Doctors are not the only ones who can keep a painful secret

I have written many columns urging doctors to be honest with their patients, especially about difficult news.  Too often patients are lead on false hope therapy rides, rather than empowered with honest information so that they can cope with their disease and future. Doctors are not the only ones who can keep a painful secret.

I admitted Sarah to the hospital late on Saturday night.  For over two years, she had been receiving chemotherapy, hormone therapy and recently blood transfusions, under the care of one my partners.  He had discussed Sarah’s limited prognosis on a number of occasions.  Now the breast cancer was spreading wildly, causing havoc through much her body.  In the bright fluorescent 3 a.m. light of the emergency room, her wasted body, obvious pain, visible skin lesions, agitated confusion and appalling lab tests, said it all.  Sarah had little time to live.

With the goal of confirming that everyone understood what was happening and all were comfortable with a palliative, comfort approach to care, I sat down with six family members in the ER conference room.  Around that tight space were her sister, with whom Sarah lives, her only son, 22 years old, a brother who works as a lab tech, an aunt and two uncles.  All live close and see her often.

Wanting to get the ball rolling, especially given that we were all exhausted at that strange hour, I started with the simple statement, “I want to speak with you so that you appreciate what is happening with Sarah and her breast cancer.”

There was silence.  A wheeled cart rattled as it rolled by in the hall.  A bulb flickered. Perhaps, I had not spoken at all.  Maybe, I was so tired that I imagined speech.

I repeated: “Sarah is very sick tonight, because her breast cancer is growing.”

Every face in the room registered a look of shock and confusion.  Did they not speak English?

The brother finally answered: “What breast cancer?”

They must be kidding, I thought.  I backpedaled.

“What do you understand has been making Sarah so weak and ill?”

“She has a bad wound on her chest from a car accident that won’t heal.”

“Why do you think she was seeing an oncologist?”

“To get help with the wound.”

To my astonishment Sarah’s family, who is obviously both geographically and personally close, had no idea she had cancer.  Sarah had concealed this terrible truth from all of them.  Bravely, stoically, she had fought the illness, handled every pain and made every decision, by herself.

The trauma on this family because of Sarah’s self imposed isolation got worse.  They had to understand the affects of a disease they never knew existed and decide that further aggressive therapy was futile or instead make a decision to “do everything.”  In other words, go from, “Sarah has a cut which won’t heal,” to, “It is time to pull the plug.” Not in weeks, days, or even hours, but right away.

To their great credit, after a lengthy discussion of what Sarah had experienced, what was likely to happen, what they thought Sarah would wish, and a moment of prayer, they were able to accept the disease as well as the grim prognosis. They asked us to give only comfort care.

Sarah’s son was devastated.  His father had died some years ago.  He felt that by “lying” to him, Sarah had been deprived him of closure.  Bereavement counselors suggest that final conversations include the words, “I forgive you,” “You forgive me,” “I love you,” and “good-bye.”  For him none of this was possible; Sarah’s body failed quickly; she was dead in less than a day.  His anger and confusion will take a long time to heal.

Why did Sarah walk that hard solitary path?  Of course, I really have no idea.  I suspect that she was a private person for whom the disease was humiliating. Perhaps the idea of “the sick role” was an anathema.  Maybe, she feared a loss of control and pity.  Or maybe she never fully understood what was happening or how imminent her demise; although my partner said that just a few weeks before, Sarah remarked that she would soon die of the cancer.

I suspect that Sarah could not stand to bring her family pain.  Nonetheless, by shutting them out, Sarah hurt those to whom she was most close.  By not sharing her suffering because she loved them, she made them suffer.  She left them shaken, baffled and deserted, without the chance to cope by touching and helping Sarah through her ordeal.  The most tragic result was that when she needed family the most, Sarah ended her life alone.

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

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  • Sara Stein MD

    Very powerful narrative, James. One can only guess – for some people
    cancer is failure and shame (even a punishment for sin) and a secret,
    for others cancer brings out a need to maintain appearances to protect loved ones from suffering (doesn’t work). For others it’s just plain denial to themselves, and secondarily to the family. Steven Greer and colleagues looked at the coping styles of breast cancer patients in 1972 in Lancet – those with fighting spirit had the longest survival, but deniers were second in survival much to everyone’s surprise. Stoic acceptance and helpless/hopeless had the worst survival.

    That lack of social support can be deadly, as David Spiegel and group
    demonstrated in Lancet in 1989 – metastatic breast cancer patients in
    supportive-expressive group therapy lived 18 months longer than average. All because they had a place to talk, and people who wanted to hear what they said, and they never felt alone. Maybe patient psychosocial workups need to include contact with a selected family or friend to determine if there are any social support gaps. I remember a bone marrow transplant patient who had no family and no real friends. Everyone was concerned that he would be alone through his transplant and recovery. We pulled in so much ancillary wrap around support with pastoral, psych, social work, volunteers, and art therapy that he actually seemed to enjoy being in the hospital. The hardest part then was getting him transitioned to home!

  • Kim

    I, for one, appreciate your honesty. There is a lesson here for all doctors.
    Be honest with your patients and just as important DO NOT give false hope.

  • Lisa

    I think some of the reluctance to talk about a cancer diagnosis is generational. For people of my parents generation, cancer was not discussed or discussed in hushed voices, behind closed doors. On the other hand, my generation to some degree and my son’s generation, do not have the same reluctance. Witness the number of blogs written by cancer patients.

    My mil died of breast cancer. While my husband and I were given some information about her diagnosis when she underwent chemo therapy, the information we were given was partial. We were led to believe her treatment was going well and all was fine, when in fact her cancer had spread and was untreatable. After many anguished phone calls, with us pleading with my in laws to tell us the truth, my father in law called my husband and said he couldn’t do it alone. This was a week before my mother in law died. When she died, I had a chance to look at her hospice record. I discovered that she had treated for breast cancer when my husband was in college and thyroid cancer when my son was an infant. We had no idea.

    When my mother was diagnosed with lung cancer, she told me, but only because she knew how upset I was with my in laws. She said she wasn’t going to give me a chance to say that “she never told me.”
    While my mother didn’t want her kids to be involved in the decisions about her treatment, the fact that she kept us informed allowed us to step in when she could no longer make decisions. Her approach worked and I have kept it in mind when dealing in talking with my family about my own cancer diagnosis.

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