Shielding patients from difficult diagnoses undermines their autonomy

The affection families express for their dying loved ones can take many forms.  Recently, I saw a spry 91-year-old Spanish-speaking gentleman with lung cancer which had consumed the better part of his right lung.  He had a large family with many doting daughters.  In his neighborhood, he was popular and well respected.   He, according his family, had “many girlfriends.”  His lung cancer was no doubt a result of a 3 to 4 pack a day smoking habit consumed on his porch while socializing with his neighbors.

I saw the patient — I’ll call him Mr. Gomez — shortly after he was admitted to an inpatient hospice unit for increasing pain and shortness of breath.  His complaint to me, however,  was “I am going crazy.”

He had no idea why he was growing weaker.  Chest pain and shortness of breath now limited his daily activity.  20 pounds melted off his frame in the last two months.  My interview with him was completed through a daughter who translated (a big medical/legal no-no, but it was my only option for a few hours until a translator arrived).

His daughter motioned that she wanted to speak to me outside the room.

“We have not told him about his diagnosis” she confided, her voice shaking.  “We don’t think he would handle the news well.”

Amazingly, his family stayed at his side during each doctor’s appointment and hospital visit to help translate.  This allowed family to censor medical details communicated to their father during these encounters.

Mr. Gomez was wise to a conspiracy.  He often yelled at his loved ones: “Tell me the truth!”  This 91-year-old man was worried his severe pain and weakness were a mere figment of his imagination.  His symptoms were a sure sign he was losing his mind while his family reassured him of his physical health.

His daughters worried knowledge of his prognosis would shorten his lifespan. A tearful confession: They did not want to be responsible for decreasing his number of days.

Within each culture exists a wide spectrum of beliefs regarding illness and end of life care.  Certain Eastern cultures consider informing a patient about a cancer diagnosis taboo.  In an individualistic western society, some can hardly imagine deferring the details of diagnosis and treatment options to family consensus.

We learn in medical school that patient autonomy trumps all.  In the end, the decision falls to the individual patient to decide how much or how little they wish to hear about their diagnosis.

Despite the concerns of his family, Mr. Gomez opted for full disclosure: “I want to know everything.”  I sat next to him and started the difficult conversation through a medical translator.

“Doc, do I have cancer?”

He simply needed validation of what he already suspected.  His family felt relieved after learning knowledge of a prognosis does not shorten a patient’s life span.  The 1,000-pound gorilla disappeared from the room.

Mr. Gomez was visibly shaken by the news.  After the emotion of our conversation faded, he also expressed relief.  He could now move forward in planning how to spend his final weeks.

Brian J. Carlisle is a palliative care physician and can be reached on Twitter @brianjcarlisle.

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