More on Language: Avoiding the ?d? and ?h? words when talking ...

Last month I wrote about the importance of choosing our words carefully when talking about palliative care. This month?s column is about avoiding talking about ?death,? ?dying,? and/or ?hospice.? Which is ironic given that many of us in palliative care have to encourage other clinicians to use these words when they talk to their patients and families about end of life. And there?s evidence that these simple words can help people come to terms with the reality of a terminal illness. But, it turns out they are not the ones we should use when talking about palliative care more broadly.

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The CAPC poll last summer confirmed what many in our field have already discovered: most people do not want to think or hear about death until they personally have to, and even then many are reluctant. This is a problem for palliative care because no matter how much we say it?s not just for people who are dying, mention of the ?d? or ?h? words takes the listener straight to end of life.

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This is a practical and strategic challenge. First of all, think of the names of some of our leading palliative care organizations: the Hospice and Palliative Nurses Association (HPNA), the American Academy of Hospice and Palliative Medicine (AAHPM), the National Hospice and Palliative Care Organization (NHPCO). Perhaps it?s the frequent combination of the words ?hospice? and ?palliative care? that contributes to people thinking they are one and the same. And why wouldn?t they be confused? Much of the media coverage palliative care gets focuses on the end of life, dying aspects. I appreciate that these are compelling stories but, over time,? they only make it that much harder to position palliative care as appropriate earlier in a serious illness.

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So there are some strategic decisions to be made. For instance, should our national organizations shift to only using their abbreviations instead of their full names? This is perhaps like the NAACP since people feel uncomfortable, in 2012, talking about ?colored people.? ?Or do we change those organizations? names to remove ?hospice? since hospice is implicit when we talk about palliative care? (Don?t get me wrong: I?ve worked in hospice and by no means suggest minimizing how wonderful those services are. I just don?t think palliative care should lead with them.) Do we resist the impulse to tell end-of-life stories when talking to the press, policy makers or anyone outside the field?

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I?d love to start hearing compelling stories about how early palliative care makes a difference. Like the patient I met last month at my hospital. He had been diagnosed with stage IV lung cancer but had a very high functional status. Despite the cancer?s late stage, his oncologist suggested trying some chemo and radiation. And watching him wolf down his hospital lunch, I couldn?t disagree. Then his fianc? of many years asked about help with getting married since, as she pointed out, it would be hard for her to eventually take FMLA (Family Medical Leave of Absence), if she wasn?t an ?F? (family)! So we got the hospital chaplain involved and might have had a hospital wedding if the patient hadn?t done so well he was discharged to rehab a couple of days later.

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Now we?ve all heard about deathbed weddings. In fact, the New York Times Vows column on August 12^th?ran just such a story?. ??But the story I?m telling is no deathbed scene: this patient likely has months of time left. And palliative care for him means helping him get married, go home, and be productive. Yes, he meets the criteria for hospice admission given his cancer?s staging, but given his goals, what he really qualifies for is out-patient palliative care. Because he?s not dying right now. If we could tell more of these kinds of stories, and watch our language to minimize the ?d? and ?h? words, we could perhaps reshape what people think about palliative care.

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Let me know what you think. What experience do you have talking about palliative care vs. hospice?

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Source: http://palliativejournal.stanford.edu/?p=7067&utm_source=rss&utm_medium=rss&utm_campaign=more-on-language-avoiding-the-%25e2%2580%259cd%25e2%2580%259d-and-%25e2%2580%259ch%25e2%2580%259d-words-when-talking-about-palliative-care-2

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