Susan Nolan's The Journey: A call to embrace hospice sooner

By SUSAN NOLAN April 22. 2016 6:36PM

I WISH "HOSPICE" had a different name.

Maybe we could name it "The Joy for the Journey Experience," or perhaps we could call it "The Travelling Home in Comfort Service."

"We have decided to help our mother have a safe, sweet journey home," someone might say when putting their dying mother on hospice. "It's been a bumpy ride, and it's about time she travel in comfort."

That's what hospice is really about these days. It's about giving wonderful extra care to people with life-limiting illness. It's about helping people enjoy enhanced quality of life during the end stages of chronic disease.

But words are powerful, and it seems the word "hospice" has come to mean "She has cancer and only has a few days left."

It's scary.

So people are often afraid to call in hospice. They see it as a death sentence; as giving up hope.

Truth be told, hospice can be a life-extending choice, rather than a life-ending one.

In my work as a hospice chaplain specializing in eldercare, with most of my patients in nursing homes, I have come to see what a blessing hospice care can be. It's a nursing aide giving a manicure to a woman who has not had one in years, giving her a face massage, playing her favorite music each day, taking her out into the sunshine in a wheelchair where she can listen to the birds or smell the lilacs on the bush outside the building.

It can be an aide reading to her blind patient each day or simply holding a hand and offering tender affirmations to a lonely old person. Often, it's that hospice aide helping feed those special shakes to a patient who needs a little extra nutrition.

Of course, once a loved one is imminently dying, it's a different story. In that case, we "get" that they are hospice-eligible. Perhaps the elder has not eaten or drank for days and they are now unconscious (non-responsive). We understand that they need hospice at that point.

But honestly, they are usually eligible for hospice services much earlier and could really benefit from the service, which is paid 100 percent by Medicare and other insurance companies.

Many hospice patients these days have Alzheimer's or other dementias, a terminal disease that is a common hospice diagnosis. They may have end-stage kidney disease or COPD (cardiopulmonary disease) or cardiac problems and are eligible for hospice services months before their death. Months.

If they come on to hospice services early enough - instead of right at the end - a hospice team may even help make their end-of-life wishes come true. I have had patients attend a last Red Sox game, go to the beach one last time, and go fly fishing. A hospice agency can arrange for an ambulance or a chair car to transport the patient from a nursing home to a chosen event.

One of my patients loved animals and wanted to go to an animal rescue shelter in her hometown. So we arranged transportation from the nursing home and a nursing aide to help her. And she spent one lovely afternoon petting kitties and puppies to her heart's content. We took another man home to see his dog one last time. For another man, it was a last trip to the fire station where he had served as chief for more than three decades. There is no end to the opportunities that hospices can provide.

But the last few days of a person's life are too late for those short trips or those hand massages or afternoons in the warm sunshine.

If we can get past our fear that hospice is a death sentence and realize that it can be life-giving, then we can provide our loved ones with the simple joys they deserve while they are still able.

Hospice can bring joy to a journey.

Susan Nolan, a longtime New Hampshire journalist and a hospice chaplain specializing in eldercare, believes in the philosophy "Life is a journey, not a destination." She can be reached at, on Facebook at Susan Nolan Columnist, or on Twitter #susandnolan.

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