Unit 7  Section 1Exercise 2 Talking to people who are seriously or terminally ill
What do you say to someone who is terminally ill? Perhaps first and foremost, the art of communication is tied to the hope offered by science. In other words, it helps to have some solid information to provide to the patient regarding diagnois, treatment plan and prognosis. It is important for the patient to feel validated in their anxiety and given some means to manage it. See the clinical correlate. See also John Finn on prognosis. It is also important to evaluate the rate of disease progression and where the patient stands relative to the end. Click on these graphs illustrating 4 disease trajectories at the end of life.
Make a list of comments you might make to a patient or friend. What should you avoid saying? Make a list of these types of statements as well. Then read the selections below and answer the discussion questions that follow.
From Christina Middlebrook, Seeing the Crab Basic Books 1996: New York
In this memoir, Middlebrook describes her battle with metastatic breast cancer. Her account includes a graphic and harrowing description of what it’s like to have a bone marrow transplant. In one section of the memoir, she meditates on all the ways in which well-meaning—or not so well-meaning—people have managed to say the ‘wrong thing’ to her. “I never dreamed about the difficulty people have in finding a way to speak about cancer, serious illness, death,’ she summarizes. Occasionally, though, some people got it right.
At the beginning of her chapter, “Fruit City Bananas,” Middlebrook writes how people without cancer speak a different language than those who do.
“If anyone second-guesses the decisions I’ve made (“If the odds are so bad, why go through a bone marrow transplant?”), if anyone suggests that my realistic attitude about my prognosis is wrong (“Hey, Christina, think positive), or, worst of all, if anyone underplays the severity of the illness I have or the treatment I have endured (“But I heard you got out of the hospital earlier than expected”), if any of this language is used, I go wild, nuts, FRUIT CITY BANANAS.” 122-123. Types of irritations she lists:
1) ‘everyone else’s successful, early detection, good-prognosis cancer story.’
2) the cheerful phrases the radiation oncology technicians use while performing her radiation therapy
3) ordinary tensions: a neighbor who doesn’t know about her illness telling her off for parking too close to her driveway
4) compliments paid to Middlebrook on behalf of her husband for the success of his fund drive to help pay for her bone marrow transplant. ‘Your husband must be a very nice man. He must have a wonderful reputation.’ Why is her husband getting the credit for the money coming in? she wonders.
Middlebrook concludes on a positive note. A neighbor offers simple help or acknowledges her pain. “Then, miraculously, communications do occur. I speak. Someone understands.”
Study questions
1. Formulate examples of clunkers people belonging to the following types might say:
- Avoiders, who indicate that they are uncomfortable with the topic of illness and death
- Minimizers, who seek to emphasize the bright side of the experience
- Empathizers, who offer anecdotes from their own experience to show that they know what the ill person is going through
2. Middlebrook says, “Someone understands.” Who are these people who understand? What do they say or do to show that they understand?
3. Many people who have a chronic, serious, or life-altering illness find themselves with a different set of friends than they had when they were well. Return to Naomi Remen’s vignette in Unit 3 and answer the discussion questions.
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