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Posted December 16, 2012 | Leave a comment
Making the pain bearable
Palliative care eases symptoms of chronic illnesses
By Kim Walter
Deon Jaccard had a hard time when it came to taking new medicine, but after a sudden onset of several chronic diseases causing her disabling pain, she was ready to try anything.
After retiring from her career as a museum educator, Jaccard, 79, started getting diagnosed with multiple health issues.
"I have 10 different varieties of arthritis, connective tissue disease, and most recently, restricted lung disease," she said, sitting in her Woodstock home.
Jaccard went from doctor to doctor, only to hear from one she couldn't be helped because her medical needs were "too diverse."
"He told me I'd hit what they call the cracks in the medical world ... some patients just fall through those cracks, and it looked like I was going to be one of them," she said.
While many of Jaccard's ailments could've been helped through surgeries, after a diagnosis of peripheral neuropathy, the option was completely ruled out because it would keep her from healing properly.
From the chin up, Jaccard was fine, but the pain that coursed through her back and legs got to the point that she couldn't handle anymore.
Two years ago, her doctor brought up palliative care and the Palliative Medicine Consultants in Winchester, which works to relieve pain in patients suffering from many chronic diseases so they might have a better quality of life.
"I was astounded to find that there was a specialty that could look at everything I was dealing with and come up with a way to reduce pain," Jaccard said. "And I will say, the pain is much less ... even the flare ups are bearable now."
The small practice opened in 2008, and includes a physician, two nurse practitioners and a licensed clinical social worker. Palliative care itself wasn't officially recognized by the primary specialties until 2007, after which Medicare offered to cover it.
Dr. Jack Wright, the office's medical director, was a practicing family physician who was always drawn to the "more challenging cases."
"I've always liked sorting through things, doing research and investigation, and then coming up with some kind of answer," he said. "Palliative care fit in well with my background in family medicine. I've been trained from cradle to grave, and we see everyone in between."
Lynn Gray, the program administrator, explained that though the care can be linked to Blue Ridge Hospice, the two are not one in the same.
"Yes we are a subsidiary of hospice, but we are not hospice, and we are not a feed for it," she said. "Hospice provides palliation of symptoms for end of life care, but palliative care is for anybody at any point in their disease."
Some patients of the practice have been seen over the course of a few years, and of the 60 current patients being served, the ages range from 11 into the 90s. People are seen from the inpatient side, as well as after they return home.
"It's all about finding out what's going on with the patient, learning their needs, and figuring out the right combination of medication that can treat as many symptoms as possible," Gray said. "There's also the psycho-social part of it too, though ... sometimes people just need to come in and talk. They need to know someone's listening."
Wright said one of the reasons that palliative care is still not as widely accepted as he'd like, is because of the kind of medications that are prescribed through it.
"We're very strict about our medication oversight," he said. "Our patients sign narcotic contracts saying they won't be hopping from doctor to doctor or pharmacy to pharmacy."
Wright also uses the Virginia Prescription Monitoring System, which gives him access to when, where and how often patients are filling prescriptions. He said one of his patients is a man in his 40s with Chron's disease who requires a high dosage of narcotics that most doctors aren't comfortable prescribing.
"And they shouldn't be," he said. "But we are, because that's exactly what we do."
Wright sits down for about an hour the first time he sees a patient to understand their side of their medical history. He also goes through extensive records and communicates with their various doctors, as an official referral is required.
"It's part of his commitment in trying to put all the pieces together so he can look at the whole patient, the whole person," Gray said.
The practice also takes time to communicate with relatives and care takers of the patients.
"I think that's one major thing that distinguishes us from regular medicine," she added. "A lot of this is helping the patient and their family understand what is happening to them and what the options are. They can ask questions ... when you're going back and forth between doctors, the information can become fragmented. It's all about communication."
The palliative care office is patient driven, Gray said, and is based on the patient's wishes. For Jaccard, she was skittish toward the strong medicine, but trusted Wright and his specific directions.
"Now I know to go after the pain when it's warning you. Take the medicine, don't wait for the pain to become so intense that it's too late," Jaccard said. "I'm not expecting to get well, or even better. I can expect to get worse, but now I have every faith that the pain can at least be dealt with."
The practice has worked over the years with hospitals to educate staff on the care, so they can encourage patients to see if it might work for them.
"The nurses and doctors struggle with these patients, and they have an interest in what we do," Gray said.
Wright sits down with different medical leaders once a month to continue palliative care education and updates, and he hopes that in the next year or so hospitals will produce some kind of formal support for the care.
"We just have to keep driving forward with this, because we believe what we do makes a difference," he said.
Jaccard said the palliative care she's received has enabled her to accept an entirely different goal when it comes to the chronic diseases she suffers from.
"It has offered me a means to get back into life, back on track and back in a position to make some choices," she said. "There is a place where pain is tolerable, and place where it's not, and I've known both. From a patient stand point, I now know there is a means to deal with it."
For more information on Palliative Medicine Consultants, visit www.blueridgehospice.org/palliative-care or call 540-313-9220.
Contact staff writer Kim Walter at 540-465-5137 ext. 191, or firstname.lastname@example.org
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