Hospice brings hope
Helping mom live out her days with care and comfort
By Les O’Dell
About a year ago, my brother and I were facing a difficult decision. Our father had passed away just a few months prior, and following an apparent stroke, a broken hip and the return of an aggressive brain tumor, our mother lay semi-conscious in a south central Illinois hospital. Her trusted family physician, usually upbeat and optimistic, could not offer us much hope. He recommended to us that mom be placed in hospice care.
Like many people, we had heard of hospice, but really knew little about the programs, scope and methods of hospice. We quickly learned, however, that hospice offers care and support far exceeding what we imagined.
The comfort and needs of the patient are at the core of treatment.
“Hospice is not about death and dying,” Spencer Levine, Vice President of Programs for the Hospice Foundation of America, explains. “Hospice is about living as well and as fully and as comfortably with the best quality of life in the time a patient has remaining. It is a philosophy of care that encompasses an interdisciplinary approach.”
Levine says that hospice care is designed to provide care to a terminally ill patient at a location which is best for the patient and his or her caregivers. In many cases that means the individual’s home, but hospice organizations also are able to provide care in specialized hospice facilities, hospitals or long-term care centers.
“The hallmark of the care is the exceptional attention to pain and symptom management, which is called palliative care,” he says. “The point and goal of palliative care is to help the patient achieve and maintain the highest level of comfort and quality of life that they are able.”
Hospice programs in the United States started in the mid-to-late 1970s after many years of success in Great Britain. Today, there are thousands of hospice programs nationwide and more than 100 all across Illinois. In 2009 more than 1.5 million patients received comfort and support from a hospice program – nearly 4 of every 10 deaths were under hospice care.
In most cases, the costs associated with hospice care are covered by insurance programs. Medicare Part A provides for up to six months of hospice care and many private insurance plans also include coverage for hospice. Many hospice organizations even provide services not covered by insurance at no cost to patients or their families, relying on donations and fundraisers to fund these activities.
“Many, many hospices are non-profits and as such, they don’t turn people away,” Levine adds. “Generally speaking, if you are medically eligible, there is some way or some organization that will provide the care you need.”
The comfort and needs of the patient are at the core of treatment, hospice leaders in Illinois say.
“Hospice is a choice of treatment for end of life care,” Chris Linn, Director of Lincolnland Hospice based in Mattoon, says. “It’s about living and making every day the best. It’s about the quality and not quantity. We look at the physical, psychological, social and spiritual needs of the patient.”
Lincolnland Hospice’s primary service region is 15 counties in eastern and south central Illinois. Linn adds that each hospice patient is served by a team including nurses, counselors, social workers, doctors, volunteers and chaplains. Regardless of their roles or the hospice organization, the purpose and approach of hospice remains the same.
“We look at dying as part of living, it’s just another stage,” explains Sue Ellen Billington, a member of the Board of Directors of the Illinois Hospice Organization. “We’re not the doom and gloom team. We’re here to make this as good of time as possible in the time that remains.”
Billington, who lives in Springfield, is the retired director of Memorial Home Services Hospice which serves 14 counties in western and central Illinois.
“Hospice brings to light the reality of the situation. This gives people the opportunity to prepare for the end, and that is something I think we should all be entitled to. It helps us and our families.”
Patients and families say the care hospice team members provide is outstanding.
“I didn’t know anything about hospice,” Eddie Mae Barker of Marion said in a videotaped interview with Hospice of Southern Illinois just weeks before her passing in 2010. “I didn’t know there was any such organization that took care of people the way that I have been taken care of. I can’t say that I’ve been taken care of 100 percent; I’d like to say 200. I don’t know any other place other than Heaven that I could be in and have this type of treatment,” she added as tears rolled down her cheeks.
That care, which ranged from pain management to spiritual support, allowed Barker to complete her life at home, giving her final days more meaning. That is one of the goals of hospice care says Dr. Andy Riffey, a family physician in Johnson County who we first introduced to Illinois Country Living readers in 2009.
“It’s good to have a situation where people dealing with end of life issues can get the care they need without the pressures of having to go to the doctor or the hospital all of the time and instead be comfortable most of the time in their own home. It allows people to finish their life in the way that they want to.”
For Marion’s Margaret James who was suffering from abdominal cancer, finishing life on her terms meant spending time with family and friends, free from pain.
“Two weeks ago, I couldn’t even lift my head off of my pillow,” she said in an interview recorded on Dec. 23, 2010. “We called Hospice of Southern Illinois on a Friday, and they were here on Monday. Now I’m able to function to the best of my ability with their help. I couldn’t have had this last week if not for them. I feel like I’m still able to beat up the world because of this care.”
James, who passed away just two days after her interview, said she was so glad that her children convinced her to enter hospice care.
“Most people wait so long. I want people to call hospice early,” she urged. “We don’t have to suffer. We have things to do.”
The decision to bring in hospice care can be a difficult one, Riffey says.
“The best way for the decision to be made is as a group decision among the patient, if possible, the family and the physicians because it is not right for one person to make this decision by themselves,” he says. “A majority of the time, depending on the situation, the doctor will bring up hospice as an option. Most people are really scared of it because they don’t know what it means, but once it’s brought up and discussed – often with a hospice worker explaining what hospice means – then it’s a huge support for the family members too because it takes a big load off them.”
While the patient is the main focus of hospice care, his or her family is not ignored, even at the end of life.
“A childhood friend lost a battle a few years ago to cancer and I was dramatically affected by the support that hospice provided the family during their time of need,” says Tammy Kaye Hearn of Springfield. Hearn is a former compliance officer for a long-term care company. While she was familiar with hospice professionally, she says this instance was her first experience with hospice on a personal level. “They created a supportive environment and guided the family into a positive place, allowing our loved one to die with such dignity. Everything was done right.”
“Because of hospice and also because of some of the wonderful caregivers that I had hired, mom was allowed to die with dignity and grace in her own apartment,” Diane Huges of Marion says of her mother Hilda Cronin’s passing.
“Families are always talking about how important hospice care was in the way which their loved-one was treated and in the comfort in which they were able to pass,” explains Larry Rogers, owner of Roger-Adkins Funeral Home in Salem. “I never hear anything negative when it comes to hospice; they really make a difference when it comes to quality of life at the end of life.”
Beyond the passing of family and friends, hospice organizations routinely offer extended assistance for grieving family members. In fact, representatives of hospice called both me and my brother several times after mom’s passing, just to see how we were doing.
“One of the things that hospice does is that we continue to assist the family through grief and bereavement,” says Lincolnland’s Linn. “In most cases, we’ll offer services for up to 13 months. I know how important it is to have counseling and support groups.”
She adds that assisting people in the final days of their lives is very rewarding for the professionals and volunteers who serve in hospice.
“When a person leaves this world surrounded by the people they love, you see so much love and power. We see it as a journey home and we’re there to help.”
We Listen, We Care.
Staying at home, surrounded by family and friends, free of pain with your symptoms under control,
support for your family caregivers … that’s what most Americans want at life’s end. Hospice professionals and volunteers understand this. They ask what’s important to you and work to honor your wishes.
Helping put the pieces into place to ensure that you and your loved ones find comfort, dignity and respect.
Learn more at caringinfo.org, call the HelpLine at 800-658-8898, or contact your local hospice.