Jim lay in bed, eating his favorite meal of a hamburger and fries. He smiled at his nurse, Betty.
Jim had been on hospice service for a little over six months. A 59-year-old male with congestive heart and lung failure, Jim began his journey with our hospice organization in the hospital being weaned from a high level of oxygen. He then moved to our hospice inpatient unit, which is intended to serve those patients whose pain or symptoms cannot be reasonably treated by lay people in a home setting. The team at the inpatient unit was able to further wean him from his high dependence on oxygen and he moved to a nursing home. Several times, his symptoms became acute and he moved back to the inpatient unit, believing that the next breath would be his last. Every time he stabilized.
Although fiercely independent, on his last trip to the inpatient unit he requested that his sister visit, asking that he go home with her to die. She agreed. For his last meal, his sister grilled a hamburger and bought some fast-food fries; pure joy for Jim.
As he lay in bed and smiled at his nurse, Betty, he had a question.
"Betty," he began, "do you know that I can't afford any of this?"
Betty looked at him quizzically and surveyed the room, "How do you mean?"
"Not this room," he continued, "I mean, all the care you've given me ... and Opal too. Did you know I can't pay for any of this?" Opal was his Hospice Aide who went every day to bathe him and provide personal care.
"Well, Jim ... not really. We don't really pay too much attention to that kind of stuff."
Jim nodded and smiled. "I didn't think you did. You all have never treated me like you knew."
In an age where non-profit hospices are becoming a rare species, one begins to wonder -- does being a non-profit hospice matter?
To answer this haunting and pressing question, I think of the experience of Jim and I also think of the Glasswing Butterfly.
The Glasswing Butterfly comes from Central America and is often found in regions spanning from Mexico to Panama. It's quite common in its zone, but it is not easy to find because of its transparent wings. Rainforest ecologists say that the presence of this rare tropical gem is an indication of high habitat quality; its demise alerts them of ecological change.
As we ponder how non-profit hospices are becoming rare gems, we must first ask why for-profit hospices exist. Peter Drucker, financial management guru and author of Managing the Nonprofit Organization, writes that the key difference between non-profit organizations and businesses is "the financial bottom line." Drucker acknowledges that the financial bottom line is tangible and measurable, but ultimately forces individuals to make self-centered decisions focused on survival. Despite a business's initial reason for existence, decisions begin and end with money. If businesses are entering the hospice field, then there must be money to be made, and that goal may shape the type of patient one seeks to serve.
On page 472, Drucker writes:
"From 2000 to 2007, the number of for-profit hospices more than doubled from 725 to 1,660, while the number of non-profit hospices remained essentially the same --1,193 in 2000 and 1,205 in 2007. Overall, for-profit hospices have significantly higher profit margins than non-profit hospices, varying from 12 percent to 16 percent between 2001 and 2004, compared with -2.9 percent and -4.4 percent for non-profit hospices."
Inspired by the facts above, authors of a recent study published in the Journal of the American Medical Association show that your hospice's business model does shape the type of patients you serve. The study does not show that the quality of care is different, just that non-profit hospices that tend to serve the most expensive patients are on a fast road to extinction.
Non-profits also must have money to survive, but according to Drucker, they are defined by their ability to be "human change agents." Drucker writes that the results of a non-profit are always defined by a "change in people -- in their behavior, in their circumstances, in their vision, in their health, in their hopes [and] above all, in their competence and capacity." To be a non-profit hospice provider is to live the belief that end-of-life-care is always about the patient and family, their "competence and capacity" and not about the financial bottom line.
As hospice team members, we never enter center stage in the end-of-life journey of our patients and their loved ones. Although our hospice team members represent the possibility of finding life in the midst of death, we are not the life itself. The life is already there. When we reduce anxiety, relieve pain or teach a caregiver, we free patients and families to experience life in the midst of death. We are a transparent butterfly; we are a lens of new life.
Jim died the next morning. Jim did not need anyone to make his final journey for him. He needed companions who respected him, dignified his life and treated him as the human being he was -- a human being who was not defined by his resources, but was defined by his life.
A poet described the Glasswing Butterfly as a creature who rivals the beauty of a stained glass window, its wings shimmering in the sunlight like polished panes of turquoise, orange, green and red, reminding us that all things beautiful do not have to be full-color to be noticed. In life, that which is unnoticed can have the most power. As a non-profit hospice provider, we free our staff to serve unnoticed, to be transparent butterflies. Our local community profits when our non-profit hospice serves it well. The existence of a non-profit hospice, like the existence of the Glasswing Butterfly, indicates a high habitat quality in our community.
To read more about aging, death and dying from Amy Ziettlow visit www.familyscholars.org
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