“When pleasantly simple myths are discarded, the result is a mess. Endless problems need to be addressed.”
—Ian Hacking, The Social Construction of What?
This week, I got to attend an expert panel on organ donation. Many of these folks speak with families whose loved ones have just passed every day.
So here’s a case.
I actually wanna reproduce it in full so you can see the kind of case we’re considering. It’s pretty detailed and intense:
CF is a 23-year-old recent college graduate who is eagerly awaiting a job opportunity. In the interim, he has been working as a delivery driver to support himself and pay off his student loans. As the oldest of three siblings (ages 21 and 19), CF is known for his vibrant personality, love for the outdoors, and active lifestyle. He played on his college volleyball team and had a passion for dancing.
Just a young kid.
Tragically, CF was involved in a severe motor vehicle accident while on duty as a delivery driver. A driver ran a red light and collided with CF’s vehicle, resulting in significant trauma. Emergency Medical Technicians (EMTs) arrived on the scene to find CF in asystolic cardiac arrest. Due to the extensive damage to his vehicle, the fire department had to extricate him by cutting open the car doors, leading to a prolonged extrication process. CF experienced a total downtime of 45 minutes during which he was intubated on the scene to secure his airway.
CF was transported to the Emergency Department (ED), where the medical team stabilized him hemodynamically before transferring him to the Neurologic Critical Care Unit (NCCU). A head CT scan revealed a significant midline shift and severe traumatic brain injury (TBI). To prevent secondary brain injury, the NCCU team induced a coma, but after two weeks, when sedation was stopped, CF showed no purposeful movements or responses to stimuli. Neurological assessments indicated a very low level of brain activity, with imaging confirming extensive brain damage. He remains fully dependent on life-sustaining treatments, including mechanical ventilation and medications, with a grave prognosis for meaningful recovery.
What a tragedy.
The medical team, consisting of neurologists, neurosurgeons, and critical care specialists, have closely monitored his condition. After thorough evaluations, the medical team has concluded that Mr. CF’s neurological injuries are severe and irreversible. They have determined that further aggressive medical interventions, including life-sustaining treatments, would be unlikely to lead to any improvement in his condition. The clinicians feel that his injuries are incompatible with a meaningful quality of life. The medical team met with the family and initiated goals of care conversations, including the possibility of compassionate extubation as part of end-of-life care options.
This is a very difficult conversation to have.
At the meeting, a large family (including parents, grandparents, uncles, aunts, siblings, cousins, and friends) was present, with the parents serving as the legally authorized decision-makers. His family appears to understand the grave prognosis, and knowing the patient’s preferences, lifestyle, and values, they opt to withdraw life-sustaining treatments. They rely on their faith to make this decision, and they do not wish their loved one to be in pain or suffering.
Here the family arrives at some kind of reckoning with CF’s passing.
Per the Protocols, Infinite Legacy (IL), the organ procurement organization (OPO), is introduced to the family to discuss organ donation as an end-of-life option. The Family Services Coordinator (FSC) from IL meets with the family and approaches them for organ donation. The FSC discloses to the family that the patient was a designated donor as per his driver’s license and it serves as the first person authorization (FPA). It is further explained that it is the time for family to honor patient’s expressed wishes through FPA, and the OPO does not require any consent.
Every acronym in the world crawls out of the walls to announce that this is not a negotiation. We are now legally required to follow the patient’s expressed wishes. Thank you for your cooperation.
The family is in shock. His father feels it is his fault that he had influenced his son to say yes to the organ donation question at MVA and registered him as donor. The family’s reaction, their opposition to donation after circulatory death (DCD) stems from their understanding of organ donation occurring only after brain death.
Oh wait a minute, when does he count as legally dead? I bet the legal definition papers over some very contentious and thorny ethical issues that this family is going to have to experience close-up.
While they were generally supportive of organ donation, they assumed it would happen postmortem—meaning after a clear declaration of death, not while the patient is still being supported by life-sustaining treatments. This distinction has caused confusion and distress, especially as the family now faces the reality of organ donation while their loved one is still exhibiting bodily signs of life, such as breathing over the ventilator, pupillary movements, slight coughing, and withdrawal to pain.
What a nightmare.
This raises profound religious and ethical dilemmas for the family, as they perceive their decision to withdraw life-sustaining treatments as potentially terminating life in order to give life to someone else. Furthermore, it forces them to question what true comfort, peace, and meaningful closure for their son would look like in this situation. They also believed that the patient’s designation would only take effect upon or after death and they feel that their legal rights have been undermined. Additionally, they are distraught with the fact that it might take 3 to 4 days for compassionate extubation to occur in an operating room with limited number of family members present. Moreover, the patient’s bodily functions will be supported during that time, and the family is petrified that this will prolong suffering of pain for the patient and family.”
What a case.
So if you don’t know, yes of course our legal definition of death is a bit weird. Per the influential Uniform Declaration of Death Act, you’re legally dead once circulatory death is declared, or once brain death is declared.
Circulatory death was the traditional criterion. The word “brain death” has only been with us since 1968, or maybe 1959, but anyway measuring brain activity requires clearing a much higher technological bar than checking for a pulse.
Many folks think only brain death is “real” death, but not everyone’s on the same page. (By the way, do you think teleporting counts as suicide?)
From a more practical perspective, it’s difficult to bring brain scanning technology to the scene of every death. So this weird either-or in the law is a pragmatic compromise with reality. If your circulatory (and technically, respiratory system) are done, you’re dead. OR, if your brain (and technically, brain stem) are done, you’re dead. But you don’t need to declare both. Either one will do.
But as we saw in the case, brain death and circulatory death can look and feel pretty different. Even after circulatory death, the brain can still be up and kicking. And circulation can even be restarted by artificial supports to help perfuse organs and improve their quality and viability for transplant!
(Yep, there’s a whole literature arguing whether this practice amounts to exploiting the legal definition of death to get more and better organs.)
Lots of folks have no idea that the legal definition of death in their jurisdiction might include this weird either/or, which is what allows for all these hijinks. They don’t know weird cases like this are even possible!
So my question to the panel was very simple:
How could CF have given informed consent to this procedure?
I just got a new driver’s license last month, and I remember seeing this checkbox to become an organ donor. The lady at the counter tapped the monitor and said, “Here’s another screen for you to fill out,” and I said, “Cool.”
But the screen didn’t give any summary or history of the legal definition of death, or any indication that I might be putting myself and my family in these weird sorts of situations.
Do I think brain death and circulatory death are equally good? Or maybe only brain death’s the one that really counts? And what do I think of teleportation, anyway?
At the Maryland Motor Vehicle Administration, I was not given any opportunity to ponder these questions.
So how is that informed consent?
When we see CF today under complex and unusual circumstances like these, how could their checking yes—maybe they were 16 years old and getting their learner’s permit, now they’re on a donor list for life unless they remove themselves—how could that checked box indicate informed consent to this unforeseen procedure?
I got two non-answers:
“I’d love to pass this question to my colleague, but as I’ve been saying for thirty-one years, the government needs to do a better job educating people about the realities of organ donation.”
“I’d love to pass this question to my colleague, and not to be flippant, but every decision we face is made under incomplete information.”
These panelists’ jobs are a lot harder than mine. (I made sure of it.) But come on now.
These are disheartening, inquiry-terminating answers.
This is just value complacency again!
And I get it—legally there’s a bright line, where the person has checked a box (at some point, under some circumstances) indicating their informed consent. That procedural clarity on what to do matters when organ quality and availability are at stake.
But when we reach unclear cases, we have choices. And here’s where we can feel the cost of procedural rigidity.
We don’t have to insist:
Well, they were informed!
Or well, they should have been informed better!
Or well, we’re never perfectly informed anyhow!
Why can’t we step back long enough to go, maybe they weren’t adequately informed? Why can’t we recognize that this legal checkbox is a convenient legal fiction, just another pleasantly simple truth that might well come unravelled in cases like these?
Of course, that would turn a binary legal indicator (the checkbox) into a site of continual renegotiation. We would be taking something that seemed clear and legible and going, wait a minute—reality is a bit more complicated than that! And the result would be a mess.
The appearance of clarity is a hard-won institutional achievement that allows us to move forward under difficult conditions with confidence in how our shared procedures function. After all, we have the best possible indication of what the patient themselves thought about organ donation. Now, let’s act on it so we can respect their gift. We are, after all, legally obligated to do so.
I understand this line of reasoning, and I am pro-organ donation myself. But, I really despise the way we choose to treat informed consent as an all-or-nothing checkbox just to keep things clean and legible for legal purposes. Bring on the mess—we’re already in it.
I hope it makes sense why I see that procedural rigidity as inquiry-terminating bullshit that fetishizes procedure at the expense of what really matters. Now I feel like I have to read Seeing Like a State all over again.
Okay, thanks for listening, I’m sure I’ll throw a grenade into another Q&A next week.
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