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With right-to-die law looming, a personal story emerges

California law goes into effect June 9, but those who choose the option face daunting obstacles

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.

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Comments

2 people like this
Posted by Bradley Williams
a resident of Palo Alto Hills
on Jun 3, 2016 at 10:35 am

Note much abuse has been documented in the Oregon assisted suicide system.
See the federal case of Thomas Middleton who was killed with the Oregon law for his assets according to the feds.
There are more details at Web Link DOT org/public-policy/assisted-suicide/some-oregon-assisted-suicide-abuses-and-complications/
Opposition to euthanasia comes from the entire spectrum of humanity once they learn how these laws can easily be administered wrongly against the individual . Except for the 2% that believe in the religion of the survival of the fittest.


4 people like this
Posted by Opee
a resident of Crescent Park
on Jun 3, 2016 at 10:48 am

Is there any reason why they don't just let people at the end of their lives
die with an overdose of opiates, self-administered so that they can drift
off to dreamland feeling no pain?

There is an odd foreign movie called "The Barbarian Invasions" on this
theme where a multi-millionaire son spends the last days with his father
who is dying of cancer, and the hospital/medical system will not give
the father pain killers the son goes out and gets heroin. It's a strange
movie, but the idea is interesting, and how someone chooses to leave
this world should be their own business, assuming it is a rational choice.


8 people like this
Posted by Kindred
a resident of Another Palo Alto neighborhood
on Jun 3, 2016 at 11:17 am

First, Dr. Scott, I wish your family well, and am sorry for your loss.

I am going to get hate mail from all side for saying this, but shouldn't people who want to die because of their suffering be offered the chance to participate in really high stakes research - research that might kill them but also might restore their quality of life? For example, regenerative medicine is a really new field (or newly effective) and is focusing on things like lung problems. What if people who reallly are dying so that they qualify for assisted suicide are offered the chance to participate in research that probably won't help them but might leave a legacy to the world? Obviously, ethical safeguards would have to be in place, but so long as people are willing to die as part of the outcome of the work, it seems like they should be offered the chance to give to the world in their last moments of suffering. As someone who has had both long-term pain from a problem one of Kevorkian's victims suffered from, and who has been able to live through it not because of painkillers but because of a treatment for something else that was surprisingly effective as a "side effect" and my doctor was willing to provide off label thereafter, I know what it's like to live second-by-second for long periods of time, overwhelmed by pain so bad it drowns out everything, and what it's like to find surprising help. Going through something like that and having the ability to help others avoid it would be so redemptive. (In this case, yes, I and my physician wrote the drug company, etc etc, we got nowhere.)

Especially with new stem cell treatments that just cannot ethically be tried on healthy humans, it just seems like the dying would give so much to the world if they had the opportunity to. Maybe some of them would be cured, too, though it would not be anything to expect early on. Given the obstacles to assisted dying, maybe it's a shorter route, too. Frankly, assisted suicide should have roadblocks, that is unfortunately the world we live in. We set up the system of justice we have knowing that sometimes the guilty will go unpunished, because we want first to prioritize the rights of the innocent. By the same token, I just think the imperfection of the world and human decency demands that we err on the side of protecting the innocent who want to live from being killed against their will, or convinced to die when there might be surprising answers. Medicine is just changing so fast right now, and medical science truly is poised to change everything.


14 people like this
Posted by Yes, please.
a resident of Palo Verde
on Jun 3, 2016 at 4:38 pm

I fully support indivduals' right to have the choice to end their lives peacefully and quickly if desired, rather than lingering in pain and increasing degeneration.
In fact, I think the California (and OR and WA) laws are too restrictive. Personally, I have known people who had long term, painful, degenerative diseases who had reached the point they would have wanted to simply "be done". But no one would be willing to say 'you only have six months left to live'. In these cases, I think as long as the adult is rational and not being coerced they should be permitted to use an "End of Life Option".

The fears of wide spread abuse of these end of life laws are just not borne out by reality. As this personal story shows. There is not wide spread abuse of "end of life options". However, sadly there are many cases of seriously ill patients being abused or neglected by their exhausted caregivers. Or simply not having financial resources for care.

We are all going to die. Every one of us. As a society we need to gracefully accept this. Then we can make good decisions about how we want to live our lives, for whatever mysterious duration they may have.

I am very grateful that California now has the End of Life Option Act. I do not need it right now. But I may someday. If I reach that point, I want to have the option to end my suffering with dignity and acceptance. I do not want my family being held under scrutiny for helping me fulfill those wishes.

We will need brave physicians, hospice workers, social workers, etc. who are willing to help very ill people understand their choices and carry them out.

Thank you, Scott family, for sharing your story.


1 person likes this
Posted by Resident
a resident of Another Palo Alto neighborhood
on Jun 3, 2016 at 5:13 pm

First I must say that I think all human life from the moment of conception until death is valuable and precious.

But it strikes me as odd that a State that is unable to find a cocktail of drugs to end the life of a death row inmate painlessly, is able to find a method of doing the same for someone who considers they are in so much pain from a terminal illness.


2 people like this
Posted by History Buff
a resident of another community
on Jun 5, 2016 at 8:09 pm

> "Is there any reason why they don't just let people at the end of their lives die with an overdose of opiates, self-administered so that they can drift off to dreamland feeling no pain?"

That's exactly what the End of Life Option does.

"A total of 218 qualified terminally-ill adult Oregonians received a prescription for medications under the provisions of the Oregon Death with Dignity Act in 2015. Of all patients with prescriptions for death-hastening medications, 125 died peacefully after ingesting the medications and 7 others died after ingesting medications prescribed in 2014. In all, 60.6% of people who obtained medications died after taking them. This corresponds to 38.6 Death with Dignity Act (DWDA) deaths per 10,000 total deaths, or 0.39%."
Web Link

Oregon Death With Dignity annual reports:
Web Link


2 people like this
Posted by Death with Grace
a resident of Midtown
on Jun 6, 2016 at 11:21 am

Dear Scott Family, I'm sorry to hear of your loss and appreciate the sharing of your story.

Having now nursed 5 people on their journey along the last step of life, I can say that I also am grateful that California now has the End of Life Option Act. The truth, in my experience, is that we must turn to that place of strength (whatever that is for each of us) to face the end of life with grace and acceptance. Sometimes it doesn't make sense to keep struggling to stay alive, especially if you've been told there are no options left, and you've had a long fulfilling life.

The first person I helped pass on was my mom, who languished and suffered horribly (this was 30 years ago and CA state & PA Med Foundation had no formal Hospice Care system). She was given medicine to administer by injection (by me as there were no "visiting nurses") to ease her pain but nothing else.

It was a grim and horrifying reality we faced when she and I realized that no matter what one's plans are (ingesting hemlock), if you're too sick (or unable as was her case) to swallow the stuff, you can't kill yourself.

I was so blessed that she was aware until the end and fortunate to be able to ask her every day, "are you sure you don't want a nutrition tube inserted?" Her refusal was the mark of a brave woman who recognized it wasn't just her throat that was ossified, but all her organs were hardening as well. I was absolved of any guilt and to PAMF's credit, her Dr's did NOT push her to do any intervention nor require her to go into Stanford Hospital. Still, it was an almost unbearable process for me and it so true that getting old (and dying) is not for the faint of heart.

I personally always planned to get to the far north and walk out onto the ice. However, my husband has pointed out that by the time I'll need to do so, there might not be any ice fields....

Thus, I'm in total agreement with "Yes, please" from above, who said:
"I am very grateful that California now has the End of Life Option Act. I do not need it right now. But I may someday. If I reach that point, I want to have the option to end my suffering with dignity and acceptance. I do not want my family being held under scrutiny for helping me fulfill those wishes."


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