Recently I was asked to see Anne who, five years ago, was diagnosed with non-curable cancer. The focus is on treatment options, procedures, investigations, and acute issues. Then, in the busyness of care the big picture blurs for both clinician and patient.
Yet, surprisingly, many doctors shy away from revisiting this important contextual information throughout the illness, perhaps because they worry that the patient doesn’t want to know, or would be saddened, or become hopeless and depressed. For example, a patient diagnosed with ALS will typically have a prognosis of two to five years, with their condition declining rather predictably as the disease progresses. The “natural history” of an illness is a description of how it behaves from diagnosis until the end, and is otherwise known as the “general illness pattern.” For many life-limiting progressive chronic illnesses such as heart failure, chronic lung disease, ALS, dementia, and non-curable cancers, these patterns are well understood by doctors. One puzzled patient said to me, “Why the hell didn’t anyone tell me this was going to happen?” When they finally realize death is approaching, they often feel disappointed by their health-care providers and filled with regrets. Consequently, patients and their families are making many important decisions about treatments, work, and family life, with only partial information. This begins a pattern of communication based on half-truths, implied consequences, unspoken questions, and ill-addressed fears. At the time of diagnosis, many doctors neglect to broker an open dialogue with their patients about the certainties of progressive illness. I have sat at the bedside of thousands of dying patients who were still in the dark about the realities of their disease.īut looking backward in the patient’s story, the problem is often illuminated. But when it comes time to prepare our patients for what lies ahead, we often seem unable to discuss the inevitable journey to death.Īs a palliative care physician with 15 years of experience, I see how the absence of information about the natural progression of life-limiting illnesses can cause patients and families significant and unnecessary suffering. We doctors know more about mortality than most people we think about it constantly.
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