"I Will...Remain Alive" - A Story of Organ Donation
In this article, the author tells a story of organ donation and nurses' ongoing, critical role in helping families through the process.
National Donor Day - February 14
Let's remember the people who gave the gift of life to others.
“Our son, Adam, was declared brain dead on January 20, 1998. He had been riding back to college with some friends and he was sitting on someone’s lap when the driver swerved to miss an animal, and the car rolled. Adam had a closed brain injury. They did everything they could.”
Dave Lively, Adam’s dad, shared the story with me, bringing back again the anguish our whole community felt when it happened. “But you know, even all these years later, Adam’s spirit is with us through the people that still live with his organs.
I asked him how he first heard about organ donation during that difficult time. “After Adam was declared brain dead, we got a call from a nurse named Dwight. He asked me if we had ever considered organ donation. The question gave us pause because Adam had actually told us, about six weeks before the accident, that if anything ever happened to him, he wanted to be an organ donor. He was just that kind of guy—very giving. But his words also gave us a gift of peace—and it took a weight off of our shoulders—knowing that we were doing what he would have wanted.”
“All total, 52 people benefitted from his gift. Ken got his heart. Ken had cardiomyopathy and his days were numbered. Now he lives on to see his children grow up and meet his grandchildren. Donna has his pancreas. Because of Adam, she can share birthday cake with her son. Two people got to be off of dialysis; others received long bones, skin, corneas, even ligaments.”
I asked Dave what he wishes all nurses knew about organ donation. “It’s such a hard time, but organ donation helps to make good come from it. Don’t let brain death be the end. There are 120,000 people on the waiting list for organs and 22 people die every day because they don’t get the transplant they need.”
“The chaplain and the nurse from the local organ donation organization were the key professionals that we connected with during those days. They stayed with us and answered all our questions.”
In 2016, 33,606 transplants were reported, representing an 8.5 percent increase over the 2015 total and an increase of 19.8 percent since 2012, according to the Organ Procurement and Transplantation Network (OPTN). This is a record high for the fourth year in a row. Many factors contribute to this but better publicity, public education and positive outlook from nurses and other medical professionals can certainly contribute to the public’s increasingly favorable perspective of organ donation.
Also, in recent years clinicians have begun to accept donations from persons who have died of conditions that previously might have been an automatic decline such as drug intoxication, circulatory death, or even those who have some elevated risk for blood born disease. The oldest donor was in her 90’s! As criteria for accepting donations change, nurses remain key players in the time surrounding death and organ harvesting. By providing a climate of gentle acceptance and supportive presence, we have the ability to help make the process of following a loved one’s wishes a little bit easier.
While nurses can be supportive, it is important to wait to begin the conversation about donation when a trained professional arrives or calls the family. Even though we do not talk about organ donation directly, our body language and facial expressions do contribute to the overall climate of acceptance as families discuss the possibility of making this treasured gift of life.
In 1998, a law was passed that stipulated that only a professional trained through an Organ Procurement Organization (OPO) be allowed to discuss possible donation with the family of a patient who dies in a hospital facility. This law was passed in response to the astounding statistic that families approached by a trained professional agreed to donate 67% of the time as compared with those approached by another member of the medical team—9%.*
I asked Dave about how he and his wife were able to keep moving forward after Adam died. “We became spokespersons for organ donation. We accepted every chance we got to go out and speak, to educate and to help spread the word about what good donation can do.”
As we wrapped up our conversation, he told me that at one local event, a county fair, he was passing out flyers with his son’s picture on them. A girl looked at the flyer and said, “I knew Adam! I was in astronomy class with him. He was so nice to me. He made me feel good about myself.” Dave sighed, “Yep, he was just that kind of a guy.”
Adam’s dad told me one last story. After his son’s death, he and his wife received a letter from Adam’s philosophy professor. In it, he quoted a prescient line from Adam’s senior paper, “I still have a desire to believe that ‘death’ is, in fact, not a death. I will ultimately, somehow, remain alive.”
* 63 Fed. Reg. 33,856, 33,860 (1998), citing Klieger J, Nelson K, Davis R, et al. Analysis of factors influencing organ donation consent rates. J Transplant Coord. 1994;4:132-4.Last edit by Joe V on Oct 19
Joy is a parish nurse and a part time hospice nurse. She enjoys getting outside to take long walks and loves spending time with her family, especially her two grandchildren.
Joined Jan '15; Posts: 289; Likes: 934.Feb 14I agree that the nonverbals in the room make a big difference and could be a part of the increase in the organ donation rate.
I got tested to see if my kidney would work for a family friend that had multiple complications after years of cancer treatment. To be honest I was hesitant toward the concept even though I knew I would be doing the right thing. The nursing staff was very reassuring during the entire process. It made me confident in my decision. He passed shortly after but shortly after. I changed my license to DONOR after the experience.Feb 14Thanks Claudster for even considering living donation - thats a wonderful gift you were willing to give your friend.
Because I work in nephrology - I'm very lucky to witness pts getting transplants and seeing them go on to good quality lives.
Living kidney donation is a great option as are "donation chains."Feb 14My mother-in-law died very unexpectedly at the age of 66. While it was a very hard time for the family, they decided to donate organs, tissues, anything that could be used. She was a school teacher and mother of 5. They knew this is what she would want....to help save the lives or improve the quality of life of others.
Thanks for this great and poignant reminder, Joy.Feb 14When I started my career in oncology 10 years ago, as soon as our local transplant network heard the cancer diagnosis, they were a decline. Now I'm surprised at the patients they're able to use something from- still usually just eyes or skin, though.Feb 14Quote from ClaudsterThank you for sharing your personal experience. Nurses do have a powerful influence on the success or failure of the donation and transplant process. You have a good heart!I agree that the nonverbals in the room make a big difference and could be a part of the increase in the organ donation rate.
I got tested to see if my kidney would work for a family friend that had multiple complications after years of cancer treatment. To be honest I was hesitant toward the concept even though I knew I would be doing the right thing. The nursing staff was very reassuring during the entire process. It made me confident in my decision. He passed shortly after but shortly after. I changed my license to DONOR after the experience.Feb 14Quote from tnbutterflyThank you so much for sharing from your own life story. Donation touches so many lives: of course those of the recipients; but the family gets to experience a completely different grief knowing that their loved ones' life continues to bless others.My mother-in-law died very unexpectedly at the age of 66. While it was a very hard time for the family, they decided to donate organs, tissues, anything that could be used. She was a school teacher and mother of 5. They knew this is what she would want....to help save the lives or improve the quality of life of others.
Thanks for this great and poignant reminder, Joy.Feb 14Quote from blondy2061hYou are so right. Things have changed a whole lot. Writing this article was eye opening for me because as I did the research, I felt my own perspective and knowledge shift. I am so grateful for the opportunity to work on this article!When I started my career in oncology 10 years ago, as soon as our local transplant network heard the cancer diagnosis, they were a decline. Now I'm surprised at the patients they're able to use something from- still usually just eyes or skin, though.Feb 14Many of my pts have wounds and thru the use of deceased donor skin, they are often spared an amputation.Feb 14Quote from traumaRUsI was working with a family recently who wanted to know more about this particular part of the donation process. I am curious too about how the skin is harvested, transported and transplanted. It might be an interesting article to read... JoyMany of my pts have wounds and thru the use of deceased donor skin, they are often spared an amputation.Feb 15I've been the nurse who has cared for the patient in between brain death testing and the OR. It's emotionally difficult -- death is. But knowing that their loss isn't in vain, that their loved one is giving others a chance at life and/or sight, seems to be incredibly healing. I recently had a donor who had been estranged from her next of kin, and she expressed that during the process her heart had begun to heal from THAT pain.
Thank you for your article!Feb 15I've posted about this subject before. I'm currently a nursing student and I lost my precious little 5-year-old son in 2010 in a drowning accident. We donated his organs and were comforted greatly by the opportunity to glean a bit of good out of a nightmare. The staff of the organ donation organization had everything to do with this. Even through my grief, I was able to recognize what extraordinary people they were. That's the point of this post. While I would imagine training is important and necessary, I'm not sure that anyone could do it. I truly believe there was just something about these people that made it work. I don't know what that thing was--empathy? compassion? But those are attributes many people have. The word that comes to mind is "holy"--and I'm not religious. Maybe it's just the idea that anyone who would make this their life's work would have to be cut from a special cloth. I hope this was helpful--just my two cents.Feb 15The topic of being an organ donor came up in the nurses break room. I stupidly thought it would be a no brainer in that everyone would be a donor. I was so shocked to hear two nurses say they wouldn't do it. One had some crazy story about a friend seeing a loved one who was a donor something about they had chopped off the loved ones leg? I couldn't respond to that! I was so shocked I can't remember what the other nurse said.
I had thought these were two intelligent rational co-workers.Last edit by brownbook on Feb 15 : Reason: clarity
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