Death with Dignity Act (DWDA) and Physician Assisted Dying (PAD)
This is the first chapter of an exhaustive book I am writing about the Death with Dignity Act (DWDA), Physician Assisted Dying (PAD) and Physician Assisted Euthanasia (PAE). The title is Master of Your Own Death: The Death with Dignity Act in North America and Europe. The purpose is to educate the public and medical workers who do not know of these End of Life Options. Brittany Maynard was the inspiration for the passage of the DWDA in CA in 2015 and implemented in 2016.
Brittany Maynard is one of my heroes of our times as are certain members of my nephrology practice in California from 1979 to 2014 for whom some of us had to take a more shadowy route to get PAD. As I would say to new office applicants that our patients “die a lot” to see if they were okay with that.
Brittany Maynard lived in Oakland, CA at a time when California’s legislature had failed four times to pass the death with dignity act (DWDA). On December 31st, 2013 worsening headaches and vomiting she had had for a year forced her to an E.R. at a “community” hospital Oakland. The E.R. doctor was the first of many doctors she had seen over a year to order a CT brain scan.
All he could say was that there was “a shadow.” With further pressure he was able to say that she had a large mass in the left side of her brain and mention was made of a slight droop to one of her eyes.
Much of the material for this chapter is public knowledge but personal issues and quotes are from Brittany’s mother, Deborah Zeigler, who wrote a poignant and complete story of Brittany’s story from January 1, 2014 to her assisted death on November 1st in Portland Oregon: Wild and Precious Life,
Emily Bestler Books and imprint of Simon & Schuster, 2016.
Oregon was the first state in the U.S. to pass the DWDA/End of Life Choices in 1994. It was tied up in the courts until 1998 when the Supreme Court decided on its legality.
This 29 y/o accomplished woman with BA, Masters and newly married adventurer needed to have an MRI not available there. She was to be sent to “another” hospital in Oakland. Even before the MRI she demanded her mother get her laptop. She then said, “SEND ME TO OREGON.”
I am writing this book, Master of Your Own Death: The Death with Dignity Act (DWDA) to educate the California public of this option finally adopted by the California legislature in 2015 because of Brittany. She is my hero and has been since her video made on You Tube during that first month after diagnosis. That ended up on Facebook and over the months she was national and international news. . She explained her story and her desire to get to Oregon ASAP. The Oregon legislature finally passed the End of Life Choices/DWDA in 1994. Of course, it was stuck in the courts until 1998 when the Supreme Court said that to deny this right to die would be unconstitutional.
As of 2023 Washington State was second and yet there are only ten states and Washington, D.C. (not in that order) that have DWDA, END OF LIFE CHOICES, MEDICAL AID IN DYING all patterned on the Oregon law.
People called the DWDA physician assisted suicide but expediting a person with any terminal disease is hardly suicide as we define suicide. I want to make it clear that PAD is NOT euthanasia (PAE) in any U.S. state. In several European countries and Canada if a terminal patient qualifies both PAD and PAE were implemented from the very beginning in 2014. I’ll get to the specifics of the law in the U.S. all patterned on Oregon’s later.
Brittany had a regular with contrast at this other Oakland Hospital.. After 48 hours she and family had not been told the results so when a doctor came in to do neuro checks and was about to leave. Brittany asked with conviction as he was turning to leave, “Hey, are you my doctor? Don’t leave, I want to talk to you!” “Yes, I am the neurological surgeon on this case. (N.B. my highlight.)You have a large infiltrating non-enhancing lesion present in the left prefrontal lobe, and it extends posteriorly into the left temporal lobe. It is also crossing into the right hemisphere and pushing on the right ventricle.”
Brittany made him explain every word which, you the reader can Google a picture of the lobes of the brain and the name of the tumor/cancer.
“He said that she had a glioma, a primary brain tumor. This means that the tumor started in your brain. It didn’t metastasize from some other place in your body. Based on the scans and your age, I suspect that it is a glial tumor, possibly astrocytic.” (N.B. Even I am confused but I believe those two terms glial and astro are used interchangeably.)
The surgeon elaborated a bit. The tumor had probably been growing for about a year based on its large size. Infiltrating means if the area where the tumor began there are tentacles like an octopus grabbing into brain matter so these tumors are able to be debulked to remove pressure on the brain but cannot ever by totally removed. As I read all this it surprised me that he never used the word Cancer which is what this is. He said a biopsy would be needed to make a tissue diagnosis (histology) to see what stage the cancer was. “Is this thing is going to kill me, right?”
“Not immediately. You have some time.
“But it will kill me eventually?”
“Over time, yes.”
“Do you transfer patients to Oregon,” Brittany asked.
“Why would you ask about Oregon?”
“If you don’t know why I’d want to transfer to Oregon, this discussion is over,” Brittany’s disgust was palpable. To continue on I know how horrible many doc’s bedside manner has become (with big box medicine) because his next comment was.
“There’s a surgeon over at UCSF who’s really out there doing some crazy…” The surgeon’s hands made a circling motion over his own brain.
“I don’t really agree with his approach, but you could see what he has to say.” I, your author sit in a chair or even on the patient’s bed when talking them and family about issues like this.
He remained standing the whole time. I have to say having trained and worked in three hospitals and practiced nephrology for 38 years in a community; why am I surprised?
I have only met one neurosurgeon that I did not want to punch in the face. (The one gentleman neurosurgeon John Darroch, MD came to Modesto, CA in 1965 and died in 1998. He was a pleasure to work with and one of the most respected and liked docs in Modesto.
On the dark side of the neurosurgeon spectrum was Henry Schartz, MD and Chairman of neurosurgery at Washington University School of Medicine in St. Louis during my medical school years, 1970-4. He was born in 1909 and, although I cannot find a death date, he has certainly died. His curriculum vitae reads like God himself so he must have been a curmudgeon when I crossed paths with him. He was mean, nasty and feared.
I already had my residency in San Francisco locked up so I could take some liberties to him and the head of Endocrinology (Jewish Hospital) during my fourth year. Once I was coming out of an elevator and Schwartz pushed in. I said, “Dr. Schwartz, correct? Do you not know that in this situation proper etiquette is to let those inside the elevator exit first?” He just harrumphed. As he started to walk away I asked, “When in a city walking with a woman which side of the lady should you be positioned?” Jesus, you don’t know Dr. Schwartz? What’s your name?” It’s right here on my badge. Paul Golden that is P-a-u-l G-o-l-d-en.”
This God of a neurosurgeon invented the technique for pituitary tumor removal of the brain through the nose was indeed an ass-hole. I have to add a bit of spice to my books. My editor might not agree!
Back to Brittany: Brittany’s pain level was already at a “9.”
“Did you hear what the doctor said? I have a big-ass, fucking brain tumor!!It’s going to kill me. You do get that, don’t you? I need to plan.” She told her mother, “YOU have to help me establish residency in Oregon. We have to move fast. I don’t have much time.” Of course, Brittany wanted to be transferred to U.C.S.F. neurosurgical department; Brain Tumor Research Center (BRTC). As her mother put it, she had jumped over denial right to acceptance.
“Promise you won’t let me suffer, Momma. Please don’t ask me to lose my sight, hearing, and speech. The pressure inside my head’s so bad. It feels like it’s going to explode.”
Dr. Mitchel Berger, the director, was out of town so his associate professor Dr. Chang would be taking her case for now. He wanted to do a craniotomy to debulk the tumor and get a tissue biopsy. The first surgery was on January 10, 2014. Right out of the gate Brittany told Dr. Chang that she was investigating the DWDA in Oregon. “I also need a DNR form” which she got after surgery (N.B. Britany was my kind of patient.)
The day before the surgery Brittany had already made a YouTube video to send to a doctor in Oregon when they found a name of one who provides it. This Video was for her family only at that time.
Deborah asked if she could stay with her daughter in the neurosurgery ICU after surgery. The response from any worker, doctor, nurse etc. was almost robotic. “No one stays to in the ICU at UCSF. There are no accommodations. None.” The reason was the ICU rooms were small with just curtains separating the rooms.
The surgery went well but Dr. Chang told them all he could remove safely was 45% of the tumor.
In the middle of the book there are pictures of Brittany. She was stunningly gorgeous with a drop dead smile. I may be a deist but I am no theist
Accompanying the video to the Oregon Health and Science University Brittany sent an e-mail introducing herself. “When I feel that my quality of life is no longer sufficient or I am in tremendous amount of physical pain, I am choosing to pursue both palliative care and physician assisted death through the Death with Dignity Act in Oregon.” Notice she used the words physical pain. I will come to that later.
On the 25th of January Brittany and her husband, Dan, went back to Oakland to wait out the time between the first and second surgery. That would involve Dr. Bender to take the most of the remaining tumor in an awake state so Brittany could speak words and move limbs while they cut so as to prevent any damage to the roles three lobes for which they are responsible.
During the next three weeks Brittany flew to San Diego to be with her mother. The pain was unremitting even more so than earlier in January. “Fuck you, God,” Deborah shrieked, “I tried to be a good person. I prayed to you. I begged you! I got down and groveled! Forty-five percent, you bastard! I hate you! If you even fucking exist. The pain is never-ending! How could you hurt her like this? How could you hurt me like this?”
(Just today I received a copy of People Magazine’s October 27, 2014 issue that has their piece about Brittany’s story with her picture on the front cover. Your writer did what Deborah Zeigler places in her book in February. It was an email detailing what resuscitative efforts she would NOT want in case she became incapacitated before November 1st.
“The list included intubation, mechanical ventilation, chest tube, chest compressions, defibrillation, vasopressor, artificial feeding, and tube feeding. “ (N.B.) She certainly did her homework. She also said not to call an ambulance because they do not have to follow advanced directives or they don’t know the patient has one. (The answers are to have a Medic-Alert bracelet that says DNR. Also, one should carry a copy of the directive on one’s person at all times. Have your two witnesses to the notary have copies on their person at all times. If you do all this then a lawyer is not necessary.
She tells her readers something about the violence that can occur in the end-stages of dementias or brain occupying masses. People can become psychotic with delusional thoughts and hallucinations towards the end with any dementia.
With this same email Brittany wrote, “My friend’s husband lost his fight to a brain tumor. He said his father became enraged and threw his own shit at the family. They have to live with that memory. I don’t want to go that way.”
I have to step out of Brittany’s story and reach way back in my brain to a patient we treated in 1977 when I was a third year medical resident at U.C.S.F. I was doing my last three month stint as the chief med resident. I was doing my 6pm to 6am shift at Mission Emergency at the County. As a third year resident I was in charge of medical illnesses and the chief surgical resident was in charge of surgical issues.
The front room consisted of two large rooms for severe emergencies. One was the Trauma room (the red phone) and one was the Medical room (the white phone.) The dozen or so curtained cubicles were for people who just arrived with less severe Med/Surg problems to be triaged for admission to the Men’s Ward, Women’s Ward, medical ICU, the respiratory ICU or the Surgical ICU, the Alcohol Detox Ward or to Operating Rooms, or to Home.
Those patients that no decision could be made were held in a large open room, or holding space with no curtains. Around 3am things quieted down in front and med students, interns and residents went to further evaluate those in holding. It could hold about twenty patients.
They were evaluated later to figure out their problem and send home or admit.
There was a white Jane Doe of about twenty years y/o, unkempt and mildly obese. From the time she hit the E.R. all she did was repeat the words, 7-Up, over and over again. There were no physical or neurologic signs and she could not respond to questions. She was fully awake. I had one rule that I followed whether a patient was anywhere in the hospital. If they developed a high fever or change in consciousness for no obvious reason they got a skull XRAY and a spinal tap. There were no CT scanners until about 1976.
Those with focal neurologic signs were sent to the XRAY fluoroscopy suite for a direct injection to the carotid – what we call an arteriogram although these days are done through the femoral artery after passing a long catheter up to one carotid. That could show brain bleeds, sometimes infarcts and tumors.
In her case there was only the altered consciousness and what is called “perseveration.” Honestly I did not now that word at the time.
So, I did the lumbar puncture and pure blood returned. The CSF pressure rose rapidly to 30 mm mercury but not above. If the latter goes much higher that means that that whatever in the brain can cause the brainstem to be pushed down through the big hole at the base of the brain, That’s game over. Now if there is time, no LP is done without a CT to show large space occupying masses. The exception is infants who come in with a very high fever which may mean meningitis. When you expect high CSF pressure at that time a carotid arteriogram would have been performed.
We all took a sigh of relief. She got no arteriogram. She went to surgery with a neurosurgeon. Almost one whole hemisphere was replaced by necrotic cancer. In the CT scan of Brittany’s brain in People Magazine about one-fourth of Brittany’s brain is occupied by her tumor including three lobes that are responsible for many vital functions including cognition. If anything grows over months the brain can compensate for that with new vessels to the other hemisphere.
The 7-Up lady above was taken to the neuro ICU and allowed to expire over a couple days even though the operation did release the intracranial pressure.
Perseveration is defined as “continuation of something such as an activity or thought to an extreme degree or beyond a desired point. Specifically, psychology: the continual involuntary repetition of a thought or behavior.” (Meriam Webster Dictionary).
Part of Brittany’s peace of mind was that she was not leaving any children behind. She also specified that she wanted to be an organ donor.
When it came time for Brittany’s awake debulking of more tumor, Dr. Berger said that there was too much left for that to be done. He suggested a course of chemotherapy and radiation to reduce the amount of cancer and then doing the second surgery. (N.B. I scream as I read this!!!!! No oncologist or neurosurgeon will just say ENOUGH. They have to keep suggesting more bull-shit therapy that THEY KNOW WILL NOT GIVE HER ANY MORE QUALITY OF LIFE. I EQUATE THIS TO NEPHROLOGISTS WHO WILL PUT ANYBODY WITH A BEATING HEART ON DIALYSIS.
Fortunately, Brittany had done her research about her cancer markers and declined. “The doctor stood his ground, saying that despite her genetic markers, a wait-and –watch approach was not wise. “Roughly what percent chance do you think that I have of the chemo shrinking my tumor?” Brittaney asked. The response was “less than 30%.” And she asked if she had the chemo and then the awake craniotomy what chance was the chance of that being effective. He said “…to resect more of tumor that would be quite low, a single-digit percentage.”
Earlier in March, Dr. Chang told Brittany that almost all of the tumor they has resected in January had grown back and based on that and the histology her tumor was now considered high grade and she had less than a year to live. Dr. Berger also knew of this when he made the above recommendations.
The family’s course now switched to how she get DWDA in Oregon, Switzerland or the Netherlands. The latter two also can provide PAE. Brittany’s mother and husband Dan flew to Oregon and met with Death with Dignity doctors on April 8th. In your writer’s mind I am thinking that makes it seven months from request to her death in Oregon. Oregon still had a one year residency rule in 2014. (That was abolished to zero time in 2016.) They met with a team for the Oregon Health and Science University campus. The physicians and social worker were concerned about how Brittany would obtain legal residency status. They had already watched the private YouTube video Brittany had made prior to her first surgery. That had been made public by then and on Facebook with millions of likes/comments.
The neurosurgeons in Oregon wanted to perform a different kind of MRI that involved iron as the marker. At the time of the first Brittany and family had booked a rental house in Portland with a lease that would begin May 1st.
Meanwhile during these months Brittany had gone with a friend to tromp around Alaska and another to go to Yellowstone. Most awesome were her trek around Denali National Park and kayaking the Kenai Fjords. She and a friend also cramponed the Mendenhall Glacier and Sawyer Glacier.
Upon returning from Alaska Brittany cancelled the second craniotomy and Canada’s iron MRI. Invariably, the pain medicine and decadron, steroid to prevent brain swelling, started giving Brittany side-effects including psychosis and verbal anger attacks as well as weight gain. Also, in June and all the way to November 1st Brittany began having seizures which are caused by any abnormality in the brain from strokes, trauma, tumors etc. They got more and more refractory to medications as November approached. She was also developing leg edema and bruising due to the steroids as well. During these months from June to November, Brittany was meeting with her palliative care doc who adjusted her medications.
In early June Brittany filmed a piece for the U.K. England still does not have a DWDA then, 2014, and now, That led to the British media to go to Oregon to interview her. “She was outspoken, and her words flowed articulately,” said Deborah.
In early August Brittany and Deborah moved into the Oregon house. By then she was posting progress reports on Facebook. A videographer came from New York. Brittany found a nonprofit to finance the film. Then People magazine wanted to interview Brittany for an article. All of this was to bring awareness to the public.
After one seizure she lost her speech for thirty minutes. (N.B. I’m thinking that was a postictal phase after seizures during which there is confusion.) A recent MRI didn’t suggest increased intracranial pressure.)
In August Brittany started showing the anger and swearing obscenities to Deborah and her husband, Gary as I mentioned earlier about any brain conditions. They were severe and obscene.
In October the video by the New York videographer was released on YouTube and got 3 million plus views. It was six and one//half minutes. After that national news organizations came to their home, CBS did an interview with Jan Crawford. A team form New Your filmed “her testimony for legislators.” No mention is made about this essential testimony. I am thinking that this was in lieu of the one-year residency law in Oregon.
In March of 2022 Oregon eliminated any requirement of residency. “The U.S. District Court in Portland on Monday, the Oregon Health Authority and the Oregon Medical Board agreed to stop enforcing the residency requirement and to ask the a Legislature to remove it from the law….”
The 14th amendment made this requirement both “discriminatory and profoundly unfair to dying patients at the most critical time of their life…,” argued the attorney for Compassion & Choices. The latter is the national advocacy group that sued against Oregon’s requirement. At least eight other states and D.C. followed their lead. The original law in 1997 required a residency of six months.
I am not going to repeat here the day of death of Brittany as it was exactly the same as in Derek Humphry’s book Jean’s Way published in 1978. In Deborah’s words she does say Seconal was the specific barbiturate and that Brittany drank the mix in water in one gulp. She exclaimed that it was bitter and had a bite of ice cream chaser. She did post a good-bye on Facebook that same day.
Why a hero? California had tried five times through the legislature and a referendum and failed to pass the DWDA. Six months after Brittany’s death the DWDA was passed!
used to take one year of habitation for Brittany whose case was national and international news she told her mother that she would die. She flew to Oregon with her mother and had her first meeting with her palliative care doc in July. Brittany chose November 1st, her 30th birthday to die. Before that she began having seizures from the brain cancer. They became more and more intractable.
On October, 13th Brittany made a video by CBS to be played on Facebook about the at least five unbearable symptoms she was feeling. I cannot reproduce it here. It makes me tear up. That was her explanation of why she was going to end her life. It is reproduced on 275 of the first paperback edition of 2016. On pg 277 is a more detailed version of her first person story and a good-bye played live on CBS (Jan Crawford). Before it was even placed on Facebook her site verily exploded with comments and wishes. Actually, this last film was required of the Oregon legislature. (N.B. ?) to see.
Oregon threw out the welcome mat when Brittany said she would like to see the Grand Canyon from a helicopter. The itinerary was secret as she and her mother went to Las Vegas where they had dinner and saw a performance of Cirque du Soleil. After much screening of helicopter services and vetting of pilots one took them on his helicopter over the Grand Canyon.
On November 1st Brittany told which family and friends could be in the room, which music to play as well as some poems read. When her mother comes back into the room for the last time mention is made of 100 capsules (no doubt Seconal or Nembutal) having beren emptied into a glass. She swallowed the whole amount and mentioned that it was bitter. She then had some ice cream. She asked her husband to read a story. Before he finished a few sentences she was asleep and snoring. Another family member kept he finger on her pulse and tapped Deborah Zeigler that she was gone. No mention is made of how many minutes to that point (N.B. But it is usually less than 30 minutes.).
The real issue is quality of life vs. quantity of life. Perhaps the only chronic, debilitating disease that has a painless way out is kidney failure. When a patient determines their life is no longer tolerable, he or she can just stop dialysis and pass within two weeks without pain or suffering as the potassium rises and stops the heart. Allowing discontinuance or not starting dialysis has never been an issue of removing life support. I wrote an article in the Annals of Internal Medicine about R.C. who after eight years of dialysis began to lose quality of life. I told him about the option of discontinuance of dialysis. His eyes lit up and without hesitation he said, “I want that.”
In the past some of us who saw desperately ill people, in my case as a nephrologist and a bioethicist, have provided single drug PAD before it was legal. The veil of secrecy of that was dramatically ended in an article in the New England Journal of Medicine (NEJM) by Dr. Timothy Quill in Rochester, New York in 1991. He detailed story PAD to a young woman with the worst kind of leukemia. She chose no treatment but asked him to promise she would not suffer when the pain became intolerable. He was about to be prosecuted by the New York State district attorney but the charges were dropped. Yet, New York State still does not have a DWDA.
Even more telling is that in that same issue of the NEJM Arnold Relman, one of the 12 prophets of Medicine, wrote an editorial about Dr. Quill. He wrote that if he was ever in the same situation as his young patient, he hoped he could find a doc like Timothy.
But what about the rest of those people who have reached the end stages of incurable diseases? The bed-bound people with stage 4 cancer, or emphysema or heart failure? Death for them is miserable, filled with unremitting pain as they suffocate in their own fluids and worse, despite hospice or palliative care. Durable powers of attorney are more often than not ignored. Just ask our poor emergency room docs about administering inappropriate CPR.
After four failed attempts, the people of California passed a “Death with Dignity ACT,” also called “physician assisted dying.” It was modeled on a similar law in Oregon which allows people deemed terminally ill with a life expectancy of no more than six months, confirmed by two physicians, to be given a prescription for a lethal number of barbiturates or opiates. The only gray area in the law is that patients are “capable of making and communicating health care decisions “ on their own. After making the request, they must also wait two weeks to make certain this is their wish.
The drugs are sent home with the patient to be taken at a time and place of their choosing, presumably after the pain of their disease has lowered their quality of life to nil.
California’s End of Life law is in effect but challenges remain; one is being considered by the state supreme court.
California’s law passed in 2016 after nationwide publicity surrounding Brittany Maynard. The UC Berkeley graduate with a Master’s in Education was diagnosed with brain cancer in January, 2014. When the cancer became more aggressive in April, she moved to Oregon and established residency. Oregon had passed a DWD law in 1997, following Washington in 1996.
Maynard died on Nov. 2, 2014, with pills provided by her doctor. She wrote a final Facebook post saying goodbye to friends.
Since 2015, some 218 people in Oregon have qualified for the act and have received a prescription to end their lives.
In 2017 in California, 577 individuals qualified and received life-ending prescriptions. Of those, 374 died from ingesting the drug(s). Most, 90 percent, were age 60 or older and 83 percent were in hospice or receiving palliative care. This is not euthanasia, which has a history of abuse.
I need only a few sentences about euthanasia. This would be the direct involvement of a physician in the death of the patient. Even if the doc had the patient take the pills in his/her office, it would qualify. For years euthanasia, in the form of a one-way trip to the O.R. with an anesthesiologist, has been legal in Holland. Dr. Jack Kevorkian’s carbon monoxide machine is euthanasia.
Such procedures should never be legalized; they’re the first step on a slippery moral slope. Consider the early 1940s when the Nazis euthanized roughly 70,000 mentally and physically disabled people, calling them “mercy killings”.
Many people will not like my support for the Death with Dignity Act; some will see a parallel with laws permitting pregnant women the choice of terminating their pregnancies. We feel pro-Choice see the seem for those who are terminally ill to be the masters of their own death.
The doctor and a consultant agree that the person is 18 y/o, has a terminal disease (not just cancer) that is generally lethal within six months (generally not followed) and being of sound mind with a psychiatric evaluation if necessary The first laws required a one month period for the patient to return and still wish PAD. That is being changed to 48 hours as some patients will die before one month.
PAD expedites candidates above to receive a cocktail of medications written as a prescription by the doctor. That is filled by the pharmacy and the patient must be able to take the cocktail at such time as suffering/pain becomes unbearable..
Euthanasia, which with PAD has been legal in Belgium, the Netherlands, Switzerland and Luxembourg since first passed in 2002, allows for the doctor, usually an anesthesiologist, to directly inject lethal medications intravenously in the hospital. However, that in-hospital part is changing.
