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What to Say to Someone with a Life-Threatening or Terminal Illness

2. Focus on what you need to say, not what you need to hear.

Key points

  • It's hard to know what to say to support someone who is suffering from serious or terminal illness.
  • In one study, when terminal patients were asked about the most helpful things loved ones did, calmly accepting their illness was one.
  • To support a loved one with a life-threatening illness, one should avoid forced, overly cheerful statements that shut down conversation.
Photographee eu/Shutterstock
Source: Photographee eu/Shutterstock

Martin was a charming man with a tremendous sense of humor. At age 52, he had been in the construction business for many years and loved his work. A big kid at heart, he especially enjoyed demolishing whatever had been standing before construction. When asked about his work, a big grin would spread over his face as he said, “Who wouldn’t like getting paid to knock stuff over?”

Unfortunately, Martin hadn’t been able to work since he was diagnosed with a brain tumor six months ago. The tumor quickly took away his ability to walk and eventually led to forgetfulness and confusion. Because his wife, Jennifer, understandably found it difficult to care for him at home, they decided to move him to an inpatient hospice unit, where I was working as a psychologist.

For the first month after entering hospice, Jennifer visited Martin nearly every day. But, as the tumor caused increasing disorientation, she visited less and less. He was upset by this, constantly asking, “When is my Jenny coming to see me?” So, with Martin’s permission, I called Jenny to inquire. After a moment’s silence, she said, “This must sound awful. But I just can’t bring myself to come.” When I asked her what the hardest thing about visiting was, she responded simply, “I just don’t know what to say to him.”

It can be hard to find the right words, particularly when it comes to topics like serious and terminal illness. The good news is that, if you genuinely care, the specific words might not matter as much as your presence and caring. Nonetheless, it’s easy to criticize ourselves for saying the wrong things or not providing enough emotional support. So, here four few tips to help you decide what to say:

1. Say What Most Needs to Be Said

In some relationships, there’s so much to say that it’s hard to know where to begin. You may find yourself thinking, “There’s too much to talk about, I’m better off not even trying.” On the other hand, people with serious illness can often be fatigued and have difficulty engaging in long conversations, so we may simply be hesitant to burden them with a lot of talk. A good strategy in both cases is to ask yourself, “What do I most need to say?”

To help figure out what this might be, take a few minutes to make a list of things you wish you could talk with your loved one about. These can range from completely trivial to extremely important. Don’t censor or criticize your ideas; just get as many down on paper as possible.

Once you’ve done this, examine the list. Think about what all these topics might have in common. Look for a theme that several of them share. For instance, they could all be concerned with love, trust, hope, or guilt. This central idea is probably what most needs to be talked about.

2. Focus on What You Need to Say, Not What You Need to Hear

Perhaps the hardest thing about any important conversation is opening yourself to disappointment. If you tell someone how much you love them, for instance, you could always face the possibility that they might not return that love. Unfortunately, vulnerability can’t be avoided in heart-to-heart conversations, so it’s important to be prepared for a response other than what you want.

When you speak to your loved one, one helpful strategy is to think about what you need to say, not what you need to hear. Try as you might, you can’t control what anyone else says or does. You can only control what you say and do. But this doesn’t make expressing yourself any less important. In fact, expressing yourself to another person is valuable whether or not that person responds as you had hoped.

3. Don't Shut Down the Conversation

It’s very easy to say or do things that inadvertently and with the best of intentions end up preventing heart-to-heart communication.

When Jennifer finally visited Martin, he brought up the topic of his illness. Almost reflexively, she responded, “Think positive! Don’t talk like that.” Although she said this with the intention of comforting him, her well-meaning statement cut short what might have been a cherished conversation.

In their research, psychologists Gayle Dakof and Shelly Taylor asked patients with cancer about the least and most helpful things that their friends and family did for them. Among the least helpful, patients complained that people sometimes minimized the seriousness of their disease or forced cheerful conversation upon them. In contrast, they found it incredibly helpful when family members calmly accepted the reality of the illness.

When emotional topics arise, our first instinct may be to prevent strong feelings. In many situations, it’s awkward to say how we really feel. In everyday life, we know that the appropriate response when someone asks, “How are you?” is “Fine.” If we were to say how we really felt, the other person would likely respond with “Look on the bright side,” “Everything is going to be fine,” or “Feel better soon!” But such words have a side effect: They stop further conversation by sending the subtle message, “This is uncomfortable for me and I really don’t want to talk about it.” So, they’re not very helpful when we’re trying to connect on a deeper level with someone.

These statements usually aren’t used with bad intentions. People just don’t know how to respond. As alternatives, try phrases that are more likely to keep the conversation going, like, “This must be hard for you,” “Nobody can stay positive all the time. What’s on your mind?,” or even, “I’m not sure what to say, but I’m here for you.”

4. The Rests Are Music, Too

I distinctly remember something my high school piano teacher once taught me. “Rests are music, too,” she advised. She thought she was teaching a basic lesson about music: When you’re playing a piece, don’t rush through the rests or the music will sounds strange. Actually, however, she was teaching a valuable lesson about life: Silence has value.

In the study by Dakof and Taylor mentioned earlier, the top three things patients with cancer said their friends and family did for them were expressing concern, being physically present, and calmly accepting the illness. In other words, they didn’t involve saying anything in particular. Rather, they involved simply being there, sometimes in silence. So, if you can’t think of anything to say, consider other ways of showing affection that don’t necessarily involve words: Watch a favorite movie with your loved one, cook them a favorite dish, or buy them a new blanket.

Supporting someone who is facing life-threatening or terminal illness is one of the most difficult things any of us will ever do. But, it’s also an honor we shouldn’t shy away from. After a while, Jennifer started regularly visiting Martin again. Given his increasing confusion, she knew they wouldn’t be able to have long, involved conversations. But, she was able to express to him the one thing that really mattered—that she loved him. In addition, she brought him one of his favorite books and read it to him cover to cover while he silently, and happily, listened.

Several months later, after Martin passed away, she wrote me a letter expressing her gratitude for encouraging her to spend more time with him. “Losing someone like this is an experience I don’t wish on anyone,” she wrote. “But, being with him as much as I was able to is an experience I’m glad I had and will never regret.”

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