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Ten Hospice Care Myths to Know for Terminally Ill Patients and their Families

O’FALLON— Hospital Sisters Health System (HSHS) marks the recent 10th anniversary of its hospice program in Illinois and National Hospice Week Nov. 11-15 by highlighting 10 myths about hospice.

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“HSHS Home Care began offering hospice services in Illinois in October 2014 in recognition of the growing need for this specialized care,” said Shawna O’Dell, RN, MSN, FACHE, who serves as Vice President of Care Management and Post Acute Care. “The benefits of hospice are too important to get sidelined by misinformation. I asked our experienced, trained caregivers to debunk the untruths they often hear from patients and their families.”

Myth #1: Hospice care means giving up.

Hospice offers comprehensive, caring support to patients with a life expectancy of six months or less. It gives patients emotional support and relief from symptoms they have as they approach the end of life, such as pain, anxiety or breathlessness.

Myth #2: Hospice is only for people who will die within a few hours or days.

Hospice care focuses on quality – not quantity – of life. Data shows the average length of stay in hospice for Medicare patients is 95 days – 3 months – and the median stay is 18 days. Yet outliers exist – former President Jimmy Carter began hospice care in February 2023.

Myth #3: Only doctors can recommend hospice.

Anyone can refer a patient to hospice, including the patient, a caregiver or loved one. The hospice agency then contacts the patient’s doctor for an order for care. Patients and their families can also contact a hospice agency on their own to simply learn about hospice.

Myth #4: Hospice does not allow patients control over their care.

The hospice team develops a care plan in collaboration with the patient and their family. The patient always has the right to refuse or request specific care, and even leave hospice to get healing treatment, with the option to return later.

Myth #5: Hospice requires a Do Not Resuscitate order.

Hospice patients do not need a DNR, but hospice staff can review other end-of-life directives, such as POLST (Physician Orders for Life-Sustaining Treatment) or a power of attorney for health care. Medicare covers discussions with a doctor or other health care provider about such advance directives.

Myth #6: Other medical care is not available to hospice patients.

Hospice patients can get treatment for illnesses or conditions unrelated to their terminal diagnosis, like a fractured wrist. Patients may also continue taking medications or vitamins for other health issues, which hospice staff will regularly review.

Myth #7: Hospice is only for cancer patients or the elderly.

Hospice care is available to anyone, of any age. Cancer accounts for only four of the top 20 diagnoses of hospice patients, with conditions such as Alzheimer’s disease, heart failure and chronic obstructive pulmonary disease landing near the top.

Myth #8: Hospice care and palliative care are the same.

Palliative and hospice care both ease suffering and enhance quality of life for patients. Hospice is for individuals with a life expectancy of six months or less who are no longer seeking treatment. Palliative care can begin as soon as the patient receives a diagnosis and can occur at the same time as treatment.

Myth #9: Hospice care is expensive.

Medicare, the Illinois Medicaid program and the federal Department of Veterans Affairs pay for hospice care, and many private insurance plans also cover these services. Hospice staff can review coverage options. No terminally ill individual should go without hospice care because they think it is unaffordable.

Myth #10: Hospice care does not make a difference.

Patients in hospice live a bit longer – about two months longer, according to a New England Journal of Medicine study focusing on lung cancer patients – than patients who do not choose hospice. That extra time with family and loved ones can be valuable to all.

HSHS Home Care’s hospice service area encompasses the communities of 37 counties in the central and southern Illinois regions and are in collaboration with the nine HSHS hospitals in Illinois. Patients receiving hospice care have access to a nurse 24 hours a day, 7 days a week. To learn more, visit www.hshshomecare.org or call 800-551-6566.

 

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