This past March, The Washington Post wrote this article about the ethics of Donation after Cardiac Death (DCD). It’s a topic that’s getting more and more attention. As the article points out, in 2006 there were 605 DCD donors, more than double the number from 2003. That’s out of 8,022 total donors for 2006, according to a HRSA news release. I know from my own practice that it has created some controversy among the doctors we work with, but not as much as the WP article would make out. However, many people, even health care providers, have misconceptions about organ donation and brain death making discussion about DCD even more confusing.

So what is Donation after Cardiac Death? DCD is a new way of doing something old. The first successful kidney transplant was done using a live donor and identical twin of the recipient. Unfortunately, we don’t all have a handy identical twin. The first transplants not from living donors were from cadavers. If someone died from cardiac arrest in a transplant center, they would approach the family about donation for one of their patients. Soon, regional alliances formed to share organs between hospitals. Ultimately this led to UNOS, the United Network for Organ Sharing.

In 1968, Harvard Medical School came up with a definition of brain death. Brain death became legally defined and donors started coming from patients who were brain dead but whose bodies were still getting perfused and oxygenated by means of mechanical ventilation. This led to better outcomes for the recipients and more organs recovered and transplanted. Still, less than 1% of all deaths are brain deaths and medically suitable for donation. As the waiting list grows longer, other options are being sought.

Some patients are neurologically devastated but, for a variety of reasons, will never become brain dead. They may have only a respiratory drive, but have lost all other neurologic reflexes. Patients may already have their wishes spelled out in an advance directive. In other cases, the family has to make the best decision they can if the situation is medically futile. All hope of meaningful recovery is gone but their heart will go on as long as they are on mechanical ventilation. Let’s be clear. Patients who are brain dead will not have a heart beat indefinitely. No matter how much medication they receive and despite the ventilator, if no one’s driving the car, it will eventually crash.

After the family makes the decision to withdraw care (or the patient themself, in cases of an advance directive), they are approached about organ donation. After they decide to withdraw. This is a key factor. People who have a stake in the outcome of the transplant should not be influencing the families decision to withdraw care or be involved in the extubation. This is different from cases of brain death where it is not the family’s decision to withdraw care. In those circumstances, the patient is legally dead and the hospital does not need permission to extubate after pronouncement.

One of the criticisms of DCD is that the patient’s right to quality end of life care trumps organ donation. There is no reason to think that these goals are mutually exclusive. DCD’s can be done compassionately, even in an OR setting. The family can be present, music played, the lights dimmed and an atmosphere of dignity maintained. I have seen a case where a family had decided to withdraw care for their five year old who was neurologically devastated but not brain dead. With music playing softly, mom held the child in her arms and sang to her. Comfort measures were taken with a sedative and narcotic, per palliative care. When her heart stopped, I gently said to mom, “It’s time.” The course of events had already been explained to the family, so they were prepared and someone stayed with them to provide emotional support before during and after. The child was able to donate her kidneys.

Counter that to a withdrawal of care where organ donation was not involved. No palliative care consult was ordered. Pastoral care was called as an afterthought. No sedative or narcotic drips were ordered. When they went to extubate, the family was asked to leave the room. From behind the curtain came sounds of ragged breathing and suctioning, with the nurse scurrying for meds to give IV push. The family was scared and afraid.

My point is that end of life care can be done well or not well, with or without organ donation entering into it. For a great read on DCD, go to Transplant Headquarters. Be sure to read the comments from Nancy Erhard, who was quoted in the above mentioned Post article. She’s the mom of a young man who was a DCD donor. It’s worth checking out.