Discussing end-of-life care is painful, difficult and unavoidable. Hospice care can be an option as patients and families decide the next steps.
In her role as Community Education Program Manager for the Mount Prospect-based nonprofit Rainbow Hospice and Palliative Care, Nancy Flowers dispels the fear and anxiety that surrounds hospice.
Hospice care, Flowers says, is “a specialized area of medical and psychosocial care for people who have a life expectancy of six months or less.”
“The focus of hospice care is not to speed up the dying process; it really is to support patients and their families through the dying process to focus on making them comfortable and as pain-free as possible,” Flowers explains. “Also, we want to give them the emotional and physical support needed to prepare for their dying and to be able to die well.”
Before entering hospice, patients, their families and physicians need to agree that this is an option, Flowers says. A physician’s referral order is then made. Private insurance companies, Medicare and Medicaid cover hospice.
This type of care is very personalized and heavily involves patients’ circles of support and professionals. Rainbow, for example, forms an interdisciplinary team, which includes physicians, nurses, home health aides, music and massage therapists, spiritual care providers, social workers, and trained volunteers to consult with patients, their doctors, families, caregivers and friends.
Hospice may take place at a home, a hospital or a nursing home. Within the first five days, Flowers says, team members visit the patient to set up the care plan and schedule visits.
To address emotional and spiritual needs, there is bereavement counseling and consideration of specific religious customs regarding death.
Finding answers
Families raise many questions, such as “How long is the length of stay?” Depending on the person’s condition, death may not occur automatically and some may leave hospice. Others may remain until they die.
“With the right kind of support, pain medication and support for respiratory issues, the dying slows down a bit,” Flowers says. “People can start to do better.”
Also on families’ minds is when is the right time to enter hospice. There is hesitation, Flowers says, since death is the “big unknown” and people have a will to live.
“There is a perception that people die quickly once they go in hospice or that hospice is something that you do at the very, very end of life,” Flowers says. “What we see nationwide is that people wait. Health care providers wait to refer and people wait to come on sometimes until the last days and hours of their lives.”
Another question is how much care does hospice provide.
“We support and supplement the family or the nursing home care staff but we don’t move in and provide 24-hour care,” she says. “Our role is to provide a great deal of education, a lot of emotional support and assistance with pain and symptom management. So we do active teaching and active intervention around medications that may help and other interventions.”
The other side
Chicago resident Bob Shea, 63, is a six-year Rainbow Hospice volunteer. Shea’s roles include visiting dying hospice patients, training new volunteers and being the volunteer representative in interdisciplinary team meetings.
Shea finds connections with the patients since he was on the other side of the bed. Though not in hospice, in 2002, Shea was gravely ill with Guillain-Barré Syndrome, a disorder where one’s immune system attacks the peripheral nervous system. Slowly, his condition improved and had a period of physical and occupational therapy.
In 2005, he recovered though his mobility in his hands and legs are still impaired.
“I understand what it means to be the person in the bed dying,” he says.
Shea also has a personal connection with Rainbow since his mother, who was diagnosed with vascular dementia, went into its hospice program last year.
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“The big mistake when considering hospice is people choose this just when they are ready to die,” he says. “My mother was on for a year and we just had a patient passed who was almost four years on service. Some patients get discharged thanks to this elevated medical care. They get better.”
As a volunteer, Shea is a calm and reassuring presence. Becoming a volunteer doesn’t require a specific trait but some understanding.
“Anybody is capable of doing hospice,” he says. “There is nothing unique or special about me at all. The only thing that is different about me is that I took the journey and therefore life is experiential. I’m not afraid of (dying). The easiest thing to do in your life is to pass away. Once they understand that, they’re ready.”