It’s been more than two years since David Driscoll has been down to the shorefront behind his Sebago Lake home, but he still loves to look out the windows at the waters that he spent many years enjoying.
“I was quite the outdoor person,” said David. “I loved to go boating and fishing in the summer and snowmobiling in the winter.”
David, 64, is homebound these days. Fifteen years ago, he was diagnosed with arachnoiditis, a disorder caused by the inflammation of the arachnoid, one of the membranes that surround and protects the nerves of the spinal cord. It’s a chronic, painful condition, and one of several serious chronic conditions including diabetes and recurring infections that David says sent him to the hospital more than twenty times last year. “The doctors would treat me when I showed up, but once I left the hospital or the doctor’s office, I felt like I was on my own. I didn’t really have the help that I needed to live with this condition,” he said. He decided to consider palliative care.
Palliative care, as defined by the Center to Advance Palliative Care, is specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness, whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
David says he doesn’t remember how he met Robin Hirsh-Wright, LCSW, who is the director of Palliative Care Services for VNA Home Health Hospice, but says she was a real “saving grace” who helped set him up with palliative care services at his home. “Robin and the palliative care team have been outstanding,” he said. “They’ve taken care of my healthcare needs, and my emotional needs.”
Recognizing that there was a growing need for this service, EMHS launched its new community-based palliative care service line systemwide last year.
“Good palliative care is about finding a way to walk beside someone living with serious illness,” said Hirsh-Wright. “Our culture struggles to even talk about the concept that life doesn’t go on forever.” She added that the conversation eventually becomes about what makes life worth living, rather than about dying. As a patient recently told her, “It’s not that my illness went away, but that my doctors started listening differently, and my pain is much better managed.”
David says that he truly believes he is receiving better care because he is in the palliative care program. The nurse who visits his home twice a week attends to his medical needs, advocates for him, and sets him up with the services he needs, such as doctor’s visits or physical therapy.
“Two years ago, I could barely move my arms and feed myself. Life was horrible,” said David. “My palliative care nurse helped get me into physical therapy, and now my arms are back to normal and I can feed myself again.”
VNA Home Health Hospice operates the EMHS Palliative Care service line. VNA HHH is comprised of several formerly independent agencies including Bangor Area Visiting Nurses, Hancock County Homecare and Hospice, Hospice of Aroostook, Hospice of Eastern Maine, and Visiting Nurses of Aroostook. VNA HHH assigns nurse practitioners and social workers to seriously ill, homebound patients to focus on defining what is most important to patients who live with chronic illness. Those nurse practitioners and social workers collaborate with designated primary and specialty care providers.
“It is important that patients understand that palliative care doesn’t replace their clinical team, but rather partners with that team to sharpen the focus on mitigating the effect of illness on quality of life,” said Hirsh-Wright.
According to the Advisory Board Physician Executive Council, implementation of a well-designed plan that moves patients into palliative care sooner based on conversations among the patient, caregivers, and providers results in improved care quality, reduced inpatient costs, and lower total cost of care. And based on VNA HHH data, the need for that care will increase. By 2019, there will be nearly 250 thousand adults over age 65 in Maine, and roughly 20,000 of them would be eligible for palliative care.
David never thought he’d need this type of care, at least not at this point in his life, but he’s certainly glad that he has it. He may not be able to physically walk down to the shorefront of Sebago Lake, but says that he gets a peaceful and calming feeling when he looks out across the waters of Sebago Lake towards Mount Washington. He says he feels truly blessed to live in such a beautiful state and to have the support he needs to live his life and manage his chronic illness.
“I don’t think I’d be here today if weren’t for this program,” he said, “and you can quote me on that.”
For more information on EMHS Palliative Care, call VNA Home Health Hospice at 800-757-3326 or visit vnahomehealthhospice.org.