More often than not stories of organ donation tend to focus on happy and healthy organ recipients, public education of why or how to become an organ donor, or even the startling depiction of just how many people are currently awaiting transplant.
But rare are the times when the experience of the donor and their family – the ones giving their organ or tissue to save or help improve someone’s life – and the dynamic of the care team are told.
The Heart, originally written in French by Maylis de Kerangal, tells of the story of the 24 hours following a tragic accident leaving a child brain dead. His parents are faced with the decision of whether or not their son will become an organ donor. Recently translated by Sam Taylor – and reviewed by the New York Times – the book offers a rare glimpse into the organ donation process, from varying perspectives.
With a variety of pivotal moments and points of tension – both in the mind of the reader and between the characters – throughout the story, we’ve asked some folks at Penn Medicine and Gift of Life who are touched by transplant on a regular basis to shed even more light onto this process, and to discuss what it’s like to be in the throes of these delicate, emotional, and time-sensitive situations.
In the story, Cordélia Owl, an ICU nurse assigned to Simon Limbres case, addresses him in the first person, as if he is still alive and listening. “She greets Marianne and Sean with a brief smile, and then, concentrating fully, walks up to the bed. I’m going to take your temperature. She speaks to Simon. Révol freezes. Marianne and Sean stare at her in amazement. The young nurse turns her back to them, all right, that’s good, then checks his blood pressure and says I’m going to look at your catheter now to see if you’ve peed – she is so gentle, it is almost unbearable.”
This approach to the patient caused a rift between the nurse and the treating physician, as he thought it was providing a false sense of hope to the boy’s parents, who were trying to cope with the idea that while their son looks alive, he is only breathing and his heart is only beating because of the ventilator.
Working in the Neuro ICU, I am in this situation more often than most. Though a patient may have been pronounced brain dead, their skin is still warm, chest still rising rhythmically with each breath and they still have a heartbeat. This is often the most difficult for families.
Personally, I treat the deceased as I would with any patient – they are still a person; a sister; a husband; a child.
Most often I will offer the family alone time with the deceased, a time to sit with them and hold them, so that they can have their last moments alone together. However, we are cautious not to provide a false sense of hope to the family once their loved one has been pronounced.
There is a delicate line that needs to be walked in this situation, and I would say there is no one way to act or to handle an interaction like this – it is dependent on the nurse, and on the family. – Jessica M. Fuller, BSN RN CCRN NE-BC, Nurse Manager, Neurointensive Care Unit
The Coordinating Committee for Organ and Tissue Removal (Gift of Life equivalent)
As told in the book, Thomas Rémige, a nurse for the Coordinating Committee for Organ and Tissue Removal, gets the call from Dr. Pierre Révol, to inform him that he has a patient who may be a candidate for organ donation. It will be Rémige’s role to discuss organ donation with the parents. “He begins slowly, reminding them methodically of the context of the situation: I think you understand now that Simon’s brain is being destroyed; nevertheless, his organs continue to function; this is an unusual situation…I’m aware of how painful this is for you, but I have to broach a delicate subject...It sounds absolutely clear when he declares: We are in a context where it would be possible to consider the donation of Simon’s organs.”
A representative from Gift of Life, similar to the “Coordinating Committee for Organ and Tissue Removal” as referenced in the book, would be the ones to have conversations with deceased’s family about organ donation. Once the family fully understands the situation, and understands wholly that their loved one has died, the Gift of Life team begins.
Our transplant coordinators go through extensive training to learn how to get authorization for donation. But before we walk in the room, our first step is to determine medical suitability. This is one in close connection with the care team. Once that is established, we are introduced to the family of the deceased and ask them to tell us what they understand about the medical situation. This ensures they understand everything that has happened.
Typically, we will try that in the patient’s room to get the family to stop thinking about the medical situation and what’s unfolded, but rather to think about their loved one as a person. We’ll ask them to also to talk about how the patient lived their lives; were they generous; a parent or uncle; what did they do for work; were they a good neighbor; were they funny? We’ll talk about anything that will break the focus on the medical situation. The goal is to get the family to make a non-reactive decision.
People in shock need to hear the same information over, and over, and over – small piece of information repeatedly. Therefore, we review what’s happened many times before even asking about donation, to make sure the family is in the right frame of mind.
“If the deceased has already specified that he or she is an organ donor – i.e., on their license – we share that with the family as part of the conversation, and we discuss that their loved one had decided to give this gift as part of this open dialogue. These conversations can go on for a long time, a half day, a full day, or can be done in as little as five minutes – they are all so different, but the process is always very family-driven. – Amy Martiner, Hospital Development Coordinator at Gift of Life Donor Program
The Transplant Surgeon
Following an evaluation of the character Simon’s organs to determine which can be transplanted, and once the family has given their authorization, the Coordinating Committee for Organ and Tissue Removal identifies recipients based on an extensive matching process. If and when the recipient hospital(s) accept the organ(s) they’ll assemble an organ recovery team – transplant surgeon and assistant – who travel to the donor hospital to procure the organ to bring back to their patient(s). “She has prepared the equipment, arranged the tools and now she is quietly repeating to herself the order in which the organs will be removed, lips barely moving behind her mask: (1) the heart; (2) the lungs; (3) the liver; (4) the kidneys…the body is lying flat…leaving clear the thoracic cage and the abdomen… All right, here we go. Let’s get stated.”
This sets the stage for what is about to take place in the OR with several organ removal teams onsite to procure organs for their respective patients.
The reality of the donor organ recovery is that there are some aspects of the process that differ each time, and other aspects that are very standardized. The recovery operation generally occurs at a different hospital, the timing of when the recovery happens is coordinated by the organ procurement organization, and as a transplant surgeon we have minimal control over those aspects of the process.
These operations often take place at odd hours to fit the needs of the donor’s family, the donor hospital operating room availability, and the timing of several organ recovery teams. With all the moving parts, delays can occur, and the process at each hospital is a bit different. However, once the procurement operation starts, it is highly structured. Even with multiple teams involved, everyone knows what is to happen, in what order, and communication is generally fairly easy and straightforward.
The donor surgery is undertaken with the same precision, accuracy, and respect as the recipient transplant operation – they are the two halves of the process of transplantation.
As surgeons, we are aware that the donor and their family are giving a tremendous gift to help other people who they do not even know. This is obviously a foremost consideration in what we do, how we do it, and it gives urgency in our work to make sure that everything is done in just the right way, every time. – Matthew Levine, MD, PhD, an assistant professor of Transplant Surgery