With six months to live, Charles Scott found it harder every day to breathe. He was dying from emphysema, and the last few months would be much worse. Already, just walking from his bed to the bathroom and back was laborious. He could not take two steps without getting out of breath. Weak with exhaustion, he had no quality of life. He wished to die.
Under Oregon's Death With Dignity Act, he had a right to end his life by taking a medication that would stop his heart and breathing within minutes. But his brother did not want him to take his life. W. Richard (Dick) Scott, a sociologist and Stanford University professor emeritus, and his wife, Joy, spent long weekends in Oregon with Charles, and they tried to convince him that he still had things to live for. But over time, the couple began to accept his decision, and they agreed to help him die.
The Scotts' experience with Oregon's law, now 18 years old, offers a glimpse into what Californians may face as the state's new End of Life Option Act goes into effect on June 9. Chiefly, Dick Scott said, assistance with dying was neither readily available nor convenient for his brother.
Physicians don't want to be viewed as deliverers of death; health organizations may refuse to facilitate dying on religious or moral grounds; and some medical professionals and hospice organizations consider writing a prescription to end a life, even for a terminally ill patient, to be unethical.
In some cases, there may also be a catch-22. By the time a patient has the prescription in hand, the person may be too ill to self-administer the medication, a requirement under the law, Scott said.
Despite the fact that, by 2011, the Oregon law had been in effect 13 years, there was no clear path of referrals leading to physicians who would provide the medication, no easy trip to a pharmacy to fill it, and a resistant hospice system that did not want to be involved, Scott said. The entire process ended up taking six months.
Under both Oregon and California laws, two physicians must agree that the patient is terminally ill. One of the two must write the prescription. The patient must make three requests to the doctor: two orally 15 days apart and one in writing on a specific form.
But finding those physicians proved daunting. The Medford area, where his brother lived, is dominated by the Catholic health care system, which does not take part in aid in dying, he said.
A ban codified in the 2009 Ethical and Religious Directives for Catholic Health Care Services, issued by the United States Conference of Catholic Bishops, states in part: "Catholic health care institutions may never condone or participate in euthanasia or assisted suicide in any way."
So Scott and his brother faced multiple rejections -- and several physicians changed their minds, he said.
The Scotts turned to Compassion & Choices, an advocacy group with a network of willing physicians. The Scotts located two: One was 17 miles north of Medford in White City; the other was 13 miles to the south in Ashland, and Charles Scott had to travel to meet with each one.
It took another 10 days to find a pharmacist willing to fill the prescription, and even that was treated like a cloak-and-dagger operation.
"We went into the back room," Dick Scott said, hidden away from other people.
There, the pharmacist delivered the instructions: exactly 100 capsules, emptied into a glass. The medicine would be bitter; a flavored beverage was recommended. The glass should be just half full, and his brother should drink it down all at once.
But Charles Scott faced another uncertainty. He was not sure if he would be allowed to take the medicine at his senior-care residence.
"We had hospice there working with him. All of the hospice people were provided by the Providence system (Providence Health & Services, a nonprofit Catholic network). We had to persuade them to be our allies," Dick Scott said. The hospice staff resisted, but the Scotts eventually prevailed.
"One nurse finally said, 'I will sit in the parking lot in my car, and you can tell me when it is over,'" he said. She would not assist if anything went wrong.
On the day that his brother chose to die, Scott carefully opened each of the 100 capsules, emptying them into a glass.
"It took a half hour. It was just one more damned roadblock," he said.
His brother took the glass, drinking all of the liquid. His breathing slowed.
"He was not in any way ambivalent," Scott recalled. "It was a very quiet death. It took four minutes."
As he has told his story to friends, acquaintances, family and audiences, what has surprised Scott most has been the number of people who want to learn more about this option.
He has not been criticized.
"No one said, 'You shouldn't have done it,'" he said.
As for his own reaction, mostly, Scott felt relief and gratitude that his brother was finally able to get out of his suffering, he said. And the experience in part caused the Scotts to support California's law. The couple attended a state legislature committee session in Sacramento regarding the law, and Scott is on the Avenidas Village Expanding Choices Task Force, which organized a panel discussion on March 12 with local medical professionals.
He does not expect a rush of dying people to overwhelm California's medical establishment when the new law takes effect, a fact born out in Oregon's numbers. In that state, 1,500 people have received prescriptions in 18 years. Of those, one-third to one-half chose not to use the medication, according to Compassion & Choices.
Scott said the law makes it difficult for anyone to get a prescription because it is up to the individual medical professional to participate.
"The way it's written, it means people have to have a very active agent to assist them. It's not the kind of thing that a lot of people at the end of life, who don't have access to that kind of dedicated and informed advocate, can do on their own.
"It was hard, hard work. It was daunting. Just because it's legal doesn't mean it's easy," he said.
Local health care professionals are now deciding their aid-in-dying policies.
Sutter Health, which owns Palo Alto Medical Foundation, will support patients who choose to end their lives, said Sutter Chief Medical Officer Dr. Stephen Lockhart.
"Sutter Health is supportive of helping our patients explore all of their end-of-life options, which can include palliative care, home health and hospice, and our Advanced Illness Management program. For qualified terminally ill patients, the End of Life Option Act provides an additional choice, and our organization supports an open dialogue with these patients as they make end-of-life decisions," he said in a statement.
But "just like we respect the rights of our patients to make this decision, we also respect the rights of our physicians and caregivers who for personal, religious or other reasons choose not to participate. In those instances where a patient's primary care physician chooses not to participate, Sutter Health will assist the patient in finding another physician."
Few topics are more intensely personal than end-of-life care, Lockhart said.
"We conduct a thorough evaluation of terminally ill patients to understand the factors driving their decision and inform them of all options for end-of-life care. There are specific steps required by state law that Sutter Health must follow if a patient requests end-of-life medication," he said. "Our goal is to make sure patients are completely informed about all options available to them."
Stanford Health Care is expected to have a policy for its physicians and clinics by this week, which will be in compliance with the law. The hospital is developing programs and other information about the law to educate patients, said Erin L. Weinstein, director of media relations.
Palo Alto's senior-services nonprofit, Avenidas, does not take a position on the issue, but its Avenidas Care Partners program provides multiple services to navigate end-of-life care and goals. The agency offers private consultations and will meet with clients and their physician during office visits or bedside in the hospital.
During its Oct. 22 caregiver conference, Avenidas will likely have a session devoted to the new legislation and its implementation, the organization stated.