Let us take a closer look at the last two questions in the example given. It is easy to say you are free to be an organ donor. On the other hand, many donors have said they cannot walk away. They have given their word, and they would not back out once they have given their word. Is this coercion or commitment?
There are times donors will hear of the need and, emotionally, offer on the spot, or even later, to donate without knowing what is involved. These donors may feel obligated to continue because of their commitment to the candidate and not want to back out once they learn of the process. Throughout the process, donors are given education and an opportunity for counseling and for opting out gracefully or medically.
As we discuss this issue, the stories tumble out about how the freedom to walk away would be there if it were not for the commitment to their word. If there is a part in the process that says the donor cannot go forward, they have the freedom to walk away and not feel they have not tried to help.
The names in the following stories have been changed to protect the identities and also give credence to the personalities.
Story 1: Nonrelated
This is the story of a 41-year-old man. Connor wanted to help his stepdaughter have a better chance at life by receiving a kidney. Connor had read the book and looked online for information regarding the living donor process. He felt he understood what was expected.
Connor worked at Ground Zero post 9/11 to help with the aftermath. He recalled that experience as being filled with fear; he said, “it was something you had to do to understand.” A quiet strength exuded from him as he sat in my office that day, in August, and shared his story.
We talked about his family of origin; he is the only male child, with three sisters. He remains close to one of his sisters; the others have moved away. His mother and father taught him right from wrong and to be fair, and his father taught him a strong work ethic. Connor finished high school and had on-the-job training with an electric company, where he has been working for the past several years.
For fun, Connor mows the lawn and plays video games with his son. To relax, he enjoys that backyard with the freshly mown lawn. If it is raining, he uses the Internet to relax. He has never had a major illness, and the only surgeries requiring anesthesia, have been minor.
With his motivation to help his stepdaughter, his wife to help support him through recovery, and a stable home, Connor rates himself a 10 on the peace scale. Moving onto relationships with the Higher Power, Connor considers himself a very spiritual person, which also helps with being at peace.
Connor says, “You cannot describe this Higher Power . It’s bigger than the pictures you see in church.” Although Connor does not have faith community, he has a prayer life. He and God have ongoing conversations. These conversations are about everyday life, family, problems, and joys.
In addition to God in his life, Connor lives with his wife, stepdaughter, daughter, and son. Although he has all these people around him, his greatest support is himself. He had discussed organ donation with his wife. She was a bit concerned. He also talked about it with his boss, who was supportive knowing about the possibility of extended leave from his job. Connor has not shared this with anyone else and he does not express his fears regarding organ transplant or anything else to anyone other than himself. He is a very self-reliant individual.
His most significant relationships in his life are his relationships with his children. They bring him tremendous joy and pride. He has known his stepdaughter for 17 years and loves her very deeply. On the importance scale, Connor rates the stepdaughter a number 10.
When the need for a kidney for his stepdaughter arose, Connor stepped up and said, “I am going to do this, she needs a kidney. Five years ago, would Connor have donated? He said, “Depending on the recipient, if family, yes.” Connor does not have any fears regarding the surgery; however, we had this little question about considering the possibility of rejection. Connor’s face became very serious, he was quiet for a moment, then said, “What can you do?” I prompted with “How would you feel?” Again he was quiet, then softly and hesitantly he said, “I’d be disappointed.”
Connor was open—he was free to walk away from his decision. His desire was for this stepdaughter to be healthy. He was very willing to give of himself for his stepdaughter. His comment was “I will do my part for her to have a healthy life. It will be up to her to do the right thing to live healthy.” Connor does not want to give his kidney to someone who will blow the chance on drugs, drink, and poor living. He wants to give his stepdaughter a chance to make something of her life. If his stepdaughter were to take up alcohol and/or drugs, Connor reflected he would be disappointed.
Analysis
Connor is very willing to give of himself for his stepdaughter. His comment, “I will do my part for her to have a healthy life. It will be up to her to do the right thing to live healthy,” shows this willingness to help his stepdaughter achieve a healthy life. In our conversation, Connor also said that he does not want to give his kidney to someone who will blow the chance on drugs, drinking, and poor living. Connor truly wants to give his stepdaughter a chance to make something of her life. Although Connor states he is free to walk away, he holds himself to the decision. He feels he must help his stepdaughter and therefore by holding himself to the decision he is not free to walk away. This is his decision, and he feels he must help his stepdaughter. He will be disappointed and discouraged if the stepdaughter chooses to blow the chance he is giving her, but it is a risk he feels he must take as a father. I approved of Connor to move forward in the process.
Story 2: Sisters
Donna is a 49-year-old woman who was excited that her life was finally getting back on track. She had read the patient information booklet on living donation 3 years ago when she had planned to give her sister, Marie, her kidney. However, Marie got too sick then and the transplant had to be put on hold.
One major defining event in Donna’s life was the death of her mother from diabetes and stroke at the age of 59. She does not want to see her sister die young as well.
Getting married was a very “big thing” in Donna’s life. Her heartache was that she could not have children of her own. However, to her joy, she was invited to the birth of all of her nieces and nephews. If she was not in the birthing room, she has been involved in their lives. In Donna’s words, “I get to spoil them and send them home.” Donna looks out for her nieces and nephews and has good relationships with them.
When she and her sister were growing up, their mother was always home and their father was constantly working. Their father was always a loner, and still is; however, if you asked him to do something he was right there. Their mother controlled the house. Their father taught them hard work and that if you take a job, you do it. Their mother did not like to work. She kept the house, though Donna learned the crafts and cooking from her grandmother. Donna was close to her grandmother.
Donna has an older brother who was always doing the “boy things” and two younger sisters with whom she did the “girl stuff.” She considers herself the fix-it person as far as relationships go. Marie is the younger sister and had a room to herself. The two older sisters, Donna and Jean, used to say she was spoiled because she had her own room. They socialized with their friends together, without Marie. The siblings are still fairly close, especially the girls.
After high school, Donna worked factory jobs. When she began getting laid off frequently, she went to school, took a medical assistant course and has worked with a cardiology group for 16 years. With her husband now retired, travel is the fun thing in her life. Donna also likes to cook, and crochet or knit cozy items for fun; to relax, she goes to the gym or to the movies.
Donna does not recall having a serious illness and never had a problem with anesthesia during the surgeries for her cleft palate, deviated septum, and kidney stone. Therefore, she does not see a problem with surgery now.
Marie has been sick for a long time; Donna’s motivation for donating her kidney is to help Marie get her life back on track, help get her healthy. “No payment is needed or wanted, just seeing my sister healthy” is all she wants. Donna’s level of peace is between an 8 and a 9, only due to the fact that the last time they were this close, something went wrong. Donna cannot be at peace until the day of surgery.
On intake, Donna stated she was a member of a congregation. In the relationship with a Higher Power , Donna went further to talk about her relationship with God. She is a spiritual person, believing that God is always there to talk to, anytime and anywhere. Her personal beliefs supersede her religious denomination’s ‘greatest teaching’. The church Donna belongs to has not influenced her decision. Her conversations with God are in regard to her family’s health and safety and about work and relationships. Donna believes her prayers are sometimes answered.
Donna gathers support from her husband, a girlfriend at work, and her personal trainer. In addition to these three individuals, Donna has discussed organ donation with family and a few other friends. At first, her husband was distressed; however, after her husband spoke with Dr. Moritz, he understands the process, is more open to the donating, and is becoming supportive. Others have expressed concern asking how long Donna would be laid up and asked if she would be okay. Donna’s employer is also aware of the donation, is supportive and aware of the possibility of extended leave. All in all, Donna’s family and friends support her in her decision to donate her kidney to Marie.
Donna considers family her most significant relationship . There is a 20-year age difference between Donna and her husband, Tom; he is 20 years her senior, and this sometimes presents a significant barrier in their relationship, especially since his retirement. Tom likes to travel, and Donna prefers to be with family. Marie, Jean, and Donna are very close. And as mentioned earlier, Donna has been present or close by for the birth of her sisters’ children and is actively involved in their lives. Donna rates Marie a number 8–9 on the importance scale. When Marie had the need for a kidney, Donna just said “I will do it.” Marie never asked. The only fear about the surgery is the recovery time. If the kidney is rejected, Donna will be disappointed, but with the knowledge that she did what she could.
Donna says she is free to go forward and free to walk away. In her words, “Would I walk away? No! Am I free to? Yes! No one but me is keeping me here!. I have made this decision.”
Analysis
This is the second time through the process for Donna and Marie. Donna is determined to help Marie get her life back on track and see her through to health. Donna places family on a high level of importance. Donna’s only fear is that something will happen to Marie before the surgery can take place. The last time they were ready to go for surgery, Marie became too sick. Donna is ready to move forward in the donation process.
Story 3: Donor Exchange
Eileen, a 40-something business woman, came to the office for an interview. She wanted to donate her kidney to her husband, Skip. We were to find out later that she was not a match for Skip; however, a year later, we would find a match for Skip from Sondra. Eileen’s kidney would go to Sondra’s mother.
Eileen’s Story
As Eileen discussed the major events in her life, I noted the amount of loss she was describing. Her divorce came at the same time as her mother’s illness and death from a brain tumor. Her mother died 1 year after her diagnosis and after she had spent 6 months in coma. Her husband decided to divorce her during this time, and Eileen had little family support. Five years later, Eileen’s dad died from lung cancer. His death was more sudden, as he was diagnosed was in May and he died 2 months later, in July. Her sister died of colon cancer 5 years ago. Eileen me Skip during her mother’s illness, and her separation and divorce. Skip was always kind, listened and was a source of strength and compassion. Overall he was a strong influence and support during her times of distress.
Eileen’s family of origin consisted of her mother, father, a sister, and brother. Her parents taught her honesty and responsibility. With only a couple of years between them, Eileen and her siblings had a close relationship. The sisters remained close as adults, the sisters became closer.
After high school and college, Eileen has worked in the banking and mortgage business. For fun, she likes to sail, snow ski, and walk. To relax, just sitting in the sailboat with her husband, Skip, feeling the water beneath her, it totally unwinds every part of her body. Eileen and Skip love to sail together and spend much time on the water.
Related posts:
The History of Living Donor Advocacy in Living Donor Transplantation
Contraindications to Living Donation from an ILDA Perspective
Living Donor Liver Transplantation
Autonomy, Agency, and Responsibility: Ethical Concerns for Living Donor Advocates
Informed Consent for Living Organ Donation
Findings from a National Survey of Living Donor Advocates
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