Coming to Terms with Loss

February 11th, 2010 at 11:54 am by under News

There is a time after major loss when you question everything. There’s the shock and grief of course, and the obvious question, why.  But for me, it’s been more the “what.”  What if you did this, or that, would the outcome have been different?

I poured through medical records.  I ordered an autopsy.  I wanted to know what we missed, what turned my husband’s case from a set of seemingly manageable complications into a terminal lost cause. I was not use to seeing doctors dumbfounded.  When they told me after he went into respiratory distress that would not survive without a ventilator, I didn’t believe them.  If his lungs were so bad, why didn’t anyone mention a lung transplant, for example. After all the rescue attempts, why did the road stop here?

nuland photoIt was in my search for answers that I came across the work of Dr. Sherwin Nuland.   “Shep” Nuland, as he is known, is a surgeon and professor at Yale.  He  has written a series of books on the practice of medicine and  asks a deep questions of his profession.  Namely, have doctors, in their intellectual pursuit, lost the “art” of their practice, the one that began with Hippocrates and the great Greeks which considers first, the humanity of patients, and not just their survival outcomes.

My husband lived four and a half years after his cancer diagnosis but much of that time had been spent in pain and the pursuit of tackling one complication  after another.  The stem cell transplant cured his cancer but replaced it with something  just as grave, an illness called “Graft vs. Host Disease.”  It eventually destroyed his lungs.

imagesDr. Nuland’s book, “How We Die,” was one of the first things that helped me make sense of what happened and to answer that pervasive question, “what.”
What would have happened had we let nature take its course and not pursued such aggressive treatment?  Would my husband have had a better life in the end, shorter perhaps,  but better?

Dr. Nuland  talks about how he, too was wrapped up in the pursuit of “survival” when his own brother was diagnosed with cancer.   He shares stories of similar terminal patients and discusses with remarkable cander, the anxiety doctors have about  process of death.  If you ever spent any amount of time in an ICU ward with a loved one,  his discussion hits home.

I went to hear Dr. Nuland when he spoke at Fountain Street Church Tuesday night and had the pleasure of speaking with him after his talk (for once, snow pays off – on my way home, I ended up dropping him off at his hotel to spare someone else the drive).  He encouraged me to write about my husband’s case because he said it might be the only way I can make sense of what  happened. He mentioned something Valclav Havel once said.  “The best outcome is not necessarily what you want.  It is the one that makes the best sense,”  he told me.

Dr. Nuland is releasing an updated edition of “How We Die” in April.  It’s been 14 years since the original publication and while that seems like a short time, he says a lot in medicine has changed to warrant a new discussion.  I look forward to reading it and his new book, “The Mysteries Within:  A Surgeon Explores Myth, Medicine and the Human Body.”   Based on the turnout at Fountain Street Church that night, I imagine there will be many lined up to read it.   In the meantime, I invite you to share your stories about medical care in the final stages of life.  I imagine, as the population ages, that more and more of us will be walking in the same shoes.

11 Responses to “Coming to Terms with Loss”

  1. DonP says:

    Thanks for taking the time to record your thoughts. I know many of us miss David and most of us who knew him have a great story or two to tell. You and the kids have my prayers for peace and understanding.

    (oddly the advertisement on this page says “celebrate life share your memories, obituataries at woodtv.com” — search terms at work I guess)

    1. Anne Schieber says:

      Don:

      Thanks for your thoughts. I’m still hearing stories about David that I never
      knew. It helps keep memories fresh and alive.

      Anne

  2. DougB says:

    Thanks Anne for sharing your story and your husband’s. Very touching! I hope you pain eases! You and your family are in my thoughts and prayers along with all those the grieve.

    1. Anne Schieber says:

      Doug: We work hard on keeping David’s memory alive. Thanks for reading and your prayers. AUS

  3. Matt M says:

    Thank you for sharing this story. I personally have not had to suffer through a trauma such as this. I have friends dear to my heart who have and are. I will be sharing your blog with them. I wanted you to know by providing this content, you are helping others. So thank you. God bless you and your family.

    1. Anne Schieber says:

      Matt:

      Six month before David died, my dear co-worker, Dan Limbaugh too died from stem-cell complications. His widow was a tremendous support and I hope I can pass that on to someone else. Thanks for reading and passing on my story.

      Anne

  4. Scott says:

    On June 24th 2009 My 40 year old wife woke up not feeling well. By about 5pm I noticed the whites of her eyes were getting a little yellow. As a former paramedic I knew that this was a liver issue. We took her to Saint Mary’s hospital in Grand Rapids. They admitted her to a regular room and started treatment to counteract the high acetaminophen levels that caused her liver to shut down. On the 25th about 9am Dee called me to tell me that they were transferring her to ICU because of a blood pressure issue. About 10am she called me again to tell me they were putting in a central line to monitor the blood pressure more closely. I had a meeting and wasn’t able to be there yet. At 11am I got a text saying her body was going into shock from the liver failure and they wanted to intubate her and put her on a ventilator. I sent her a text and asked her if they could wait until I got there. I was on my way there. At 11:03 am I got a text saying “The doc is insisting. I love you very much” That was the last communication I had with my wife. When I got to the hospital the docs told me that she would be on the vent for a couple days while they stabilized her and then she would need to go to U of M for a liver transplant. At about 5pm they came in and told me that she was getting worse and they needed to send her to U of M right away. She was flown there that night and arrived at U of M at about 10pm. On the 26th we were talking to all kinds of doctors and transplant social workers and then they started seeing some decline in her reflexes and did a CT scan. Her brain was swelling and then her kidneys shut down. Apparently that is pretty common in acute liver failure but they put her on continuous dialysis. About 7am on the 27th the neurologists came in and we watched as they were checking all reflexes. She had no gag or Babinski reflexes. The pupils were not responding and there was no corneal reflex. At that point they told me that her brain stem was herniating because of the swelling. So in about 72 hours or so we went from healthy 40 year old woman to needing a transplant and then finally to becoming a donor! I made the call right then and told them we were going to let her go and to get me the Gift of life rep at the hospital. We donated tissues and bone and all the other things we could. She will have improved the lives of up to 50 people or so.

    I was fortunate because she and I had had many talks about what we would want in that situation. So I did what she wanted.

    Today would have been our 25th anniversary of being a couple and Valentines day would be 18 years married. I still ask what if and why and all the other questions that grieving people ask but I try to focus on the good that came of all this.

    I will definitely be interested in reading this book when it comes out.

    1. fansy55 says:

      Scott, my heart breaks for you. I am so sorry to hear about your wife, but so thankful that the two of you were able to help so many others. Praying for you on your first anniversary without her.

      1. Anne Schieber says:

        Scott:

        I am so sorry about your loss. Feel blessed that you and your wife had that discussion about end of life issues. David and I had informal discussions about life support but amazingly never put anything in writing. I think it was part of our denial about death and its very real possibility in his situation. It is a terrible burden to have to decide if and when to end life support. On that day, my husband started showing improvement! We asked him what he wanted, and he was able to respond with a few head nods. I encourage you to read “How We Die.” It may answer some lingering questions. God Bless, Anne

  5. Anne Schieber says:

    I want to share parts of this letter Grand Valley Health Plan’s Ron Palmer sent me. Ron shares with me this notion of “uber” medicine.

    “I am saddened to hear of your loss. I had a close friend who had a similar experience with a systemic reaction to a stem cell transplant two months ago. Your loss reminded me of all the questions I have about what more I could have done. He was in the health care field and got the best medical advice and the best medical treatment available; needless to say it was not curative.

    I also share with you the questions about at what place in the care of a loved one does the technology interfere with the art of living and consequently dying with grace.

    Dr. Nuland made the case in his talk on the history of medicine as being a historically healing art improved upon by an increasing dependence on medical technology. But I didn’t get the sense that there was a corresponding development in the empathetic “walking a mile in your shoes” that would seem so necessary to someone who is the recipient of that technology, especially highly invasive, risky technology like Bone Marrow Transplants.

    We have been working on exactly that dilemma which certainly peaked my interest in Dr. Nuland’s writing and resulted in our subsequent sponsorship of his talk.

    Anne, it sounds like you are experiencing very personally what is undoubtedly a tragic loss in your life which will find its own closure.
    The lack of closure that medicine creates through the application and success or failure of new technology and the hopes and dreams attached to it is a much broader social and cultural dilemma for which there are no “correct” answers. I’m sorry that we didn’t have a chance to speak at the talk; it appears that this is top of mind and heart for both of us.”

    I wrote back to Ron saying I wish in the course of their diligence that my husband’s health care providers had a very heart to heart talk with us regarding the “hope” we were buying. Who knows if treatment decisions would be different? When you’re under the gun, fighting cancer, there is little time for second and third opinions, let alone research in tracking down similar patients to see what their experience has been. That’s why I think we need to expose more of the consequences of aggressive medicine. We only hear the success stories.

    AUS

  6. jelz says:

    If David were able, he would tell you what a great job you are doing with all life has thrown at you – a truly amazing job. The next year may prove to be the hardest, but possibly full of more happiness than you have known in some time. Be happy, don’t worry.

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