The most difficult question

20141027_101624Doctor-assisted dying is not a choice for ill people in my state. Nor is it an option nationally, as it is in Switzerland, Belgium, the Netherlands and several other more enlightened countries.

Many people will immediately protest: “But obviously, suicide should never be legalized or encouraged.” To which I reply, as a person with terminal cancer, “My desire to take an early exit is a completely different thing than a healthy person who commits suicide.” I want only to hasten the inevitable and painful death that already looms on my horizon; I do not seek to end a healthy life filled with possibilities.

Speaking rationally and without depression, and after a lifetime of considering the ethics of the question, I would choose physician-assisted dying in a heartbeat, knowing what I am soon to endure. But it’s not legal here.

(Warning: skip the following single paragraph if you are easily horrified.)

I have carcinosarcoma, also called Malignant Mixed Mullerian Tumor, which is so rare that there is little research being done on it, and no cure. After living with it for a year and a half and enduring major surgery and various chemotherapies, I’m now in the terminal stage of the disease. The cancer has spread throughout my abdomen and into my liver and lymph glands, but this won’t be what kills me. A large inoperable tumor is embedded low down between my intestines and is impinging painfully upon my bladder and rectum. The rapid growth of this tumor will soon pinch off these vital systems and leave me completely blocked, unable to urinate or defecate. The tumor is growing so fast that my belly already resembles that of a woman five or six months pregnant; this distension will increase swiftly in the weeks to come. Any surgical attempt to correct the blockage would only temporarily extend my life while exposing me to even more continued suffering.

Quite calmly and rationally I ask you: why is it against the law for a physician to help me make a dignified early exit with my head held high? Why should control over the end of my own life be dictated by other people’s emotional and religious scruples? An assisted death with dignity would spare me horrible suffering and would prevent my family and friends from seeing me waste away to a skeletal form with a hugely distended belly. Why do lawmakers feel so certain that dying people should have to endure their full quota of pain?

In this country it’s legal to put down a dying pet. In fact, it’s considered to be the most humane solution to ongoing pain. So why does our government compel human beings to go through the kind of suffering that we would never allow in our own cats and dogs?

Perhaps you happen to believe that human life has a sanctity that must not be tampered with. That’s fine, and I respect your religious values (although I must point out that the Bible nowhere contains the phrase “sanctity of life”). But an enlightened society should not allow followers of a single religion to enforce their religious beliefs upon others, nor should those religious tenets be encoded into the default government over all Americans. I believe that subjecting me and my family to extended suffering serves no useful governmental purpose and displays a profound lack of compassion.

I seek only peace, and a quick end to my suffering. And this is exactly what’s being denied me. I believe that the Swiss, the Belgians and the Dutch have it exactly right when it comes to compassion for the suffering: after a waiting period of several months, and a close vetting of the medical records, patients are allowed to gently and painlessly pass away in the presence of their family and friends. We need this option in the United States.

Please share this text with your legislators and your governor.

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35 thoughts on “The most difficult question”

  1. Carrol, You continue to amaze me with such clarity and beautiful thoughts during such a challenging time. Your writing should be read by thousands, your life vision is one to be honored.

    Lynn

    Liked by 1 person

    1. Thank you Lynn! I’m currently transcribing my cancer journals from the past year and a half, and embedding my blog posts as I go along. When I’m gone, Frank and Miles can decide what to do with the document.
      wishing you the very best,
      Carrol

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  2. I agree with you 100% Carrol. You are such a wonderful writer. Wishing you peace and love during this time. Much love to you. Julie

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  3. Thank you for writing this, Carrol. And I am surely going to pass it along to legislators and governors. I have thought about this very issue a lot in the last couple of years. My conclusion mirrors yours. Sanctity of life should be judged as a personal decision, and not the decision of government or religion or anyone else. Quality of life is my measure. When you take all quality of life away, it’s time to go. Period. I’ve told my sons this, and they understand. I appreciate your thoughts on this matter. My best and most compassionate thoughts are with you, Carrol. Peace to you and your family.

    Liked by 1 person

  4. Carrol, i read this entry with great compassion for what you are going through and will go through. After 5 years of very painful Lupus and Firbromyalgia I too have become very frustrated with how our government decides what illnesses can have which drugs for pain relief. It too is wrong. No one should have to needlessly endure pain. Wanting to exit this life on your own terms should be your option given the next volley of what will come your way. There should be compassionate care doctors to help in this decision. I wish you peace and life on your own terms. Thank you for photographing our home all those years ago. You made it shine!
    Peace,
    Patricia

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  5. Dear Carrol,
    It is times such as this that I find my vocabulary in adequate– and dream of being Thomas Hardy– but alas his spirit has not filtered down to me. You are so amazing in your ability to articulate concisely, factually but with the power of personal knowledge the thoughts so many of us have had– and share in your opinion. Unremitting pain, which I have experienced sporadically in the last two years should not be acceptable let alone tolerated no matter the stage of life. But to lose ones dignity at a time that should give peace to not only you but those around you is unconscionable. May you continue to find the strength of spirit to show the world ‘how to die’ and the ability to find legal ways to alleviate the pain. May you find the butterflies and flowers at the end of your journey.
    Peace, Harriet

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  6. I have to agree with you, Carrol. As painful as it is to face for those left behind, it comes down to the person who is suffering and what is ultimately in their best interest. You have stated quite clearly what I feel as well. If all I would have is pain and suffering, why should I be required to be kept in that state until death finally comes. I live with chronic pain, as I’m getting older I’m becoming more crippled and less able to be mobile. I have had cancer, there has not been a recurrence, whether there will be or not is beyond my ability to see. As I am more and more limited physically I find it removes more things from my life, it is simply more than I can do at times. I am starting to become a burden to my spouse, not something I want, however, I am not completely helpless – although, that is a probably outcome. I also have absolutely no medical coverage of any kind, so having access to any form of medical relief is absent. When the time comes, I also would choose to go quietly and peacefully with some shred of dignity assisted on the beginning of my next journey with an end of the pain and the concurrent sufferering. I have also know several people who would have made that choice, had it been available to them, and not been left to lay in agony for the time until death finally overtook them. Thank you for your openness and courage, also thank you for the beauty of your words. I too will pass this along. Blessings.

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  7. I too have a terminal cancer diagnosis and have been ruminating on this very issue recently, now that I am in hospice and the reality is closing in on me. Our whole system of medicine is so archaic and senseless for the most part.There are a myriad of books on how to live, yet none on how to die….Each of us with terminal illnesses should be allowed to chose how and when we want to die…I do not want to endure the unecessary pain or have others watch me…Nor do I want to lie in a non-communicative state supposedly pain free while under the influence of vasts amounts of morphine that will eventually kill me… Why is it ok to have me linger with morphine which will eventually cause my dealth…but a quicker means assisted by a physician using the same or similar drugs is considered wrong…None of this makes sense to me…Carol, I thank you for writing down these important words and truly hope your suffering is non-existent….The journey for both of us continues. I only hope my last two words are the same as Steve Jobs. He supposedly said “oh Wow!” as he passed…I want to be wowed by something when I go as well…Wishing you a kind, pain free safe passing filled with love…

    Liked by 1 person

    1. Dear Lorri, may your hospice experience be swift and as painfree as possible. Thank you so much for taking the time at this point in your life to write to me; it means a lot to me. May we both find a “wow” waiting for us! I hope so. Hugs to you, Carrol

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  8. I hope you know what effect you’ve had on the lives of those you’ve touched.. You are heroic, you are eloquent, and you represent the very best of what human beings can and should be. I’m proud to know you, Carrol. Honestly.. so proud. I’ll share your message.. as far and wide as I can.

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  9. Carrol, I couldn’t agree more. We are more humane in our treatment of animals than of our fellow humans. I am glad to share your message, and I hope the rest of your journey is as peaceful and painless as is humanly possible. You are in my thoughts.

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  10. You did a great job of explaining why it’s imperative for people to have the option of assisted suicide. It seems absolutely sadistic to deny this right to people. Your words have even more weight due to your diagnosis.

    I’m sure you’re aware that Indiana has legalized sawed off shotguns. Those are great for killing the unwilling and that seems to be ok with many of the legislators who rule us. It’s just horrible.

    Liked by 1 person

  11. Your words are so clear and thoughtful. I agree totally. Years ago, in 2001, my dad was dying of lung cancer. We were with him at home. He was in agony without morphine. The hospice volunteer said “It’s easy for families to make a mistake and give too much morphine. That happens a lot.” I understood what she was telling me. My dad died the next day, so I did not have to think if I could do that for him.

    And Carrol, may God bless you and keep you, and your family, too.

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  12. Carroll, Thank you for your clear and eloquent words. They have touched me. I will save them and use them to promote death with dignity. May your passing be peaceful.
    Mary Mahern, M.D.

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  13. Thank you for your words and your work. Your beautiful energy is a force for good in this world and shall always be. I wish that we could all take a little piece of your burden and share it so as to make it light.

    I sent on your words to Governor (http://www.in.gov/gov/2752.htm) and First Lady Pence (http://www.in.gov/gov/firstlady/2337.htm), Lt. Gov. Ellspermann (http://www.in.gov/lg/2333.htm), and to Senator Stoops and Representative Pierce (http://iga.in.gov/legislative/find-legislators/).

    Peace, light, love.

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    1. Thank you for your support, Heather! I am so glad to have known you. 🙂
      And thanks, too, for these useful links. I already wrote my legislators, both state and federal, but stopped at the Governor because work was mounting up. Now I can resume my task! I hope many other people are doing likewise.
      hugs to you, and to Dave. Good health and happiness to you and yours.
      all best,
      Carrol

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  14. Canada’s Supreme Court unanimously passed and signed a ruling allowing physician assisted death for not only terminal patients but all those in intractable pain from disease on February 2015. Canada has with this ruling joined the small number of countries that are getting it right. Unfortunately, implementation could take a long time, but it is , the first important step in, what I strongly believe, the right direction.

    Here is an excerpt from their statement:

    “We do not agree that the existential formulation of the right to life requires an absolute prohibition on assistance in dying, or that individuals cannot ‘waive’ their right to life. This would create a ‘duty to live”

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  15. Sorry that you don’t live here. Though I have not researched the pertinent information as to how easy it is to fill out the forms in Oregon for assisted passage, (forms? Is that really what this comes down to? The proper forms for the final exit so those on this side of the veil have legal cover?) this is one of the few states in the U.S. that has it. There is the option of hypnosis which might help with the pain and passage. but the way of death in this country seem to be bent, bent towards hyper medication. I just don’t know what to say.

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    1. You’re right, Chessley, a Hospice nurse told me two days ago that I was “under-medicated.” I was deeply offended. I’ve been going light on the narcotics because I want to keep a clear head while finishing up my projects. And then there’s the bureaucracy involved in registering for death. I wish my state was like Oregon, but instead it’s governed by the Religious Right. A Neanderthal would have more compassion on a dying human being than a Hoosier lawmaker. XOXO

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  16. Much love to you Carrol. I wish this was not happening to you on so many levels. It has been decades since we have seen one another but I have thought of you often. In fact I think of you every time I see a parking meter to this day. Love, Peace, Luck and Clarity, Chris

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  17. Dear Carrol, I’ve only recently learned of your struggle and have been inspired by reading of your grace and clarity in the midst of it all. I have always been amazed by your unflinching ability to chronicle your life and the lives of those who you have encountered in this journey, dear scribe.
    My thoughts are with you these days, as we Quakers, do I’m holding you in the light.
    Love and peace,
    Emily Bonus

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    1. Dear Emily, it is so good — stellar even — to hear from you! I have wanted to write you so many times but held off, thinking “if I have no good news to share, best not to do so.” I’m so glad you found me instead before it was too late.

      hugs to you, and light, and peace, and love.
      Carrol

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