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.
As for giving up, he points to a New England Journal of Medicine study of two groups of patients with lung cancer. The group that had palliative care with symptoms agressively managed and lots of psychosocial support lived longer than the group that got traditional care.
A consistent process
The specialty is making such an impact that 10 of the primary care boards have picked palliative care up as a subspecialty, including pediatrics, neurology and surgery.
Good palliative care takes time. One of the misconceptions hospice battles, though, says Alethea Martinez, administrator of Hospice for Utah, is one that shortchanges families. "Oh, I thought we call you when he's on his deathbed." It's hard to help a patient or family reach a place of reconciliation, to control symptoms, to restore or maintain quality of life, to "finish up" important things, if time is too short.
Chaplain Ruth Zollinger of Hospice for Utah helps patients figure out their spiritual issues, not taking sides but helping them explore. Sometimes, she goes through photos with them or helps them figure out what they haven't completed that matters. If it's doable, hospice tries to make it happen.
"A good death is when an individual feels like he can leave — that he has lived and left a wonderful life," Martinez says.
Koepke describes a process of expanding comfort with the concept of death, as well as its processes, which are fairly standard regardless of the underlying illness that draws it near. "Hospice is somewhat of a coach in that end-of-life time period. What's going to happen, why it's happening. Families take quite a bit of comfort in that. For most, it's a huge transition for the dying and for their family."
You can accept it or not, but what will happen is fairly consistent: difficulty with breathing, with confusion, with thinking, with eating, with taking care of your body yourself, he says. Death at the end of illness is fairly predictable.
Once pain and symptoms are controlled, a hospice patient may find he possesses the gift of a little time to reestablish relationships, mend fences, offer forgiveness if she's so inclined. Chaplain Zollinger talks about helping a dying man spend one last Thanksgiving at the family cabin, a woman take her grandchild to Disneyland. Those reconciliations and opportunities are lost for those who turn to hospice late in a terminal condition.
Anger and withdrawal are not uncommon with a terminal conditon, at least for a time. Often, though, Koepke says, the dying person "blossoms out" and becomes a great resource for those who will be left behind. The good death includes pain management and helping patient and family deal with anxiety. The atmosphere can be orchestrated to help, from candles or other soft lights to music and loved ones as death arrives.
Hospice is a "no-brainer," says Dr. Michael Galindo, medical director for Intermountain Homecare and for Intermountain's palliative care team. And not just old people need it. It is for those who have advanced illness, a time when care is often very disjointed.
What we believe
This life's final journey, approached openly and even embraced, is a chance to touch and speak and finish what needs to be said, experts agree.
It's also an opportunity to talk to children about what a family holds dear and believes, says Dr. Joan Sheetz, associate professor of pediatrics at the University of Utah and director of Rainbow Kids Palliative Care Program, an in-patient consulting service at Primary Children's Medical Center.
"It depends on the developmental ability of the child," she says, "but talk with families about that healthcare crisis can be a wonderful opportunity to educate young patients and other children about what we believe, how we function. We take care of each other, respect each other, are here for each other. It can work as an opportunity to communicate who we are as a family."
Jolean Sloan cared for her husband, Richard, for seven years after he was diagnosed with Alzheimer's. In August, she realized it had become too much to do herself. At the end of his life, her husband of 54 years was bedridden and confused. She managed to keep him home, as she'd always planned, but it happened because she asked for help.
"I thought I could take care of my husband myself. I had no idea how hard it would be — the little nitty gritties you don't think about. ... My daughter got us with Hospice for Utah and I cannot begin to express my gratitude for the aides, the nurse, the help," she says. Richard was able to stay in their Clinton home until he died earlier this month.
Jack Batt knew the moment his wife, Melba, moved to CareSource's residential hospice that he'd be okay there if he ever needed that kind of care. Eight years later, he sits companionably by his daughter Kathy Salazar, looking out the window at the pasture that runs along the building's back, his "little slice of heaven" where three foxes are friendly with the horses, and talks about dying.
He has advanced prostate cancer that spread, but thanks to hospice care, no pain. At 87, his mind is clear and "I'm not scared at all," he says. "I'm ready to go join Melba. I've been fasting and praying about it."
"We believe in life after death," says Salazar, stroking her dad's cheek. "I would rather see him go when he's lucid and not in pain."
Editor's Note: Advance directive and end-of-life planning is an important and neglected topic. Families often shy away and when crisis comes, relatives are left trying to guess what someone would have wanted. This week, Deseret Media Companies have joined a coalition to raise awareness about the issue, in conjunction with passage of SCR2, which asks Utahns to consider making their own decisions, appointing an agent and having those tricky conversations. The Deseret News and KSL TV will be running stories on the subject all week.
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