The hospice and palliative care programs at Notre Dame Health Care in Worcester are about living – even in the face of sickness and death.
The two programs are very different, said Patricia Thibeault, director of marketing and admissions for Notre Dame’s At Home division. Both provide support, but in different ways.
Hospice, a federally regulated program, supports terminally ill patients and their loved ones, she said. The patients, who have a six-month life expectancy at most, are not typically seeking a cure, though some do get better.
By contrast, palliative care programs vary, she said. Patients do not have to be terminally ill or discontinue treatment to participate in the program Notre Dame offers.
Notre Dame’s hospice “really focuses on mind, body, spirit,” Ms. Thibeault said.
“There’s a lot more … living to do, even if you have a terminal illness. By bringing in a team of people, you’re focusing not just on the disease, but the person as a whole,” she said. “We offer a team that can work with patients and loved ones for spiritual guidance, social work and music therapy … while making sure the person is physically comfortable, with dignified personal care by home health aides.” These aides – certified nursing assistants trained in hospice work – can bathe patients and provide other types of personal care.
“We want to make sure you stay dignified and look how you want to look,” Ms. Thibeault explained.
Notre Dame is a faith-based organization, and people of any spirituality are welcome to participate in its hospice program as patients or team members, she said.
Trained volunteers provide “general companionship,” she said. There is hope of launching pet therapy soon. And, after a patient dies, a bereavement specialist supports the family for 13 months.
A case manager – a registered nurse serving 12-15 patients at a time - coordinates the team for each patient, Ms. Thibeault said. Coordinators meet every other week with the medical director, a physician.
“We always have nurses on call to help provide support as needed” around the clock, Ms. Thibeault said.
Team members’ salaries, equipment like hospital beds, and some medications for hospice patients are typically covered through Medicare, “but we also take private insurance,” she said.
“Our goal is for you to be able to live while on hospice,” she said; hospice isn’t about hastening patients’ deaths.
“If they get significantly better … they can graduate off hospice,” she said. “But if they continue to decline” they can stay on the program. “There’s no time limit”; some have stayed more than two years.
Notre Dame’s hospice, started in 2007, currently serves about 95 patients in the Central Massachusetts area in their own homes or wherever they live, Ms. Thibeault said. Notre Dame does not have hospice living space.
“We’ve grown a lot in the last couple of years,” in numbers of patients, because “we’re known for a high quality of care,” she said. There are not many hospice programs in Massachusetts for children, but Notre Dame’s is one of them, she noted.
“It elevates the fact that we are very mission-driven and that we can provide such quality of care for all the people that need it, regardless of their age,” she said.
PALLIATIVE CARE
Notre Dame also provides palliative care to children and adults in Central Massachusetts.
Ms. Thibeault said Notre Dame’s state-funded pediatric program, which now serves about 150 children, started in 2012. The adult program, which serves about 60 patients covered by Medicare or private insurance, started in 2021.
Adults with serious, chronic or terminal illnesses do not have to be hospice-eligible to enter the program, Ms. Thibeault said. Nurse practitioners can educate them about the disease process, and help with advanced care planning, pain management, getting a better quality of life and examining their goals.
“The health care system is very fragmented” and confusing, she said. Doctors don’t always communicate with each other or know people’s living situations. By going to patients’ homes, nurse practitioners can learn more about their needs, such as what is causing them to fall and go to the emergency room frequently, which reduces their quality of life.
Unlike in hospice, these nurse practitioners are not available around the clock and there is not a team of people to address patients’ spiritual and social needs, Ms. Thibeault said.
Some palliative care patients get better and graduate out of the program, she said, and others transfer to hospice when ready.