Finding Alignment under Conflict to Change a Law

What happens if someone who is dying no longer wants food or water and can’t communicate this? What if the food or water is causing pain, breakdown of tissues, and increased suffering?

In the mid 1990’s, medical ethics emphasized patient choice and autonomy for quality of life and care in the last months of life: a patient should have the quality and the care s/he wanted. New York State’s law dated back several decades, to a time before ICU care or the modern conception of end-of-life care. It forbade removal of artificial hydration and nutrition.

What if the patient didn’t want them or the treatments were harmful? If a patient couldn’t communicate, they stayed – no matter prior conversations with doctors or with the medical proxy set up by a newer NY State law. Some hospitals and nursing homes felt the law allowed them or required them to impose their religious and moral beliefs on all patients in their care.

The bioethics committee of the state medical society debated the issue for two or three meetings. The committee consisted of 30 physicians, from academia, private practice; researchers on medical ethics, lawyers, administrators, and religious leaders. A few members of conservative religious and political backgrounds argued adamantly that the law could not be changed. Most of the liberal group couldn’t see a reason not to change it.

A year later, the state legislature and the Governor decided to revisit the law. They needed a decision of this committee: yes or no? We re-opened the debate. Again the conservative members dug in their heels. Again, the liberal majority couldn’t understand not updating the law.

When I explored, we all saw that each of the liberal members had withheld food and water when they thought that was the correct thing to do, ethically and medically. Had there ever been individual circumstances when the conservative physicians had withheld tube feedings or intravenous fluid from a particular patient who was dying?

Yes, they had often taken subtle cues from individual patients and then ceased artificial support. For example, a elderly man might tug at his nasogastric tube angrily to try to pull it out, over and over. Clearly he didn’t want it anymore; it was removed. An elderly woman consistently pushed away the baby-bottle full of Ensure given to her to suckle. Again, the sign was unmistakable and feeding was stopped.

The group in the minority could not imagine such subtleties being enshrined in law. That was the real issue.

I got unanimous consent from the committee to state this entire position as our consensus to the government: “a minority did withhold food and water in individual cases but believed the reasons too subtle to be enshrined in law; the majority thought the law should be changed.”

This I testified about in detail before the legislature and the Governor’s staff, being compassionate and truthful to both sides. The law was changed to allow patients and their proxies to withhold unwanted or harmful care, no matter the ethics or religion of the institution they were in.

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