Laura Seitz, Deseret News
The second article in a five-part series. Read the first article: "How will I die: preparing your family, directing your care"
Laura Voorhees doesn't look like she's starving for air.
Her cheeks are rosy, her hair beautifully styled. She's put on a pretty dress to meet the newspaper camera and her laughter tinkles throughout the conversation, easy and bright as her sun-drenched house. As she and her daughter, Sharon Packer, sit on the couch, answering questions, their fingers are intertwined and they sometimes giggle and lean into each other. Later, when the excitement subsides a bit, Voorhees will be exhausted, perhaps even for days, her nurse says.
Voorhees — mom, grandma, gardener, reader, worshipper and widow — is winding down with a chronic and serious breathing problem. At 87, she's on hospice care, which means she's not expected to live more than six months, although lots of people not only outlive that prognosis, but do so much better on hospice care that they may no longer even qualify for the service.
Packer's on hospice care, too. Not because she's dying or even slightly ill. But she's family. And hospice takes care of their needs, as well.
"After all these years, it's still difficult for people to understand that hospice does not mean giving up," says Stephanie Lucas, hospice family services coordinator for Intermountain Homecare Hospice. "In many ways, it's very aggressive care, with pain management and symptom control. ... We do everything we can to keep them functioning and comfortable."
The plans that patients, families and hospice develop consider health, spiritual wellbeing and even family dynamics. End of life is when many shattered relationships get put back together. End-of-life experts say when there's family discord about what to do, it often comes from the child who has been estranged and not involved as much. Hospice tries hard to bring them all together, to reach agreement. But it will be the patient's wishes that matter.
What's truly unique about hospice is the care that stretches beyond the patient, Lucas says. Hospice caregivers teach all involved what to expect as a specific disease progresses. And when death finally arrives, they linger to help the family grieve. Bereavement services can last up to a year.
But it is a gravely misunderstood service, surrounded by myth and misconception, says Dr. Mark Koepke, Intermountain Homecare Hospice medical director and a longtime emergency care physician. "Just the word hospice has some connotation to people. For some, it's a sense of giving up on the patient and stopping all aggressive medical intervention."
That's not what it means at all. He became a hospice doctor after he saw that the end-of-life patients he took care of in the emergency room, those with sudden traumas or even expected but acute issues, were the ones he seemed most able to help, although he could not fix their health woes. He could tell them the truth and explain what was happening to them.
When you have a 40-year-old with a dense stroke, everyone's caught off guard, he says. "To know options is sometimes very reassuring." Experience helps him sort out which patients are willing to hear it and which aren't, but he doesn't shy away from discussing death. Hospice, he says, is a way of taking control of it. "We're not going to give up hope, we're going to change the focus of hope."
Hospice is centered on palliative care, specialized treatment for people with very serious illness, its goal not a cure, but to relieve symptoms like pain, stress and psychosocial angst, says Dr. Bruce Chamberlain, former medical director of University of Utah Hospital palliative care. If a cure is possible, he says palliative specialists cheer on the doctors who are working on it, but focus their own efforts on quality of life, usually with a team that includes doctors, nurses, nurse practitioners, chaplains, social workers and others.
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