Condemned by privacy

Posted by on Jan 7, 2014 in Cancer Care, General Medicine | 7 comments

Condemned by privacy

Not long ago a woman in my community, who was a patient of an esteemed local oncologist, died.  Let us call her “Beverly” and let us say she died of “breast cancer.”  I am familiar with the details of the case because one of my partners saw her in consult, but HIPAA and common courtesy forbid me to be any more transparent.  Beverly was very popular in our town and many attended her funeral.  It was there I learned, to my astonishment, that Beverly’s death had occurred because of medical error.

As I listened at the viewing and service, it was common knowledge that Beverly had suffered massive liver failure because of an overdose of a chemotherapy agent.   Apparently, according to many with whom I spoke, she had a small amount of treatable cancer and should have survived many years, perhaps even been cured.  Massive inappropriate doses of a drug had melted her liver, and she died swollen, confused and yellow.

This was very distressing news.  Beverly had been under the care of a brilliant, contentious doctor, who had saved the lives of many men and women.  This shared knowledge will no doubt affect his future practice and most of the people who understand the terrible events, as well as their friends and relatives, will not recommend him.  However, what disturbed me the most, really cut to the core, is that these facts, this community finding of guilt, was not only the refuse of rumor, it was absolutely untrue.

What had killed Beverly was the cancer.  Breast cancer, as it very often does, had spread to her liver. This resulted in liver failure.  She had indeed received chemotherapy, but it was in an attempt to save her liver and extend her life. The therapy had not been successful, her liver was destroyed by cancer, and Beverly had died.

Thus, a gifted doctor, who gave compassionate and state-of-the-art care, is condemned by the very community for which he sacrificed and is sentenced by the privacy which every patient and doctor values.  He cannot respond or explain and neither can any other professional caregiver who was involved in the case.  Her family might be able to give him support, but they are fragmented, mourning and confused by the falsehood frenzy.  Grief and guilt are fertile ground upon which rumors flourish.

Whispered reputation deconstruction occurs all the time and is often propagated by the viral contagion of the Internet.  Committed, hard working caregivers are tried and found guilty in the court of errant popular opinion and have no practical or legal way to counter.  Because their reputation is soiled, communities lose access to doctors who are right down the street.

In the day-to-day practice of medicine, most doctors do not have the time or tools to address social slander, and instead move on to the next patient, attempting always to give the best possible care. While frustrating, and increasing the chance of burnout, rumors may motivate the physician to work even harder to counter the bad PR.  Perhaps the net effect may be to improve the quality of care, but since the doctor  d may never hear about the negative rumors, he or she is simply left with fewer patients and less opportunity to contribute.

As a physician and patient, I would suggest healthy skepticism when we hear scuttlebutt about complex cases about which we do not have intimate knowledge.  Accepting and passing on negative information, which you cannot confirm, may do great harm.  Not only can this hurt the memory of people we love and cripple the coping of their families, but may deprive us of valuable medical care when we need it most.

7 Comments

  1. I am a close friend of one of your breast cancer patients and subscribe to Sunrise Rounds. Negative information, as you point out, abides in the medical world. Gossip is destructive and although it is only words, can really increase the pain patients, family, friends and medical professionals endure during the progress of this disease and serves no purpose. Your dedication and humanity shine through your posts. Thanks for all your thoughtful comments.

  2. Yes HIPPA is a two edged sword.

    On the positive side however, marketing research has documented that social memory is short and that unless a business/provider is a repeat offender over time, that people “forget”. In the case of medical providers there will be others giving testimonials to the contrary, which will induce doubt. While the provider may have a temporary drop in new patients, that is unlikely to continue unless people mount a concerted and planned “attack”. The fact that there will be no malpractice suit should also make people start to doubt the rumor.

    Correcting misinformation also helps and HIPPA hobbles that. What the family can do, when writing thank you notes is add a sentence that the cancer had spread to her liver, they appreciated the efforts of the professionals, and they are grateful to the oncologist for his compassionate and competent care of their relative. If this is a small community, misinformation can be countered indirectly by having the media (TV, papers) do a short series where another oncologist addresses how “breast cancer”, when spread to the liver, is uniformly fatal because it is stage 4 and because of the effects of an eventually non-functinoning liver on the human body and how cancer at that stage it isn’t about cure, it is about lengthening life, hopefully quality life, until the cancer is unable to be held back. If they then had families, including someone from this family, talk about dealing with stage 4 cancer, how compassionate and competent they found their oncologist and how as much as they had hoped for a miracle, the reality is that stage 4 cancer kills, eventually. If they couldn’t/wouldn’t do that then have the oncologist on the show, in the article talk about hypotheticals where sufficient details of this patient are included in the hypothetical that anyone with a functioning brain might reconsider their interpretation of the events, given the parallels.

    Would take someone orchestrating this, probably not the family, but it would be one way to counter what is going on.

  3. I’m a little confused. Surely the oncologist informed Beverly that her cancer had spread to her liver and that that would likely prove fatal despite the chemo? Did she not share this information with her family and friends? I’m not surprised that the larger community got the story wrong—one can count on that happening in any situation of even slight complexity. But what’s odd here is that they were all gathered together and apparently circulating a terrible misunderstanding with none of the closer family or friends saying a word to correct them?

  4. Liz-there are many-mostly rural communities that do not have a short memory or move-on. Also, the saying, “where there’s smoke, there’s fire”. Dr. Salwitz said the family is fragmented, A note will not stop the fragmentation, then if the note is written by a family member that believes the doctor killed the relative forget it.

    My daughter and I caught an auntie banging her arm against a door jamb at a nursing home. She kept looking around for staff, and banged her arm again. We visited from out of state, so we weren’t familiar faces to a very old person. . We reported this to the home manger before we visited with auntie. We told the family and where the new bruises would be. Auntie said that an aide was abusing her, and that her daughter-in-law had abused her. There were a few people that still insisted that auntie was abused. The daughter-in-law and husband were grateful. The pastor was ready to kick them out of their church for abusing their recently widowed mother, the auntie. I know exactly what Dr. Salwitz. is saying. Rumor and somebody wanting attention has always messed up people’s lives- family and doctor.

    Auntie wanted her son to divorce his wife of 10 years. Most of the family didn’t want then around. The family wanted that innocent aide at the home to be fired. Some things were fixed, but it was never the same.

    • Wasn’t Beverly’s eyes getting yellow first? Blood work didn’t show
      her liver was elevated?

      Dr.S…..I feel something is missing in this story.

  5. Much more often, physicians get a free pass.

    One of my friends died of cancer last year. Before he died, he suffered devastating damage as a result of a true medical mistake (NOT a side effect). Through a series of errors that no one caught until his wife went through receipts, he received a five-fold overdose of chemotherapy drugs. This incapacitated him, inflicting much suffering on his family. His wife had no idea this had been a medical error until one of the physicians asked her a question and she consulted her records. When she related the exact drugs and dosages, the physicians did not believe her at first, until she produced copies of her records. Only then did they apologize and get her the help her family so badly needed.

    The culture of medicine is to deny, deny, blame the patient for the poor outcome, and deny some more. Let’s see a majority of physicians own up to their mistakes, and maybe patients will feel more sympathy for those who are wrongfully accused.

    • I would heartily second that and add that neither the AMA nor any medical organization should have the ability to conceal (or seek legislative protection to conceal) mistakes by setting a patient settlement’ dollar amount below which mistakes can be withheld from the public.

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