that the recipient of this scarce organ will follow through with the rigorous demands of post-transplant care?
The fact that I know these two people shapes my answer: Of course they should receive the organs as needed. Their lives are of no lesser value because of their special needs and challenges. Such a patient should be given no less priority or access than anyone else, unless there are other complicating medical factors. Which, sadly, is often the case.
One more person humanizes the questions for me. She is a woman who cared for my mother for six years, beginning within days of Dad’s death, and was holding Mom’s hand when she died. Meanwhile, her own teen-age son received a new kidney, only to waste it by not adhering to the demanding post-transplant medications and therapies. Now a young adult, should he get a second chance? What would be good stewardship of a precious resource? I can’t say yes and I can’t say no. My answer is a slippery maybe.
ONE SUNNY SUNDAY in 1996, the Santa Rosa Press Democrat featured a story on a memorial to Nicholas Green which had just been installed off of Highway 1 in Bodega Bay. I was visiting my parents and sister, reading the paper over coffee, and the story inspired a road trip. Mom didn’t travel well, or often, so getting out was a big deal. It was the last drive I took with both parents.
We headed south on 101, passed through Sebastapol and heard again the story my sister likes to tell about how she almost moved to Sebastapol instead of Santa Rosa. We wound through the vineyards and orchards, and passed St. Teresa and the tuxedoed Hitchcock, enjoyed the smell and sight of the massive, shimmery eucalyptus, and stopped off for a look at the hilltop golf course in Bodega Bay. The course has spectacular views, and Dad and I had discussed playing there many times, but never gotten around to it. We didn’t know that the Greens lived beside the 18th fairway.
The weather was cooler but as sunny in Bodega Bay as it had been in Santa Rosa, which, though they’re not far apart, isn’t always the case. The coast can bring a chill.
The memorial, easy to miss, is toward the north end of the village of Bodega Bay, on the ocean side of Highway 1. I drove right past, made an awkward U-turn, then turned right into the parking lot. I thought the newspaper’s coverage might inspire a crowd of visitors, but only one other family was there: the Greens.
There’s a heartwarming, life-giving side to an organ transplant, but there’s also a Hitchcock side, and the Green’s story captures much of both. Organ transplantation usually requires somebody to die, and to die in a timely fashion, or the organs will be of no use.
There is an urgency to harvest the organs while they still are of use to someone, because that time is quite short. But maybe something else dies along with the donor: the notion of autonomy.
There is another side of transplant left out of the TV movie: the patients in need for whom there is, or was, no timely organ. There were more organs needed by patients than Nicholas or anyone else could provide, but we only know the names of the seven recipients. When one patient is chosen for transplant, another is not chosen, and likely dies for want of one. That side also is largely missing from coverage of Sarah Murnaghan’s ordeal.
There is no way to avoid rationing organs.
There also is no way to accurately predict or tell the recipient what they’re in for. The post-transplant life, devoted to making the new organ receptive to the new body, and vice versa, can be a relentless and rigorous mix of drugs and therapies. The beneficiary of a successful transplant experiences an ordeal for which there is no way to prepare, with medications and invasive procedures to ensure engraftment. Transplant is more hopeful than predictable.
A lot of people otherwise sympathetic to the practice never get around to opting in to the donor program, and so many die wanting. I blame the dark side of transplant. The Hitchcock side. Of course, an opt-out system, by which donation would be assumed unless the person opted out, has its own troubling plot twists. There may be no way to have enough organs available to meet the need, and satisfactory answers to all the ethical questions that would bring.
Nicholas’ memorial is the work of Bruce Hasson, a San Francisco area sculptor. His metal structure is 18 feet high and from it hang 140 bells, mostly sent by Italians. There are church bells and school bells, cow bells and ship bells, some precious keepsakes of the families who sent them, others specially made in Nicholas’ memory. On the central bell, made by the papal foundry and blessed by the pope, are the names of the seven organ recipients.
A photographer for People Magazine took pictures of the Greens as we approached, so we kept a respectful distance, listening to the bells ringing softly in the eucalyptus-scented sea breeze. (It seems worth noting, as a metaphorical aside, that eucalyptus are not native to Bodega Bay, but thrive there nonetheless.)
Noticing our arrival, Reg Green made a point of coming to greet us. My dad was the sort of guy who’d feel like an old friend minutes after you met him. He and Nicholas’ dad struck up a conversation. They had the same first name: Reg. My dad offered his condolences, said how much respect he had for what the Green family had done. Reg Green, a charming man, was generous with his gratitude that we came to visit the memorial to his son.
The photo shoot finished, we sat on a stone wall, listened to the bells and searched for meaning in their sound. The central bell, blessed by the pope and made by the Vatican’s foundry of choice, also is blessed by the names of the seven Italians with Nicholas’ organs.
After Dad died a couple years later, my sister and Mom and I took a drive to Bodega Bay, stopped off afterward at the wharf restaurant for an early dinner, and just missed seeing Tipi Hedren, whose character’s purchase of the caged love birds set the Hitchcock side in motion in “The Birds.” Tipi Hedren is probably more beloved in Bodega Bay than the filmmaker.
In Calabria, I’ve read, there’s another bell sculpture, also created by Bruce Hasson and donated by the Greens. It is called “The Birds,” of which there are seven, made from the steel of confiscated guns.
To learn more about the Nicholas Green Foundation, and Reg Green’s efforts to encourage organ donation, see http://www.nicholasgreen.org/