Written by Kelly Klund
Clinical Educator & Program Specialist
My Uncle Harry is more than an uncle to me. As I grew up fatherless and lived with my grandparents, Harry has been an uncle, a brother, a father figure, and most importantly, my friend.
Early this fall, as Harry planned an upcoming fishing trip, he wasn’t feeling quite up to par. Believing he was in fairly good health, he was admitted into the hospital for what was supposed to be a routine gall bladder removal. Unfortunately, the surgery did not end up being routine as expected. During the surgery, the doctor saw the need to biopsy his liver. The result was a diagnosis of end stage liver cancer. Harry was given a prognosis of two months to live without treatment and “maybe double that” if he chose palliative chemotherapy. Receiving this shockingly straight forward prognosis felt like a semi-truck had smashed straight into the heart of our family.
Coincidently, I was preparing for Empira’s next grant: ResoLute (Resident empowered solutions on Living until the end). One of the cornerstones of ResoLute is truthful prognostication. As my professional and personal lives collided, I summoned the courage to ask my Uncle Harry if I could interview him, asking some tough questions about how he felt knowing he was facing the end of his life.
During our interview, Harry said it was most important he knew the truth about his prognosis. He told me he looked at the doctor and said “Shoot it to me straight doc”. The prognosis was devastating, but the physician’s honesty gave him a sense of urgency around the work that was left to do, the relationships he had to heal, the affairs he had to get in order, and the things he had left to say.
Karen Hancock did a review on discussing prognosis in advanced life-limiting illnesses and stated “many health professionals express discomfort at having to broach the topic of prognosis, including limited life expectancy, and may withhold information or not disclose prognosis. Reasons include perceived lack of training, stress, no time to attend to the patient’s emotional needs, fear of a negative impact on the patient, uncertainty about prognostication, requests from family members to withhold information and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment”, (Karen Hancock et al., 2007).
Another supporting journal publication by Fallowfield, Jenkins, and Beveridge discuss how deceit hurts even more than a painful truth could hurt. They state, “Ambiguous or deliberately misleading information may afford short-term benefits while things continue to go well, but denies individuals and their families opportunities to reorganize and adapt their lives towards the attainment of more achievable goals, realistic hopes and aspirations” (Fallowfield, Jenkins, & Beveridge, 2002).
In his book “Being Mortal” Atul Gawande says, “The chance to shape one’s story is essential to sustaining meaning in life” (Gawande, 2014). For our family, truthful prognostication has given Harry the opportunity to shape to his story. We are thankful for the time to do the undone, and for knowing the time to plan the next fishing trip is NOW.
If you or a loved one had a life limiting illness would you value truthful prognostication or in the words of Scarlett O’Hara subscribe to the belief that “I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow.”?
Fallowfield, L. J., Jenkins, V. A., & Beveridge, H. A. (2002). Truth may hurt but deceit hurts more: communication in palliative care. Palliative Medicine, 16(4), 297-303. doi:10.1191/0269216302pm575oa
Gawande, A. (2017). Being mortal: Medicine and what matters in the end. New York, NY: Metropolitan Books, Henry Holt and Company.
Hancock, K., Clayton, J. M., Parker, S. M., Wal der, S., Butow, P. N., Carrick, S., … Tattersall, M. H. (2007). Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliative Medicine, 21(6), 507-517. doi:10.1177/0269216307080823