Cancer communication is a very important section of health communication, and obviously a sensitive issue. When communicating with an individual who has a terminal illness, you may feel conflicted about what to say. We all mean well, but sometimes our words and actions can do more harm than good.

Today I am proud to bring you my first guest post. I met Sharon in 2007 in our graduate program at Cal State, Long Beach. Since then I watched peripherally through Facebook as she got married and had her baby boy, Ethan.

Below is Sharon’s story about becoming a parent of a child with cancer. Her experience, as well as her own professional background in communication studies provides a candid perspective of what words help, and what words unintentionally hurt. Please read on to find out the best tips and strategies to use the next time you interact with someone (or their family) going through long-term illness care.

-Erin

Sharon’s Story

My name is Sharon Beal, and I am an adjunct faculty communications instructor at Chapman University.

My son, Ethan Beal, has been dealing with leukemia since April 2014, when he was diagnosed at 7 months old.

Ethan has a rare form of infant ALL (Acute Lymphoblastic Leukemia) with an MLL gene mutation. What this means is that regardless of how much chemotherapy Ethan does, his leukemia cells have a mutation in them that cause the cells to keep re-multiplying in his body.

This type of leukemia does not currently have a cure; however, researchers around the country are trying to develop a medication that can stop these leukemia cells from mutating and re-multiplying.

Since Ethan’s diagnosis, we have primarily lived in and out of CHOC hospital.

Ethan had a bone marrow transplant last October, in hopes of a cure. His father, Jordan Beal, was the donor. Ethan remained in remission for less than 6 months and relapsed in April 2015.

His leukemia returned very aggressively, and we were told that if we did not continue treatment he would have a few weeks left to live. Because there is not currently a cure for his type of leukemia in the medical field, Ethan has moved on to experimental treatments in Seattle.

From this point on, if we want to keep Ethan alive we will have to find different experimental treatments around the country that will buy us more time with him until a cure is developed.

Ethan will celebrate his 2nd birthday next month. He is an adorable little child who has no idea that he is sick. His life is filled with needle pricks, blood draws, chemicals with nasty side effects, doctor visits, and long stays in the hospital (the usual lasting 30 days).

We start chemotherapy at CHOC hospital on Monday while we wait for Seattle Children’s Hospital to give us a date to come and receive more of his experimental treatment. When we return to Seattle, we will live there for 5 weeks. This experimental treatment should hopefully buy us 6 months with Ethan.

Throughout this process, we have had countless heart-warming experiences with people who have been tremendously kind.

And we have had countless experiences where people had the best intentions, yet the words coming out of their mouth were more unkind than they realized.

Below are some examples of encounters we have had, and we are offering some tips as to how people like to be communicated with when dealing with a long-term illness.

Personal Examples:

• An old friend who works at the grocery store stopped me and asked how Ethan was doing, then he asked if the doctors had figured out what was wrong with me, so that this wouldn’t happen (leukemia) to any of my other children.

He had no idea that the message he really sent to me was, “you did this to your baby.”

• Shortly after Ethan was diagnosed, a friend of mine asked me through Facebook if I had painted our home while I was pregnant. She continued to tell me that there was a class action law suit in an Asian country where parents were suing because they had painted while pregnant and now their babies had cancer.

This friend thought she was helping by suggesting what might have caused Ethan’s leukemia. In reality, it came across as blaming.

• I’ve had a close friend say sympathetically to us after Ethan’s relapse, “is there any hope?” Another innocent comment by a curious caring friend.

A general guideline is caretakers do not like other people talking about patients as though they are dying. It is okay if the caretaker/patient discusses bad news in conversation, but it is always a touchy subject if someone else does.

• My mother has a friend who texts me and says what day/time she’d love to come sit with Ethan while I run errands or go exercise. She doesn’t ask any questions about his prognosis, she just says how much she loves to hold him. I have had relatives on countless occasions provide the same resources. It means the world to me that I don’t have to explain his prognosis that week.

Some people think they are being rude for not asking about our child’s condition, but honestly, we prefer for others to wait for us to bring up the topic.

• On countless occasions, people have approached me with compliments, telling me that I’m doing such a good job with our son, or how wonderful Ethan looks.

Those compliments mean a lot because it’s something positive we can focus on.

Tips: To-Do

Tip #1: When visiting at the hospital, any non-perishable snacks (fruit, granola, drinks, etc.) are always appreciated, especially if they are healthy.

Tip #2: Tell the person dealing with long-term illness what you can do for them and when you can do it-please be specific. Avoid, “let me know if I can do anything for you.”

Tip #3: Offer to give meals, at-home services (laundry, dusting, car washing, etc.), babysit, bring groceries, run errands, or sit with the patient while the parents run errands.

Tip #4: Group gift baskets, or gift cards to local restaurants/stores are amazing gifts. Many people would randomly send tickets to venues or packages in the mail with a nice note.

Tip #5: Always keep your communication positive, even when bad news is given, and avoid pitying the individual who is sick.

Sometimes the most sincere person can use sympathy, thinking they are helping, but a compliment to the parents/care taker for their efforts, or a compliment to the patient on their looks or abilities are much more appreciated.

When the patient is sick their looks change, as well as what they are capable of accomplishing. And when others compliment the patient and focus on the positive it boosts the patient’s morale.

When sympathy is overused, the words can unintentionally create unnecessary heart ache for the family members. Over sympathizing can be difficult for the family members to hear, and although the individual who over sympathized goes home to a normal life, the family members dealing with long-term illness are left with the words weighing on their minds.

I would avoid phrases like, “is there any hope?” or “we’re so sorry you have to go through this.” Some people, with the nicest intentions, have talked about our son in a grieving way, when in reality, he may live, so we like to focus on the possibility of him living.

Tips: Not to Do

Tip #1: Please don’t take the caretaker’s or patient’s food when visiting them in the hospital. We really need to save it for ourselves.

Tip #2: Please do not stay more than 1-2 hours when visiting a patient at the hospital.

Nurses and doctors are coming in and out, and we feel that we need to entertain you rather than have important conversations. Also, please do not bring children to visit in the hospital for too long.

Tip #3: If you are an out-of-town relative coming to visit for a few days please be mindful that caretakers and patients do not have the resources or energy to take care of you, whether they are in the hospital or at home for a few days.

Please provide your own accommodations with food and housing. With out-of-town visitors comes a huge grocery bill, please pitch in and pay for your groceries.

Also, please be mindful that because there is very little personal space when living in the hospital, when the patient comes home from the hospital there is still a great need to re-establish personal space.

Tip #4: If you are not close enough to the caretaker/patient to call them on their cell phone or visit in person, then please do not ask them randomly for updates on the patient’s prognosis when face to face.

You may feel that you are being sincere, but this comes across as an invasion of privacy. If you are going to ask, first ask if it is okay to ask. For example, “is it okay if I ask you about your child’s circumstance?” vs. “So what’d the doctors say this week?”

Tip #5: If the patient is a minor, please do not put their images on social media without first gaining consent from the parents. Parents are protective as to what images of their child are on social media, especially when their child is sick with a long-term illness.

Tip #6: When caretakers/patients are open with personal disclosures regarding the diagnosis on social media that does not mean they want to be open with personal disclosures face to face in public.

Face to face communication regarding a patient is much more personal, and caretakers/patients can often feel bombarded by people’s inquiries.

Tip #7: Please do not give hand-me-downs to a caretaker/patient and say, “whatever you don’t want just donate.”

In your heart you are doing a good deed, but in reality, there is a reason you are giving the items away, and you just created more work for the caretaker/patient.

If you are going to do this, you can offer to take any unwanted items to goodwill/salvation army for them.

Tip #8: Please do not call or text with inquiring words, such as, “how are you doing today?”

Caretakers and patients are constantly asked this question by doctors, nurses, and staff. A more positive approach would be to call/text and say, “hey I was thinking of you….” and then keep it positive.

Tip #9: When introducing parents of a sick child in public, please don’t introduce them as, ‘the parents of the kid with cancer.”

I’ve been in awkward situations where I’ve been introduced to large amounts of people as the mom with the boy with cancer. You can imagine all of the unwanted and unplanned questions that ensued.

Tip #10: There are often church members praying for the caretaker/patient during a long-term illness. Caretakers/patients appreciate these prayers and they appreciate the support they feel at church; however, when someone is praying for the patient they often feel that it is then okay to approach them any time at church wanting updates. This can cause caretakers/patients to feel bombarded with questions at church, rather than giving them the opportunity to participate in sincere worship. Church services should provide a spiritual break from the day to day tediousness of hospital life.

Summary

While many of these points come from personal experience, Sharon shared that several tips and strategies also came from CHOC’s parent resource manual, which is a helpful guide for parents navigating the common issues involved with communicating about their child’s health.

When communicating about cancer, it can be difficult to figure out what to say to be supportive, as opposed to intrusive, especially when children are involved. Hopefully these tips will help you navigate these conversations more confidently in the future.

Thank you Sharon for taking the time to share your story and these valuable tips with the Healthy Communicator community! Your family’s strength, positivity, and faith are amazing examples for others going through similar struggles.

Please share this article with others! And if you have your own tips on what to say or not say based on your experience, please tell us in the comments below.