Eli's Hospice Insider

Tap this list as a roadmap to community education.

The good news about even persistent myths is that information delivered in the right way can prove to be a powerful antidote. Check out what hospice experts below identify as some of the top misconceptions about hospice and how they have learned to counter them.

"Some people have the idea that people are doing fine until hospice comes in and then they die shortly thereafter," says Rachel Schmidt, with Healthcare Marketing & Strategies in Richmond, Va. "The reason for that is the high percentage of late referrals," she says.

Hospice nurse Noelle Berardi, RN, points out that some patients get better on hospice and, in some cases, even end up coming off the benefit. "That can happen when, for example, someone with chronic obstructive pulmonary disease as the terminal diagnosis] hasn't been able to pay for all her medications," says Berardi, with Samaritan Hospice in Brockton, Mass. Hospice comes in and provides the person's COPD medications and educates the person on how to use them." As a result, the patient ends up living longer or may even become ineligible for staying on the hospice benefit at that time.

The truth is, a lot of people on hospice are full code, says Berardi. "You'd be surprised by the number of people who pass away without ever coding - for example, patients who die peacefully in their sleep."

Berardi lets people know that hospice does sometimes stop unnecessary meds or invasive procedures that aren't helping. "But hospice provides intensive pain management and symptom management."

People are surprised, especially in the community, to learn that people with Alzheimer's and dementia are eligible for hospice, says Carol Paprocki, public relations manager for Samaritan. "People also ... don't realize hospice is a covered service under Medicare, VA benefits, and most private insurance plans." Samaritan, which has a pediatric palliative program, also finds that some people didn't realize that hospice care includes children. "We let people know that hospice is for anyone of any age who has been diagnosed with a terminal illness," emphasizes Berardi.

"The reality," says Berardi, "is that we strive to keep the person as able to participate in life as possible. Hospice providers are specialists in combining medications to achieve optimal pain management without over-sedation. For example, Neurontin can be used to control neuropathic pain -- such as the burning and tingling of peripheral vascular disease -- in conjunction with an opioid to control non-neuropathic pain."

Berardi lets people in the community know that they can change their mind at any time if they decide hospice isn't for them -- or if, for example, a new drug comes out and they want to try a curative approach.

Then they can go back on the benefit if needed later. "We also make sure people know that the focus of hospice isn't on death but living life as fully as possible."

That's a myth that Judi Lund Person, MPH, vice president of regulatory and state leadership with the National Hospice & Palliative Care Organization, encounters even when attending meetings in Washington.

People say to Person: "When you go to hospice," to which she replies that one doesn't necessarily go to a hospice -- "you can get hospice services wherever you are. Then the question is -- 'well if it isn't a place, what do you do?'"

Bottom line: "We find that having constant conversations with people in the community about hospice and talking about it in a variety of ways is very successful [in combating myths]," says Person. "We use an 'each one, teach one' approach in making sure that families understand exactly" what services hospices provide.