Erin Negley | Staff Writer, Lancaster Newspapers
Apr 28, 2019

Last year, Nancy Werner died from pancreatic cancer just five weeks after her diagnosis. Within two months, her husband, John, died from cancer. They had celebrated their 50th wedding anniversary the year before and left behind two daughters and three grandchildren. In those final days, hospice nurses visited Nancy Werner in her Mountville home. When her husband’s health took a turn for the worse, he went to a hospice care facility in Mount Joy for his final days.

During that time, hospice nurses handled equipment and medications, and hospice aides helped with exercise and bathing. One of the hospice nurses first developed a strong bond with Nancy and then with John. After they both died, the hospice provided grief care for the family.

“They made the unpleasant situations as human as possible,” says daughter Vanessa Moore, of Mountville.

That care was a blessing, she says. Yet, until they needed the extra help, she didn’t know a lot about hospice care.

Doctors refer patients to hospice for terminal diagnoses, most commonly Alzheimer’s disease, chronic obstructive pulmonary disease and heart failure. It’s not an uncommon service. About half of patients who were on Medicare were enrolled in hospice at the time of their death, according to the National Hospice and Palliative Care Organization.

Nationwide, nearly 1.5 million patients on Medicare were enrolled in hospice care in 2016. And the number of people choosing hospice services has increased in the past few years as Medicare enrollees age and the number of available hospices rises, along with the awareness of hospice services.

While awareness of hospice care has grown, providers still hear the same myths that have been around for decades. Some are simply false, and other misconceptions can delay people from signing up for care that can help.

Here are the most common myths about hospice care local providers hear.

Myth: Signing up for hospice means giving up

When therapy and treatment isn’t working or helping, that time could be better spent.

“There’s some thought that if I stop (therapy and treatment), then I will die sooner or that I’m giving up on my family or that I have lost the will to live,” says Dr. Joan Harrold, medical director for Hospice and Community Care. “And none of those things are true.”

A close friend of hers struggled with this decision and wondered even if he was ready to end chemotherapy. He feared that would be seen as giving up on his wife, who wanted to continue the treatment.

“Not wanting him to be at end of life did not change the fact that he was, that he had months to live,” Harrold says.

Deciding to end chemotherapy recognized the treatment wasn’t helping.

“If he was going to do things with her and help her prepare to live without him, he needed some good time to do that,” she says. “And not spend that time going back and forth for treatments that weren’t working anymore.”

Myth: Choosing hospice will hasten death

It’s common to know someone who went into hospice who dies days later.

“Their entering hospice was not something that hastened their death, but they waited until they only had days to live,” Harrold says.

Hospice care (management of pain and symptoms, plus support for families) is meant to give people as much from life as possible in the time that they have left.

Studies have shown that the type of care hospices offer may actually extend people’s lives. One study tracked patients with terminal cancer. More than one-third received hospice care and survived for 67 days on average, compared to 64 days for the rest.

Myth: Hospice is for your final days

Accessing hospice care earlier actually can improve patients’ quality of life. A Yale School of Medicine-led study found that while Medicare covers hospice care after a prognosis of six months or less to live, most don’t sign up for the services until the last weeks or days of life.

The hospice team can get to know the patients and families better, as well as find medications that work the best when they have more time, says Peter Abraham, a hospice nurse with AseraCare Hospice.

That’s not as easy when the patients has days or even hours to live.

Myth: Hospice staff will give too much pain medication or euthanize the patient

Family members might think a patient is heavily sedated, but the slowing down is part of the changes that come with the end of life.

“It’s not that the medication is making them this way,” says Jenn Harris, a nurse and former hospice nurse with Hospice and Community Care. “This is the actual end of life.”

Concerns about pain medication are common, especially with all the publicity surrounding opioid addiction. Care teams often use morphine, which is perceived as more dangerous than common painkillers like hydrocodone or oxycodone, Harrold says. Morphine, however, can be given in much lower doses and in multiple forms. Pain medications can be locked up if theft is a concern.

Also, hospice is an elective service, Abraham says. Patients can refuse services.

As far as euthanizing, it’s not legal in Pennsylvania. Legislators have introduced several assisted-dying bills, but none have made significant legislative progress.

Myth: Staff will take away my medication or my doctor

“If someone has symptoms because of these things or if someone has something simple in the course of usual medical care that we would treat, we’re going to continue to treat those things in hospice,” Harrold says. “But if someone does not want these things treated, we can respect that as well.”

As for the doctor concern, hospice physicians like Harrold are available to consult and do house calls. Otherwise, patients can continue to work with their doctors. Often, it’s difficult for hospice patients to go to the doctor’s office, making it more convenient to consult the hospice physicians.

Myth: Hospice ends at six months

For most insurance plans, including Medicare, to pay for hospice, a patient should have a life expectancy of six months or less. That is often taken to mean that only six months of care is provided and covered.

Some patients remain in hospice care for longer than six months. Abraham spent more than a year with one lung cancer patient. Some improve and “graduate” from hospice. Recent studies have shown nearly 1 in 5 hospice patients have been discharged before he or she dies. They can return to hospice care later when their health declines.

Myth: Hospice is a place

Hospice staff can provide care in a facility just for hospice patients, but that’s not common.

More than half, 56 percent, of days of care were provided in the homes where patients live, according to the National Hospice and Palliative Care Organization in its latest annual report. About 42 percent of days were provided in nursing facilities, and about 1 percent were provided in an in-patient hospice facility.

Locally, Hospice and Community Care in Mount Joy has a hospice inpatient center with 24 beds for acute care.

Myth: Hospice helps only the patient

Abraham focuses on his patients during his visits, but at most stops he works with family members as well. He checks equipment and shares tears.

“We’re a second set of eyes,” Harris says. She has regularly kept family members updated with reports.

After the patient passes away, hospice registered nurses can continue to help the family, handling the death pronouncement, contacting the funeral home and taking care of details like drug disposal and equipment removal.