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    Last August, my sister Betsy asked if I knew anything about using Bitcoin, a form of virtual currency.

    It took me awhile to realize why she was asking: She wanted to buy a lethal amount of drugs and she didn’t want the purchase to be traceable.

    Commentary - in-story logoA beautiful, outgoing, talented artist, Betsy was diagnosed with ALS in July 2013. It’s a cruel disease that slowly robs a person of the ability to move, speak, eat and, eventually, breathe. There is no treatment, let alone a cure, and there likely won’t be for several years.

    Early on, she knew she’d rather take her own life than succumb to a disease that kills most of its patients through suffocation. Some ALS patients use ventilators and feeding tubes to prolong their lives, but that’s not what my sister wanted. Over the last year, I watched her increasingly struggle to eat and speak and do the simple things the rest of us take for granted, like scratch an itch or brush a stray hair from her eyes. No longer able to walk, she spent most of the day in bed.

    “I am losing strength in my arms and hands quickly,” she wrote to me in an email last year. “I don’t want to live out my life paralyzed, eating through a tube in my stomach and communicating through a machine. I’d rather be free than entombed in my body.”

    A month before she asked me about Bitcoin, an aid-in-dying bill had stalled in the state Assembly’s health committee. Three of the six committee members, under pressure from the Catholic Church, and despite having watched parents die from a terminal illness, refused to support it.


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    (I grew up Catholic; I went to Catholic school where we were taught Jesus’ final words on the cross, when he could no longer take the suffering: “Father, into thy hands I commend my spirit.” Tell me: How’s that not aid in dying?)

    Thanks to Assemblywoman Susan Eggman, the End of Life Option Act was resurrected in mid-August 2015, passed and signed into law by Gov. Jerry Brown the following month. Brown is Catholic, and many were unsure whether he’d sign the bill. In a poignant signing message explaining his decision, 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.”

    The law didn’t take effect until June 9 this year, but my sister was willing to wait so she could end her life safely and legally.

    In early July, Betsy emailed her closest friends and family, inviting them to her house in Ojai for a two-day celebration.

    “You are all very brave for sending me off on my journey,” she wrote in an email to her guests. “Thank you so much for traveling the physical and emotional distance for me. These circumstances are unlike any party you have attended before, requiring emotional stamina, centeredness, and openness.”

    There was just one rule, she wrote: “Do not cry in front of me.”

    More than 30 people showed up to help send Betsy on what she referred to as her next “great adventure.” We ate pizza and tamales. There was music, booze and lots of photos. Under her guidance, I’d put sticky notes next to items around the house, explaining their significance. She invited everyone to “take a Betsy souvenir” to remember her.

    Photo by Niels Alpert
    Photo by Niels Alpert
    Betsy poses for a photo with a friend.

    At around 6:30 p.m. Sunday, July 24, all three of her truly incredible caregivers helped her change into a kimono she’d bought in Japan. A family friend drove her in his new Tesla up a hillside next to the house, where we’d placed a white canopy and a makeshift bed. She wanted to fall asleep as the sun was setting.

    My sister is an example of exactly what the law intended to do: allow a dying young woman the ability to assert control over the chaos and uncertainty of terminal illness. She turned death into a reason to celebrate, and she was there to enjoy the party.

    Photo by Niels Alpert
    Photo by Niels Alpert
    Betsy

    Opponents of the aid-in-dying law have argued there’s potential for abuse: that chronically ill people could be coerced or compelled to take their own lives so they’re no longer a burden. But the law has safeguards to ensure that doesn’t happen. I encourage anyone who doubts this to read the California Medical Association’s guidelines for physicians treating patients who want to use the law.

    After following my sister through the process, I almost want to say the law’s requirements are overly cautious, yet I understand why that caution’s necessary.

    Opponents have also told stories of miraculous recoveries: During last September’s Assembly vote, one lawmaker talked about her son, who came down with an infection and was put on life support. Doctors told her there was no hope, yet he ultimately recovered. She offered this as proof that a doctor’s opinion can’t always be trusted.

    Yet a case like that lawmaker’s son’s wouldn’t meet the law’s criteria. Patients must be able to make their own medical decisions. There are multiple safeguards in place to ensure the decision is voluntary and the patient’s illness is terminal. No one can simply go to a doctor and request a prescription for a lethal amount of medication.

    And if someone wants to fight to the very end, that’s a personal choice. Both paths are equally brave.

    Even with the law now in place, there were still some logistical hurdles. Seconal, the drug Betsy’s doctor recommended — kind of the aid-in-dying gold standard — wasn’t available. We were given different reasons why, depending on which pharmacy we called — that it was backordered for three months, or that it was so infrequently prescribed, a pharmacist who filled a prescription for the necessary 100 pills would attract unwanted attention from the DEA.

    Since Betsy’s death, I’ve spoken to Kat West, national policy director for Compassion & Choices, a group that advocates for aid-in-dying laws. She told me that anyone unable to obtain Seconal should ask their pharmacist to call Compassion & Choices Pharmacist2Pharmacist line and they will help them find it.

    Instead, Betsy was prescribed a combination of morphine, pentobarbital and chloral hydrate — not ideal, but we did our best to mask the taste with coconut milk, sugar and a little salt. She took the medication at around 6:45 p.m. and within a few minutes, slipped into a coma. Four hours later, she peacefully departed for her next adventure.

      This article relates to: Commentary, Must Reads, State Government

      Written by Kelly Davis

      Kelly Davis is a freelance journalist focusing on criminal justice and social issues. Follow her on Twitter @kellylynndavis or send an email to kellydaviswrites@gmail.com

      33 comments
      Deborah Ziegler
      Deborah Ziegler

      My whole heart goes out to you and your family. What a brave, thoughtful woman your sister chose to be. Brittany Maynard, my daughter, like your sister chose to die much as she had lived.... with planning, purpose and bravery. Take in all the love and support that will come your way. Let it settle into the sad corners of your heart. Try not to allow judgemental comments made by people who push their personal beliefs on you to take seed in your heart ... not even for a fraction of a second! Betsy exercised a fundamental human right to die in peace. Mercy, grace and love are evident in your writing about her bright life and her brave death.

      R Seher
      R Seher

      Good story.  For one person.  Before bitcoin.  Before  some laws were passed.  There were quite a few/couple  who did not have time in advance  to decide. No time for a party.  No time, or little if they managed to connect on a phone call for goodbyes .  NO ravaging disgusting disease, but, rather a situation which could not be corrected.  OR have a good outcome.  The situation was 80 or more stories in a building on the NY skyline And the decision was to jump out of the building to certain death. 

      .  An icon by itself, it would become a monument that day -  Sept 11, 2001    They will live in memory too. 


      Thom Hawkins
      Thom Hawkins

      We are a death phobic culture that goes to great lengths to deny the inevitable and avoid grieving the essential tragedy of life and avoid seeing death as life's ultimate manifestation.  Stephen Jenkinson says it much more eloquently in his award-winning book, Die Wise (2015, North Atlantic Books).  Highly recommended.  Check out his website, Orphan Wisdom, and his YouTube videos and TedTalk.  Thanks for this article, which I will share with my family and frends, who know my final wishes as I enter my eightieth year and many of whom share the desire for a graceful exit.  May the memory of Betsy's courage keep us in touch with our mortality, and may Kelly keep giving more of articles like this that enrich our lives with its clear-eyed and full-throated humanity.  May the tears keep flowing for all of us.   

      Mary Webb
      Mary Webb

      ALS, it is not a forgiving disease and just a rough terminal disease. This story is exactly the ideal use of the death with dignity law that gives someone hope to not suffer endlessly. I am so sad that such a young life has been lost just like my dear friend 25 years ago to ALS. My dear friend had to be with her family and child for many weeks of unending suffering and she did not have that sense of celebration. I fully support this option to choose how you die and when if your two doctors say the your disease is terminal and you have 6 months to live.

      Teresa Pultz
      Teresa Pultz

      Thank you for sharing your wonderful experience.  I am a health care worker and fully supported this legislation.  It is a beautiful story and shame on those who do not understand.  Your sister gave everyone including herself a treasured memory.  I would hope to be able to do the same with my loved ones should I be in a similar situation.


      Cindy Mitchell
      Cindy Mitchell

      Kelly, so sorry your sister had the ALS to begin with and admire her courage.  I don't normally comment on articles (or even take time to read some) but I read yours all through and it was so humanized.  The comments and things people said are so inflammatory, I just want to apoligize for those who for whatever reason were compelled to write the things they did.  Thank you for sharing your story about Betsy and the best to you.

      Donna Warlick
      Donna Warlick subscriber

      Thank you to those who are supportive of this woman's choice, and her sister who, however painfully, has shared the story. 


      As for you who feel like it is your right to judge the choice of a suffering, dying human being, shame on you!  After you have spent a few months slowly dying and facing a death of prolonged suffocation, hurry up and send a comment before you die and tell us how virtuous you are.Assisted suicide is the very quintessence of compassion.


      As for the person who is disappointed that the author did not share some gut-wrenching, cosmic wisdom, but "only learned about the law," you are just too ridiculous to comment on.

      Deborah Henderson
      Deborah Henderson

      No need for a 'gut wrenching display, but a personal statement may have been helpful to people opposed or on the fence...

      Mark Kalpakgian
      Mark Kalpakgian

      @Donna Warlick  I'll repeat my comment below here since you seem to think I have no experience in this topic:  


      "Actually I did watch my mother--and other loved tones too-- suffer excruciating pain and die from cancer so no I'm not just intellectualizing it.  I've lived the experience through those I love and cherish most.  I watched a hero--my mother--live and in her suffering and death, she has taught me how to truly die with dignity.  I hope to have her same courage and bravery in the last moments of my life too.  

      Donna Warlick
      Donna Warlick subscriber

      To Deborah Henderson: Absolutely I did. I felt her pain in every word. Sorry you missed it.

      Deborah Henderson
      Deborah Henderson

      Gee, I'm dissapointed in your article. .. seems you only learned about the law?

      Mark Kalpakgian
      Mark Kalpakgian

      When you get through the emotional spin, the fact is she killed herself; she committed suicide based on a fear of future suffering.  This is not the meaning of courage and it isn't a proper reason to celebrate or something to boast about as if it were a good thing.  


      Its more "culture of death" which is always antithetical to the common good of society and to the individual.  It's an overt rejection that suffering can have meaning and purpose and even bring good out of unfortunate circumstances.  Suffering and pain aren't always bad, especially when it's viewed a a larger picture or in the complete tapestry of one's life.  Additionally, it's a type of playing God where the individual now decides when and how they will die.  


      From a health perspective, the article never mentions that suicide requests from people with terminal illness are usually based on fear and depression. Most cases of depression among terminally ill people can be successfully treated.  It also fails to acknowledge many individuals with chronic illnesses or disability who have been given incorrect initial prognosis or have been misdiagnosed as terminal...which is intrinsically problematic.  


      The choice this article exalts as good is really a form of escapism, a rejection of life, and a running away from the positive elements found in suffering. It leaves a legacy of fear, death and control, instead of one of love, sacrifice, courage, and perseverance.  


      Compassion has always been to help one through their suffering, not to end it by killing the person.

      Jessica Fiorella
      Jessica Fiorella

      @Mark Kalpakgian And who are you to decide what is proper to do or not, what is right or wrong? You have done a wonderful job at intellectualizing every aspect of this article but when rubber finally meets the road, not you or anyone is able to express in words what is really like for the person with the terminal illness and why they decide to make the conscious decision to end their life, until you find yourself with a terminal illness of your own and wishing you could even begin to write or verbalize it.  


      As for, “The choice this article exalts as good is really a form of escapism, a rejection of life, and a running away from the positive elements found in suffering. It leaves a legacy of fear, death and control, instead of one of love, sacrifice, courage, and perseverance.” You clearly did not know Betsy Davis and what she stood for. Fear, death and control is what we live in right now and love is about freedom and heals pain. And in my view that is precisely what Betsy Davis did. She was compassionate enough to herself to understand, accept and support what she felt was best. It was her life and her decision. Not yours or anyone else's.

      Mark Kalpakgian
      Mark Kalpakgian

      @Jessica Fiorella @Mark Kalpakgian Actually I did watch my mother suffer excruciating pain and die from cancer so no I'm not just intellectualizing it.  I've lived the experience through those I love and cherish most.  I watched a hero--my mother--live and in her suffering and death, she has taught me how to die with dignity.  I hope to have her same courage and bravery in the last moments of my life too.  


      And the truth is that for thousands of years in cultures all over the world and even up until now, cultures have come to the common consensus that killing of all kinds, including mercy killing and suicide is wrong.  This is written in all of our hearts.   And as far as I know, all of the world's major religions condemn suicide of all kinds too.  So it isn't just me.  


      And when you profess that killing is only the individual's decision, what grounds do you have to oppose suicide of any kind?  It's a slippery slope with no going back.  


      I believe the basic moral principle holds true for all time and even up to the present moment: "never use an immoral means to achieve a good end or the end does not justify the means.  


      Life is beautiful, even in suffering.  

      Jessica Fiorella
      Jessica Fiorella

      @Mark Kalpakgian @Jessica Fiorella You have all the right in the world to choose, feel and believe as you please and I really do wish you the best in having the courage and bravery if/when you get to encounter suffering in your death. However, as you take pride and honor in the suffering your mother chose to live through, I take great pride, honor in being there for Betsy when she passed surrounded by loving family and friends. In fact, I feel even deeper admiration for her having made her decision, stick by it and still smile until minutes before she went into the coma. And yes, I do find that Betsy's decision was brave just as you feel your mother was brave for choosing to endure the pain of cancer until the end. As Kelly Davis mentioned, "both roads are brave." And I also, do not believe that Betsy used an immoral means and I also strongly believe that she is not and will not suffer for the decision she made. I strongly believe that she is off to continue an even higher/bigger purpose that our intellect could possibly begin to grasp. And as she, I do not believe that the end of our physical being ends our life, perhaps as we know it but it does not end our essence. And now she is free and even better for it.


      * I am not certain where you might have understood that I oppose suicide of any kind or professing that killing is an individual's choice. It seems to me that it is your belief system that opposes suicide.

      Mary Webb
      Mary Webb

      Mark, no one is asking you to follow this option to have aid in dying. It is a personal decision.

      Mark Kalpakgian
      Mark Kalpakgian

      @Mary Webb None of us are completely isolated and all decisions have some community ramifications--whether they be children, extended family, friends, neighbors etc.  Absolute autonomy is not the fullest expression of freedom, but true freedom is the ability to pursue and achieve the good.  Freedom should always be accompanied by responsibility.  


      When a person commits suicide (and that's what this is by definition), it has negative consequences for all of society, including that individual. 


      Life is beautiful, suffering can have meaning, and in the end what is needed is absolute trust and unwavering confidence in the loving arms of God to carry us through all trials, even the most unbearable.

      Jessica Fiorella
      Jessica Fiorella

      @renata arvaj There is no voice of reason in this delusional stance. Far from it. Best of luck to you on your suffering. We will compassionately smile at you through it.

      Stacie Solorzano
      Stacie Solorzano

      @Mark Kalpakgian Who do you think you are...are you terminally ill and dying..??   No, you are a Catholic-Want-to-be-Holier-Than-Thou, but you have  NO clue...you even posted on your FB page, without CONSIDERATION to her family and friends......


      Mark Kalpakgian
      August 11 at 9:44pm · 

      This is an extremely sad and disturbing story about a women who used the new California assisted suicide law to kill herself and to throw a two day party before it all came to a close.

      While I feel deeply and grieve with this family, to take one's life is never good, admirable, or noble.

      Life is beautiful, suffering can have meaning, and in the end what is needed is absolute trust and unwavering confidence in the loving arms of God to carry us through all trials, even the most unbearable.

      As I personally witnessed one friend dying of cancer in the midst of unspeakable pain, the priest turned to him and said, "son God has carried you this far, and he isn't going to abandon you now." And he didn't. When we lose control, God steps in and carries us through.

      YOU quote this like YOU know what HE is gonna say...and you don't have freaking clue...!!  WHO are to judge??  Are you MY God/Goddess.??  So instead, you post stuff like this...THIS WOMAN JUST LOST HER SISTER (and probably like ME, her BEST friend) and YOU have the nerve to sit there and judge...I think NOT...!!

      If you can not say something supportive...THEN SAY NOTHING AT ALL...!!

      Mark Kalpakgian
      Mark Kalpakgian

      @Stacie Solorzano @Mark Kalpakgian I find it ironic that you are critically judging me for making judgments but that is besides the point. 


      The reality is we all make judgements every day.  And every law in a sense passes judgment.  Moreover, we elect people who impose their will and pass judgments on others.  (e.g., think Governor Brown using his veto power).  Passing judgments on actions is just part of everyday life in society (e.g., a parent telling a child not to lie, an employee getting fired, laws against perjury in court or speeding on a highway or being required to vaccinate your child etc.). 


      When an author publicly shares their personal views in a public forum such as this, it's expected that they are inviting commentary, disagreement, and even the public's feedback--both positive and negative.  


      The important thing is not to judge someone's soul.  That is for God and only him.  As for the rest of us, we are called to use our reason, our experience, and even our faith at times to make judgements on actions each and every day.

      Kelly Davis
      Kelly Davis

      @Mark Kalpakgian While you're entitled to your opinion, Mark, it's incredibly offensive for you to suggest that my sister lacked the courage to endure suffering. She lived with ALS for three years. She suffered a lot, and she did it with dignity, grace and more courage than I could ever muster. 


      She did not commit suicide. Suicide is an intensely personal act of self-destruction. Nor did she fear death. What she did fear was being trapped in her own body, completely unable to move or communicate. I think that's a reasonable fear.


      Compassion requires empathy, and I see no evidence of that in your comments.



      lorisaldana
      lorisaldana subscriber

      Thank you for sharing this. I will send copies of the article to colleagues who supported this legislation.

      As an Assemblymember, I supported the original "Compassionate Choice" bill. It failed to become law under a previous governor.


      Last year, when it was reintroduced, I was asked by sponsors to be listed as a supporter to the new bill that ultimately passed, and made your sister's choice possible. I was happy to add my name in support, and appreciated Gov. Brown's willingness to sign it into law.


      Having spent time with friends and family members in their final hours (two under similar conditions to your sister's), I know a little bit of the experience you have described in loving and tender detail. I also learned, from medical professionals in my family and in hospice centers, that simply having legal access to these drugs- whether they are ultimately used, or not- can provide palliative relief, and help relieve chronic pain and anxiety. 


      All these reasons make this choice a decent, compassionate policy.


      Thank you again for describing how it was intended to be used.



      Caron Golden
      Caron Golden

      Kelly, what a beautiful story about your sister's strength and courage and a law that allowed her to control her life's end. She was lucky to have a sister who supported her, celebrated her choice, and could chronicle her end with clarity and love.

      Don Goyette
      Don Goyette subscribermember

      Thank you so much, Lisa, for sharing this. I'm fairly healthy now, but I'm also 83 years old and know full well that I could be a beneficiary of this law in the future.

      Dianne Lane
      Dianne Lane subscribermember

      Thank you, thank you for your compassionate and informative account of your sister's experience.  I'm in perfect health, but want to know all I can about aid-in-dying if I, or anyone I love, should need and want it.


      John Porter
      John Porter subscriber

      Great story !   As an aging citizen, I'm grateful for such a law.  You never know if you will need it yourself.   RIP

      sandiegosteven
      sandiegosteven subscribermember

      A powerful first person narrative of what truly is a decision of a lifetime.