For patients and their families, hospice and palliative care offer support and relief. Yet, many people don’t know what they entail or where to find them.
“Now that I have a family member living with Alzheimer’s that is going into an advanced stage, I’m learning about options with the hope that I’ll better understand options before I need to access them,” said Wendy Nissen, who participated in the recent Levy Senior Center seminar, “Hospice and Palliative Care 101.” Nissen said that while she’d always known about hospice, she didn’t know the specifics.
The seminar, presented by Maureen Burns of the nonprofit organization JourneyCare, provided an overview of two types of health care available to people living with intense pain: hospice care and palliative care, both of which the organization provides. Burns, a community health worker with a focus on Rogers Park and surrounding areas, including Evanston, described the differences between the two types of care as a continuum. She said that while both target increasing quality of life, palliative care can be administered at any point in an illness and at any point in life, but hospice comes in towards the end of life, when a patient’s prognosis is death.
“Talking about this can be tough because it’s hard and scary and there’s a stigma attached to hospice and death, and people don’t want to talk about it,” said Burns. “But it’s better considered prior to a crisis moment.”
Palliative care is a relatively new medical specialty that was introduced to support those living with a serious illness who are seeking relief from pain and other symptoms, regardless of their life expectancy. Unlike hospice, palliative care can be accessed by anyone receiving curative treatment or home health services. Burns said that it can minimize return visits to the hospital – and associated costs – and its goal is to improve all-around quality of life.
Typical reasons for seeking palliative care include inability to manage pain and symptoms, weight loss, memory loss, increased falls or more frequent visits to the doctor or emergency room. Patients may need palliative care for a short or extended period of time, depending on their pain and symptoms. Their primary health care provider can help them assess their needs and access care.
If a cure is no longer believed to be possible, or when a patient’s prognosis is defined in months, they may choose hospice. Burns said that hospice care supports patients during the final phases of their terminal illness, so that they can make the most of their remaining time. She said that they may even live longer because of the care they receive in hospice, and that contrary to what many believe, hospice care can be administered over extended periods of time.
Hospice, which is covered almost entirely by Medicare, provides a tailored approach to match a patient’s needs. Among other components, it can include physician or nurse practitioner services, nursing care, medical equipment, medical supplies, drugs to manage pain and symptoms, hospice aide and homemaker services, physical therapy, occupational therapy, spiritual counseling and short-term inpatient pain control. Hospice also provides bereavement support to surviving family members.
Tim Carter, program coordinator at the Levy Center, said he was surprised by the number of questions and comments entered into the chat during the virtual presentation and later posed during the questions-and-answer session afterwards. Even though the seminar focused on both palliative and hospice care, the majority of questions and comments were about hospice.
During part of her presentation, Burns focused on the myths associated with hospice, among them the ideas that once a patient enters hospice care all medical care is ended, that hospice is only for the wealthy or that hospice patients have to be admitted to a hospice facility. She said none of these is true. Medical care continues through hospice, hospice is almost fully covered under Medicare, and one of the goals of hospice care is to keep patients at home.
Murli Reddy said he attended the seminar to get more information and reassurance that his family did the right thing by getting hospice care for his wife.
“My wife had lymphoma, was treated and recovered, but she developed another malignancy and the treatment was not effective. She was having lots of side effects, so went into hospice. It was quite a blessing,” said Reddy. “She was at home and I was with her all the time and my daughter and relatives got to spend time with her. She was suffering a lot. Hospice helped the whole family.”
Nissen said she was surprised when Burns explained that hospice isn’t just for a month or three months, but that it could go on for years.
“I always thought that hospice could only be engaged when a patient is very close to death and I didn’t know it can be provided by a nonprofit hospice organization.”
Burns indicated that much of her work is about helping people understand services that they haven’t had to use and that have never been explained to them.
“It widened my eyes to what it is and how you can get it,” Nissen said. “Through the Alzheimer’s experience, I’ve found out about all these services that are out there, but no one gives you these tools – you kind of get lost in it. Sometimes you mention a service you’ve found to the doctor, that they hadn’t mentioned, and they tell you how fabulous it is.”
“Hospice is good for patients who have come to an end and are severely sick, when there is no curative treatment and no point in the hospital,” said Reddy. “Their relatives may be stuck on what to do. It’s a strain for relatives going to the hospital. Instead their loved one will be at home. Hospice care is very good for patients when there is no cure – and for family, too.”
Contact Maureen Burns, 773-759-4248, with questions or help making connections with services.
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