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Isn’t It Time We Talked About It?

This is an excerpt from an article I wrote for WETA magazine several years ago in connection with a PBS series on end-of-life care hosted by Bill Moyers. I was prompted to bring this up again after the father in law of a good friend went into hospice care last week. My husband’s parents both died under hospice care, and I was so glad to have that support. I also found moving Bill Keller’s recent story in the NY Times about hospice care in Britain. I wish more people knew that peace is possible even at such difficult times.

How do you begin to talk about dying? Our youth-worshipping culture refuses to discuss the subject, and many of us seem happy to pretend that deaths will never happen to us or to our loved ones. But that denial robs us of the chance to make the inevitable end-of-life process less traumatic. Indeed, other cultures see potential joy as well as grief in the passage. Perhaps we can too, if we’re not afraid to reach out to each other.

Working at a hospice, as I do, gives on a unique perspective on the way in which individuals face death. Our patients all know that their time is limited. They make the most of it. Watching them use that time to communicate with their families and reach spiritual peace has been a revelation to me. After the deaths of a patient who ended his life at home surrounded by his family, one of our nurses spoke of her respect for him. “He ate from the garden he grew,” she said. “His daughters loved him and were glad to be with him at the end.”

Although a majority of people say they hope to die at home in familiar surroundings with their loved ones nearby, most of us still die in hospitals and nursing homes. Although our culture values control and choice, many patients say they fear losing control over the end of their lives and suffering a death they never would have wanted. Families often struggle through the death of a loved one without adequate support at this time of crisis.

All that is changing, however. Beginning with the hospice movement in the 1970s and continuing with the development of palliative care as a recognized medical specialty, we are on the cusp of a new era in end-of-life care. Many liken the current environment to the beginning of the childbirth reform movement of 10 to 15 years ago, when consumer demand forced improvements in the healthcare system. The result was a more humanized childbirth experience with family-friendly delivery options and better care for both mother and baby. Now, advocates are trying to do for the end of life what was done for the beginning: to treat dying as a natural event while offering the highest quality of care possible under modern medicine.

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