Misconceptions about hospice care: It’s about quality of life, not imminent death

Between 1.3 million and 1.7 million patients in the U.S. were cared for annually through hospice services from 2009-2020. But many people continue to have misperceptions of hospice care; 40 percent in one survey believed its sole purpose is sedating patients nearing death.

As fallacies and fear remain, some families avoid hospice as an option for their terminally ill loved ones, who miss out on care and support that can make their final months more enjoyable, saidDebbie Johnston, author of “The Hospice Handbook: Nurse Debbie’s Compassionate Guide To Navigating End-Of-Life Care.”

“Plenty of people have no idea what hospice really is,” said Johnston, a long-time health care entrepreneur and founder of hospice care companies. “Our passing is a daunting prospect, the greatest mystery each of us will ever face. So who wouldn’t want support as we approach death, either our own or our loved ones?

“It’s a good idea to know in advance what hospice is and the many benefits it can provide. And the first thing to know is that bringing in hospice isn’t the same as throwing in the towel.”

Johnston’s mission to create more awareness about this healthcare option is driven in part by the COVID-19 patients who did not receive hospice care and died alone in hospital rooms.

“This appalling situation simply can’t happen anymore,” she said. “Those suffering patients needed hospice care during the pandemic, and so, so many of them didn’t receive it. This is unacceptable.”

The Hospice Foundation of America defines hospice as medical care designed to help someone with a terminal illness live as well as possible for as long as possible. To clear up misconceptions some people have about hospice care, Johnston makes the following points about what it is and what it is not:

It’s a service, not a place. Some families think hospice care involves putting the ill family member in a lonely facility, but that’s not true. Hospice treats patients where they live.

“Hospice is a philosophy of care, bringing physical, emotional and spiritual care and support to patients wherever it is they call home,” Johnston said. “An interdisciplinary team of professionals maps out a plan, based on that person’s unique diagnosis. The team also addresses the family’s needs.”

It’s not about giving up. There are eligibility requirements for hospice care, one of which is your regular doctor and hospice doctor certifying that you’re terminally ill (with a life expectancy of six months or less). Johnston says hospice care is meant to increase both the quantity and quality of life for the patient, providing all medications, services and equipment the patient needs. Studies have shown that people on hospice live an average of 29 to 44 days longer than those not on hospice.

“We have to stop thinking of hospice as a death sentence and a sign of surrender,” Johnston said. “We need to see it as an amazing opportunity to live until the end, without stress and with a sense of peace. But some people are referred for care much too late.”

It’s not expensive. Hospice is covered by Medicare, Medicaid and most private insurance.

“You don’t need to be rich to get access to it,” Johnston said. “So many people don’t realize that hospice is obtainable for all members of our society.”

It’s an important acknowledgement. “Hospice is really a celebration of a patient as they near their final days,” Johnston said. “It’s an acknowledgement that they matter. The team’s attention gives them dignity and appreciation when they need it the most. It’s possible to find happiness, love, and a sense of community to your very last days through hospice.”

“Let’s share the good news with our communities that providing readily available hospice care is one of the most effective ways to care for its citizens,” Johnston said.

About Debbie Johnston
Debbie Johnston (www.debbiejohnston.com) is the author of “The Hospice Handbook: Nurse Debbie’s Compassionate Guide To Navigating End-Of-Life Care.” A successful entrepreneur and health-care expert, Johnston founded Care Advantage Inc., which became a leading company for personal and companion home health care and was sold to Bell Health in 2017. With the foundation of her nonprofit organization, Connecting Hearts, Johnston was appointed Virginia’s Adoption Champion by then-Governor Terry McAuliffe. Her newest business, Serenity First Hospice, is inspired by her personal journey with her father, Pappy. She was featured on ABC television’s Secret Millionaire and has received numerous local, state and regional awards for her efforts as a humanitarian, philanthropist, entrepreneur and business leader.