Are the privacy rules on organ donation causing unnecessary grief?

Published on Giornale Italiano di Nefrologia (The Italian Journal of Nephrology)

Link: http://giornaleitalianodinefrologia.it/en/2017/07/18/la-privacy-sulla-donazione-di-organi-causa-inutile-dolore-alle-famiglie/

A few weeks ago I received an email from a family in England, complete strangers, which said, “Our 21-year old son, Jack, was run down and killed crossing a road in Sicily in 2009”. Despite the nightmare of this happening so far away, his parents, David and Debbie Marteau, donated his organs. Jack’s heart was sent to Rome and his kidneys and liver went to three people in Sicily.

And after eight years of wondering what happened, that is just about all they know. They have no idea if the recipients are young or old, male or female, or if all or none of them are still alive.

Their anguish and frustration are palpable. “We have always held a wish to make some connection with them or at least to know how they are doing,” David added. He and his wife have written to the two hospitals that performed the transplants but have had no reply. They asked me to try to find out whatever I could, anything. “We are out of ideas,” they said wearily.

They contacted me because my wife, Maggie, and I, who live in California, donated the organs of our seven-year old son, Nicholas, in Italy after he was shot in an attempted carjacking while we were on a family vacation there in 1994.

In our case, however, this being an event that captured Italy’s imagination, the identity of the seven recipients was known almost immediately.

Four months after the transplants we went back to Italy to meet them en masse at an event organized by the Bonino-Pulejo Foundation, the cultural foundation based in Messina, Sicily, where Nicholas died. Only the heart recipient was not there, still recovering from a condition that before the transplant was so serious he could scarcely walk to the door of his apartment.

Watched by hundreds of people in a packed hall and millions on television round the world, they came in with their families, a small army of people, some smiling, some tearful, some shy, some ebullient, but all looking vibrant and healthy.

Four months earlier they were phantoms. “Did one little body do all this?” I said to myself. Since then we have met them all again once or twice and one of them several times.

Twenty-three years later five of the seven are still alive and even the teenagers are approaching middle age. In that time organ donation rates in Italy have tripled, a rate of increase no other country has come close to. Although in any growth of such magnitude there are many causes, it is known as “The Nicholas Effect” and those front-page stories and television interviews, showing us with the robust survivors were a crucial part of it.

But in 1999, five years after Nicholas was killed, a new law was enacted to protect patients’ privacy that forbids healthcare personnel from disclosing information about either donors or recipients. In all normal circumstances the two sides know nothing about each other. Differing restrictions are in force in countries around the world (1).

Clearly, there are weighty reasons for the two sides not to have contact, such as the fear that one party may make unreasonable emotional demands on the other, worries about the effect on the donor family if the donation fails and even the possibility that the donor families will ask for money.

How real these risks are in practice I don’t know. American experience, where the rules are different, suggests they are greatly exaggerated. But against those risks are their opposites: that knowing nothing can cause considerable pain. I know that pain is real – or, in its milder form, a sense of something unfinished — because both donor families and recipients around the world have told me so. Given that organ donation is the most altruistic of all health decisions, and that all donor families are going through the ordeal of adjusting to a life that has lost an essential ingredient, that seems grossly unfair.

The meetings we have had with our own recipients have been therapeutic for both parties. On our side, we have living, smiling proof that a simple decision brought five people back from the shadow of death into more or less normal lives and gave back sight to two others.

We have never thought that Nicholas lives on in them in any meaningful way. “Those are their organs now, not his,” I remember Maggie saying to a newspaper reporter immediately after the transplant.

But talking with them or hearing stories about them or reading emails from them is a reminder that the life of our small boy, whom we all thought would do something important, was not wasted. You can imagine what a consolation that is.

For the recipients too, knowing us has been a tonic. They have seen for themselves that we do not begrudge them a happiness they gained only because Nicholas died. Better still, they know they can give us no better gift in return than to remain healthy and happy. Thus they have been spared the vague sense of guilt that clings to many organ recipients.

When I was in Italy a few months ago for a television interview with Nicholas’ liver recipient, Maria Pia Pedala, I decided to ask her something I have always kept away from. “Have you ever felt upset about the transplant?” I mumbled, fearing I was stepping on dangerous ground.

Her answer was direct and forceful. “At first, it upset me that I was alive because a little boy had died,” she said. It was a classic response. “But then Maggie told me: ‘If his liver had not gone to you, it would have gone to someone else.’” That lifted the burden, she said. Instead she thinks of Nicholas as an angel guarding the family, including her son who was born four years after the transplant and whom she named – yes – Nicholas.

Unlike us, the Marteau family is caught in a well-intentioned web of privacy protection, even though the circumstances of our donations are quite similar. There may be a way of finding the basic information they are looking for but if so no one has explained it to them and so far every avenue they and I have tried is closed.

Conditions differ markedly between different countries and what fits one would not work in another. However, in the United States the general rule is that the two sides can meet if both want to and if the health care organizations looking after them have no objection. The system appears to work well for all parties. There are no national statistics but plenty of anecdotal evidence. Any reader who wants to know more should contact the Association of Organ Procurement Organizations (www.aopo.org)

Rob Linderer, chief executive officer of Midwest Transplant Network, the government-designated organ procurement organization that oversees organ donation in the state of Kansas and a part of Missouri, says in 38 years he can recall only two interactions of recipient and donor families in his area when there were problems. One, more than thirty years ago, was the mother of a heart donor who became obsessed with the recipient and who was told gently but firmly she had to break off the contact.

In fact, for Linderer the biggest challenge in the early years was the one-year waiting period MidWest had as part of its policy. “Many recipients and donor families felt it was an unreasonable hurdle,” he says. “We revised our policy and now do not have time frames if both parties agree to communicate sooner.”

OneLegacy, the organ procurement organization for Los Angeles and most of Southern California, and one of the biggest in the United States, says that for its area too problems when the two sides contact each other are “rare” adding that “in the large majority of cases the outcomes are very positive.”

These interactions are quite numerous. Gift of Life Donor Program, another of the largest organ procurement organizations, receives three or four letters a day from one side wanting to contact the other side. Most are from recipients who want to express their gratitude to their donor family. They struggle to find their own way of saying “words are inadequate to thank you” but the urgent desire to find those words is clear in every one of them. Many add, “I think of my donor every day.” All this is balm for donor families.

All those who deal with these relationships have also seen cases of “secondary loss” where, when a recipient dies, the donor families re-live their own loss. It is a risk anyone who wants to start a relationship has to be aware of. The alternative, of course, is a lifetime of doubt, as the Marteau family is experiencing. In our case I can say that, when two of Nicholas’ recipients died, we never felt we were losing him again, only that we were losing two brave people with whom we felt a special bond.

Even then, hearing from families how much their loved ones achieved in those extra years is a priceless consolation. When Nicholas’ heart recipient, Andrea, died a few months ago, 23 years after the transplant, one of his cousins suggested we meet on my next visit to Italy. There, in a conversation that was a delight and comfort to both of us, she told me how he called his new heart a Ferrari, compared to the old patched-up jalopy he had before. It’s a story I will smile at until my dying day.

When these contacts lead to face-to-face meetings, the risks are higher – though both sides will have been thoroughly screened by the health teams before that takes place. But the rewards also can reach an entirely level. Recently, one of them took place in Los Angeles in public. It was electrifying. The story traces back to 1997 when Inger Jessen, then 55, received a new heart. She did what considerate organ recipients do, she wrote a letter thanking her anonymous donor family and sent it to her organ procurement organization, OneLegacy. Without revealing Inger’s name, they passed it on to the parents of the donor, 18-year old Nicole Mason, who had been hit by a small pickup truck as she was walking on a road near her home.

There was no reply. “I understood,” Inger said. “My son died from a heart attack when he was 30.”

Still, she was troubled. Before the transplant she couldn’t walk to her car without help and she wanted to visualize the people who had saved her life. She didn’t know their ages, what they did for a living or why they donated.

So when, two years later, she won two gold medals for swimming in the World Transplant Games — Olympic-type events for organ recipients — she sent a card to OneLegacy, to be passed on anonymously to the donor family, still knowing nothing about them but hoping it would give them some comfort to know the huge change their gift had made to her life. Again she did not hear back.

Meanwhile, Dan and Shirley Mason in Big Bear Lake, California were still numb from the loss of their lovely high-spirited daughter. “I had no feeling for anything. I had a four-year old grand-daughter and I couldn’t even play with her,” Dan remembers.

“Sometimes when I was driving I had to pull over to the side of the road to sob.”

Twenty years passed until out of the blue Inger, now 75, got a call from OneLegacy. The Masons wanted to meet her! For a moment she thought it was a mistake, a call for someone else, perhaps, that had gone astray. For days she went around in a dream.

“We were ready at last,” Dan explains. “We had seen how much good we could do by speaking out. It seemed so selfish not to open up.” Their grief is still evident in everything they do. “I don’t want to forget a thing about Nikki,” he says.

But having decided to meet Inger they wanted to have the maximum impact on organ donation and on May 15, 2017, 20 years to the day after their daughter’s death, they agreed to meet in front of a battery of television cameras.

“We spent a nervous night before the meeting,” Dan says. So did Inger, who has had more than her share of troubles: she still has three children but her husband is dead and one of her legs was amputated because of diabetes.

But when she and the Masons met, they fell into each other’s arms. “They were so loving,” Inger says. “She was so caring,” says Dan.

It was a heart-rending occasion for everyone, the climax coming when the Masons listened by stethoscope to the strong, regular beat of their daughter’s heart, which has worked perfectly from the start (2)(fig 1). OneLegacy made a three-minute video of the Masons meeting Inger Jessen.

The link to it is  https://www.youtube.com/watch?v=DgCLEkjS7sk.

But through the tears shone the joy. “I couldn’t believe I was listening to Nikki’s heart,” Dan recalls with awe. “I think of her every day. She seems so far away. But here she was again.”

For Inger too the meeting had a profound effect. “Since then,” she said, “I have felt a peace I haven’t known in years.”

Reg Green (www.nicholasgreen.org)

 

AFTERWORD:

I have written this paper, with the encouragement of Professor Natale De Santo, nephrologist and professor emeritus at the University of Campania to stimulate discussion on the way the 1999 law works in practice. As a foreigner, I am very much aware that I have no grounds for drawing conclusions. I have simply laid out my experience so others can decide.

References

  1. Italian Regulation of Organ and Tissue Transplants Law 91, 1° april 1999, available at this link: http://trapianti.net/en/regulation/
  2.  OneLegacy made a three-minute video of the Masons meeting Inger Jessen. The link to it is https://www.youtube.com/watch?v=DgCLEkjS7sk.

ITALIAN VERSION:

(La Privacy sulla Donazione degli Organi sta causando un inutile dolore alle famiglie?)

Link all’edizione in Italiano:

http://giornaleitalianodinefrologia.it/2017/07/18/la-privacy-sulla-donazione-di-organi-causa-inutile-dolore-alle-famiglie/

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