Changing a State Law about Death and Dying

Until 2000, New York State’s laws about dying dated from the 1950s. The old laws reflected medicine and dying in the era before intensive care units. People died in a few days from an acute illness or the acute phase of a chronic one. Ethics and the law required that dying people be given hydration and nutrition. If dying people couldn’t take it by mouth, they needed to get it “artificially” by tube or vein.

But by the mid-1990s, this approach increased suffering of patients, of their families, and of their caregivers. Now patients frequently died slowly on a hospital ward or in an ICU. Artificial hydration and nutrition caused horrendous problems. ICU nurses and staff suffered and rebelled. If the patient could communicate what care s/he wanted and didn’t want, doctors would comply. If the patient could not communicate, there was a dilemma.

The Bioethics Committee of the New York State Medical Society debated the outdated laws in 1999. The 20 to 30 of us on the Committee met for six to eight hours a day in a large second floor conference room of the Society’s headquarters. The debate took several full-day meetings. The more it went on, the more acrimonious it became.  The more it went on, the more fixed each side’s position became.

The next year, 2000, the NY state government wanted the medical society’s guidance: should they update the law?  The Medical Society charged our committee to decide. A colleague of mine and I remembered the debate the year before. My colleague is a compassionate, humane physician, retired from academics but active in palliative care, end-of-life care and practical applications of medical ethics.

We double-checked. Yes, two-thirds of the committee, largely physicians and surgeons in academics, legal medicine, or institutes for studies of medical ethics, still did what they and the patient’s surrogate thought best, despite the existing law.

The other third of the committee were were conservative. Their leader in the arguments was the respected orthodox Jew who founded the Bioethics Committee decades before and continued to chair it. He practiced in an academic hospital, applying his orthodox Jewish ethics to medical situations. He was by nature a flexible debater. However, in 2000, illness turned him authoritarian, dogmatic, and rigid.

Other orthodox physicians on the committee sided with him. So did doctors and medical ethicists appointed to the committee by the Roman Catholic Archbishop of New York City.

The conservative group said they followed the law strictly. They believed the approach of  the other two-thirds was wrong, and could not possibly be enshrined in law.

My colleague and I asked the conservative group,

“OK, was there ever a time when a patient suffered so much you did what the others do?”

The leader pondered, hesitated, and finally answered, “Yes.”

“Could you give us examples?” we asked.

On one occasion, he cared for a dying man who could no longer speak or write, who had no surrogate, and who was being given food and hydration through a nasogastric tube. The man kept pulling the tube out and fiercely fought every attempt to put it back.

On another occasion, a dying woman was given liquid and dissolved food in a baby bottle. She repeatedly pulled the bottle from her mouth, threw it across the room and pinched her mouth closed to fight every attempt put the bottle back.

These fights lasted a few days with each patient. In each case, the orthodox physician decided that the patient didn’t want the “support.” He ordered the artificial hydration and nutrition stopped and allowed each patient to die peacefully.

“But there’s no way to turn a specific case into law. There’s no way to have the law sanction a change,” he declared.

My colleague and I could feel an underlying alignment in the Committee. I used tools of consciousness: neutral attention, empathy without being drawn into another’s emotions, supporting everyone’s creativity.

“So would everyone like to find a way out of this impasse? Would you all like to help the State government one way or the other?” I asked.

“Yes, if there’s a way to do it,” both sides said; “It’s our duty to respond to the state’s request.”

“What if we compromise?” I asked. “I’ll tell the state that most of the committee withholds artificial feeding and nutrition despite the current law. The minority only does so in specific cases, but the minority doesn’t believe this can ever be enshrined in law.”

Within an hour, everyone agreed. I testified to the state assembly and to the Governor’s office. The law was changed. Doctors whose dying patients cannot communicate can now base decisions on discussions with a surrogate and on the patient’s clear comfort and needs.

 

 

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