Tompkins Weekly

County palliative care programs need education



When many people first hear about palliative care, they associate it with hospice – the end-of-life, interdisciplinary care program that has been around for decades. Those involved in palliative care, however, are working to change that misconception and help educate the people that need it about the care system for those diagnosed with a serious illness.

Anna Rosenblatt, coordinator for the Finger Lakes Geriatric Education Center, said palliative care and hospice are similar in their goal of improving a patient’s quality of life while suffering from a debilitating illness but differ in some important ways.

“Both hospice and palliative care are about quality of life at the end of the day,” Rosenblatt said. “The difference is truly that hospice is meant to address psychosocial and physical symptoms that are present at end of life.”

Palliative care involves an interdisciplinary team of service providers in the physical, social, emotional and spiritual health communities, similar to hospice. Hospice, though, is reserved specifically for patients with a medical prognosis of six months or less. Palliative care does not have such a requirement, as it can apply to people at any age and at any stage of an illness.

Palliative care is centered around care for those suffering from a severe illness, like Parkinson’s disease or multiple sclerosis, that may be causing the patient a lot of pain or mental distress on a daily basis, making it difficult to care for themselves.

“If they have a symptom burden, they feel like they’re going to many doctors, that no one’s really able to see the whole picture, that’s where a palliative care provider might be able to step in and really look more holistically at the care,” Rosenblatt said.

In addition, whereas hospice requires a patient to forgo curative treatments and largely involves in-home care, palliative care does allow patients to undergo curative and other treatments and can be provided both in and out of the home. Palliative care applies to hospitals, homes, nursing homes and other locations, said Kim De Rosa, executive director of Hospicare and Palliative Care Services.

“Palliative care can be provided anywhere as long as you have the program that can support that,” De Rosa said. “So, the more places you go, the more resources you need.”

One of the biggest reasons palliative care and hospice are so often confused is because palliative care only became a recognized medical specialty in 2006, said Elizabeth Bergman, associate professor and aging studies department chair at Ithaca College. De Rosa said this has led to a lack of understanding from both doctors and patients.

“Even in the medical community, there are a lot of medical providers that need that education because if they don’t understand, how are they educating their patients?” De Rosa said.

Rosenblatt said this has led to a patchwork of availability of palliative care services throughout the state and county depending on funding, which is generally lower than it needs to be. This can influence how familiar community members are with the program.

“That’s a different way of accessing it, and thus, you would have a different point of reference for what a palliative care program can look at depending on where you live,” Rosenblatt said.

Hospicare’s Palliative Approach to Health program (PATH) is in its infancy, De Rosa said, requiring more education and funding to move it to the next step and meet the untapped demand. Jennifer Gabriel, director of development and community relations at Hospicare, said it is a careful balancing act.

“Putting too much information out there right away is going to create a demand that we might not necessarily be able to sustain right now,” Gabriel said.

To both generate demand and be able to meet it, Gabriel said Hospicare is focusing on one step at a time.

“Educating the medical community is step one in helping the community understand that this is a program they could benefit from, and the second is community outreach and education,”

Gabriel said. “And we have big hopes and dreams on that end because I think there’s a lot that can be done within the community to promote both hospice and palliative care.”

Right now, Hospicare is focusing on community outreach programs, educating providers and increasing funding for palliative care services.

The Ithaca College Gerontology Institute Center for Palliative Care and the Tompkins County Palliative Care Collaborative recently created a brochure that outlines palliative care services in the county, and Bergman hopes to use it to spread the word around. Bergman said this and other education efforts are needed to help support the program.

“Part of the way that we build palliative care in this community is to spread knowledge and encourage people to ask their provider for it and generate the demand for it that actually exists,” Bergman said. “We just need to get people better educated about what it is.”

PATH, which is free to patients who use it, currently depends on donations and grants since its current lack of medical providers on staff prevents it from qualifying for insurance.

Hospice, on the other hand, is covered by most private insurers and Medicaid. De Rosa and Gabriel said they are working to educate possible funders so they see palliative care is also a worthy cause to support.

“My goal is that palliative care isn’t a luxury to people, that it’s a standard part of health care for those that are living with serious illness,” De Rosa said. “Everybody should have the option to have palliative care as part of their support network.”

Leave a Reply

Your email address will not be published. Required fields are marked *