Denial is a family thing

I finished writing my note about my office visit with Edna, when her daughter called.  Edna and I had discussed that the cancer was spreading rapidly and I thought chemo would not help. We talked about quality and comfort for the time that remained.  Edna was considering hospice.  Finally, at Edna’s request, I put a note in the record that from now on, whatever happened, she did not want to be supported by machines and did not want CPR.

Edna’s daughter, who we will call Sue, wanted to talk about her mother’s condition.   Without asking any questions, she began by saying how upset she was that her mother did not seem to understand what was happening.  Sue believed her mother needed to realize that the chemotherapy might not work and that the cancer was not curable.  Sue went on about how the next couple of years was going to be tough and that her mother needed to be ready.  Sue doubted that Edna even understood how much cancer she had.

After a moment of listening thought, I asked what Sue understood about her mother’s cancer?  She replied that her mother had a mass in her lung the surgeons could not remove and that chemo might not always control.  What did Sue understand about her mother’s prognosis?  Sue replied that the cancer would probably spread in the next few years and that at some vague future time, her mother might be “lost” to the disease.  Sue wanted me to have a clear conversation with her mother, so that her mother would be realistic.

When we talk about the “stages” of coping with cancer, such as Kubler-Ross’s classic denial-anger-bargaining-depression-acceptance sequence, we tend to think about the patient.  However, in real life every person in a family and friends too, go through stages of coping, just like the patient.  The hard part is that no one in the family adjusts in the same order or at the same time as the patient.  When Mom is accepting, daughter is in denial. When brother is angry, wife is depressed.  When the patient is bargaining for few more weeks, the family is planning the funeral.

This is natural, healthy and confusing.  There is only one answer.  Communication.  For the caregiver, usually the doctor, the key is to educate each person about what is happening.  Often the most efficient way to do this is by a family meeting, so that everyone talks, everyone listens and at least theoretically, achieves a similar understanding of the case.  This does not completely eliminate misinformation, nor coping differences, but at least it builds a common foundation.  For families the key is to keep communication open and share with each changes that occur. If this common understanding is not achieved then the patient may become emotionally isolated and this can lead to poor care coordination and suffering.

As for Sue, I had her come into the office with her Mom and we had a frank conversation.  We talked about Edna’s cancer (it has spread to lung, bone, liver and perhaps brain).  We talked about the failed therapy and limited options.  We revealed her Mom’s wish to be comfortable.  Sue listened, talked and cried, and from that moment she understood. Together, we made plans for the future.  Together Edna, Sue and I began hospice.  Then, walking slowly, holding hands gently, they left the office and headed home, together.



  • Jill
    I love this one...
    • James Salwitz, MD
      I am very glad. Jcs
  • Gerda Yeskevich
    Your writing is very touching, supportive and inspiring. My husband was a former patient with your practice and even though he is no longer with us, I continue to enjoy and appreciate your stories for my own healing as well as sharing with others that would enjoy and benefit. Thank you.
  • CB
    This is why your such a great doctor.
    • James Salwitz, MD
      Thank you ...I like to think I have great patients. Jcs
  • robin manley sister is cindy cedrone
    My sister is your patient and she loves you. I am very grateful for you. It is very hard not to be in denial especially when she is having such goods days. I just can not wrap my head around the fact that it will happen as soon as you think. Very hard
    • James Salwitz, MD
      This is a bizarre time of life because it is so precious and yet so painful. Your sister is blessed with a remarkable family. Jcs
  • IBS
    As a palliative care patient for Stage 4 NSCL-adenocarcinoma, my first reaction was definitely shock, grieving for myself, stayed in isolation, and then tell my family. I know my body and what it rejects. I was told to try chemo I was not a candidate for radiation. I would have to remove my entire right lung. What I wanted to have a quality life while I'm still here. My kids and brothers: The guilt trip came. "Don't you want to get better? Can't you try for us? I had to try for my family so they wouldn't feel anger or guilt. Two rounds of chemo did me in. They saw me losing weight, projectile vomiting, constant diahrea, and severe depression. I wanted to live and so did everyone else, but I was going through torture. This wasn't quality life and told my Onc I don't want to spend my life doing this because this is no longer a life. I have spent my entire life sickly, and I wanted to pass with no more pain. My Onc promised me he wouldn't let me. He put a note in my folder to obey my orders. I feel fine, and it's been 16 months since I've been dxed. I don't even cough, and I'm very happy. Thank you to my wonderful doctor. He's so kind and understands me. Palliative care doesn't mean instant death.
    • James Salwitz, MD
      Yours in an inspiring hope filled story I wish every oncologist, family and patient could learn. So often the alternative of "do nothing but live" is not given as a real choice. The defining fact of life is that it ends, therefore we must fight for quality in the life we have and not corrupt precious time trying to achieve an immortality we can never achieve. I hope for you continued good days and happiness. Make sure others know about the support, wisdom and balance of your oncologist. Jcs
    • gopja
      Sometimes palliative treatment is the gentlest option. I love your philosophy; blessings on your journey......
      • James Salwitz, MD
        Thank you ... And on yours. Jcs
      • IBS
        For the families of your loved ones going on a journey, one must be respectful to the patient. No stress. No bossing them to get a caregiver, a driver, etc. A palliative patient doesn't lose their mind so please don't treat them as such. They're still with you, hopefully, so just tell them how much you love them. That's all I wanted and took awhile for my family to understand. We are all dying slowly everyday, but as in Henry Van Dyke's poem, your loved one just becomes smaller from site while one says goodbye, others are happily shouting, "Here she/he comes!" Don't be afraid. Your Oncologists are there to just help you and your loved ones. Listen to what your loved ones want and not what you want. That's called Love.
        • gopja
          Your confidence and fearless attitude come from deep inner peace; my hat is off to you. My dear friend maintained cancer was one of the best things that happened to her. It allowed her to appreciate all things and form friendships with people of all ages and walks of. life. To this day I marvel at the beauty she strew along her path. You will be remembered in that manner. Thank you for sharing so candidly.
  • IBS
    Thank you all so much for reading this. We all deserve dignity and peace when our circle of life is ending. I feel when a caregiver is told, they think the worse+hospice and their loved one is being taken away. With palliative care, I still see my doctor, I live alone with my dog, drive and order food in. Gopja, your friend was very lucky to have you in your life. You understood her and that was a beautiful gift she left you.
  • gopja
    Thank you, IBS, she left a tender spot in the hearts of many as will you. She was a powerful example of palliation for many, and still is.
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