Sound Health: There’s A Lot That You Don’t Know About Hospice
What hospice is, Jackson said, is simply when you've decided not to seek further treatment for a terminal illness.
“Usually the doctor thinks you have 6 months or less to live, but we do have some patients who live longer. With the support of us going into the home frequently, we can help them live a good, quality life. We’re not about having things go quicker than intended. We just are there to support and provide comfort during the last days,” said Jackson, who is also a nurse.
"This work is very difficult, but it’s the most rewarding thing you’ve ever done."Michelle Jackson, OSF HealthCare Hospice
That last part is really important, Baker said.
“People equate hospice with euthanasia. And so we do a lot of educating with patients and family members in the home saying, ‘No, we don’t do that.’ We’re here to provide support, maintain and manage symptoms, keep people comfortable, and give them as many good days as we can,” Baker said.
There are other misconceptions, like that hospice is just for patients with cancer. It's not. It's for anyone with a chronic, end-stage illness.
And you don't need to be imminently dying. Actually, it's better to get connected with hospice sooner, so you can build a relationship with the team.
And Baker says there's another one: “People think hospice is a place, rather than a service that comes to you, whether that’s your home in the community, or an assisted-living or nursing home level of care. There is a Hospice Home within OSF in Peoria, so there is a place so to speak. But hospice overall is a service, it’s not a place where people go,” Baker said.
Your vision of hospice may be someone on their deathbed, unable to get up.
That's part of it but not all of it. Some in hospice care like getting out into the world. Some set a goal for an out-of-state trip. Hospice is a Medicare-reimbursed program, so OSF can set up a travel contract with a hospice agency in, say, Florida.
“It’s helping people to accomplish a goal they want to accomplish. They want to take that last trip they haven’t been able to do. Sometimes it’s celebrating a birthday, or they want to go see a wedding, or, ‘Oh golly, I just want to see the baby born.’ We had a patient who still wanted to get out and about and ride on a motorcycle. We like celebrating with them when they’re able to meet those goals, those milestones,” Baker said.
As a social worker, Baker works closely with the caregivers of those who are dying. Yes, it's a lot of adult sons and daughters caring for mom or dad, but they run the gamut more than you'd expect.
“We have folks that have their own young children and they’re trying to raise their family, and work, and care for mom or dad. We are encountering grandchildren caring for grandparents,” Baker said. “Unfortunately, we do encounter parents caring for children. Those may be infants, toddlers, grade schoolers, high schoolers. Sometimes it’s adult children. We do get folks that have some developmental disabilities, in addition to whatever their diagnosis that brought them to hospice.”
Hospice staff are interacting with those caregivers at one of the hardest points in their life.
“Oftentimes our caregivers are quite frankly very stressed. They’re overwhelmed. Because they have so many of their own responsibilities, and then they have the care and the concerns for their loved one,” Baker said. “Many of them are trying to care for their loved one in their loved one’s home, or they’ve brought them into their own home. There are multiple challenges that come along with that.”
Hospice manager Michelle Jackson said her team is there as much for the family as they are the patient.
“We teach them how to take care of their loved one, because we’re not there 24/7. So we come in, we educate, and try to get them the support they need. If they need paid caregivers to come into the home, if there are physical limitations, we try to arrange that. Or try to use community resources that are available, or VA resources if they’re a veteran,” Jackson said.
Jackson and Baker and a few dozen other colleagues care for between 70 and 100 people who are in hospice in OSF's Eastern region at any given time, including in Bloomington-Normal.
“This work is very difficult, but it’s the most rewarding thing you’ve ever done,” Jackson said. “You just get that sense when you see patients, and you know they have a good quality of life, a good passing, and the family feels supported—that recognition is what keeps you going to the next patient.”
You can learn more about hospice on OSF's website is by calling (309) 451-5925. Hospice would set up an assessment visit to see if you or your family member are hospice-appropriate.