5 Hospice Myths Dispelled

Experts share how to live well while dying

Six years ago I first learned about hospice care, in the last months of my uncle’s life. My uncle was a kind man, beloved by all of my cousins, the sort of guy kids are drawn to because they innately sense safety and kinship behind those gentle, twinkling eyes. He was only fifty-six years old when cancer stole that sparkle, and when I learned that my aunt had called in hospice after exhausting all available treatments, I angrily shrugged my shoulders along with the rest of my family. Yep, it was time to give up.

But what I didn’t know then—and what I fully understand today—was that it was actually a beginning of sorts. We lost him, but we gained something, too.

In the years since, I have watched other loved ones use the tools of hospice care to continue evolving in life, even as they were dying. And as wretched as those losses have been for those of us left behind, it is a tremendous comfort to know they left this world on their own terms, without pain and fear, and with an undeniable serenity. In my experience that’s exactly what hospice does—but it’s still widely misunderstood.

Myth #1: Hospice is only for the final days

To qualify for hospice, one must have a “life-limiting condition” with a prognosis of six months or less—and yet the vast majority of hospice patients use hospice care for mere weeks. Letting go of the search for a cure is understandably one of the biggest barriers to accepting hospice care, but the more time an individual has to explore the physical, emotional, practical and spiritual aspects of his or her life, the richer that remaining time can be.

“When we get a patient who dies later that week, even though we are able to provide good palliative care and manage their pain effectively, that’s something we could have done for them for the preceding five and a half months,” says Julia Houck, acting president of Agrace HospiceCare. “There’s a lot we can do for them, but we can impact them so much more powerfully if they’re a patient sooner.”

Myth #2: Hospice means giving up

“We actually discharge about 13 percent of patients,” says Houck. At Agrace, each patient is assigned his or her own interdisciplinary team that evaluates the entire health picture, from medications to secondary illnesses that may be exacerbating the primary diagnosis and more. This focused effort not only improves quality of life, but in some cases it extends it significantly enough that the individual no longer qualify for hospice.

For those who remain, however, giving up on a cure doesn’t mean giving up on life.

“We try to redirect that hope from cure to healing,” says Tom Moreland, CEO of Saint Jude Hospice, a Catholic-based organization with seven hospices in four states, including Wisconsin. “There may not be hope for that tumor or those damaged lungs, but what about the hope of having a special good-bye with family? Of being surrounded by loved ones? Of having a pain-free death?”

Moreland says whether it’s a secular goal like a reunion with an estranged family member, or a renewed commitment to faith in the afterlife, there is much hope to be found in end-of-life development and healing.

“Ultimately that disease will win in the physical body,” says Moreland, “but how many things can we win in other areas of that person’s life?”

Myth #3: Hospice is just about the physical body

Hospice doctors and nurses handle physical needs and pain management so that patients can remain comfortably in their homes, but the care doesn’t stop there. Social workers and chaplains ensure that emotional and spiritual needs are met, and volunteers provide practical services like painting nails, cleaning the kitchen or simply sitting and talking. Assistance is available for managing end-of-life paperwork, and great pains are taken to meet final wishes, whether that’s dinner out on the patio every night or walking a daughter down the aisle.

“It may sound like an oxymoron, but there is such a thing as a good death,” says Agrace HospiceCare’s Houck, “one that allows the individual and the family to move through that natural process with compassion, comfort and dignity.”

Saint Jude Hospice’s Moreland puts it like this: “We are not treating a wound, we are treating a person in their wholeness. We are treating their emotional or psychosocial suffering, we are treating their soul. All of our different staff members work together to really get that person ready, to where they actually look up and say, ‘I’m ready to go now.’”

Myth #4: Hospice care is too expensive

Anyone who qualifies for Medicare (Americans over the age of 65) has a hospice care benefit under Medicare Part A. Additionally, almost all private insurances carry a hospice benefit, and for the uninsured Medicaid usually pays for it. Beyond that, both Agrace and Saint Jude’s designate part of their budgets for making hospice care accessible to everyone.

“If after all three of those you still don’t qualify, we give care free of charge. We have never turned any hospice-appropriate patient away,” says Moreland, citing everyone from the homeless to the undocumented. “Everybody deserves to die with dignity, and I’m not going to withhold that service because they can’t afford to pay for it.”

Myth #5: Hospice serves only the dying person

At Agrace HospiceCare, grief counselors work with families ahead of time to determine the potential needs of those who will be left behind, whether it’s an aging widow or young children. Since 1978, the non-profit has provided grief counseling and support groups to everyone in the community, regardless of whether they used Agrace services or not. In 2011 alone, they served over 5,000 individuals with grief counseling. Agrace also offers respite services for family members who need a break or need to travel; patients can check in to the Ellen and Peter Johnson Residential Unit for up to five days while caregivers do what they need to do.

For Moreland at Saint Jude’s, this care for the caregivers cannot be underestimated. “We’re able to take a large burden off of them,” he says. “Maybe the spouse has been bathing them all this time, or helping them eat. We take that burden away from family members so that they can be the daughter or the wife or the husband, enjoying those last days together.” •

- Maggie Ginsberg-Schutz

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