Myths and misconceptions surrounding hospice have caused people to delay accessing supportive end-of-life care they’re entitled to – or skip it entirely.
Melissa Wedberg, vice president of community relations at Emmanuel Hospice, is passionate about dispelling these myths and empowering individuals to take advantage of hospice services earlier on.
“If you have Medicare or private insurance, hospice is a benefit you have a right to when you’re medically eligible,” Wedberg said. “We are not hastening death; we are bringing support. Delaying hospice can lead to unnecessary pain, suffering and potentially even loss of time with loved ones. After finding out what hospice is – and is not – families wish they’d called sooner.”
Hospice is not giving up.
According to Wedberg, this is the biggest mental and emotional barrier that exists not only for patients but for families and even for some physicians, too.
“Hospice is not about resigning to the disease process or age; it’s about refocusing goals,” she explained. “When someone doesn’t have curative options left, we focus on enhancing quality of life. At Emmanuel, we start with the question, ‘How do you want to live?’ Hospice means gaining support during a difficult time rather than going through it alone.”
Hospice is not just for your last days or hours.
Individuals can be on hospice for months or more, especially when enrolling sooner than later. There are many diagnoses that make you eligible.
“It might surprise people to learn that someone on hospice is not necessarily someone who looks like they’re dying,” Wedberg said. “You may have seen a hospice patient and not even known it because they were out at a grocery store or attending a ball game. Hospice care is helping that individual live how they want to live for the time they have left.”
Hospice does not hasten death.
“Hospice care is a way for people to live more comfortably for longer,” Wedberg said. “In fact, we believe hospice is more about living than dying. We work tirelessly to provide life-giving opportunities that make every moment matter.”
Studies have found hospice patients may actually live longer due to better quality of life and symptom management than those with similar illnesses who are not receiving end-of-life care.
Hospice will not make you change doctors.
“You can keep your primary care provider, or you can choose to have your care overseen by the hospice medical director,” Wedberg said. “What’s important for patients and families to know is they remain in
control when they sign on. We offer support and solutions; you can decide if or how you want to accept them.”
Hospice will not take away your medications.
A hospice nurse will work with a patient’s doctor to determine which medications are necessary to maintain comfort, but “if a patient wants to continue a medication they’re taking, they’re generally able to do so,” Wedberg said.
Hospice is not a refusal of all medical treatment.
While choosing hospice means a focus on quality of life over curative measures, that doesn’t mean all medical treatments stop.
“With the exception of cancer treatment or dialysis, it’s rare patients have to give up treatment, especially when it’s for symptom management,” Wedberg said.
Hospice will not administer pain medication regardless of need.
Some believe hospice will immediately use heavy pain management, such as morphine or opioids, no matter the situation. There is also the myth that these medications will hasten death. Both are not true.
“We only treat pain if pain exists,” Wedberg said. “And we’re going to treat it at the appropriate level for each individual only to relieve discomfort and improve their quality of life.”
Additionally, patients are empowered to use other therapies and services, such as massage therapy, acupuncture, essential oils and more, alongside or instead of medication to manage their symptoms, depending on their wishes and goals.
Hospice is not a place.
Hospice is rarely an actual location that people go to, but rather a service that comes to you wherever you call home.
Hospice is not a one-time decision.
“If for any reason you don’t want hospice anymore, you can stop at any time and there’s no penalty,” Wedberg said. “You can leave and come back. You can switch providers. If a miracle treatment or clinical trial becomes available, you could take it. But in the meantime, if you’re eligible for hospice, why not get that support in place?”
For more information, call 616.719.0919 or visit EmmanuelHospice.org.