When does false hope become malpractice?

10:11am Tuesday, June 5, 2006:  This was the moment Marge was told the mammogram showed a mass, which was probably breast cancer.  “But, don’t worry, the tumor is very small and with surgery and radiation, you will be fine.”

1:55pm Wednesday, March 25, 2009: This was the moment Marge was told that the breast cancer had spread to her ribs. “But, don’t worry, the tumors are small, and with hormones, you will be fine.”

4:43pm Monday, February 14, 2011: This was the moment Marge was told that the cancer had spread to the lining of her abdomen. “But, don’t worry the amount of cancer is very small, and with chemotherapy, you will be fine.”

5:00pm Friday, December 6, 2013: This was the moment Marge was told that despite all the aggressive therapy she had received over the years, despite doing everything anyone had ever asked, the cancer was “terminal.”

11:15 pm Friday, December 6 2013: This was the moment when, late, in the dark, completely alone, Marge realized that for at least four years, ever since the cancer had come back in her bones, that the cancer had been only treatable and not curable and that the doctors, “had lied to me, and never told the truth,” and she vowed to sue them for every cent they owned.

I met Marge for a second opinion and confirmed that the cancer was growing rapidly in her abdomen and there was little that could be done. She was shocked.  She was shocked to find out she was dying, and just as shocked to learn that her doctors had never explained that once breast cancer spreads it is almost always incurable and that every bit of treatment since the cancer had metastasized had been palliative.

Through her tears, Marge asked why her previous oncologist had not told her “the truth.”   I explained that frequently doctors try to preserve hope, and tend to overstate the benefit of treatment and overestimate the likelihood and length of survival.  Doctors may not have faith in each patient’s ability to cope with hard news and may believe that patients will give up.

Devastated to find her time was so short, likely weeks, Marge was even more upset she had failed to use the final years and months of her life well.  Instead of retiring early and focusing on her grandchildren, instead of addressing precious items on her bucket list, instead of helping her family plan for a life without her, she had continued to work full-time and had devoted significant effort to activities that in retrospect seem frivolous.  Like all cancer patients, she had been aware that life was precious, but Marge now focused her righteous and legal anger on the doctors who had failed to tell her that her life was almost gone.

The nature of the law means it is unlikely Marge can bring a successful lawsuit against her doctors for offering false hope, instead of cold reality.  There are two elements to proving malpractice.  The first the patient (“plaintiff”) must prove that the doctor (“defendant”) made an error and the second element is that the error lead to harm.

A doctor accused of being too hopeful, will probably explain that in his or her professional judgment, the patient could not emotionally handle more truth than was delivered and the doctor will claim that when he tried to be more direct, the patient denied reality and clearly only wanted to hear positive news.

Even if Marge could prove she asked for clear statistics and prognosis and that the doctor deliberately lied, it will be difficult to prove harm. Marge did not receive bad physical anticancer care, but she believes instead she received incomplete information.  Her claim would be that she lost the opportunity to choose the life she might have wished, not that she lost the chance to live at all.

The doctor will claim that the patient lived happily, enjoying family, work and involvement in the community and therefore the treatment was successful. The doctor will state that in his or her experience given the terminal nature of the disease that it is very likely the patient would have become miserable and angry had more information been shared. In effect, the doctor will say that given a terrible situation, this was the best outcome.

The question for me is not whether a judge and jury would find against the doctor, rather the question resides more in the court of our hearts.  Do not each of us have a right to decide our own futures?   Should doctors act as our paternal guardians and decide, by the default of guarded communication, how we will live our lives?  Are we so pathetically weak, like suckling babes, that we cannot guide our own lives?

Should not each doctor, at very least, say to each patient, “how much do you want to know,” and not assume we will melt in the harsh glare of bad news?  Is telling difficult truths the sole responsibility of the doctor or is the burden on each of us to have the courage to ask?

Over the years, I have seen patients become obsessed with malpractice actions as they approach the end of their lives, consuming irreplaceable energy and time.  While I was sympathetic with Marge’s anger, I encouraged her to move on.  Each moment is precious and must be used well, and not on a vendetta which would not be resolved until long after she was gone, and likely not in her favor.  Her focus must now be on her family, friends and on the quality of her life; but anger and loss will no doubt taint her memory.

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

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  • Steven Reznick

    Patient deserved to know her true prognosis at each step. The truth is you never know what the patient was told and what they comprehended and perceived. I am not blaming this on Marge’s comprehension. I accept everything you say and agree her prognosis and options should have been clearly explained to her . Its just not that easy. I think of a very anxious wife of a physician who was admittedly cancerphobic. Her husband asked me to allay her anxieties and not overplay the possibilities each time she discovered a lump or bump. When she developed an oral lesion and was referred to a specialist immediately to work it up with much hope and encouragement she claimed I was too low key about evaluating it even though there was no delay in evaluation or referral. You sometimes can not win . I do believe all patients who are competent need to be told the truth and their options.

    • Suzi Q 38

      I would not want my husband to know more about my condition than I did. I don’t care if he was a physician. It is me who controls how much information is given to other family members.
      HIPA rules???

      My husband would not be deciding how much information about MY cancer is given to be via MY doctor. After all, it is my body and cancer.
      I would be depressed for a unspecified time after this prognosis, but believe me, I would start enjoying my life a bit more and doing more things for my family if I knew.

      I trust you physicians can sense how much to reveal to any given patient.

      I can not fathom not knowing.

  • David Gelber MD

    Over many years of providing surgical treatment of cancer patients I’ve noticed that my patients focus on what they want to hear. I always do my best to clearly explain what has been found at surgery, what stage a cancer is and what the prognosis may be. I try to balance the good with the grim.
    Even my surgical patients with advanced disease have some hope that other treatments may provide additional quality time. This hope is very important to them. I have also noticed that the patients rarely hear the entirety of what I’ve explained. It usually takes 2-3 discussions until all the implications of their cancer are completely understood.

  • http://www.youtube.com/watch?v=B5OWRRJh-PI&list=FLYJP3MjZQ-BJugrvyegfQ7Q&index=1&feature=plpp_video Alberto Knox

    We will all die. that is the truth the clock is ticking for all of us. Yes, many people can’t face personal mortality. that is why they create religions that promise a blissful eternity, reincarnation, or “moving to another plane.”

    We are meat. we are special because we are self-aware. The world and each of our lives is a wonder to behold, a very unique and experience. Of course doctors are hesitant to deliver the truth. Just look at how people respond to the obvious truth that your personality and awareness dies with your body. We, as a culture, lack maturity.

  • querywoman

    “Destroy” is embedded in the language of cancer care. More realistic words would state how a person can live better, more comfortably, as long as possible with a body that has a cancer.

  • Suzi Q 38

    I think that the best and worst prognosis should be revealed early on.
    Travel! Hang out with your children, grandchildren, friends and other family members.

    I would have given the other doctor a mouthful and make him learn something…that I am not stupid. I could understand the fact that I could die, so give me the truth.

    I deserve that.
    If a doctor gave me 6 months, I would assume that it could be more or less than that.
    I would get a second, then a third opinion.

    If it all was consistent, I would understand and go out enjoying life every day.

    If I didn’t die when I was supposed to, I would call my doctor up and say:

    Hi! “I have to make an appointment with Dr. M. Can you believe that I am still alive??? Yes, I am still here to torment him a bit longer. Don’t make it too many months in advance, as I might not make it…”

    Some of us can take it. Just ask us.

  • DoubtfulGuest

    Please take my comment with a grain of salt, as I have no personal experience with cancer or anything immediately life-threatening. I do have strong feelings about the moral questions in your post, that “court of our hearts” business. I’ve experienced deception by a doctor, about a fairly serious medical issue. I’m not sure how to recover emotionally, and the medical outcome is not yet known.

    As Dr. Gelber touches on below, people often need multiple chances to process information. Think how often this is true in our daily lives, particularly with anything stressful. We might “only hear what we want to hear” at first, but then given a chance to think, we often respond very differently next time we have the opportunity to discuss.

    I know that benign/benevolent deception is often considered part of good medical care. “False hope” is maybe? the most well-intentioned and easily understood form. My opinion on this case is in line with Suzi Q 38′s. The time pressures on medical visits can falsely lead doctors to believe that it’s best (and indeed the patient prefers) if the patient is not given the whole truth. After all, the whole truth + Q & A is time-consuming! Also, I’m concerned that it’s harder than most doctors would like to admit, to separate what patients want/need from their own legitimate emotional needs.

  • DoubtfulGuest

    Yes…excellent point. I don’t understand suing over this, but I also don’t agree with the exhortation to “let it go”. The major lesson from this case is that doctors need to get better at assessing what patients want to hear. As Dr. Salwitz suggests, when in doubt, it’s best to just ask. Since Marge’s doctors didn’t give her that courtesy, they ought to listen to her now, and look her in the eye while she explains that they made incorrect assumptions about her. If doctors learn from this, it could save future patients a great deal of suffering. And make the doctors less vulnerable to getting sued…just sayin’.

  • Patricia

    By not giving a patient the truth (rather than what a Dr. assumes she,the patient, wants to hear) the Dr. is robbing the patient as was done in this story. If the true messages are not getting across, then docs need to figure out why not and how to change that. Part of this is the belief in the Dr-patient/parent-child paradigm. I don’t think docs are ‘bad’ people but I think they should stop acting as if they are overburdened or as if they have all the answers and always know what’s best. In my life, I’ve experienced a relative being given false hope which created so much loss and unfinished business later on. I also hear countless stories from people who have had doctors just not express that they give a darn when they can’t find an answer (and then drop their patients into a void of no-care). Docs ought to figure these things out rather than blaming malpractice and patients not listening. Those are cop-outs. (It’s extremely hard to sue a doctor for malpractice; even when it is a deserved suit).

  • drrob8091

    This is why I made a conscious decision years ago to never sugar-coat anything. I tell the patient the facts straight-up, their odds, the likelihood of cure, and the fact that “cure” means “you’ll survive five years” to oncologists. I have been fired by patients who claim I am too straight-forward, but I rest easy in the knowledge that they at least know what they are up against. I got into a screaming argument with our oncologist (who will NEVER, EVER stop treatment) over a similar situation a few weeks ago, when I told her patient that none of what we were doing was going to save her life. Patients deserve the truth, no matter how hard.

    • DrJA

      I agree. I tell my patients that I will be straight forward, even if it is not what they want to hear. This is almost always met with relief. The other side of this is the number of times an elderly patient is dying and the medical people know they will only last a few hours or days and no one tells the family. At one hospital where I work, several doctors just avoid telling the families about the seriousness of their loved ones conditions and I have actually had nurses arrange consults for my help because they know that I will tell the family what is going on. It seems cruel to me to do otherwise.

      • Pat Brown

        It IS cruel to hide the truth, but we know that as a whole Americans do a very poor job of understanding that this life is finite. We have hidden death so well behind closed doors and pretty words that it is possible to pretend it doesn’t still come into our lives, sooner or later. As a nurse, let me thank you for doing and saying what the bedside nurses are often prevented from in the face of active dying. A decade of hospice has me praying for honest doctors and pain & symptom control…

  • kathy kastner

    Oh the complications that come with the imprecise nature of medicine and human beings. I’m in favor of re-framing ‘hope’. From hoping for a cure or to defy death, to hope for living the best life possible, for the rest of whatever life holds. Even so, the human spirit is such that no matter what the framing or re-, we rail, grieve, deny, blame. Thanks for sharing this thought=provoking post.
    Kathy Kastner

    http://www.BestEndings.com