D5. Organ Donation
The transplant of tissues and organs between persons has developed since the 1960s, and in many countries organ donation is a question asked routinely when individuals apply for a driver’s license.
This chapter aims to introduce:
- The types of laws used to regulate organ donation.
- The ethical issues associated with organ transplants.
- The type of counseling given to the donors’ family regarding organ donation from a brain dead body.
- Use the role play to illustrate the dilemmas surrounding a heart transplant, and ask whether recipients should be able to know the donors’ family.
D5.1. A Review of Organ Transplantation Laws
Legal tools are a necessity in organ procurement to allow transplant surgeons to remove organs from potential donors. Uses of new life-saving technologies vary across cultural and socioeconomic backgrounds. Therefore a variety of capacities exist in terms of expertise, legislation, access to sophisticated transplant facilities and the economic affordability of organ replacement therapy.
In Asia different cultural and religious backgrounds which influence social acceptance of transplant technology draw a different picture. In some countries the organ transplantation law did not increase the organ retrieval rate but actually decreased the number of transplantation cases. For example, in Korea before the enforcement of the current law (Organ Transplantation Law 2000), 162 cases were diagnosed as brain dead in the year before, but only 43 cases were diagnosed in 2003.
Unlike most Western countries, in many Asian countries there is an age limitation for organ donation after death. For example while organ removal is prohibited from children under fifteen years old in Japan, this age is sixteen years old in Korea. In India, Turkey, Saudi Arabia and the Philippines the ages are eighteen years old and in Singapore is twenty one years old. Although there is an age limitation for organ removal from children, in order to save other children lives who need to receive an organ, in many countries (except Japan) the law allows parents to get permission for organ donation based on the best interest of their beloved ones.
Q1. What do you think about children who need to receive an organ, while the law prohibits organ removal from children even based on their parent’s consent?
Q2. In your country what is the minimum age that people can donate their organs?
D5.2. The issue of consent
In some countries regulations for organ transplants are different. Donor consent has been recognized as a necessary for organ donation in all these laws. In many countries if there is no document to show deceased willingness for organ donation, the family can permit organ removal based on their beloved one’s interest. Donor card and living will are documents to show donor’s willingness for donation. Individual who wants to be an organ donor after her/his death can sign such document.
In Singapore (Human Organ Transplant Act, 1987/2004) an opting out system has been applied which means the designated officer (a medical practitioner) of a hospital may authorize, in writing, the removal of any organ from the body of a person who has died in the hospital for the purpose of the transplantation except from an individual who has during his lifetime registered his objection to the removal of the organ from his body after his death. In other words an individual who won’t be a donor after his death should fill out an objection form. (Singaporean Muslims are exempted from opting out system).
In Japan a donor card signed by individual as well as her/his family has validity for organ removal (a double signed card), and individuals can choose “not to donate” at the back of the donor card. In other countries although the attempt should be made to obtain the family agreement, donor consent alone is legally enough. In Iran (Organ Transplantation Act, 2000) oral consent confirmed by one of the family member in writing is accepted. In Turkey also oral consent is accepted.
D5.3. Surrogate decision making
In Asian countries, family surrogate decision making by the family when an individual has not left any document, either willingness for organ donation after death or any objection, has been recognized. The Japanese organ transplantation law (The Law Concerning Human Organ Transplants, 1997) is an exception to this. In other words Japanese parents can not be as surrogate decision maker for their children in case of organ donation. In some countries like, the Philippines, India, and Saudi Arabia in case of unclaimed body after forty eight hours failing to locate a family member, surrogate decision making has extended to the official authority.
It should be noted that in organ transplantation laws in many countries, it is not clear that within a family, who has authority to give permission for organ donation.
D5.4. Organ removal from living donors
In some countries living donation can be performed only if the recipient is a near relative. In Singapore as for living organ donation, written authorization of the transplant ethics committee of the hospital and donor consent in writing for the removal of the specified organ from his body are necessary.
In Saudi Arabia (Regulations of organ transplantation, 1994), and Malaysia, living organ donation is limited to genetically relatives. While in Malaysia, organ donation to spouse is accepted, in Saudi Arabia, before performing living related transplantation the relationships between donor and recipient should be attested by an official organization.
In some countries if recipient is not a near relative, human organ can be removed and transplanted with the prior approval of the authorization committee.
In Iran in order to prevent organ trade, in case of living donation, donor and recipient should be compatriot. In case of living donation in Turkey, (Turkish Organ and Tissue Transplantation, 1979) doctors are obliged to inform the donor’s spouse as well. In many countries if donor and recipient are not relatives their name should not be disclosed.
Only in the Philippines (Organ Donation Act of 1991), there is an international sharing of human organs and tissues. Sharing of human organs or tissues shall be made only through exchange programs duly approved by the Department of Health, provided, that foreign organ or tissue bank storage facilities and similar establishments grant reciprocal rights to their Philippine counterparts to draw organs or tissues at any time.
In some countries there is a guideline to select the recipients. For instance in Singapore there is a priority setting for selection of the proposed recipients which a person who has not registered any objection for organ donation with respect to that organ, shall have priority over a person who has registered an objection.
Q3. Did anyone you know ever receive a blood transfusion, or donate blood? (Blood is a renewable organ, which makes it different to many organs).
D5.5. Incentives for organ donation
In Japan there was an initiative by a leading transplant surgeon as “Thank you fund” to provide payment to the families of organ donors. This initiative has been criticized by other doctors and no longer practiced.
In Iran a non governmental organization (NGO) is responsible to present a certain amount of money as a social gift to the kidney donors.
In Singapore an organ donor has priority to receive an organ if s/he becomes a case in need for an organ. It can be consider an indirect incentive for organ donation.
Q4. Do you think that organ donors should be rewarded?
Q5. Do you think organ transplant recipients should be able to thank the donor’s family? Can you think of any problems of doing so?
D5.6. Read the following story and consider how you would feel if you were in the Abai family or the Maleki family?
It was Sunday afternoon, the 8th of August. Mr. Maleki was at the pharmacy to purchase some drugs for his wife who was suffering from severe heart disease.
His mobile phone rang,
“Mr. Maleki, I am Jahed the coordinator from Teheran University hospital.”
“I just want to make sure that you are in the city, because there is a possibility for your wife to receive a new heart. There is a matching donor, whose heart, the Organ Procurement Committee has decided to allocate to your wife from among the patients on the Waiting List. Fortunately all medical tests and HLA Typing also matched.”
“Thank you so much Jahed”, Mr. Maleki said, with tears of happiness, “But what shall we do?”
“Just be available and I will call you when the final decision is made. Please do not tell Mrs. Maleki because it is not sure yet and I do not want her to be told until we are sure. We are just in the process of getting consent from the patient’s family. I think your wife should come to the hospital tomorrow. I will call you again tonight.”
“Thank you so much. I look forward to your call. Bye.”
“Good-bye, Mr. Maleki.”
Mr. Maleki came back home very happy but was not able to say why. His wife and his daughter were upset.
“What happened?”, he asked, “Is something wrong?”
His daughter replied:
“Ali Abai, Roya’s brother, had an accident. When I called Roya to go out together she refused and told me that Ali’s condition was very bad and the doctor said that his brain cells have no function.”
“What does it mean? Okay I will go to Mr. Abai’s home”, Mr. Maleki said.
At the Abai family home.
“Hi Roya, is your father home?”
“Hi Mr. Maleki”, she replied with a low voice. “Come in, please, he is talking on the phone in another room.”
“Welcome Mr. Maleki”, Mr. Abai said with a very sad voice.
“Hello Mr. Abai. I was very sad to hear that Ali had an accident. Is he better now? We are very sorry that it happened….”
“Thanks, he is at the hospital and doctors have little hope for his recovery.” He cried. “I just was talking to my cousin who is a doctor and he also confirmed what Ali’s doctor has told us.”
“I am very sorry, I don’t know what to say: it is a very hard situation. We pray for his recovery. If there’s any thing that I can do, please let me know.”
“Please just pray for him.”
Monday morning. 7:30.
Mr. Maleki asked his wife to get ready to go to the hospital.
“But did you forget? On Wednesday we have an appointment with my doctor not today.”
“I got a call last night from the hospital. Your doctor asked us to go today.”
“Did they say for what?”
“Let’s go. We’ll find out when we get there”, Mr. Maleki said.
At 8:30 when they were leaving their house, they saw Mr. Abai and Roya who were also going somewhere and they greeted each other from their cars.
Central Hospital: The Abai family:
After visiting Ali, Mr. and Mrs. Abai, were guided into another room.
A man came in and introduced himself as the organ procurement coordinator.
“Thank you for coming, I am Jahed. I am very sorry about what happened to your dear son. We know how you must feel now and I hope you will allow me to talk more about his condition.”
The Abai’s could only nod to say yes.
“I think his doctor has already informed you that after the accident his brain lost its function and his breathing is now controlled by a respirator, a machine. In such circumstances a patient is in a brain dead state. Unfortunately, we can do nothing now and he will never recover. But there is something which I have to share with you. And forgive me to talk about it in this very hard situation which you are in. There is a possibility of saving other lives by donating some organs from Ali to transplant to some patients and to give them a chance to stay alive.”
Mr. and Mrs. Abai were quiet and listened.
“In our country according to the law for organ removal from these cases, a Donor Card or a patient’s prior declaration to organ donation is needed. As you have written in this form, there is no written paper to show Ali’s agreement or disagreement. The law does allow the family to make a decision on behalf of their beloved ones based on his or her best interest. Indeed, the family is the closest and the one guaranteed to be the surrogate decision maker in this very important matter.”
For Mr. And Mrs. Abai it was very hard even to hear such things and they felt they needed to get fresh air. They asked to go out for a while.
Mr. Abai asked his wife with tearful eyes about her opinion. Mrs. Abai started,
“How can we, How,…it is Ali there, quite and silent, our dear son, only 23 years…”
“Do you remember”, Mr. Abai said, “in a new year show on TV there was a program about the patients who were on the waiting list for organ transplantation?”
“Yes”, – she said after a while, – “but why are you asking about that?”
“Do you remember what Ali said after the show?”
“No. What kind of question you are asking!”
“I remember Ali was very impressed by the show and said: “It is so nice to be able to save other lives…”
“Yes”, she said after a while and cried…
They came in the room again.
“Jahed, we remember that Ali once said after seeing a television program that “It would be so nice to be able to save other lives.”
“Are you sure?”, Jahed, the coordinator, said.
“Do you think that if Ali was able to talk, he would agree?”, Mr. Abai asked.
“If you agree to organ removal, the surgeons can save some other lives and it is a great act of love.”
It was a very tough decision. They looked at each other and at papers given by the coordinator. Being there was only increasing their suffering.
“What do you think?”, Mr. Abai asked his wife.
“I hope Ali’s soul will be happy with this.” Bursting to tears she left the room.
Mr. Abai signed the forms and went after his wife.
Tehran University Hospital: The Maleki family
Mr. and Mrs. Maleki were waiting to see Jahed, the organ procurement coordinator. A nurse came and asked them to go to the doctor’s room.
“I just got a call from the Organ procurement unit that they have allocated a heart to you. Congratulations!” Her doctor said with smile.
“Thank you very much doctor”, Mr. and Mrs. Maleki both replied.
“No you should thank the donor! You should be admitted right now for a pre operation check up. I think we’ll receive the heart tonight and schedule your operation for early tomorrow morning.”
It was late at night when Jahed came to see Mrs. Maleki in the hospital,
“The heart has been transferred to our hospital now.”
He asked Mr. Maleki to sign some forms and wished them good luck.
Tuesday night, Tehran University Hospital Intensive care unit:
Mr. Maleki and his daughters and son were looking at Mrs. Maleki through a glass window. They were crying but all very happy. The doctor came in and said:
“Fortunately a very critical hour has passed and she is conscious now and we are very hopeful for her recovery.”
“We do not know how to thank you doctor”, Mr. Maleki and his children said.
“Don’t mention it, as I said, the real thanks must be to the donor”, the doctor replied.
“How can we thank the donor’s family”, Mr. Maleki asked.
“According to the regulation you cannot have contact.”
Two Weeks later:
For the past three days Mrs. Maleki had been at home after being discharged from the hospital. She was still in her recovery period, with a little pain, but very hopeful and appreciates having a second chance for life, gifted to her by a heart donation from a brain dead patient. They were expecting the visit of Jahed the coordinator at 4 pm, coming to check Mrs. Maleki’s condition.
This morning, Mr. Abai also called them to say they will come around 5:00 pm to visit Mrs. Maleki.
At 4:00 o’clock, the phone rang and Jahed apologized for his delay and said he will reach there in an hour. At 5:00 Mr. Abai and his family came. Although after Ali’s death, they felt much sorrow in their heart but they tried to show their happiness for her successful treatment by having a smile on their faces.
“Come in please, welcome”, – Mr. Maleki said as he opened the door.
“Good afternoon Mr. Maleki”.
“Thank you for your coming. What nice flowers”, Mrs. Maleki said.
After a while Mrs. Maleki was talking about her operation and how painful the day after the surgery was. The door bell rang as Jahed arrived.
“Welcome Jahed, Welcome.”
Mr. Maleki was about to introduce Mr. Jahed to his guests, but realized that the Abai’s and Jahed were very surprised to meet there. They seemed know each other from before. It was all quiet for a moment, it seemed as though time had stopped. The children were confused by the gazes that were exchange between their parents.
“Hello Jahed”, Mr. Abai said.
“Hello Mr. Abai, Hello Mrs. Abai, it is nice to see you here, I did not know that you know Mr. Maleki.”
“We have been family friends for a long time.”
“That is nice, you are already familiar with each other, but how?” Mr. Maleki said.
“Yes …” Mr. Abai said. His way of looking at Jahed asked the question. Jahed, felt at a lost but telling the truth was inevitable.
“Yes Mr. Abai, Yes”, Jahed said with helplessness.
Mrs. Abai was not able to control herself and burst to tears. Jahed knew that excitement was not good for Mrs. Maleki’s health, then, by pointing with his eyes they all went into another room to talk.
After a few minutes, Mrs. Abai came in with smile and she put her ear on the chest of Mrs. Maleki, and said, from now when I miss my son I will come here to hear the sound of Ali’s heart in your chest.
Q6. What question did Mr. Abai ask through his look at Jahed?