The enormous baby boom generation is reaching the last part of its lifespan. Because of their numbers, boomers’ needs and tastes tend to drive trends in all areas, and that includes options for aging and end-of-life care. Hospice care is increasingly popular, and programs are gearing up to serve members of this generation as they need it.
But there remains a lot confusion and misunderstanding about how these programs work, according to Stephanie Mehl, RN, who works as a community educator and hospice liaison at Providence Hospice in Seattle. She encounters mistaken ideas about what hospice is, when it is appropriate and what it means when someone accepts hospice care.
Mehl, who also has a master’s degree in psychiatric nursing, has spent her career caring for cancer patients, many of them terminally ill. Today, her job is to help severely ill people decide whether hospice care is for them. If it is, she helps them get established with hospice care through the Providence Hospice health care system.
Speaking with Money Talks News, she shared the most commonly held myths she encounters about hospice, and the reality.
Myth No. 1: Hospice and palliative care are the same thing
Hospice and palliative care are not identical. Palliative care is a medical speciality that focuses not on fighting disease but on alleviating pain and managing side effects from illness and treatment. Palliative care can help anyone at any age and any stage of an illness.
Hospice is a system for getting palliative care to people with terminal illnesses, usually at home. The United States has about 6,100 hospice programs — some small, some big, some nonprofit and some that operate through large corporate chains. Hospice care is delivered by teams that include doctors and nurses, nutritionists, pharmacists, social workers, chaplains, counselors, massage therapists and others.
A patient can get hospice care if a medical provider and hospice program judge that they have six months or less to live. Medicare will continue to pay if the patient lives on and continues to need services.
Myth No. 2: You have to leave home
Hospice care typically is given at home, although “home” includes skilled nursing, assisted living and adult family homes, Mehl says. Two-thirds of those who die while in hospice die at home.
Although most people surveyed say they’d prefer to die at home, 63 percent of Americans die in hospitals, according to the American Psychological Association’s End of Life Fact Sheet.
Hospice gives people more control over their last days and their deaths.
When a patient is on hospice home care, family members, friends or paid caregivers do most of the caregiving. They — and the patient, when possible — are guided by hospice staff who are on call 24/7 and who visit regularly to assess the patient and the care.
Hospice workers manage medications and help with medical problems like nausea, insomnia, exhaustion, depression, constipation and breathing difficulties. They discuss treatment options and explain what to expect and can bring in spiritual or psychological counseling for patients and caregivers.
Hospice companies order and deliver equipment — hospital beds, oxygen equipment, special mattresses and wheelchairs, bathing and toilet equipment for instance — so patients are safe and comfortable at home.
That lifts stress from families. “Family members don’t have to worry about that stuff. They don’t have to worry about getting the medications. Someone can do it for them,” Mehl says.
Myth No. 3: Hospice is costly for families
Hospice takes care of billing and collecting insurance payments. Families don’t see the bills. Most costs are paid by Medicare or Medicaid, insurance plans, managed care plans and HMOs. Local agencies and groups often have programs to cover costs for hospice patients who can’t pay.
Myth No. 4: Hospice hastens death
It’s true that many hospice patients die soon after starting hospice care. In 2014 about half of hospice patients received care for fewer than 17 days, according to the National Hospice and Palliative Care Organization.
Those stays are not short because hospice kills people. One reason for short stays is that doctors typically wait too long to refer their terminally ill patients to hospice. That’s changing, though, Mehl says.In fact, research shows patients living longer in hospice care. The reasons might include:
- Stopping aggressive medical treatments that stress weakened patients.
- Increased personal attention, monitoring and treatments.
- Hospice’s emphasis on meeting patients’ emotional and spiritual needs.
- Support for family caregivers. “Their reduced stress or workload may help patients feel like less of a burden, and so increase their desire to live,” says MDA/ALS Newsmagazine, which focuses on muscle diseases.
People sometimes confuse hospice with the aid-in-dying (or “death with dignity”) movement, which advocates for giving dying people the ability to end their own lives in cases of extreme pain. But the two are unrelated.
Myth No. 5: Your doctor will tell you when you need hospice
Physicians are trained in healing and in keeping patients alive, points out Dr. Atul Gawande, a writer and surgeon, in “Being Mortal,” a book about his experiences with dying patients. It can be difficult for doctors to acknowledge a patient’s impending death. (Gawande elaborates in a PBS “Frontline” documentary, which can be viewed online.)
You can ask your doctors about hospice, Mehl says. Or call an oncologist’s office to learn about the choices locally. Also, most large hospitals have palliative care specialists who can explain what’s available.
Myth No. 6: Hospice means giving up on living
You must be near death to be eligible for hospice care and, in accepting services, you agree to forgo life-saving treatment. But the hospice emphasis is on helping people live well and on improving the quality of their lives, Mehl says. “You’re basically saying to the medical world, ‘I’m choosing comfort and quality of life versus trying to cure this thing that doesn’t want to get cured now.'”
However, you can change your mind. Some patients receive hospice and then feel stronger. In that case, you can go off hospice and get more chemotherapy, for example, if it’s available. “Nothing is set in stone,” Mehl says.
“Life happens, people change emotionally and physically. Hospice recognizes that.”
What is your family’s experience with hospice or managing end-of-life decisions? Share with us in comments below or on our Facebook page.