I failed to appease pain during her life, so she died terribly

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 41st 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 pyrrhic 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.

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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  • Felicitasz

    This is horrible. These are the moments when I once again decide that I will never complain about anything whatsoever.

    • usvietnamvet

      Complain away Your pain no matter how small is just as important as the “big pains”.

  • EmilyAnon

    What a terribly sad story.

    What concerns me as a patient is that even with a living will stuck in a hospital folder, family members can challenge the patient’s EOL instructions of no heroic efforts. From what I’ve read, doctors or hospitals fear a lawsuit so they comply with the family’s wishes over the patient’s. It sounds like a living will isn’t ironclad. Have you ever heard of this happening? And how would you handle such an event?

    • weakanddizzy

      EmilyAnon,
      Yes this happens. Dead people never sue doctors. Their families do.

      • EmilyAnon

        My concern is whether the threat of a lawsuit will cause the patient’s living trust wishes to be ignored.

        • weakanddizzy

          Living wills are frequently vague. That being said, if the patient can’t speak then the physicians must rely on the family to do the right thing. Frequently it takes days if not weeks for families to process and deal with their own grief and guilt before they understand that what is happening to their loved ones is truly against the patient’s wishes. Physicians who act to carry out the wishes of a patient ( eg. no heroic measures) who can no longer communicate those wishes, do so at their own risk. Again, dead patients never sue their physicians. Their surviving family members do.

          • EmilyAnon

            I’m sorry, but I don’t know where your opinions are coming from? Are you an attorney? If so, you seem to be advising that living wills are worthless, with no fear from providers if not honored. As I have given what I thought was an iron clad living will to my oncologist, I will run your opinion by him. Also, it would be most welcome if Dr. Salwitz could comment on this.

          • Jo.

            I, like EmilyAnon, would love to know
            more about Living Wills and their validity in life-or-death situations. I am 40 years old and I have
            one too, mostly done due to my medical heath issues and illnesses, which was completed by an
            attorney many months ago. It concerns me immensely that my wishes may not
            be taken into consideration when I’m dying despite there being (what I thought)
            a legally binding will in place. My Living Will has been done to ensure that my loved ones are not burdened with making
            difficult medical decisions on their own or through the courts, as I don’t want my life to be prolonged whether it is from illness
            or even in a freak accident. Period. My family is aware of my Living Will and knows
            my preferences, as I have vocalized them countless times, in hope that they fully
            respect my wishes. Also too, I feel reassured having one in place, as it can save them any such (unnecessary) medical expenses and emotional trauma. Yet, if physicians don’t take a patients wishes into consideration in dire situations despite them having a Living Will due to fear of being sued by their families, then what is the point of having one done by an attorney?

          • usvietnamvet

            Living wills should never be vague. We’ve talked with our kids and let them know what we expect. We’ve chosen the son who will do as we asked to be in charge..

    • meyati

      In this state, you can have DNRs posted thought the house and in your wallet, but if EMTs are called, they are required to resuscitate the patient. I’ve asked the counselors that handle this-about this-and they tell me it is untrue, but then I run into someone very bitter that the EMTs revived their parent and the parent is in a nursing home dying again from cancer. I’ve told my family to take the dogs, so they aren’t put down for eating me-stay gone for a few days and then come back and call 311. You need to check with more than the doctors.

      • usvietnamvet

        I no one lady who had tattooed on her chest DNR if you do resuscitate me I will sue and I have a great lawyer.

    • usvietnamvet

      then maybe those of us with living wills need to start suing doctors and the hospitals.

  • jussmartenuf

    What a tragedy and so beautifully summarized. As i personally deal with the vagaries of aging i am further motivated and compelled to do more to touch those about me with kindness. Aging is a difficult process as we see our youth and vitality diminish. Thank those caregivers and loved ones that make it as comfortable as possible.

  • cyb pauli

    This says more about the disgusting traditions of misogyny and female disempowerment than it does about medicine.

  • Mark S.B.

    My dad terrorized my dear Mom and I when I was just a kid. My Mom would scream at him to stop gambling we have no money for food for the kids. He became enraged when he lost his football game and my dear Mom kept screaming at him.

    I saw my Mom take many beatings from my dad. I started to step in between my parents when I knew she was about to get hit by my dad and I started to take the beatings. I was just 6 years old and this lasted till I was 12 years old.
    I just didn’t want to see my dear innocent Mom get hit anymore. Drinking ,gambling, drugging ,its all a disease called addiction.

    Funny thing is I was so scared I never felt the pain of the beatings I took.

    • usvietnamvet

      There are no simple answers. Not everyone is an addict.

  • Jhayden

    As someone who has worked with dying patients for years, the missing piece seems to be the lack of intervention offered by a Clinical Social Worker. This professional may have been able to sort through so many of the very burdensome issues of guilt and loss suffered by this family in order to help to ease their mother’s last days. This is not an easy task or one completed in one session but several meetings with a clinically trained social worker may have offered an effective solution.

  • Suzi Q 38

    I am the “bossy” sibling. Within each nuclear family, there is a “boss” of all the siblings….a hierarchy, so to speak. Find h/her. H/she will convince the others to let their mother die peacefully.

    Sad story, but there is nothing that can be done about a woman that had too many children with a jerk of a man that was abusive to her, and probably to her children as well. In spite of an arranged marriage, she had her choices. She probably stayed because she worried that her children would be alone with that abuse, and she would not be there to buffer or help the children if need be.
    Or, she could have realized that if she left, she would have no house to live in and they could not make it monetarily without his salary.

    We rarely know the true story, as we were not there…plus, he is dead and not here to defend himself.

  • usvietnamvet

    It’s a shame we’re so scared of drug addiction that we deprive people of real pain control which is achievable without addiction. The war on drugs is a failure (just look at Portugal who wont heir war by not continuing it) Each day veterans commit suicide due to lack or proper pain treatment. I will be ending my life when the pain outweighs the happiness. Sadly because of stupid laws I will have to leave my home and die alone.

  • jere14

    Physicians must stop such torture-like end of life interventions. A difficult life does not mean a harsh death if healthcare providers have concern for the person. A lot of money is spent for end of life interventions, something like 25 percent of all healthcare expenditures. I believe that this drives the whole thing. Fear of lawsuits by the family is a really a minor concern. The court system gives high favor to large medical institutions.

  • lissmth

    States are getting more and more aggressive in demanding an end to “too much” pain medication. I’ve had two surgeries and each time, my pain was not controlled. I dread ever having another, and I foresee the time when the suffering in this article becomes more and more common.

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