A bi-partisan bill before the Wisconsin Legislature would set up a Palliative Care Council within the state Department of Health Services. The measure would also require the state to establish an education program on palliative care.
The growing field of palliative care treats patients with life-limiting illnesses. It's not for the end of life.
Many in the Milwaukee-area are already in palliative care, like Ruth — we're not using her last name due to privacy considerations. The retired nurse from Oconomowoc was diagnosed with pancreatic cancer seven years ago. The cancer has now spread to her liver.
Ruth says she's been doing pretty well, until earlier this year.
"In the last couple months, I have not bounced back to myself, where I can navigate around and we can go wherever we want to go. I've been a little slower, and don't have the same energy or the same ready-to-go kind of feeling," Ruth says.
So Ruth took her doctor's advice and contacted the palliative care office at Froedtert Hospital in Wauwatosa.
"With a career of 45 years in nursing, I grew up in the era when palliative care and hospice care were really kind of the same thing. Once you went into palliative care, and hospice, you were going down the road of end of life," Ruth remembers.
Hospice care is still designed to support someone in the end phases of a terminal illness, according to the National Institute on Aging. But Ruth has changed her impression of palliative care.
"While they're not going to make me better — cure me — there are some things they can do to make it easier for me. Some strategies for talking with my children and grandchildren about the fact that I'm going to be going sooner, rather than later, probably," Ruth says.
She says for her, a highlight was receiving a children's book by Patrice Karst, The Invisible String. The book says loved ones are always connected. Here's an excerpt:
"Then Jeremy quietly asked, 'Can my string reach all the way to Uncle Brian, in heaven? ' ' Yes, even there.' "
Ruth says she's also received medication for some of the symptoms of her cancer.
Wendy Peltier is one of Ruth's palliative care doctors. Peltier says she hones in right away on the patient's needs, and develops a plan.
"Not to say that cancer doctors don't do that, or try to do that. But we rely on them to give us the best possible treatment, which has become very technical these days in cancer care. They don't always have the bandwidth, the time, or really the training to deal with some of these other issues. So, it's definitely a partnership. It's a team approach," Peltier explains.
Peltier says she's also willing to talk with the patient about difficult treatment decisions ahead. She says the consultation service at a large complex like Froedtert and the Medical College of Wisconsin sees over a thousand patients per year.
Earlier this year at the Milwaukee Regional Medical Center, a leading national advocate of palliative care was a guest speaker. Dr. Ira Byock says about 80% of large hospitals in the U.S. have some sort of palliative program. But Byock says in many places, the programs are threadbare.
"The palliative care programs are understaffed. They are unavailable nights and weekends. There's a large need in various parts of the hospital — in the critical care units, among the surgical patients, the transplant patients, I could go on and on — who could greatly benefit for care, concurrent with their disease treatments. But it's simply not available," Byock says.
Too many health care systems see palliative care as an expense, Byock says. But he says costs usually go down.
"They go down because people spend less time in the hospital, and more time at home, where they want to be. Their needs are met. They live as long, or longer as patients who do not receive palliative care. But they do so, outside of medical settings," Byock said.
New Jersey has just passed a law that will require hospitals, nursing homes and rehabilitation facilities to give comprehensive information about palliative and hospice care to patients with serious illnesses. The similar bill in the Wisconsin Legislature, setting up a Palliative Care Council, is in committee but could be acted upon during the current two-year legislative session.
A fiscal estimate prepared by the Department of Health Services this summer said the annual cost of the program would be about $110,000.
Support is provided by Dr. Lawrence and Mrs. Hannah Goodman for Innovation reporting.
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