Whose Body?

In 1923, Dorothy L. Sayers published her first mystery featuring Lord Peter Wimsey, entitled Whose Body?  The concern was that an adult body, wearing only a pince-nez, had been found in someone’s bathtub. Whose body was this? Was it the body of a well-known financier, who had recently disappeared? Or was it the body of someone else? Whose deceased body was this?

Slightly less than one hundred years later, the nation that Sayers called home has answered that question. As of Spring, 2020, in England, and a few months later in Scotland, deceased adult bodies are the State’s for purposes of organ procurement – unless they are in an “excluded group” or have registered an “opt out” decision.  The public is currently being assured that organ procurement will not apply to all who die, but only to those whose organs would be in a “usable condition”—primarily those dying in intensive care units or accident and emergency departments.

The law of “deemed consent” applies to all but these excluded groups:

  • Those under the age of 18
  • People who lack the mental capacity to understand the new arrangements and take the necessary action
  • Visitors to England, and those not living here voluntarily
  • People who have lived in England for less than 12 months before their death

The language of “deemed consent” is the iron fist in a velvet glove. According to the National Health Services’ FAQ page:

 If you have not recorded a decision either way and you are not in an      excluded group, your family will be approached and asked if they have any information about your organ donation decision. If no information is available, it will be considered that you consent to donate your organs and your family would be expected to support this.

Although the language of donation is used, gifts are what is “given.” To call what is “taken” or “coerced” a gift is to contort language into misrepresentation.

It is a conundrum the government is trying to solve. Every day, some people needing organ transplants die. Every day, some people with potentially transplantable organs die. Inviting people to decide whether or not they want to be organ donors, and register that decision, seems a reasonable step. But deciding that the government has the right to take organs upon death is overreach. Human organs are not property. We do not “own” our organs. Whether one views human beings as ensouled bodies or embodied souls, human organs are integral to those bodies.  The government did not give the people organs; it is an injustice – to the language and the people – to take human organs and call such “donations.”

Ethics of Coordinating Organ Transplantation with Ventilator Cessation in Terminal ALS

The decision not to receive further medical care in the face of a terminal disease is one that is generally honored if made by a fully informed, competent adult in the absence of outside coercion. Decisions to discontinue life-assisting devices already in place with that terminal disease, such as ventilators, feeding tubes and cardiac pacemakers, begin to complicate the decision as the process moves beyond a single autonomous negative decision by the patient to refuse further care to one that often requires other individuals to positively act to accomplish the wishes of the patient in question. In addition, honest disagreements can result in determining whether removing life-assisting devices simply allows death to occur naturally or causes death directly. The timing of the decision to remove a life-assisting device can become more ethically complicated when the individual with the terminal disease wishes to donate his or her organs.

Such was the case with Dave Adox, when at age 42, he was diagnosed with ALS or Lou Gehrig’s disease, a terminal neuromuscular disease that causes progressive muscular weakness resulting in death, usually by respiratory failure, in 2 to 5 years. Within 6 months he was quadriplegic and completely dependent upon his family for all care. He eventually required a ventilator and was able to communicate only by eye movements. By age 44, his eye movements were becoming limited, making it difficult to communicate. He decided that he did not wish to continue to use the ventilator to prolong his life if he could no longer communicate. He had the support of his family and physicians. He had one other goal prior to his death – He wanted to donate his organs.

The problem was that Dave Adox would have to be admitted to a hospital to be able to donate his organs immediately after he turned off his ventilator. He received the support of his treating physician, the local hospital’s palliative care team and the local hospital’s ethics committee. He ran into a roadblock with the hospital’s attorneys, who argued that the process was uncomfortably close to assisted suicide. Within weeks, Mr. Adox was able to find another hospital that permitted his admission to their palliative care floor, assisted with the organ donation process, and allowed him to turn off his ventilator.

Ignoring the organ donation issue for the moment, Mr. Adox’s decision to turn off his ventilator in the face of his irreversibly deteriorating neuromuscular condition seems reasonable to me. He was making an informed, uncoerced decision to remove his ventilator as his worsening eye movements threatened his ability to communicate, a situation he considered too burdensome to warrant continued use of the ventilator. The use of a ventilator in the treatment of ALS is never mandatory. Elective use of a ventilator should always include the option to discontinue its use when an individual determines that its further use creates a burden they no longer wish to bear. Continued use of the ventilator in Mr. Adox’s case would not have prevented further deterioration of his ALS. In fact, continued use of the ventilator would likely have allowed him to live long enough to become “locked-in”, a condition where a person is alive, alert and aware, but unable to meaningfully communicate that awareness or one’s future needs to the outside world. With the impending loss of eye movements, Mr. Adox was approaching the “locked-in” state. Discontinuing the ventilator allowed the ALS-induced muscular weakness to cause his natural death via respiratory failure.

I believe the foregoing to be a distinctly different category from assisted suicide where the individual requires the addition of medication to suppress his breathing or terminate his heart rhythm to cause death rather than the death resulting from the disease process directly. That is, the process of the assisted suicide is the proximate cause of death, not the background disease. I appreciate that others may view having ALS at any stage as a burden too much to bear but I am unwilling to act to cause their death prematurely distinct from the disease process itself (See LINK for current study of ALS physicians and their views on assisted suicide – article requires subscription).

If you agree with me that Mr. Adox ought to be able to decide that he had reached a point that he wished to turn off his ventilator, does his decision to donate his organs change this situation to assisted suicide, as was the concern of the local hospital’s legal team? I do not believe it does. He was not turning off his ventilator “just so” he could donate his organs but rather because he had reached a point where continued ventilator use was a burden he no longer wished to bear. The organ donation was not the primary intent of discontinuing the ventilator. I view this in a manner similar to the intention of using pain medication in terminal cancer care: the intention of palliative medication is to provide pain relief during the dying process not cause the dying process, though it can. The intention of discontinuing the ventilator is to allow ALS to cause death naturally not provide organs for transplantation, though it can.

Should it?

The procurement of organs for transplantation: China vs. the WMA

Can a convict sentenced to death give truly free and informed consent to the harvesting of his or her organs after execution?

There is great difficulty obtaining organs for transplant in China. Much of this is blamed on cultural factors, although suspicion of corruption in the medical profession is also a significant reason. Whatever the reasons, between 2003 and 2009 there were only 130 voluntary organ donations in all of China. Yet in 2006, there were 11,000 organ transplants performed.

So where are all of these organs that are not voluntary donations coming from? Answer: executed prisoners. To its credit, China does try to make sure that prisoners give informed consent. According to Bing-Yo Shi MD and Li-Ping Chen PhD, writing in Wednesday’s JAMA, “If a sentenced convict [in China] would like to donate his organs, the convict and his family must submit an official application and sign an informed consent statement with a lawyer present. Before execution, the convict is asked to confirm his organ donation again, and if consent is reneged, organ procurement is explicitly prohibited.”

However, the World Medical Association (WMA) in its Statement on Human Organ Donation and Transplantation explicitly states that “Because prisoners and other individuals in custody are not in a position to give consent freely and can be subject to coercion, their organs must not be used for transplantation except for members of their immediate family.” (Section F par. 4) In a 2005 resolution the WMA addressed China specifically, stating unequivocally that “The WMA demands that China immediately cease the practice of using prisoners as organ donors.”

In a society such as China’s with such strong biases against organ donation, what are we to make of this large number of sentenced convicts apparently consenting to donation? Are they simply the most altruistic segment of the Chinese population? In the absence of another explanation, one must wonder whether the fact of imminent execution itself is somehow a form of coercion, an external constraint on behavior. In the absence of another explanation, one must wonder whether China or the WMA is right:

Can a convict sentenced to death give truly free and informed consent to the harvesting of his or her organs after execution?

 

(Information for this post came from the letters, “Organ Transplantation and Regulation in China,” and its reply, published on pages 1863-4 of the November 2nd issue of JAMA: The Journal of the American Medical Association, which were in response to the article “Regulation of Organ Transplantation in China: Difficult Exploration and Slow Advance,” by Shi and Chen, published on pages 434-5 of the July 27th issue.)