Do We Need a “Rule Book” to Speak With Terminally Ill Patients?

We have been told occasionally that certain phrases we use when speaking with a terminally ill patient may sound insensitive. We have also been told what we should not say to a person with cancer or other diseases. Yet do we know what we should say? Perhaps a set of rules or examples might ease an uncomfortable moment.

According to a recent article in the Washington Post, patient etiquette may help the patient in conversations with their friend, relative, or hospital visitor.

Mortality by Christopher Hitchens

Well-known author Christopher Hitchens died eighteen months after he received a diagnosis of esophageal cancer. He described an incident that occurred at one of his book signings.

A woman seeking his autograph stopped by to speak with him. She told Christopher Hitchens about her cousin who had cancer that reoccurred and caused considerable suffering. The relapse was even worse than the first attack. She did not hesitate to describe her cousin’s agony which ended shortly thereafter in death. She told him that she wanted him to know she understands just what he was going through. This unsolicited information from a total stranger obviously caused Christopher Hitchens unnecessary worry and concern.

As aforementioned, Christopher Hitchens died shortly afterward but left several suggestions about creating a short handbook of cancer etiquette. It may be worth exploring.

Topics to Consider

Cristopher Hitchens suggested:

  • Please speak to me about my cancer, not about someone else’s
  • Please discuss uplifting topics rather than regale me with depressing and unrelated stories
  • I prefer not to discuss adverse side effects and medications that have failed
  • Mostly, even in your attempt to calm my fears, please do not suggest it may be “time to let go”

Josette Snyder, a nurse in the cancer unit at Cleveland Clinic contributed to the article by suggesting that it is all about interacting with patients in an empathetic, friendly, and compassionate manner.

Rule One: Listen

If we are to call it “cancer etiquette,” then we can designate it as a rule – listen. Give the patient uninterrupted time to tell us their thoughts and their concerns. Yes, we want to comfort the patient but, as Whitney Read, a New York social worker, explains, allow the patient time to express their emotions in your presence.

Steven Petrow is a contributing columnist for the Washington Post. He writes that in 1984 he was 26 years old and diagnosed with testicular cancer. He only heard three words his doctor said: “You have cancer.” Steven said that his mind went immediately to a made-for-TV movie about a pro football player. It was “Brian’s Song,” the 1971 movie about the life of Brian Piccolo who was diagnosed with testicular cancer. In the movie, the diagnosis was termed terminal cancer. Brian died at age 26.

Steven explained that at the time of his own diagnosis, even though he knew how chemotherapy improved the survival rate, he chose to focus on Brian’s death rather than his own chance of survival. Steven has since learned to focus on his survival, which now brings him to a total of thirty-five years being cancer-free.

One Size Does Not Fit All

Steven emphasized that as far as cancers, one size definitely does not fit all.  He said that the expression reminds him of the many gaffes from friends after his diagnosis. He even admits to one that he made when he complimented a friend on his new haircut. He said that he had not realized that it was actually his friend’s hair growing back after being shaved during chemotherapy treatment.

Some friends made what Steven calls egregious comments, such as advising him that he should have a good attitude in order to survive. Another suggested that God was trying to tell him something. He admitted that the friend who irked him the most had said that “everything happens for a reason.”

One of Steven’s friends has Hodgkin lymphoma. She often wants to talk about her treatment. Other times she suggests that they just go for ice cream. Steven reads this as his friend wanting to keep things light. He lets her lead.

Rule Two: Listen Even More

Steven reminds the reader not to underestimate the effectiveness of nonverbal communication. A hug or just a good dinner can help as much as a conversation.

If you are at a loss for words, then admit it. A friend’s father who had terminal cancer offers: “words are not always necessary.”

Rule Number Three: Support

If you are at a loss for words simply let the patient know that you love them and are there if they need you. Treat them as you always have. Not speaking loud or whispering. As a long-term cancer survivor shouted to Steven in all caps, “DO NOT TREAT ME DIFFERENTLY.”

Rule Number Four: Be Sincere

Telling someone that they should call you if they need anything may not be a strong message, as many people do not want to call and ask for help. It is better to bring dinner, walk their dog, empty the trash, or drive the patient to the doctor.

If you have been asked to accompany the patient to a doctor’s visit, it is incumbent upon you to keep all information you have learned confidential unless otherwise instructed. The same advice would apply to alternative treatment, doctors, or clinical trials.

It is best to avoid well-meaning clichés and instead offer support where the patient can identify and benefit. And don’t forget the value of a hug.

Of course, these are simply suggestions and any patient or caregiver can write their own Book of Rules.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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