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?

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