Myths About Hospice Care

Caregiver holding hands of Asian elderly woman patient

Recent revelations of President and Mrs. Jimmy Carter choosing hospice care have spotlighted the crucial role hospice can play in providing support for individuals facing terminal illness. Still, there remain many misconceptions about hospice and what it can and cannot do.

Simply defined, hospice care is medical care for those with six months or less to live and for whom a cure isn’t an option; the care focuses on symptom management and quality of life. Here are five common myths that most people have about hospice – and the truth you should know.

Myth 1: Hospice care is only for the very last days of life.

Truth: Hospice care is not just about end-of-life care. Dame Cicely Saunders, nurse, physician, and founder of the modern-day hospice movement said “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” Research has shown that hospice not only relieves pain but improves quality of life before death as well as negative emotions such as anxiety and depression. Patients can receive hospice care for six months or more, depending on their condition and prognosis; in February, 2024, President Carter had been on hospice care for a year.

Myth 2: Hospice care means giving up hope.

Truth: Hospice allows patients and their families to redefine hope in the context of their situation. Interviews with patients and families have revealed that hope can be essential in coping with difficult situations and activating inner resources to navigate challenges. Hospice care is about shifting the focus from curing the illness to providing comfort, dignity, and support. In fact, aspects of hospice, like the support of others, connection with personal faith and beliefs, and shared compassion, have been proven to strengthen hopeful feelings. In hospice, hope becomes about making the most of each day, cherishing moments with loved ones, and finding peace.

Myth 3: Hospice care is only provided in a facility.

Truth: Most hospice care takes place wherever the individual calls home. It can be in a private residence, assisted living community, or long-term care facility. Hospice is an approach to care and isn’t tied to a specific place. Individuals can remain in familiar surroundings surrounded by loved ones. Hospice team members visit regularly with phone support 24 hours a day, seven days a week. Sometimes hospice needs to be in an inpatient setting if pain and other symptoms cannot be adequately managed otherwise.

Myth 4: Hospice care is expensive and not covered by insurance.

Truth: Hospice care is a benefit covered by Medicare, Medicaid, and most private insurance plans. Coverage typically coverage includes medications, medical equipment, and related services. On Medicare, there is no deductible, but small co-payments for prescriptions and respite care might be required. Many hospice programs offer financial help for those who are uninsured or underinsured and most have staff who can explain your coverage based on insurance type.

Myth 5: Hospice care hastens death.

Truth: Hospice care neither prolongs nor hastens death. Of course, people die while in hospice. But its primary goal is to provide comfort; medications are used to relieve symptoms like pain, anxiety, and breathlessness. Numerous studies have actually shown that those receiving hospice care may live longer than those who do not. One example found that patients with advanced heart failure on hospice survived longer than those without (80 vs. 71 days). Expert pain management, symptom control, and emotional support can support longevity.

Hospice care offers compassionate support, comfort, and dignity to individuals and their families during one of life’s most challenging journeys. By understanding the truth behind these misconceptions, we can ensure that everyone receives the care and support they deserve when facing the end of life.

If you or a loved one are considering hospice care, it’s essential to have open and honest conversations with healthcare providers and hospice professionals to address any concerns and make informed decisions.

Sources:  The Washington Post; Hospice Foundation of America; King College London; American Journal of Translational Research; International Journal of Environmental Research & Public Health; JACC: Heart Failure

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