The Other Symptoms of Terminal Illness: Denial, Hope, and Anger

In medical school I learned about Elisabbreaking badeth Kübler-Ross’s model for the five stages most patients go through when faced with a terminal illness. The stages are: denial, anger, bargaining, depression, and finally acceptance. What I didn’t learn until recently—at a deep level—was how these stages, particularly denial and anger, might influence care and the provider-patient relationship. That lesson came home to me when, in the past few months, two people within my circle of friends and family have been diagnosed with an incurable brain cancer. In both cases, expected analytical discussion about the diagnosis and treatment has taken a back seat to emotions driven by denial and anger.

Denial makes it impossible for patients to hear

Denial for patients and their families is understandable. Our own mortality is always lurking, but it’s completely different when time becomes finite. For both people in my circle, the patients (or family members) were unable to hear what was being told to them. Unfortunately, this led to a disconnect between the patient and their care team. These miscues led quickly to mistrust and anger. In each case, the families ended up questioning the care they were being offered.

Providers can be numbed to the story

Doctors, particularly at specialty centers, have been there before. They have a good handle on the options and likely course of a terminal illness. After all, although the future is always uncertain, within reason it is predictable. But such familiarity with the process can distance providers from the urgency patients feel. Doctors may minimize the patients’ impulse to explore every last possibility, no matter how slim. Such recourse is even more common today, with an Internet full of alternative cures for incurable disease at our fingertips. Armed with new information, patients then ask the same questions over and over (an expression of denial), which can lead to frustration for both doctor and patient. In both of my recent experiences, the patients began to question the doctors’ competence. Needless to say, this did not enhance the doctor-patient relationship. Thus, not only denial but also its cousin, hope, may lead to anger and a wall between providers and patients. This obviously strains communication.

Treating the emotional by-products of a terminal disease

One of my residents asked me what I would do if faced with a terminal illness. Granted, it’s easy to be the advisor, but I honestly feel that if it were my life on the line, I’d like to move through the five stages as quickly as possible. You see, hope’s a double-edged sword, and physicians are divided on the matter, some feeling it is more humane to soften the truth while incorporating hope into their care, and others feeling it best to dispense with false hope and help the patient move through the stages. Yes, hope gives us the energy to get up and face many challenges. But the search for false cures also steals time, distracting us from what is really important. If there is any gift from diseases such as cancer, perhaps it’s that it allows us to break out of our everyday life and focus—really focus—on what matters most.

I’m not exactly sure how care providers can help their patients find a balance between despair and acceptance, but it is worth thinking about better ways to communicate. We can begin by reminding ourselves of the wall of denial and hope that patients build in order to confront their mortality. And we can strive to not take the patient’s denial and anger personally, rather to recognize it as just another unfortunate by-product of their disease. Only when we put ourselves in our patients’ position can we help them, not to give up, but to prepare as they grapple with the depth of their hard reality. Ultimately my goal is to carry out that task without crushing their spirit.

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