A difficult conversation: Delivering news of a fatal illness to one's own wife

A Difficult Conversation. Martin B. Wice. August 27, 2019. JAMA. 2019;322(8):727-728. doi:10.1001/jama.2019.11757

[Full text, references, etc., at the journal above]

In her late 50s, Cathy developed fatigue. Over the course of a few months, she began to take afternoon naps and fall asleep earlier than normal. Then, over a 2-week period, she gained 15 pounds. Overnight, her belly swelled full of fluid, and she appeared 7 months pregnant. The next day, Cathy's primary care physician sent her to the hospital emergency department for a CT scan of her abdomen and pelvis. As a physician myself seeing patients at another nearby hospital, I logged into the network computer and, with Cathy’s permission, reviewed her scan results with the emergency department physician over the phone. Cathy's imaging and subsequent peritoneal fluid were consistent with advanced ovarian cancer—to me, a death sentence. I had delivered poor prognoses many times during my career, so I took it upon myself to give Cathy the bad news and ensure that I would be with her during this difficult conversation. This was especially challenging because Cathy was no ordinary patient—she was my wife of 31 years.

I finished my rounds and quickly drove to the emergency department where Cathy was waiting. On the drive, questions rushed through my head. How do you tell the woman you love that this disease can be only temporarily contained with surgery and chemotherapy? How do you tell her that she will never see her children graduate from their respective professional schools, will never watch her children get married, will never meet her grandchildren, and will never enjoy her golden years? How do you tell your children that their mother will be gone in a few short years? How do I as a husband cope with the stress of caring for a wife severely compromised not only from her cancer but from the cancer treatments? How do I cope knowing that soon I will need to learn to live without my life partner, the love of my life, the person whom I and others consistently relied on for support?

Cathy would have known the answers to these questions. She was the one to whom friends, children of friends, and even her own children's classmates came for unbiased and compassionate advice. As a wife, she always provided support and direction. If I ever questioned her, she reminded me that agreeing with her demonstrated good judgment.

As a mother of twin boys, Cathy guided our children on their journey to becoming kind, giving, and productive adults. She was also their advocate. One of our sons struggled in school from a “central processing” hearing disorder because of which he could hear the sounds of speech but could not distinguish their meaning. Cathy supported him through a grueling therapy program and installed sound amplification systems in each of his classrooms so that he could hear his teachers' voices over the background noise. Cathy then went on to advocate for better diagnosis and treatment of all hearing impaired children in our community and had great success advocating for proper acoustics in each K-12 classroom in our area.

Cathy also supported my parents as if she were their own daughter. When my father developed Alzheimer disease, she helped care for him until his death. With our local Alzheimer Association, she created a handbook for hospitals on how to interact with patients with dementia, an endeavor that earned her the volunteer of the year award. When my mother had a stroke, Cathy cared for her in our home. Now, it was our turn to support, advocate for, and care for Cathy.

Once I arrived at the emergency department, I pulled myself together to have the most difficult conversation of my life. I called upon my training as a physician to deliver bad news: you assess the patient's medical, functional, emotional, and spiritual needs, as well as the patient’s family's needs. After weighing the pros and cons of each option, you determine the best approach to address these needs. You then sit down with the patient and family members and have a private, nonjudgmental, and supportive conversation. Speaking at eye level, you discuss the situation as partners. You pause and allow the information to sink in. You have a box of tissues at the ready. You offer a calming touch as appropriate. If and when the patient and family members are able to continue the discussion, you outline the various scenarios and the best outcomes. You pause again. You allow the patient and family to respond further. You address their concerns and questions. I had done this many times but never as both the doctor guiding the conversation and the family taking it in.

I sat at Cathy's side and held her hand. I called upon my extensive training to navigate this conversation, and then delivered the horrible news. “Your abdomen is filled with abnormal cells, cells that are from advanced ovarian cancer,” I said, still overwhelmed and trying to contain my own shock. I paused to give both her and me time to process the information. As husband and wife, we shed tears together. I promised to always advocate for her, always seek out the best possible care for her, and always be there for her. The gynecologic oncologist arrived, and we discussed the treatment plan. I vacillated between 2 worlds: at times, a physician; at times, a worried husband and now caregiver. This would be a twilight zone I would never leave. We shared the initial shock of her diagnosis the remainder of the night. Neither one of us had much sleep. We did what we always did in a crisis: we held each other tight for mutual support.

The next day, we celebrated our wedding anniversary with Cathy undergoing a bowel prep for the imminent tumor debulking procedure. Being board-certified in both internal medicine as well as physical medicine and rehabilitation and with official orders from her oncologist, I organized a customized cancer rehabilitation program for Cathy. And I kept my promise. I supported Cathy through her initial surgery and then through her multiple cycles of chemotherapy and its debilitating consequences: the fatigue, low blood counts and multiple transfusions, pneumonias and urinary tract infections, recurrent nausea and vomiting, hair loss, painful peripheral neuropathy, edema, and “chemo brain.” She lost strength, balance, hearing, renal function, mobility, and she lost her way of life.

As a husband, I provided her emotional support to counteract her frustrations, fears, and depression. I provided physical support when necessary, helping her bathe, dress, stand, and walk. When I could, I took her to chemotherapy. When others took her, I would visit her in the outpatient cancer center. When she was hospitalized, I would spend the night with her. Later, when she lost all bowel function, I connected her to intravenous fluids each morning and night. When her liver stopped working altogether, I took her home to die in a familiar setting, surrounded by her immediate family. Cathy passed away 2 days later, 3 and a half years after her initial diagnosis, with her sons and me at her bedside.

In this time of challenge, I found inspiration in these words by philosopher John O’Donohue1:

    When the reverberations of shock subside in you,
    May grace come to restore you to balance.
    May it shape a new space in your heart
    To embrace this illness as a teacher
    Who has come to open your life to new worlds.

I have grown a great deal in my “new world.” I rebalanced my life during Cathy’s illness and after her death. She and I spent our remaining time together to the fullest, and I have since continued living each day as if it is my last. I developed a better appreciation for relationships, the wonders of nature, and my connection to the rest of the world. There is new space in my heart that has allowed me to deepen established and new relationships. My love and support for our children increased, as I did my best to compensate for the love and support that Cathy had so generously given in life. In her final days, Cathy told me to find someone new to share my life, and I did. Cathy’s illness taught me that the challenges of disease can enhance people’s lives, and I am grateful for this lesson in my own.

On a professional level, Cathy’s illness strengthened my empathy for and commitment to patients and their families at intense times of need. Each time I give bad news, I am transported back to the emergency department with Cathy. I not only relive the delivery of Cathy’s cancer diagnosis; I relive the shock of just having received it. I will never forget being caught in the world of a physician, a loving husband, and a caregiver. My new tripartite identity may not be a perspective I anticipated but is one that has enhanced the quality of care I provide.

With her diagnosis, Cathy and I were forced to acknowledge that life is limited, which gave our lives and the lives around us so much more meaning. This is a legacy Cathy gave to me. No difficult conversation can ever replace this.

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Additional Information: I thank Elizabeth Mueller, BS, Elise Alspach, PhD, and Kathleen Schoch, PhD, for editorial assistance and feedback in association with InPrint: A Scientific Editing Network at Washington University in St Louis. None were compensated beyond their usual salary. I also thank my son for allowing me to share this story.