Last year, in the US, more than 48,000 organs were transplanted. This life-saving procedure is made possible by the generous donation of thousands of Americans who have registered to give their organs upon death or who have been identified as a good match for a friend or loved one, offering a living-donor gift. As a result, thousands of Americans find new life and liberation from dialysis machines or heart pumps. The altruism of donors is inspiring.

But all of this comes at a cost, literally (the cost of a kidney transplant is around $450,000) as well as mentally, physically, psychologically, and ethically. As with most things in this complicated life, there is more to the story.

It would seem it’s as simple as checking a box when you go to get your driver’s license. “Would you like to be an organ donor?” they ask. After doing a quick mental calculation of how useless our organs are to us upon our death, and often feeling invincible and so far removed from the prospect of our own death, many of us quickly reply, “Sure”. Check the box. Get our driver’s license. Go on our way.

But it is here, the entry point to the entire transplant system, where I posit the trouble begins. Do you understand the implications of saying you will donate upon your death? When you check that box, are you aware that even if your family objects to the donation of your organs upon your death, their wishes will not be honored? Once you are a registered organ donor, the local organ donation procurement organization (OPO-there are over 50 such organizations in the US) claims legal rights to your organs via the concept of first-person authorization. Did you know that once you are dead, it can take 24-72 hours to complete all of the testing required to match your organs with a recipient, all the while prolonging the grieving process for your family? Did you know there are multiple pathways to complete the donation process? Many patients are declared legally brain dead, and then the process begins to find recipients for the donated organs. But there are alternative ways to harvest organs after death, including donation after circulatory death (DCD), where, before you are declared dead, but have a grave prognosis, your family can consent to the donation of your organs if you die rapidly after life support machines are removed. In this case, you are brought to an operating room, the breathing tube is removed, and all medications are stopped as you progress to death. If it happens quickly enough, usually 60-90 minutes, then you are declared dead, and the organ procurement teams begin the operation to remove your organs. If you don’t die in the required time frame, you are made comfortable and allowed to pass away through a process like hospice over a period of the next several hours or days.

Did you know all of this when you checked the box at the DMV? I bet you didn’t.

If you didn’t, then you were not given informed consent. Informed consent is the simple process you may have gone through before any procedure (scope, outpatient surgery, major surgery, chemotherapy, etc) in which a healthcare provider explains to you three key things: risks, benefits, and alternatives. In the hospital, as a surgeon, when I take a patient through the informed consent process (which usually takes less than 5 minutes), I explain the procedure and why I am recommending it (how I believe it will help), any unexpected things that could happen (risks, side effects, complications), and what I could offer as an alternative (sometimes no intervention at all and thereby accepting the consequeses of leaving whatever is ailing you untreated, or an alternative that could be riskier or be expected to be less efficacious). It is unethical for me to perform any procedure, even small procedures such as removing a tiny skin lesion or placing sutures in a deep cut, without documenting the informed consent process. Informed consent is the bedrock of collaborative and ethical medical care. And while your family can provide informed consent for you at the time of your death (or near/anticipated death) for you to become an organ donor, the check box at the DMV is the binding legal agreement you make with the OPO to give up your organs, and your family has no authority to reverse it.

As a critical care physician, it is quite common for me to be the surgeon who navigates the process of informing the family of death or a deeply concerning prognosis, in which I anticipate recovery to be small or not possible at all. But I am not, and ethically cannot be, the same physician who helps your family navigate the donation process once we reach that point. It makes sense. My oath is to treat the patient, to advocate for them, to root for their recovery, to intervene for improvement, not to aspire to procure their organs. So a different team (the OPO) is introduced to families when organ donation is being considered or mandated by first-person authorization. But this isn’t always a smooth process.

I have witnessed distraught families escorted from the ICU by security guards as they object to organ donation, but unbeknownst to them, their loved one checked that box at the DMV. I have seen families come to peace about impending death and are ready for me to turn off machines so they can say good bye to their loved but, I cannot proceed through that process without first allowing designanted nursing staff in the ICU to call the OPO to inform them they have an opportunity to “approach” the family about donation. (This is legally required; there are stiff fines for hospitals that ignore the law requiring us to notify OPO of impending deaths) Stalling the family’s grieving process to allow OPO staff to drive in from home to the hospital is an excruciating and confusing process for families. I can’t talk about donation, all I can say is “There is one more team you will need to talk to before we turn off medications and machines and allow your loved one to pass away”.

Ironically, though I cannot ethically discuss donation with a patient and/or family, I can, and have been asked to be, the physician who waits in the operating room, watching the minutes tick down on the donation clock of 60-90 minutes (depending on which organs are being procured), so that I can declare death and give the procurement team the green light to come in and begin. While I understand and accept that some physicians find this role in the donation process an honor to the wishes of the donor and the recipient(s), I have found it heart-wrenching, and after one experience doing this, I have since recused myself from this process. I simply can’t bring myself to flip the switch from hoping beyond all hope that my patient pulls through whatever made their prognosis so grim, to hoping they die fast enough to be a donor.

Medicine is complicated. Death is devastating. Grief is multifaceted. And in America, we die poorly. We fight when we should make peace with our humanity and impending death; we give false hope in the face of clear signs that things will not get better; we beg our God for the miracle of healing for our loved one instead of the gift of peace that passes all understanding upon their loss.

Organ donation can be a beautiful gift, both for the donor’s family and the recipient(s). But there is a long and difficult road to get there. And I just believe that we should all have a little more informed consent about it all.

PS: For the record, while I have removed myself from the organ donor registration process through the DMV, and have counseled my family to do the same, I have had several clear and detailed conversations with my husband, children, parents, and brother about organ donation. I have made it clear that if they wish to donate my organs or tissues upon my death, I am totally fine with that. I just didn’t want the state to make that decision for them. I have been informed. I have made my decision after reviewing all of the risks, benefits, and alternatives. Hope you can too.

Disclaimer: My viewpoints are not necessarily reflective of my employer, or any local, regional or national organization that I belong to. As a matter of fact, I pretty much just speak for myself. Please keep that in mind.