It seems inevitable that when people hear the word “hospice” they immediately start to think about dying. I’ve seen it happen, the word is spoken and a certain gloom settles; people began to speak in hushed, somber tones. The impression is that people who take care of hospice patients sit around in the dark and cry most of the day.
I hate to break it to you, but quite the opposite is true. Hospice is really about living. That’s right; you read that correctly, hospice is about living life to the fullest. In fact, the definition of hospice care is to prevent and relieve suffering while improving quality of life.
As a hospice physician this means I get to spend my time brainstorming with nurses, social workers, chaplains, and volunteers, trying to think of ways to help people live more symptom free, emotionally whole lives. For Ms. A. with severe lung disease, this meant adding in a medication to allow her to breathe easier. Being able to physically do more allowed her to enjoy living again. It was something different for Mr. H, who had end stage heart disease and was estranged from his family. Through a series of phone calls and meetings the family reconciled, transforming Mr. H into a new person. At times it’s simple, like for Mrs. B, who after being diagnosed with cancer missed her weekly bridge game. Volunteers stepped in to add this ritual back into her routine, vastly improving Mrs. B’s mood and quality of life.
And here is the greatest paradox of all this; by focusing energy on improving quality of life, people actually live longer. There have been many research studies showing this, the most recent one in the New England Journal of Medicine last August. This benefit hospice has on prolonging life depends on how early someone joins. Simply put, if you wait until the last few days to sign up, there won’t be much added time. The earlier the better is almost always true when it comes to hospice. In fact, what I hear from patients is, “I just wish I would have known about this earlier!”
So, when is the right time for hospice? First you must qualify with a life limiting illness. Typically people think of cancer, but it is much broader than this. Hospice diagnoses include end stage liver, kidney, heart, and lung diseases, stroke, diabetes, and dementia, and that’s just the beginning of the list. Your doctor can tell you if you qualify. Next, you must ask yourself this question: Would I rather have shorter days on earth but feel good those days? Or would I rather have more days alive even if those extra days potentially were filled with suffering? If the answer is quality over quantity, then hospice is the choice.
Finally, that last word choice is crucial. It is your choice. No physician, friend, or family member knows what it’s like be you.
Now if you’ll excuse me, it’s time to get back to work at hospice, back to work living that is.
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