The Hospice Myths I Hear Most Often
As both a hospice nurse and a death doula, I’ve noticed something over and over again: many families don’t fear hospice itself. They fear what they think hospice means. I’ve had these conversations at bedsides, at kitchen tables and living rooms, in zoom consults, and even in social settings more times than I can count. Unfortunately, there are a lot of misconceptions. This is a topic I am passionate about because I truly believe that the more we understand hospice, and death, the less we have to fear it.
I could make this list much longer but I keep these blogs as short and sweet as possible, so I’ll start here.
“Hospice means giving up”. This is probably the biggest myth of all. Hospice does not mean giving up on someone. It means shifting the goals of care. Instead of trying to cure an illness that is no longer curable… the focus becomes comfort, dignity, symptom management, and making the most of whatever time remains. Quality of life. What that means differs for everyone. Which is why I encourage those advance directive conversations earlier rather than later. That, however, is a topic for a different post!
“Hospice speeds up death”. It doesn’t. Hospice doesn’t cause the dying process. It supports people who are already nearing the end of life because of an illness. In fact, some studies have found that people receiving hospice care may live as long as, or even longer than, those receiving aggressive medical treatment. Often while experiencing a better quality of life.
“Hospice is only for the last few days”. Not true. Many families wish they had called hospice sooner. Hospice isn’t just for the final hours of life. The earlier someone qualifies and enrolls, the more time there is to manage symptoms, support caregivers, answer questions, and help everyone feel more prepared.
“You can only be on hospice for six months”. Many people think “not sick enough yet”. When in reality, six months is an eligibility guideline, not a countdown. People can be recertified and remain on hospice as long as they continue to meet criteria.
“Hospice means medical care stops”. This is a big one. Medical care does not disappear when someone chooses hospice. It changes. The focus shifts away from tests, hospitalizations, specialists, and treatments aimed at curing the terminal illness and shifts towards care that supports comfort and quality of life. Nurses, physicians, aides, social workers, chaplains, volunteers, and bereavement specialists become part of that circle of care. For some families, it can actually feel like they have more support than they did before hospice.
“Hospice automatically discontinues all medications”. Not true. Every medication is looked at individually. Some medications may no longer make sense, while others may still be very important to comfort or symptom management. A blood pressure or heart medication, for example, might still be appropriate if stopping would cause uncomfortable symptoms. Medications for pain, anxiety, nausea, constipation, shortness of breath, and other symptoms are commonly part of hospice care.
If a medication is related to the terminal illness and needed for comfort or symptom management, it is generally covered through the hospice benefit. Medications for a completely unrelated condition may still be covered through the person’s regular prescription coverage. It isn’t simply, “you’re on hospice now, so we stop everything”. The question becomes, “is this medication still helping this person, right now?”
“Once you choose hospice, you can’t change your mind". You can. Choosing hospice is not an irreversible decision. A person can revoke hospice if their goals change and they decide they want to pursue treatment again. Then if they qualify again in the future, they can choose hospice again.
Hospice also does not automatically mean someone has a DNR, nor does it mean they are forbidden from going to the hospital. The hospice team will usually encourage families to call them first when something changes, because often symptoms can be managed right where the person is. If hospital-level care is needed for comfort, hospice can help coordinate that too. Hospice is a choice. And choosing it does not mean giving up your right to make choices.
“Morphine is what causes someone to die”. This is one of the more disheartening misconceptions because it can prevent people from accepting medication that could ease suffering. When used appropriately, morphine is given to relieve pain and ease the sensation of shortness of breath. The goal is comfort, not to hasten death.
“Hospice stops people from eating and drinking”. This is one of the hardest parts of the dying process for families to witness. Food is one of the ways we show love. So when someone begins eating and drinking less, it can feel terrible. Like we’re letting them starve. The truth is, as the body begins to naturally shut down, it does not need or want food like it once did. The body knows what to do. Hospice doesn’t withhold food or water. If someone is hungry or thirsty, we encourage them to eat and drink whatever feels good and is safe for them. We follow the body’s cues instead of forcing nutrition that might be uncomfortable or even burdensome to the body. Instead of encouraging one more bite, the act of love shifts to listening to what the body is telling us.
“Hospice is a place”. Another common misconception is that hospice is somewhere you go. While there are hospice facilities for certain situations, hospice is actually a philosophy of care, not a building. Most people receive hospice wherever they call home, whether that’s their house, an assisted living facility, a nursing home, or wherever they may be.
“Hospice is about dying”. Yes.. but also, about living. Slowing down and truly living, one day at a time. It begs us to ask, “what matters most now? Today?” Sometimes that’s watching the birds outside the window. It’s finishing a scrapbook, eating ice cream for breakfast, listening to favorite music, taking one last drive to the ocean, or being surrounded by favorite people and memories.
Hospice doesn’t take away hope, but it does ask us to redefine it. Instead of hoping for a cure, families begin to hope for comfort, peace, one more laugh, one more “I love you”. Hope doesn’t disappear. But it does change.
