**5. Changing the way organ donation is thought of**

From the very beginning the global explosion of interest showed us that we had an opportunity to make a permanent change in the way organ donation was thought of. Everywhere we went the media came too.

Building on this, one or other of us has given speeches in countries as diverse as Venezuela and New Zealand, Russia and South Korea, written dozens of articles for or been interviewed by publications ranging from The Times of India to Oprah Winfrey, from Buddhist television in Taiwan to Vatican radio, spoken in evangelist churches, synagogues and cathedrals, to Muslim and atheist groups and to every age from nursing homes to primary schools.

I have written two books on organ donation. One of them, "The Nicholas Effect" [3], was the basis for the made-for-television movie, "Nicholas' Gift" [4], starring Jamie Lee Curtis and Alan Bates which has been seen by 100 million people worldwide. The other, "The Gift that Heals," has been used by hospitals across the United States as the easiest and most comprehensive introduction available to the human side of organ donation.

One result is that people all over the world feel close to Nicholas and have responded with an enthusiasm that has multiplied the message. To give just one example: a school in Sicily put two clocks in its hallway, one set for local time, the other set to 'Bodega Bay time,' the village in California where we and Nicholas lived, so that every day students are reminded that as they go through life there is always something they can do for others.

The message traveled up as well as across. Pope John Paul II was so moved by Nicholas' story that he authorized the casting of a magnificent bell for a tower designed and built by a San Francisco sculptor, Bruce Hasson, in Bodega Bay, which is dedicated to all children who have died [5].

I always felt, however, there was one cause that needed to be taken up in Italy where the law effectively prevents the two sides of a transplant from making any sort of contact, even by anonymous letters. For more than twenty years I stayed clear of the issue not wanting to be seen as interfering in the laws of a foreign country. But in 2016, at the age of 87 I thought time was running out, so with the help of just one friend, Andrea Scarabelli of Rome, I started a lonely campaign—we called ourselves Don Quixote and Sancho Panza—bombarding the media with information, writing articles, being interviewed on national television. Key elements of the media responded so enthusiastically that we reached tens of millions of people and everywhere in Italy those people began to ask, "If two families want to meet, why not?" Marco Galbiati, the bereaved father of a much-loved 15-year old boy, for example, collected 50,000 signatures in favor of changing the law.

Faced by these two prongs, the Italian National Transplant Center referred the issue to the National Bioethics Committee, which almost everyone saw as a delaying tactic. We bombarded the committee with evidence, most tellingly of how in the great majority of cases in the United States, when families have contacted each other, the health and happiness of both have improved. To general surprise, having scrutinized all the information presented to it, the committee decided in favor of allowing contact—including face-to-face meetings—under the usual conditions and if both sides express a wish for it. The Italian Department of Health endorsed the decision [6] and legislation has been introduced into the Italian Parliament.

#### **6. Contacts between families are strongly encouraged in the United States**

Unlike most countries, communication between the two sides is strongly encouraged in the United States, and it works with great success. Naturally, how families

**23**

their kids' baseball team.

**7. Contacts that turn negative are rare**

*The Results Are Positive for Both Sides in the Great Majority of Cases When Organ Donor…*

their loved one is still bringing peace of mind to complete strangers.

The process of communication is handled by one of the organ procurement organizations (OPOs) designated by the US Department of Health to look after transplant families and staffed by specially trained health professionals. Before the letter is sent it is read at the OPO for signs that it might cause difficulties: does it suggest the writer is looking for a closer relationship than normal? Does it indicate extreme views that might not be compatible with the other family's lifestyle? If something seems wrong the letter-writer may be warned to go easy or the letter may be stopped entirely. If all looks well, however, as it generally does, it is forwarded, unsigned.

Reading it, the donor families might weep a little at the memories it stirs, but the predominant feeling is one of excitement and fulfillment. Having read the letter they have complete freedom of action, anything from putting it away and never doing anything more or, if they wish, replying with an anonymous letter of their own, which will also be scrutinized by the OPO, and if it sends up no cautionary signs (as it rarely does) will be passed on to the first family. Alternatively, it might

be the donor family who makes the first move but the process is the same.

If all goes well (as it normally does) the two families can start sending letters that they sign and tell more about themselves. In time (with their medical advisers' approval) they may want to telephone, send photos or email each other—each stage an exciting step that reveals more and more about themselves—and, ultimately, if both agree, they can meet, like families who happen to come into contact with each other under any other circumstance. Why not? Here the bond is far more meaningful than two families who meet because they have a common interest in yoga or

If the people who want to know more about the other side were just a handful, and unrepresentative of the typical family, this would be a side issue. But it is not. This is what Alexandra Glazier, CEO of New England Donor Services, an OPO responsible for organ donation in six states with a population of 14 million, says: "A recent review of our data indicates, that about 52 percent of donor families will connect with a recipient, either by receiving a communication from or sending a

respond to that possibility is different in every case. Some do not want any part of it. Others embrace it eagerly and for them the steps are carefully chosen and watched over by their doctors all the way. The normal procedure is for both sides to be asked if they are willing to receive an anonymous letter from the other. If either of them says no, the process stops cold and is abandoned however persistent the other family is. If both agree to communicate, however, one side writes an unsigned letter. If it is the recipients who make the first move their letters typically start by saying they do not know how to express their gratitude: but then they dig deeply into themselves and even the ones for whom writing is difficult find a power they did not know they had. On reflection, this should not be surprising: they are speaking their most intense thoughts. They then say the transplant has worked well (it generally has) and that they can now do things that were impossible while they were sick. That part of the letter astonishes many donor families: they had not fully understood until then that before the transplant many of these people had stayed indoors permanently and were afraid to be alone at any time; or that their hopes of marrying, having a baby, getting a degree, traveling, playing games or having a career had been put out of their minds as impossible fancies; or that every night when they went to bed they wondered if they would wake up in the morning. Accompanying that understanding comes a surge of pride in the donor family that even in death

*DOI: http://dx.doi.org/10.5772/intechopen.93544*

#### *The Results Are Positive for Both Sides in the Great Majority of Cases When Organ Donor… DOI: http://dx.doi.org/10.5772/intechopen.93544*

respond to that possibility is different in every case. Some do not want any part of it. Others embrace it eagerly and for them the steps are carefully chosen and watched over by their doctors all the way. The normal procedure is for both sides to be asked if they are willing to receive an anonymous letter from the other. If either of them says no, the process stops cold and is abandoned however persistent the other family is. If both agree to communicate, however, one side writes an unsigned letter.

If it is the recipients who make the first move their letters typically start by saying they do not know how to express their gratitude: but then they dig deeply into themselves and even the ones for whom writing is difficult find a power they did not know they had. On reflection, this should not be surprising: they are speaking their most intense thoughts. They then say the transplant has worked well (it generally has) and that they can now do things that were impossible while they were sick.

That part of the letter astonishes many donor families: they had not fully understood until then that before the transplant many of these people had stayed indoors permanently and were afraid to be alone at any time; or that their hopes of marrying, having a baby, getting a degree, traveling, playing games or having a career had been put out of their minds as impossible fancies; or that every night when they went to bed they wondered if they would wake up in the morning. Accompanying that understanding comes a surge of pride in the donor family that even in death their loved one is still bringing peace of mind to complete strangers.

The process of communication is handled by one of the organ procurement organizations (OPOs) designated by the US Department of Health to look after transplant families and staffed by specially trained health professionals. Before the letter is sent it is read at the OPO for signs that it might cause difficulties: does it suggest the writer is looking for a closer relationship than normal? Does it indicate extreme views that might not be compatible with the other family's lifestyle? If something seems wrong the letter-writer may be warned to go easy or the letter may be stopped entirely. If all looks well, however, as it generally does, it is forwarded, unsigned.

Reading it, the donor families might weep a little at the memories it stirs, but the predominant feeling is one of excitement and fulfillment. Having read the letter they have complete freedom of action, anything from putting it away and never doing anything more or, if they wish, replying with an anonymous letter of their own, which will also be scrutinized by the OPO, and if it sends up no cautionary signs (as it rarely does) will be passed on to the first family. Alternatively, it might be the donor family who makes the first move but the process is the same.

If all goes well (as it normally does) the two families can start sending letters that they sign and tell more about themselves. In time (with their medical advisers' approval) they may want to telephone, send photos or email each other—each stage an exciting step that reveals more and more about themselves—and, ultimately, if both agree, they can meet, like families who happen to come into contact with each other under any other circumstance. Why not? Here the bond is far more meaningful than two families who meet because they have a common interest in yoga or their kids' baseball team.

#### **7. Contacts that turn negative are rare**

If the people who want to know more about the other side were just a handful, and unrepresentative of the typical family, this would be a side issue. But it is not. This is what Alexandra Glazier, CEO of New England Donor Services, an OPO responsible for organ donation in six states with a population of 14 million, says: "A recent review of our data indicates, that about 52 percent of donor families will connect with a recipient, either by receiving a communication from or sending a

*Bioethics in Medicine and Society*

**5. Changing the way organ donation is thought of**

of. Everywhere we went the media came too.

from nursing homes to primary schools.

something they can do for others.

is dedicated to all children who have died [5].

collected 50,000 signatures in favor of changing the law.

From the very beginning the global explosion of interest showed us that we had an opportunity to make a permanent change in the way organ donation was thought

Building on this, one or other of us has given speeches in countries as diverse as Venezuela and New Zealand, Russia and South Korea, written dozens of articles for or been interviewed by publications ranging from The Times of India to Oprah Winfrey, from Buddhist television in Taiwan to Vatican radio, spoken in evangelist churches, synagogues and cathedrals, to Muslim and atheist groups and to every age

I have written two books on organ donation. One of them, "The Nicholas Effect" [3], was the basis for the made-for-television movie, "Nicholas' Gift" [4], starring Jamie Lee Curtis and Alan Bates which has been seen by 100 million people worldwide. The other, "The Gift that Heals," has been used by hospitals across the United States as the easiest and most comprehensive introduction available to the human side of organ donation. One result is that people all over the world feel close to Nicholas and have responded with an enthusiasm that has multiplied the message. To give just one example: a school in Sicily put two clocks in its hallway, one set for local time, the other set to 'Bodega Bay time,' the village in California where we and Nicholas lived, so that every day students are reminded that as they go through life there is always

The message traveled up as well as across. Pope John Paul II was so moved by Nicholas' story that he authorized the casting of a magnificent bell for a tower designed and built by a San Francisco sculptor, Bruce Hasson, in Bodega Bay, which

I always felt, however, there was one cause that needed to be taken up in Italy where the law effectively prevents the two sides of a transplant from making any sort of contact, even by anonymous letters. For more than twenty years I stayed clear of the issue not wanting to be seen as interfering in the laws of a foreign country. But in 2016, at the age of 87 I thought time was running out, so with the help of just one friend, Andrea Scarabelli of Rome, I started a lonely campaign—we called ourselves Don Quixote and Sancho Panza—bombarding the media with information, writing articles, being interviewed on national television. Key elements of the media responded so enthusiastically that we reached tens of millions of people and everywhere in Italy those people began to ask, "If two families want to meet, why not?" Marco Galbiati, the bereaved father of a much-loved 15-year old boy, for example,

Faced by these two prongs, the Italian National Transplant Center referred the issue to the National Bioethics Committee, which almost everyone saw as a delaying tactic. We bombarded the committee with evidence, most tellingly of how in the great majority of cases in the United States, when families have contacted each other, the health and happiness of both have improved. To general surprise, having scrutinized all the information presented to it, the committee decided in favor of allowing contact—including face-to-face meetings—under the usual conditions and if both sides express a wish for it. The Italian Department of Health endorsed the decision [6] and legislation has been introduced into the Italian Parliament.

**6. Contacts between families are strongly encouraged in the United States**

Unlike most countries, communication between the two sides is strongly encouraged in the United States, and it works with great success. Naturally, how families

**22**

communication to, within the first two years of their loved one's organ donation." In 2019 in the US as a whole, a total of 29,000 letters were forwarded through OPOs from one side to the other.

Just like any other relationship, these people may find they do not have as much in common as they would like. They may find the other family uninteresting or uncongenial. In that case they do what everyone else does in life: they stop seeing them so often and if they are asked why they have become distant they answer diplomatically or bluntly, depending on temperament, just like any of us do. In fact, they are in a much stronger position to free themselves from unwanted relationships than the rest of us are. They have behind them the full weight of the health service saying: "We've been talking to the Smith family who say they think you are phoning them a little too often. We'd prefer that you didn't contact them for a while or wait till they contact you. Okay?" It would be a brazen family who persisted after a warning like that.

In fact, although worst cases can always happen, these relationships are overwhelmingly positive and many become very close. On one side these are people who helped you when no one else could: why would you feel anything but well of them? On the other they are people who have something inside them of someone you both love. So it seems natural if they choose to go to each others' houses for Sunday lunch, phone each other on birthdays, console each other when they feel unhappy (who better?).

Against this opponents of contact typically respond with generalized stories of how some contacts went astray—rarely anything that can be checked and generally long ago when best practices were still being worked out—or some hypothetical objection built on theory. However, my observation after meeting hundreds of transplant families is that, if the case is handled by the book, the risks are very low. In fact, I believe it is the people who are denied contact whose health and contentment are more likely to suffer. Like many of us, they much prefer the certainty even of bad news to a lifetime of doubt.

### **8. Two families meet and find happiness**

The story of Inger Jessen shows what happens in real life. It has not been easy for her: she has lost both a husband and a son. She herself had a leg amputated because of diabetes and when she was 55 her heart was so weak that she could not walk out of her house without help.

But instead of all that bringing a sense of isolation it has encouraged her to share with others. So, when in 1997 she received a new heart, her overwhelming instinct was to thank the donor family for their generosity and commiserate with them on their loss. Knowing nothing about them, she wrote an unsigned letter through OneLegacy, the organ procurement organization in Southern California.

She received no reply. She was disappointed but understood and put it out of her mind. Years later, however, when she had won two gold medals in swimming at the World Transplant Games—Olympic-style events open only to organ recipients she decided to write again, thinking that the news would show them in the most vivid way what a difference their donation had meant to her.

But she had no idea how shattered the family had been. The heart had belonged to an 18-year old, Nicole Mason, who had been knocked down by a car while she was walking on a road near home. Nicole's father, Dan remembers how nothing seemed to matter anymore. "I had no feeling for anything. Sometimes when I was driving I had to pull over to the side of the road to sob," he remembers. "I had a four-year-old grand-daughter and I couldn't even play with her."

**25**

*The Results Are Positive for Both Sides in the Great Majority of Cases When Organ Donor…*

But time passed and for the Masons too thoughts were stirring and in the end they decided they would like to know more about this kindly lady with whom they had such an unusual bond. They contacted OneLegacy, saying they would like to meet. Inger says that for days after she received the call, she went around in

On the 20th anniversary of Nicole's death, a date crammed with memories for all of them, they met and melted into each other's arms, 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. Everyone cried but through the tears of sorrow 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

For Inger too the meeting has had a profound effect. "Since then," she says, "I have felt a peace I haven't known in years." But the proof is not in anecdotes but in the statistics and there the evidence is very strong. *Tens of thousands of contacts* by letter or in a minority of cases in person have taken place and have been documented by medical professionals in the United States in the last thirty-some years and the results in the great majority of cases have been therapeutic for both sides.

In the United States bodies called Organ Procurement Organizations are designated by the U.S. Department of Health to oversee the welfare of families involved in a transplant, both donors and recipients. There are 58 of them, one for each state, more than one for the largest states. All 58 agree that in the great majority of cases

To take a few examples, Kathleen Lilly, Executive Vice President of LifeLink Foundation, which covers areas as diverse as the modern cities of central Florida, rural portions of Georgia, the high-class tourism of the U.S. Virgin Islands and Spanish-speaking Puerto Rico, says "Our foundation's experience with donor family and recipient communication has been overwhelmingly positive for all involved." At the opposite corner of the country is Life Center Northwest, whose territory includes states in the northwest of the United States and Alaska. Its CEO, Kevin O'Connor, says the same thing: "The ability to exchange letters between donor families and recipients is profoundly healing and therapeutic for both parties." And in the middle of the country, Jennifer Prinz, CEO of Donor Alliance, the organ procurement organization covering Colorado and most of Wyoming, agrees. "Correspondence between donor families and recipients is a tremendously powerful and positive practice in the donation. We see many donor families and recipients go on to have incredibly close, family-like relationships, across many years and great distances." It's difficult to argue against all that

Can things go wrong? Of course. What can't? But Tom Mone, CEO of OneLegacy, which covers 20 million people and 200 hospitals, says that in twenty years "no families who met each other have regretted it," Even for the small minority of cases which go bad, remedial action can usually be quickly taken. Meanwhile, should that small number prevent families who have suffered so much from experiencing what could be one of the most meaningful encounters of their lives? Should an impersonal medical bureaucracy be able to stop two mature families from even exchanging anonymous letters? Does it know better than the families themselves

You only have to ask the questions for the answers to be in no doubt.

**9. The organ procurement organizations are enthusiastic**

communication is beneficial to the two sides .

first-hand experience, isn't it?

and their medical advisers what is good for them?

*DOI: http://dx.doi.org/10.5772/intechopen.93544*

a dream.

was again."

*The Results Are Positive for Both Sides in the Great Majority of Cases When Organ Donor… DOI: http://dx.doi.org/10.5772/intechopen.93544*

But time passed and for the Masons too thoughts were stirring and in the end they decided they would like to know more about this kindly lady with whom they had such an unusual bond. They contacted OneLegacy, saying they would like to meet. Inger says that for days after she received the call, she went around in a dream.

On the 20th anniversary of Nicole's death, a date crammed with memories for all of them, they met and melted into each other's arms, 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. Everyone cried but through the tears of sorrow 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 has had a profound effect. "Since then," she says, "I have felt a peace I haven't known in years." But the proof is not in anecdotes but in the statistics and there the evidence is very strong. *Tens of thousands of contacts* by letter or in a minority of cases in person have taken place and have been documented by medical professionals in the United States in the last thirty-some years and the results in the great majority of cases have been therapeutic for both sides.

#### **9. The organ procurement organizations are enthusiastic**

In the United States bodies called Organ Procurement Organizations are designated by the U.S. Department of Health to oversee the welfare of families involved in a transplant, both donors and recipients. There are 58 of them, one for each state, more than one for the largest states. All 58 agree that in the great majority of cases communication is beneficial to the two sides .

To take a few examples, Kathleen Lilly, Executive Vice President of LifeLink Foundation, which covers areas as diverse as the modern cities of central Florida, rural portions of Georgia, the high-class tourism of the U.S. Virgin Islands and Spanish-speaking Puerto Rico, says "Our foundation's experience with donor family and recipient communication has been overwhelmingly positive for all involved." At the opposite corner of the country is Life Center Northwest, whose territory includes states in the northwest of the United States and Alaska. Its CEO, Kevin O'Connor, says the same thing: "The ability to exchange letters between donor families and recipients is profoundly healing and therapeutic for both parties." And in the middle of the country, Jennifer Prinz, CEO of Donor Alliance, the organ procurement organization covering Colorado and most of Wyoming, agrees. "Correspondence between donor families and recipients is a tremendously powerful and positive practice in the donation. We see many donor families and recipients go on to have incredibly close, family-like relationships, across many years and great distances." It's difficult to argue against all that first-hand experience, isn't it?

Can things go wrong? Of course. What can't? But Tom Mone, CEO of OneLegacy, which covers 20 million people and 200 hospitals, says that in twenty years "no families who met each other have regretted it," Even for the small minority of cases which go bad, remedial action can usually be quickly taken. Meanwhile, should that small number prevent families who have suffered so much from experiencing what could be one of the most meaningful encounters of their lives? Should an impersonal medical bureaucracy be able to stop two mature families from even exchanging anonymous letters? Does it know better than the families themselves and their medical advisers what is good for them?

You only have to ask the questions for the answers to be in no doubt.

*Bioethics in Medicine and Society*

from one side to the other.

warning like that.

(who better?).

of bad news to a lifetime of doubt.

of her house without help.

**8. Two families meet and find happiness**

communication to, within the first two years of their loved one's organ donation." In 2019 in the US as a whole, a total of 29,000 letters were forwarded through OPOs

Just like any other relationship, these people may find they do not have as much in common as they would like. They may find the other family uninteresting or uncongenial. In that case they do what everyone else does in life: they stop seeing them so often and if they are asked why they have become distant they answer diplomatically or bluntly, depending on temperament, just like any of us do. In fact, they are in a much stronger position to free themselves from unwanted relationships than the rest of us are. They have behind them the full weight of the health service saying: "We've been talking to the Smith family who say they think you are phoning them a little too often. We'd prefer that you didn't contact them for a while or wait till they contact you. Okay?" It would be a brazen family who persisted after a

In fact, although worst cases can always happen, these relationships are overwhelmingly positive and many become very close. On one side these are people who helped you when no one else could: why would you feel anything but well of them? On the other they are people who have something inside them of someone you both love. So it seems natural if they choose to go to each others' houses for Sunday lunch, phone each other on birthdays, console each other when they feel unhappy

Against this opponents of contact typically respond with generalized stories of how some contacts went astray—rarely anything that can be checked and generally long ago when best practices were still being worked out—or some hypothetical objection built on theory. However, my observation after meeting hundreds of transplant families is that, if the case is handled by the book, the risks are very low. In fact, I believe it is the people who are denied contact whose health and contentment are more likely to suffer. Like many of us, they much prefer the certainty even

The story of Inger Jessen shows what happens in real life. It has not been easy for her: she has lost both a husband and a son. She herself had a leg amputated because of diabetes and when she was 55 her heart was so weak that she could not walk out

But instead of all that bringing a sense of isolation it has encouraged her to share with others. So, when in 1997 she received a new heart, her overwhelming instinct was to thank the donor family for their generosity and commiserate with them on their loss. Knowing nothing about them, she wrote an unsigned letter through

She received no reply. She was disappointed but understood and put it out of her mind. Years later, however, when she had won two gold medals in swimming at the World Transplant Games—Olympic-style events open only to organ recipients she decided to write again, thinking that the news would show them in the most

But she had no idea how shattered the family had been. The heart had belonged to an 18-year old, Nicole Mason, who had been knocked down by a car while she was walking on a road near home. Nicole's father, Dan remembers how nothing seemed to matter anymore. "I had no feeling for anything. Sometimes when I was driving I had to pull over to the side of the road to sob," he remembers. "I had a

OneLegacy, the organ procurement organization in Southern California.

vivid way what a difference their donation had meant to her.

four-year-old grand-daughter and I couldn't even play with her."

**24**

*Bioethics in Medicine and Society*
