I-Team special report: End of Life

For terminally-ill patients in California, June of 2016 marked a moment of enormous change. That was when the state passed the “End of Life Option Act;” a legal avenue for the sick to end their suffering. But even as the as the act was penned into law, the debate raged on around the controversial topic.

“My sister is an example of exactly what this law was intended to do,” said Kelly Davis.

Kelly shared her story with a state assembly committee in January. Her sister, Betsy, an artist who loved to travel, was diagnosed with ALS in 2013. She was among the first to use California’s End of Life option act.

“‘We had set-up a makeshift bed under a white canopy on a hillside next to her house. She took a combination of morphine and 2 other drugs and fell asleep as the sun was setting,” Kelly said.

In 2016, 191 Californians were prescribed life-ending medication. One hundred eleven of those 191 ended up using it. These numbers would seem to point to a law working as it was intended, but not everyone agrees with its efficacy.

Not everyone agrees with this assessment, however.

“They have created a maze of bureaucracy that people who are dying don’t have the strength to work their way through,” says Dr. Wayne McKinney.

McKinney is the founder of Well in the Desert, a local nonprofit that helps the homeless in Palm Springs. He suffers from bladder cancer and gets care in his living room. Right now, McKinney says he’s not in pain but he expects that to change.

“You better believe I’m going to be suffering when I die, when that’s spread,” McKinney said.

McKinney wants the end of life option — but he’s had trouble finding doctors willing to sign-off.

“Not all people agree with the California End of Life options act. Some people are very uncomfortable with that,” McKinney said.

Dr. Alan Williamson is the Chief Medical Officer at Eisenhower Health, which exercised its right under the law to “opt out.”

“The Hippocratic oath contains a line, specifically that says I will not give a medication, a lethal drug to a patient and I will not advise that act,” Williamson said.

“It’s a violation of the Hippocratic oath because you force them to endure what statistically is a prolonged and painful death” McKinney countered.

Other local hospitals have similar policies to Eisenhower, raising a question about access.

“It would have to be out of the valley,” said Joan Stucker, a retired nurse.

Stucker is a volunteer from “Compassion and Choices,” an organization that’s started an online petition hoping to get Eisenhower to change its position.

“Fortunately, the UC systems have come on board and are doing this for patients,” Stucker said.

Kaiser is also participating.

The law requires a doctor to find that the disease will “within reasonable medical judgment result in death within 6 months.”

John White asked Williamson, “How do you determine someone is six months terminal?”

“That’s a great question to which there is not a great answer. We can’t be certain what a patient’s prognosis is in any individual patient. Some patients that we expect to last several years pass away in a month or 2. Some patients, who we expect to live only months, live for a year or 2,” Williamson answered.

A point that McKinney concedes in his own case.

“Actually, I should have been dead a year ago, but somehow or another, I’m still here,” McKinney said.

While the debate continues, Kelly insists, for her sister, it was the right option.

“To allow a dying young woman to assert control over the chaos and uncertainty of a terminal illness and she turned death into a reason to celebrate,” Kelly said.

The California Department of Public Health will be putting out a new report soon on how many people used the End of Life option act in 2017.

Statement from Desert Regional Medical Center:

After careful consideration of what is best for our operations, we determined that aid-in-dying medication will not be ordered or administered in our Tenet hospitals. However, clinicians who receive such requests in our California hospitals may assist patients with identifying participating physician practices. This may include writing prescriptions for aid-in-dying drugs to be filled elsewhere.

We recognize that aid-in-dying decisions are highly sensitive and personal. We have created guidelines for our physicians on the process to be followed when requests come from patients. We respect the autonomy of individual physicians and their patients to make those decisions in their homes or in their independent offices outside the hospital.