Rabbi H. Rafael Goldstein on language that can make a difference

Words of Care and Words of Hope

There has been quite a lot of language that has disturbed me since the hurricanes. In particular, people are using the word “victim” to describe people whose homes have been swept away. This is the wrong word to use to describe people who have lost so much. Calling them victims takes away their dignity. No one wants to be described as a “victim.”

We can learn from the experiences of the AIDS epidemic. People living with AIDS insisted that there was good reason not to call them “AIDS patients,” “AIDS victims,” or people with a “terminal illness.” A “victim” is someone who has lost control of his/her life and is without power or hope. People living with illness have the ability to be much more than “victims.”

People whose houses were swept away are survivors. They have experienced the worst and are now in the process of rebuilding their lives in the aftermath of disaster. To describe them as victims diminishes the power and strength they demonstrate every day in getting their lives back to some semblance of “normal.”

Similarly, the use of the phrase “terminal illness” is disturbing. People living with terminal diseases are doomed. They have death knocking at their door. They have no hope for a cure, or the ability to overcome the obstacles they face. But all of us are living with a “terminal illness” – life. None of us knows when our days will end. The rabbis teach us to live each day as though it were our last. If we do that, the concept of “terminal illness” is irrelevant. The question is not how much time you have but what are you going to do with that time?

“People living with illness" emphasizes that they are alive, can continue to live, to survive, and are doing something with their time. One of the conditions with which they live is illness, but it isn’t all that they are. One of the conditions hurricane survivors live with is their loss. But they are more than their losses.

When my mother was dying, my brother kept saying, “She’s failing.” I didn’t argue with him about the terminology at the time, but I was stung by it. She had heart failure and renal failure. I could understand those concepts: they made sense – the organs weren’t working the way they should. But she wasn’t “failing” at all – she was dying precisely the way she was supposed to. How did she fail? What does it mean when death means failure, instead of being the natural order of the world?

Words have power. We have to be careful how we use them.

Hospital staff need to look at the language they use when describing the end of medical intervention for a person who is dying. Sometimes I hear that “care is being withdrawn.” When the nature of “caring” for people changes from aggressive to palliative, the “care” doesn’t change; the intervention does. “Care” may be in terms of cure, or it may be in terms of pain control, but it is still “care;” It does not diminish or decrease as a result of the inability of the medical intervention to stop, prevent, or delay death. “Care” and “intervention” are not synonymous.

Finally we need “hope.” There’s no such thing as a “hopeless situation.” Hope changes, though. For people who have survived disasters, we hope for their recovery from this significant and wrenching loss. We can’t hope for all their “stuff” to come back to them. Hope has to be connected in some way with reality. So too with people living with illness if all you hope for is a physical recovery. Hope doesn’t have to be about physical healing. Once you get away from being locked into a limited sense of what hope is or can be, there’s a lot to hope for: less pain, increased ability to share and appreciate each moment, an easy transition to the next world, or even that there is life after death. You can hope for the well-being of loved ones and survivors.

As we care for survivors of all kinds, may we find ways to bring healing and hope both through our interventions and our words.

Rabbi H. Rafael Goldstein is the Coordinator of Spiritual and Health Counseling at Jewish Family and Children’s Service in Phoenix, AZ. He is a Board Certified Chaplain and was ordained by the Academy for Jewish Religion in 1994. He also serves part-time as the rabbi for Congregation Kol Haneshamah in Irvine, CA.

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