When illness cannot be cured, hospice is a life-affirming approach to meeting the needs of the patient, their family members, and caregivers. But there is a lot of confusion about what hospice is and what it provides.
“Simply put, hospice is appropriate whenever a patient has been diagnosed with a terminal illness, that if it runs its usual course, the patient has six months or less to live,” says Krista Steiner, RN, Hospice Coordinator with CHP.
“It’s a two-fold philosophy of care,” she explains. “First, a patient qualifies by having a terminal illness, and second, they choose to receive comfort care and no longer seek aggressive, curative treatments, hospitalizations, or ER visits.”
Instead, care is focused on quality of life in the time remaining. “Quality of life includes the patient’s perception of their physical and mental health (e.g., amount of pain, energy level, and mood),” Steiner says.
Hospice is most effective at improving quality of life when a patient is admitted as soon as possible. Unfortunately, about one-third of hospice patients are enrolled for less than a week. Steiner says this is often due to the misconception that hospice is only for the final days, hours, and minutes of life.
“We want people to understand that hospice is available months, even years in advance and it doesn’t mean they’re ‘giving up,’” Steiner says. “We want them to live their best life in the time they have left and the more time we have to work with them, the more both patient and family can benefit.”
“It’s frustrating,” she continues, “when a patient finally signs up for hospice and I learn that they’ve been suffering in pain or with nausea for weeks or months and we could have controlled those symptoms and made life so much better for them earlier.”
Research shows that hospice recipients live longer, on average than those with a terminal diagnosis receiving standard medical care. So the question is, how can you live well at the end of life?
“When asked, ‘What do you fear?’ our patients frequently say that they aren’t afraid to die as much as fearing how they will die,” Steiner says. “Will I be in pain, nauseated, short of breath or alone?”
Patients also feel like they have lost control, so hospice tries to restore a sense of empowerment. “We tell them, ‘This is your show,’ and ask, ‘How do you want to spend the time you have left?’” Steiner said. Sometimes, it’s as simple as controlling their nausea so they can attend a child’s ballgame, or manage pain to spend time with family.
“The goal of pain management is to enable hospice patients to live well,” said Steiner, “it’s not to sedate them. Living with pain makes you more tired and irritable and robs you of quality of life.”
Drugs like morphine, when used correctly, do not hasten death as many people mistakenly believe. Rather, Steiner contends, it controls pain which enables a patient to interact and be comfortable without sedation.
The hospice team of nurses, doctors, aides, social workers, chaplains, and volunteers are experts in managing symptoms and are equipped with specialized medications and equipment to enhance the patient’s well being.
“The staff at CHP is local, which means response time to patient calls are quick to ensure that pain and symptoms are controlled right away,” Steiner says. “Our nurses are on-call day or night, 24/7.”
To learn more about hospice services available locally, call or stop by your local CHP office.