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."
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