Monday, May 29, 2017

We Too, Shall Pass

We too, shall pass.

Unless you work with the dying or in a hospital, CA Senate Bill 128 (SB-128) likely passed with little notice in June of 2016. With it, California became only the sixth state in the union to enact an aid-in-dying law.
I had keen interest in this law for I have been witness to many deaths both in and outside the hospital. Further, I had a friend dying of breast cancer that had metastasized to her bones - a notoriously painful death - and she was hoping to avail herself of SB-128 and its cocktail. Just in case SB-128 failed to pass or she didn’t live until it did, she was stockpiling pain pills, informing me she had “an exit strategy” if the pain became too great. I applauded her courage, convinced I’d do the same.

You may remember Brittany Maynard, a beautiful, vibrant and young Californian, who at age 29, was diagnosed with glioblastoma, an aggressive brain cancer. She suffered from debilitating headaches and seizures as her cancer grew. She moved to Oregon to take advantage of their Death with Dignity law, all-the-while advocating for California lawmakers to get their act together.
Brittany wrote, ““I considered passing away in hospice care at my San Francisco Bay-area home. But even with palliative medication, I could develop potentially morphine-resistant pain and suffer personality changes and verbal, cognitive and motor loss of virtually any kind.
Because the rest of my body is young and healthy, I am likely to physically hang on for a long time even though cancer is eating my mind. …an end-of-life option for mentally competent, terminally ill patients with a prognosis of six months or less to live. …I could self-ingest to end my dying process if it becomes unbearable.
When my suffering becomes too great, I can say to all those I love, “I love you; come be by my side, and come say goodbye as I pass into whatever's next.” I will die upstairs in my bedroom with my husband, mother, stepfather and best friend by my side and pass peacefully. I can't imagine trying to rob anyone else of that choice.”” 

Brittany died in 2014 and testified for SB-128 before the state legislature in 2015 from beyond the grave, in a message recorded prior to her death. “Every one of us will die. We should not have to suffer excruciating pain, shame or a prolonged dying process. The laws in California, and 45 other states, must change to prevent prolonged, involuntary suffering for all terminally ill Americans,” Maynard said in the video.
Dr. Robert Olvera, a bill supporter, described watching his daughter with leukemia, fight the disease for 17 years. “I watched my daughter decompose,” Olvera testified.
Christy O’Donnell, a 46-year-old Republican lawyer and ex-L.A. Police Department sergeant who was featured in People magazine, said she had terminal lung cancer and expected to die within months. “I do not want to see my daughter watching me gasp for air,” O’Donnell said.
“It gives me a great peace of mind to know that I will not be forced to die slowly and painfully," said Wallner, a 52-year-old single mother from Sacramento with advanced colon cancer and metastasis to liver and lungs. "The agonizingly traumatic image of me suffering will not be my family's last memory of me."

The argument is over the right to die with a doctor’s help at the time and in the manner of your own choosing. To date, only a handful of European countries, Colombia and seven American states allow some form of doctor-assisted dying. But draft bills and ballot initiatives are progressing in 33 states and several other countries. (1)
For some, the argument is moral and absolute. Deliberately ending a human life is wrong - because life is sacred and the endurance of suffering confers its own dignity. For others, doctor-assisted-dying is the first step on a slippery slope where the vulnerable are threatened and where premature death becomes a cheaper alternative to palliative care, nursing homes, long term care, board and care and institutions.
These views are deeply held and deserve to be taken seriously. But liberty and autonomy are also sources of human dignity. “In a secular society, it is odd to buttress the sanctity of life in the abstract by subjecting a lot of particular lives to unbearable pain, misery and suffering.” (2) 

Opponents fear the laws would be used to pressure the sick into killing themselves, “widespread euthanasia” they cried, labeling it physician-assisted-suicide. Right-to-Die has been lawful in Europe for decades and in Oregon since 1994 = decades. Many checks and balances are put in place to prevent patient coercion and suicide. The evidence does not reveal a slippery slope toward cavalier killings. Rather, the evidence leads to the conclusion that most laws for assisted-dying should be bolder and broader.

Modeled after Oregon’s law, let’s first examine what California’s law requires.
To be eligible to request a prescription for the aid-in-dying drugs, an individual must:
Be an adult (18 years old or older).
Be a California resident.
Have a diagnosis from his/her primary physician of an incurable and irreversible disease which will, within reasonable medical judgement, result in death within six months.
Be able to make medical decisions for themselves (be of sound mind) as determined by health professionals.
Voluntarily request a prescription for an aid-in-dying drug without influence from others.
Be able to self-administer (eat, drink, and swallow) the aid-in-dying drug.
The request must be made solely and directly by the patient to the attending physician, and cannot be made on behalf of the patient through a power of attorney, an advance health care directive, a conservator, health care agent, surrogate, or any other legally recognized health care decision maker. (3)

People with neuromuscular diseases tend to be excluded from using SB-128 as many lose the ability to “self-administer” long before their final six-months. Those with dementia are absolutely excluded by the requirement to be of sound mind. This sound mind requirement then, also excludes all with cognitive disabilities: mental retardation, psychiatric illness, traumatic brain injury, autism, etc.

At Kaiser, we created voluntary teams of physicians, nurses, social workers, chaplains, and others to guide patients through Gentle Passing with knowledge, respect and sensitivity. Because these requests are relatively infrequent, it was thought that designated teams could become expert in the process. It was also agreed that this responsibility should not fall solely upon our Hospice and Palliative Care teams.
Based on the Oregon experience, Kaiser’s northern California region anticipated:
207-414 patient inquiries
103-207 requests for End of Life (EOL) cocktail
67-119 cocktail administration
Not yet one-year into Gentle Passing, I am unaware of the actual numbers.

Back to my girlfriend dying of metastatic breast cancer; let’s call her Jill. Jill was beyond her 5-year, cancer window: she had completed breast cancer therapy and close monitoring for 5-years with no recurrence. Some years ago, we attended a weekend workshop in Pacific Grove. Our group made a short walk through Asilomar, to the Pacific. Jill’s back hurt and as we continued, her pain grew, forcing a retreat. She saw her doctor the following week for what seemed like unusually severe back pain. Subsequent tests revealed metastatic lesions on her spine. 
Jill’s ensuing battle with cancer lasted another four years; it gave her lots of time to think and plan. She held a party, more than a year before her death - to celebrate with friends while she could. Unbeknownst to attendees, it was a memorial party, a living wake. Jill emceed her party, asking friends to say the things they might say at her funeral. Her friends rose to acknowledged her and reminisce; the event was filmed.
Jill put her affairs in order and appointed a “death squad”, close friends to help her as her time drew nigh. They helped with bill pay and meal prep and in the end - reading friendly, supportive messages sent via Facebook. Facebook became her means of remaining connected to her community once she could no longer leave home and then - bed. She was very open with her feelings and sensations. “I feel weird today. This dying thing…” Sometimes she had sooo much pain - and nothing helped to ease it.
Jill picked a “kick the bucket day” that was widely publicized. She asked friends to join her in rewatching her memorial party. At the appointed time, she drank her cocktail and slipped into sleep - then death, surrounded by her loving death squad. They posted a message on Facebook when Jill had passed. 
Jill’s death was the most transparent death I’ve ever experienced. I appreciated sharing in her thoughts and emotions. In contrast, I tend to hole-up when things are not well or right. Jill lived out loud. No going quietly into that good night - she went with a bullhorn, sharing her view of the path ahead. That takes courage and a commitment to stay connected.

In their own words: Listen to the reflections of two women who were interviewed before their deaths on Insight with Beth Ruyak of Capitol Public Radio. In the broadcast, retired Hospice Chaplain Ellen Robinson Haynes asserts, “We put a lot of effort into planning births and into planning weddings and all kinds of transitional moments. Planning an assisted-death is an exquisitely intimate and beautiful process. This is not suicide… this is a rational, well-grounded choice to make for somebody who is already dying. (5) Link below.

No matter your view of right-to-die laws, patients with terminal illness agree that they want autonomy (like most of us) - over their lives and deaths. People hope to die quietly in their sleep, to drift off. Statistically, only 10% of us do that, so… hope all you want. 30% of us die quickly by catastrophe du jour: accident, suicide, sudden cardiac death, massive stroke, etc. But 60% of us have the dwindles, where we slowly dwindle in our abilities and capacities until we die by some chronic disease. 
A small percentage of people suffer with unrelenting, intractable pain OR shortness of breath so severe that they can’t even lift an arm to feed themselves (patients say this kind of air hunger is terrifying) OR complete paralysis (including breathing) while the brain remains active and aware OR like Brittany Maynard - disabling headaches and seizures OR any number of horrific maladies that we cannot imagine enduring.
SB-128 is for them, for that small cadre for whom living has become an unbearable torture and who want out.

Notice that the demented are excluded by this law - and appropriately so. Many of you know my father died with Alzheimer’s disease - HE was gone years before his body gave up the ghost. Eventually, he no longer recognized those who loved him. He thought he lived amongst strangers and tormentors. Simple requests and bodily functions made no sense to him. In the end, without the ability to understand words or their meanings, he became reactive, defensive and offensive - like a threatened, cornered animal. Those were difficult years in which the kitchen knives were hidden - a consequence of just one of many horrors.
When he stopped swallowing, the deathwatch began. A hospital bed was rolled into the middle of their living/dining room, the only place their small condo could accommodate its bulk. There, he tossed and turned and mumbled and moaned and eventually became still, and breathed, until that too slowed and finally stopped. Ten days… TEN DAYS… Have you ever watched someone die for ten days? Why is this okay? I wouldn’t do that to my dog! In fact, that might be considered cruelty to animals. Honestly for me, his passing was long overdue and a relief. He would have never wanted to live that way and I would never wish it upon anyone. 

Brittany Maynard’s Oregon physician, Dr. Eric Walsh says, "When somebody is facing the end of their life, shouldn't they be in control? Shouldn't I be able to help them when they're suffering and the burden of their suffering becomes intolerable to them?”

It is my hope that future Advance Directives can be even more proactive. That I could direct my medical team to “administer the cocktail” when certain conditions are met. i.e. if my Montreal Cognitive Assessment Tool score is so low that my cat would do better? Time to go bye-bye. A little too Soylent Green for you? I get it, obviously your choices will be different. The important part in all this is that the patient gets to choose; the patient has a say.

Supreme Court Justice Ruth Bader Ginsberg’s husband Marty, himself a lawyer and suffering with metastatic cancer wrote to his wife:
June 17, 2010
My dearest Ruth,
You are the only person I have loved in my life, setting aside a bit, parents and kids and their kids. And I have admired and loved you almost since the day we first met at Cornell some 56 years ago. What a treat it has been to watch your progress to the very top of the legal world. 
I will be in JH Medical Center until Friday, June 25th, I believe. And between then and now, I shall think hard on my remaining health and life. And whether on balance, the time has come for me to tough it out or to take leave of life because the loss of quality now simply overwhelms. I hope you will support where I come out but I understand you may not. I will not love you a jot less. Marty (4)
Marty died on June 27, 2010.

Thank you Marty, for getting to the heart of the matter. I don’t expect to change any minds with this blog. But I do hope to stir your deepest thoughts and bring you to some place of compassion for the dying - to give them voice and honor their choice. For we too, shall pass.

P.S. - please excuse my absence. My bathrooms have been remodeled and/or refurbished. By necessity, I've had many boxes strewn across the house and furniture shoved into corners. I find it impossible to write amongst the chaos. But that all ended approximately 1 month ago.

3) Coalition for Compassionate Care of California

4) I Carmon & S Knizhnik, Notorious RBG, Chap 7.

5) Choosing the End of Life Option on Insight w/Beth Ruyak on Cap Radio.