Working for Illinois Caucus

By Marney Simon | Enterprise Staff

Patients in need of in-patient hospice care now have more options in Illinois, following a change in state law that notably will add services to the Joliet Area Community Hospice (JACH).

Last month, Gov. Bruce Rauner signed legislation introduced in the House by State Representative Natalie Manley (D-Joliet) and the Senate by State Senator Jennifer Bertino-Tarrant (D-Shorewood), increasing the capacity of hospice inpatient units from 16 to 20.

The change was at the request of Mary Sheehan, CEO of JACH, and was supported by the Illinois Hospice and Palliative Care Organization. Both the hospice and the state’s professional organization are committed to promoting palliative and enhancing end-of-life care through education, advocacy, technical and supportive services.

Manley and Sheehan announced the change at the hospice in late August.

JACH cares for a total of 320 patients in eight counties, including those inside the 16-unit inpatient hospice in Joliet. Prior to the new legislation, the limitation meant only 240 beds were available statewide for in-patient care, a number that wasn’t reaching the need. While JACH is staffed around the clock, there have at times been a waiting list.

“We have had a lot of growth, and with that growth comes the need for more inpatient care,” Sheehan said. “The inpatient level of care is for patients who are too sick to be at home, they don’t want to be in a hospital most of the time, and they need their pain and symptoms managed. They don’t want to die at home, sometimes there are children in the home and they don’t want to be there for that.”

Sheehan and Manley said they couldn’t account for why there are bed limits in the state, but hope this is the first step to adding even more beds for inpatient care in the future.

The change is especially close to Manley, whose mother passed away at JACH in July of last year.

“It is the one thing that we all have in common, is that we will eventually at some point lose somebody who is very dear to us,” Manley said. “My mother spent the last few days of her life here, being cared for in a way that I want every person to have the opportunity to have their mother cared for in that way. Staff is amazing, they not only cared for my mother, they cared for my brother and sister and I, my mother’s sister… The professional staff, the administration, they could not have been more supportive.”

The increase statewide from 16 to 20 beds per facility means the total capacity for hospice beds will rise from 240 to 300 beds.

The number of patients in hospice care is growing. At JACH alone, the average number of patients cared for each day has increased more than 63 percent since 2016.

Sheehan noted that hospice is not a place where people give up on life, but rather, is an option for those who are prepared to die on their own terms, and to educate families on how to care for their terminally ill loved one.

“People think hospice is giving up. It’s not, at all. People think there’s no hope, and that’s not true, it’s the opposite, we just hope for different things,” Sheehan said. “We want people to be in charge of their life and their death. Our perception is, we’re living every day, we’re not dying every day. We’re living every day until we die, and we want that to be comfortable.”

JACH also provides a pediatric hospice program.

Hospice treats the physical, emotional and spiritual needs of a patient and their family, including a bereavement program which follows family members for 13 months after a patient passes away.

“We’re all going to leave this earth at some time, and we want to make it as pain free and as dignified as possible,” Manley said. “The Joliet Area Community Hospice team made that possible for my mother, and I’m sure the other hospice homes in the state do the same. It’s a great day and I thank the governor for signing the bill and letting us expand our capacity to help people.”

JACH, a not-for-profit United Way agency, opened the first free standing hospice home in the state of Illinois in 2004. The organization has provided compassionate, professional hospice and palliative care to over 30,000 terminally ill patients and their families since 1982. In just the past two years, JACH provided more than $1.3 million in charity care, community bereavement programs, unreimbursed pediatric hospice and palliative care, and community outreach.

The hospice is funded via Medicare, Medicaid and insurance payments, as well as through private donations.

The hospice will add on to their current building to support the new beds. The plan includes building space large enough to accommodate eight additional beds, for potential future changes in the law. The renovation plans will also include adding a new chapel and overall upgrades to the existing facility. Sheehan said the constriction is expected to cost roughly $3.5 million, with anticipated ground breaking next spring and completion in late 2019 or early 2020.

JACH serves patients in greater Will, Grundy, LaSalle, Livingston, and Kendall counties along with portions of Cook, DuPage and Kankakee counties.