I used to think that because I registered to be an organ donor that I would be an organ donor when I die. But the more I learn about deceased donation, I find that may not be true.
Two years ago I was standing in line at the Guinness World Record event for the most living organ donors in one place held in Chicago (I am a living kidney donor). Many people came up and asked what we were doing. After an explanation, they said, “I’m an organ donor.” Then when asked what they donated, they responded: “I’m registered on my driver’s license.” I thought, that doesn’t make you an organ donor …
I wanted to know how many people were registered to donate their organs. In 2018, 58% of the U.S. population were registered to be organ donors. That is 155 million registered donors! (Donate Life America Donor Designation Report update released October 2018).
Then I wanted to know how many people were on the organ transplant waiting list. There were 113 thousand people on the transplant waiting list in December 2019. You would think there would be enough donors for these people. What is the problem?
The Organ Donation Problem
Less than 1% of those registered to be an organ donor at death will actually donate. There were over 155 million registered, over 2 million people died, and yet only 10 thousand donated upon death in 2018. We have a false belief that registering to be an organ donor means we are an organ donor. But that is not likely.
What are the reasons why you may (or may not) donate when you die?
There are a few very specific ways you have to die in order to donate your organs. First, you must be in a hospital with doctors and nurses caring for you to make this determination. You will have either Brain Death or Circulatory Death to be an organ donor. You must be young enough (under 75). You must be deemed a healthy weight.
Healthy weight is generally considered a bodyweight of 11 pounds or greater, and body mass index (BMI) of around 30 or less.
Brain Death is “Irreversible cessation of cerebral and brain stem function; characterized by absence of electrical activity in the brain, blood flow to the brain, and brain function as determined by clinical assessment of responses. A brain dead person is dead, although his or her cardiopulmonary functioning may be artificially maintained for some time.”
Circulatory Death is when the “heart has irreversibly stopped beating, previously referred to as non-heart-beating or asystolic donation.”
In both “death” situations, you will not be awake or talking. You will be on a ventilator with no chance of recovery.
There are other reasons that would exclude you from deceased donation:
- Organs are deemed not medically suitable for transplant
- Active infections (with a specific diagnosis)
- Aplastic anemia, agranulocytosis
- Current malignant neoplasms, except non-melanoma skin cancers such as basal cell and squamous cell cancer and primary CNS tumors without evident metastatic disease
- Previous malignant neoplasms with current evident metastatic disease
- History of melanoma
- Hematologic malignancies: leukemia, Hodgkin’s disease, lymphoma, multiple myeloma
- Active fungal, parasitic, viral, or bacterial meningitis or encephalitis
- No discernible cause of death
What about family consent?
Many people ask me if the family must consent to donate organs, even if you are registered to be an organ donor. Maybe. Maybe not.
If you fit the criteria for deceased donation upon your death, the hospital is required to tell your family and ask to donate your organs. But the hospital still has the legal authority to proceed with organ procurement without the consent of your family.
Essentially, the decision to donate is truly up to the hospital. They can do what your family wants, or what your registration says.
I have talked to my local deceased donor registration staff, and they do not take organs if the family does not consent because they do not want to be involved in a lawsuit. They are not alone; in the past 5 years, 35% of hospitals did not take organs if the family objected.
How do you want to die?
Most people want to die at home, in their sleep, after living a long life. If you want to live longer than 75 and die in the comfort of your own home, you won’t donate organs when you die.
Registering to be a deceased organ donor seems to be for traumatic, unexpected deaths. Yet we think we will donate when we die, as long as we register.
- You are not an organ donor until you actually donate an organ
- There is less than 1% chance you will donate even if you are registered
- You must die in a certain “right way” to donate organs
- Talk to your family about your desire to donate so they will honor your wishes if you die in the “right way”
- Ask your family members if they want to be organ donors, in case they die in the “right way” and you have to make that decision for them
Donate Life America Donor Designation Report update released October 2018
Would you like more information about Living Kidney Donation, contact us at info@MyKDC.org
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Glenna Frey, APRN-CNS, is a nephrology nurse who donated her kidney in April 2017 to a stranger.
Amanda Frey, M.A., LMFT, LPC, is a Marriage & Family Therapist living with kidney disease.
Together, they co-founded Kidney Donor Conversations in 2018 to provide education about Living Kidney Donation.