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Is Hospice Losing Its Soul?

Hospice is moving into the health care mainstream. Here's why we should worry.

As a hospice nurse, Amy Getter has cared for more than 1,000 people at the end of their lives. She has watched countless families meet the extraordinary challenges of tending to a dying loved one at home, with grace, strength, and competence. And she worries that the most humane, intimate elements of hospice care are eroding in today’s health care environment.

In some ways, hospice is becoming a victim of its own success. As it has moved from the health care fringe to the mainstream—as its use (and its costs) have soared—hospice programs are coming under the kinds of financial and regulatory pressures that have made the rest of the health care system such a nightmare to navigate. Hospice has become big business. It faces tighter government regulation and greater scrutiny. In the name of accountability and efficiency, there’s a push to standardize care.

Accountability, oversight, and best practices are important, of course. But at some point rules and regulations about how hospices can operate threaten the essence of the holistic, family-centered hospice approach—one focused not only on relieving suffering but also on helping patients and families to live as fully as possible in the time that’s left. “My gut feeling is it’s really easy to become experts and proficient in all the regulations and forget what we’re really supposed to be doing,” Getter told me.

I called Getter after reading her post on the GeriPal blog, “Back to basics: are we losing sight of what hospice care is all about?”

She wrote:

“I heard again, from hospice staff this week, how a family should let a patient be transferred out of the home and placed ‘where experts in the end of life could care for him’ while the loved ones could just be ‘the family,’ coming to visit and sit at the bedside. And I was a little horrified that we, the hospice ‘experts’ are succumbing to the lie that caring for the dying is so complicated and cumbersome, we must rely on the ‘experts’ to provide the answers and often even the care. I do not believe that we, ‘the experts’ can provide the same level of solace as a person who has loved a dying family member all their lifetime. I am and always will be an advocate for the patient and family, with the conviction and goal in hospice nursing to create confidence in family members. They can be the ones who comfort and care for their dying loved one in their own home whenever possible. Isn’t that what most of us hope for, when we die, to be at home with family?”

Getter understands the push to standardize and compartmentalize, not to mention sanitize, dying. It’s messy and frightening. Some, maybe many, hospice programs need to improve. But death isn’t all science. We're fooling ourselves if we think that advanced medicine and technology are going to tell us all we need to know about how to die in comfort and dignity.

Like birth, Getter writes, death “has a sacredness and mysticism that cannot be quantified.” Listening, being present and bearing witness are essential acts of the best end-of-life care.

Getter started her nursing career in critical care but got discouraged by the often futile use of intensive, invasive treatments. She found herself drawn to the compassionate, family-centered hospice approach. “From the founding of hospice, the point was to address end-of-life care in a less medical environment,” she said. “Keeping it less medicalized is important.”

Getter she writes about her work on the Hospice Diary blog. She also has written a book to guide caregivers, "The Lamaze of Dying"—named for the popular childbirth relaxation techniques designed to put women, not their doctors, in control of the experience. Getter does not gloss over the difficulties of caring for a dying loved one at home. But she knows what the experience can mean to patients and their families, especially when they have strong support and coaching from hospice. She recalled a woman in her 20s who came home from college to care for her dying mom.

“The daughter was like a deer in the headlights and her mom didn’t want her to stay home. But the daughter stepped up and she was incredible. She told me, ‘Show me how to do this. Show me how to do that.’ I’ve seen that time and time again. People realize they really can care for their loves ones. And then it’s amazing. They not only realize they gave their loved one a wonderful gift of being at home. They also gain confidence.”

—Fran Smith

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