News

Sue's farewell: A Palo Alto 'end-of-life' story

How a terminally ill woman used a new law to die with dignity

Almost completely bedridden, in pain and determined to avoid the grim final stages of her rare neurodegenerative disease, Sue decided it was time to legally end her life. She had researched California's End of Life Option Act more than a year earlier, and meticulously complied with each step of the law.

On her chosen day in March of last year — having said her farewells to devastated, but accepting, family and friends — Sue, 78, sat up in the hospital bed in her Palo Alto home, kissed her husband and drank a lethal dose of medication that had been prescribed by her physician.

Sue's husband, Ralph, offered a tender account of his wife's use of California's law at a recent gathering at Avenidas Village, a membership organization that provides resources and support to seniors who choose to age in their own homes. He decided to share his story to provide insight and dialogue on a topic that's not always easy to talk about.

Ralph said it was important to Sue that her family accept and support her choice, though some members might not have made the same choice for themselves.

"It was as dreadful experience as I've had, but I really don't think it's any different than having a loved one who died on their own," said Ralph, who asked that their full names not be published. "I miss Sue terribly — I still do and I always will."

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In June 2016, California became the fifth state to allow physicians to prescribe drugs to terminally ill adults who are of sound mind and request such assistance to end their lives. The End of Life Options Act requires patients to take specific steps to obtain the lethal prescription, including two oral requests — at least 15 days apart — to a physician, a written request, and separately, confirmation by a different physician.

During the first 2 1/2 years after the law took effect, prescriptions were written for 1,108 patients, according to the California Department of Public Health.

But because the law was so new at the time of Sue's decision, many healthcare professionals were not familiar with the process, Ralph said. Sue's neurologist, as well as her primary-care physician of 30 years, had no experience with the law, he said.

And when Sue decided it was time to ingest the lethal medication, the owners of the small care facility in Sunnyvale — where she'd lived in her final months after Ralph could no longer care for her — refused to allow her to do it on their premises. That necessitated a complicated transfer back to the couple's Palo Alto home.

A hospice social worker, who helped care for Sue in her last four months, arranged to move Sue's hospital bed back to Palo Alto and to transfer her by ambulance.

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"All this occurred like a whirlwind in the course of 24 hours," Ralph said.

"In the meantime, Sue's doctor, who'd never been through this before, had contacted Compassion & Choices (a nonprofit that advocates for patient-directed care at the end of life) and been educated about how to proceed with the paperwork and how to deal with the medication."

Ralph said the physician had trouble finding a pharmacy that was willing to grind up the medication.

"It was questionable right down to almost the last minute, and finally they said 'Yes, you can pick it up,'" Ralph said.

When Ralph asked the pharmacist what he should expect, the pharmacist said he wasn't sure because he'd never filled such a prescription.

The next morning Sue was determined to drink the medication. Within five minutes, she was unconscious. She remained in that state for 10 hours, Ralph said.

"During those 10 hours, although she was unconscious, and I'm sure she didn't feel anything, it was agonizing for her daughter and me," Ralph said. "We had no idea what to expect."

Christina Goodwin, California state manager for Compassion & Choices, said physicians today have a combination of medications that work more quickly, putting patients to sleep within 5 or 10 minutes and taking full effect within two hours.

"We have no reported incidents of abuse, misuse or coercion," Goodwin said.

In 2018 — the latest reporting period available — 180 physicians prescribed aid-in-dying drugs to 452 individuals across the state, according to the health department. About 69% of patients had malignant cancers, followed by 13.1% who had neurological diseases, such as ALS or Parkinson's disease. Nearly 90% were receiving hospice or palliative care.

A 2019 survey by the California Health Care Foundation found that 3 in 4 Californians support the law, which was initially appealed and then reinstated by the California State Supreme Court.

Colorado, Hawaii, Maine, Montana, New Jersey, Oregon, Washington, Vermont and Washington, D.C., have similar legislation.

In signing the End of Life Option Act in 2015, then-Gov. Jerry Brown wrote "I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn't deny that right to others."

More about California's End of Life Option Act

California's End of Life Option Act became effective on June 9, 2016. The Act allows terminally ill adults living in California to obtain and self-administer aid-in-dying drugs. The Act requires the California Department of Public Health to provide annual reports. Here are highlights from 2018, the latest reporting period available:

• One hundred and eighty physicians prescribed aid-in-dying drugs to 452 individuals.

• Of those patients, 314 died after ingesting the prescribed drugs; 59 died from their underlying illness or other causes; the "ingestion status" of the remaining 79 cases was unknown.

• The median age of patients who died from the drugs was 74.

• 76% of those patients were between 60 and 89 years old.

• 51% were female.

• More than 80% had at least some college education.

• More than 88% were white.

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Sue's farewell: A Palo Alto 'end-of-life' story

How a terminally ill woman used a new law to die with dignity

by / Palo Alto Weekly

Uploaded: Fri, Mar 6, 2020, 6:44 am

Almost completely bedridden, in pain and determined to avoid the grim final stages of her rare neurodegenerative disease, Sue decided it was time to legally end her life. She had researched California's End of Life Option Act more than a year earlier, and meticulously complied with each step of the law.

On her chosen day in March of last year — having said her farewells to devastated, but accepting, family and friends — Sue, 78, sat up in the hospital bed in her Palo Alto home, kissed her husband and drank a lethal dose of medication that had been prescribed by her physician.

Sue's husband, Ralph, offered a tender account of his wife's use of California's law at a recent gathering at Avenidas Village, a membership organization that provides resources and support to seniors who choose to age in their own homes. He decided to share his story to provide insight and dialogue on a topic that's not always easy to talk about.

Ralph said it was important to Sue that her family accept and support her choice, though some members might not have made the same choice for themselves.

"It was as dreadful experience as I've had, but I really don't think it's any different than having a loved one who died on their own," said Ralph, who asked that their full names not be published. "I miss Sue terribly — I still do and I always will."

In June 2016, California became the fifth state to allow physicians to prescribe drugs to terminally ill adults who are of sound mind and request such assistance to end their lives. The End of Life Options Act requires patients to take specific steps to obtain the lethal prescription, including two oral requests — at least 15 days apart — to a physician, a written request, and separately, confirmation by a different physician.

During the first 2 1/2 years after the law took effect, prescriptions were written for 1,108 patients, according to the California Department of Public Health.

But because the law was so new at the time of Sue's decision, many healthcare professionals were not familiar with the process, Ralph said. Sue's neurologist, as well as her primary-care physician of 30 years, had no experience with the law, he said.

And when Sue decided it was time to ingest the lethal medication, the owners of the small care facility in Sunnyvale — where she'd lived in her final months after Ralph could no longer care for her — refused to allow her to do it on their premises. That necessitated a complicated transfer back to the couple's Palo Alto home.

A hospice social worker, who helped care for Sue in her last four months, arranged to move Sue's hospital bed back to Palo Alto and to transfer her by ambulance.

"All this occurred like a whirlwind in the course of 24 hours," Ralph said.

"In the meantime, Sue's doctor, who'd never been through this before, had contacted Compassion & Choices (a nonprofit that advocates for patient-directed care at the end of life) and been educated about how to proceed with the paperwork and how to deal with the medication."

Ralph said the physician had trouble finding a pharmacy that was willing to grind up the medication.

"It was questionable right down to almost the last minute, and finally they said 'Yes, you can pick it up,'" Ralph said.

When Ralph asked the pharmacist what he should expect, the pharmacist said he wasn't sure because he'd never filled such a prescription.

The next morning Sue was determined to drink the medication. Within five minutes, she was unconscious. She remained in that state for 10 hours, Ralph said.

"During those 10 hours, although she was unconscious, and I'm sure she didn't feel anything, it was agonizing for her daughter and me," Ralph said. "We had no idea what to expect."

Christina Goodwin, California state manager for Compassion & Choices, said physicians today have a combination of medications that work more quickly, putting patients to sleep within 5 or 10 minutes and taking full effect within two hours.

"We have no reported incidents of abuse, misuse or coercion," Goodwin said.

In 2018 — the latest reporting period available — 180 physicians prescribed aid-in-dying drugs to 452 individuals across the state, according to the health department. About 69% of patients had malignant cancers, followed by 13.1% who had neurological diseases, such as ALS or Parkinson's disease. Nearly 90% were receiving hospice or palliative care.

A 2019 survey by the California Health Care Foundation found that 3 in 4 Californians support the law, which was initially appealed and then reinstated by the California State Supreme Court.

Colorado, Hawaii, Maine, Montana, New Jersey, Oregon, Washington, Vermont and Washington, D.C., have similar legislation.

In signing the End of Life Option Act in 2015, then-Gov. Jerry Brown wrote "I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn't deny that right to others."

More about California's End of Life Option Act

California's End of Life Option Act became effective on June 9, 2016. The Act allows terminally ill adults living in California to obtain and self-administer aid-in-dying drugs. The Act requires the California Department of Public Health to provide annual reports. Here are highlights from 2018, the latest reporting period available:

• One hundred and eighty physicians prescribed aid-in-dying drugs to 452 individuals.

• Of those patients, 314 died after ingesting the prescribed drugs; 59 died from their underlying illness or other causes; the "ingestion status" of the remaining 79 cases was unknown.

• The median age of patients who died from the drugs was 74.

• 76% of those patients were between 60 and 89 years old.

• 51% were female.

• More than 80% had at least some college education.

• More than 88% were white.

Comments

Magnolia
Ventura
on Mar 6, 2020 at 8:22 am
Magnolia, Ventura
on Mar 6, 2020 at 8:22 am
14 people like this

Sending my sympathies to Bert and Sue's family and friends.

I strongly support all efforts to reduce suffering at the end of life.


Self Determination In Life As In Death
Crescent Park
on Mar 6, 2020 at 8:50 am
Self Determination In Life As In Death, Crescent Park
on Mar 6, 2020 at 8:50 am
14 people like this

A story of both courage & sadness.

Everyone & anyone of sound mind should retain this option.

About the only ones against such a measure would be pious theologians who harbor a strict & deep adherence to their deity making such a decision.


thank you
Escondido School
on Mar 6, 2020 at 3:58 pm
thank you, Escondido School
on Mar 6, 2020 at 3:58 pm
7 people like this

Grateful to Ralph (and Sue) for sharing this story! And many thanks to Chris for such a compassionate, informative writeup on California's End of Life Option law. I'm sure that it took lots of effort from many, many people to make this option available to all who need and choose it.


Just Chjecking Out
Greenmeadow
on Mar 6, 2020 at 4:04 pm
Just Chjecking Out, Greenmeadow
on Mar 6, 2020 at 4:04 pm
13 people like this

How does this differ from legalized suicide?

In other words, if someone can convince their MD that they are simply fed up with the BS of the world, shouldn't they be allowed the same option without having to be put under mental ward observation?


Gregory
Menlo Park
on Mar 7, 2020 at 5:38 am
Gregory, Menlo Park
on Mar 7, 2020 at 5:38 am
8 people like this

I can understand "Sue's farwell" decision. At 51 my wife (Susan)was diagnosed with stage 4 metastatic breast cancer. She chose Stanford to help her with medical (palliative) care. The first 6 months after diagnosis, my wife was a mess. Depression, anger and a sense of helplessness. Then, she was determined to fight. She researched articles, read over 100 books, changed our "diet", signed up with an online metastatic community and started sharing her research and ideas. She found purpose and hope. We got 4 years and 9 months. During August of 2017, Susan asked her doctor about the end of life option. At this point in her care, her doctor said she ran out of options and her "numbers" (blood work) were not looking good. I witnessed a slow and debilitating decline of Susan's ability to walk, think and enjoy living. At this point, she was experiencing non stop dizzy spells and said the room was just spinning. Everything tasted like metal and she was "ready" to go. We were advised of a 2 week period in which she would be seen by two doctors which would ask her if she was consciously making the right decision(the right to die). She would physically have to ingest this "cocktail" sleeping drink herself (unassisted). She agreed to all this and was waited for the second doctor appointment to bring the medicine (at the end of two weeks). He had to witness her tasking this medicine. She only lasted a week and passed 5 days after turning 55. The right to die option is the most sane peace of mind legislation. I am grateful we have this choice and cannot tell you how difficult it was to watch a loved one suffer so much. Even though Susan did not last the two week waiting period, it brought her great comfort to know she would be out of pain.


David B. Karpf, MD
Old Palo Alto
on Mar 7, 2020 at 9:35 am
David B. Karpf, MD, Old Palo Alto
on Mar 7, 2020 at 9:35 am
1 person likes this

Gregory,
My heatfelt condolences for your loss!


Bradley Williams
The Greenhouse
on Mar 7, 2020 at 12:36 pm
Bradley Williams , The Greenhouse
on Mar 7, 2020 at 12:36 pm
Like this comment

Correction doctor assisted suicide remains a homicide in Montana. No one instant immunity like the states where Oregon type death laws exist.
It is timely that we address the pitfalls of Oregon-type death laws.

The mandatory falsification of death certificates skews the public medical data base unnecessarily.
The realization that induced premature deaths are not peaceful nor rapid 25-72% of the time, quantified in the study by Bill Gallerizzo, is a call for amendments — amendments to ban the use of drugs deemed cruel for death row, for official assisted suicides where applicable and unofficial hastened deaths.

That would stir the backwaters of stealth euthanasia currently escaping scrutiny.
There are other amendment needs, like provide for a witness to our choice of the “self-administration." As it is, with no oversight, 17-21% of the subjects experience forced premature deaths to satisfy their facilitators.

These three amendments would bring much needed transparency to the administration of the public policy.
Bradley Williams,
Care Giver


Lauren Andrews
Adobe-Meadow
on Mar 11, 2020 at 7:34 am
Lauren Andrews, Adobe-Meadow
on Mar 11, 2020 at 7:34 am
Like this comment

[Post removed.]


Probate Attorney
University South
on Mar 11, 2020 at 8:46 am
Probate Attorney, University South
on Mar 11, 2020 at 8:46 am
3 people like this

The 'End of Life Option' must be undertaken only by those of SOUND MIND or else problems involving anticipated inheritances & the administration of elder conservatorships come into play...many of them ILLEGAL & CRIMINAL.

Greed is a part of human nature...has been since day one.


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