My mother doesn't want to know how long she has to live, so how do I say the things I need to say before it's too late?

A fellow caregiver asked...

My mother, who has had a recent recurrence of cancer, has told her doctor, myself, and other family members that she doesn't want to be told if her cancer is terminal or how long she has to live. So far we've honored this request, but she doesn't have much time, and there are things we'd all like to say to her before it's too late. Instead, we have superficial conversations and pretend that there isn't a massive elephant in the room. My siblings and I are wondering whether we should go ahead and tell her that she is dying, so we can talk honestly about what is going on and say good-bye. There are also details that need to be discussed. For example, we'd like to consider hospice care as her health deteriorates. What's the right thing to do?

Expert Answer

Wendy Wank is a palliative care nurse practitioner at Hospice by the Bay, in Larkspur, California.

Everyone has her own way of dealing with death, and your mother is clearly coping with her illness and mortality by choosing to stay in the dark. This puts you and your siblings in a very difficult position: You don't want to defy her wishes, but you do want to express your feelings and share these last days with your mother in an authentic way.

There's no easy answer to your situation -- or necessarily a "right" one. You and your siblings know your mother better than anyone else. You're the best judges of what she can cope with and how you'll feel in the long run if you tell her against her wishes -- or if you refrain from talking altogether.

I think your mother knows that she's dying, and that despite what she has said, she'll wish to discuss her death with you as it gets closer. In my experience as a hospice nurse, people almost always know when they're dying, whether they talk about it or not. And most people find it a relief to have their impending death acknowledged and to be able to discuss it with those they love.

This doesn't mean that you should walk into your mother's room and blurt out the information the next time you go to see her. Choose a quiet moment and approach the subject gently to see how she responds. You could say something like, "Mom, I know you don't want the details of your health prognosis, but there are some issues we need to discuss about your care over the next few months."

This opening will give her the chance to revisit the topic and let you know whether her feelings have changed. You may find that she's more open to talking about her death than she was even a few days earlier, as she's had time to come to terms with it on her own. Or she may be willing to talk about practical details, including hospice care, without touching directly on her feelings about dying.

Once you introduce the subject, let your mother take the lead in the conversation, and if it's clear she won't discuss the matter, give it a few days and try again. Each person moves at her own pace in terms of being able to accept the realities of dying.

Although it's relatively rare, I have known a few patients who refused to acknowledge their death right to the end. If your mother remains resistant, consider talking to a religious counselor or a hospice representative about how to handle the situation given your mother's specific needs -- and your own.