Only hope

Ellen died a clockwork machine, restrained by Versed, fed by nasal tube, secretions in bags, and as her blood pressure dropped intravenous pressors accelerated in dose until blood squeezed from her extremities left fingertips dry and black as coal.  Death occurred on the 41rst hospital day, after 27 minutes of scripted, six rib fracturing, 360-joule electric shock CPR.  A brutal case by any measure, worse because advanced cancer had always given Ellen no chance to survive.

Futile, painful, invasive and abusive medical care occurs frequently in the lives of oncologists and intensivists.  Often doctors communicate badly or the family has so little experience with dying that they are unable to cope, unable to make decisions and cling to pyritic fragments on a yellow brick path of barren hope.  However, Ellen’s case is different and reminds us of the ability of the past to intrude on the present and the effect of guilt on decision.

In 1963, Ellen was given in a prearranged marriage; she was 16.  She moved to the United States and raised five children, who in turn begat eight grandchildren.  She worked hard and had a successful, if relatively simple career, as a checker and then manager in a local market.  Instead of happiness and fulfillment, Ellen was cursed for five decades with mental and physical abuse in the hands of a misogynous alcoholic husband, who coped by hurting her.  Ellen survived because of love for her children and commitment to their happiness and safety.  For Ellen, because of her culture and her responsibility, leaving was never an option.  In the words of one of her daughters, “she had a terrible life.”

Last year, “the monster finally did something right, finally helped her … the SOB died.”  After half a century, she had a quiet home and family that loved her.  At age 66, there was the chance to live in peace and safety.  It was at that moment she coughed, and Ellen began to die.

As cancer ripped through her body, this family could not let go.  It was so unfair; a cosmic cheat.   If ever their god owed a miracle, it was now.  But, no deliverance came.  The disease destroyed Ellen, piece-by-piece, organ-by-organ, moment-by-moment, pain-by-pain.  Her kids, always at the bedside, clung to hope born not of ignorance, but of righteous anger built over 50 years of torment.  The same way they had gotten by for all those decades, praying and hoping their father would be kind or simply drop dead, they begged now for another chance for Ellen and perhaps for each of them. They hoped for mercy and life; redemption for years of agony.

There was no happy ending.  I failed to appease their pain during Ellen’s life, so she died terribly.  In the sullen cramped hot funeral home, they stared blank at a sealed casket, trying to fathom what had been lost, guilt made brilliant by the confusion of those last days.  Unable to repay the sacrifice of many years, her children found no meaning, her headstone a monument to loss built of suffering. Perhaps, the only gift was all of them, five children who loved Ellen, loved each other and preserved a few precious memories.  Outside, grandchildren played in the snow.


  • Chris
    So desperately sad! We see too much of this in Africa where the women are scared to reveal their cancer because of the stigma attached to the disease and battle on under awful conditions until it is too late.
    • James Salwitz, MD
      For many people around the world, cancer remains a disease of shame. The macabre export of cancer from the "first" to the "third" world has not yet been accompanied by outreach or cultural education. The suffering which results because of our failure to seak help or to accept the need of others, is probably beyond our ability to comprehend. Thanks very much for your comment, jcs
  • Powerful, moving, and tragic in so many ways.
    • James Salwitz, MD
      It most definitely broke my heart. jcs
  • I do hope Ellen's children and grandchildren take her life as a lesson that life can and should be better. Certainly death should not be so painful but a peaceful passage. Thank you for reminding me of the struggles of others.
    • James Salwitz, MD
      It is strange to hope, as I do, that the grandchildren forget a part of their past so that they do not carry forward anger. If they hold a lesson of sacrifice, perhaps they will give forward support and love. jcs
  • Ellen Levine
    This whole experience must have been so difficult for you to go through with this family. Does the process of writing about it and sharing the story on your blog help you to gain some perspective? I hope so!
    • James Salwitz, MD
      Perhaps not as much perspective, but balance because of the opportunity to make other people aware so that they can plan and protect their families. Of course writing itself, like any art, has a cathartic affect. At a theoretical level psychoanalysts would say that we are the most creative when dealing with issues around mortality and death. Thanks very much for your concern, jcs
  • amh
    just need to say, we need to stand in her defense, in the defense of the innocent.... and liberate them to allow her voice.... amh
    • James Salwitz, MD
      You are absolutely right. However, the practicality of doing that in such a case is prohibitive. As long as the family has legal standing, no judge, in my experience, will override their wishes. As others have commented, advanced plannng can help, but once you descend down into this pit, it is hard to go back. jcs
  • Pam
    Thank you for reminding us how important it is to do advanced health care planning. However it is necessary to communicate our wishes with those who will likely make some of our final health care decisions.
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