Despite the fact that hospice has been around for a long time, there are a lot of misconceptions and myths. Here are a few of the most common ones.
Myth #1: If I or my loved one gets hospice, it means giving up.
Hospice patients never give up, nor do hospice staff and families give up. Care focuses on hope: hope to be pain free, hope to sit on the porch, hope to see my grandchildren next week, hope to celebrate our anniversary. We always hope for a cure, but at the same time need to prepare for the future. Hospice offers a hope for dignity and comfort.
Myth #2: Hospice is only for patients who are close to death or actively dying.
Hospice care, delivered by a caring team, takes time. Although many patients who do receive hospice care are close to death or actively dying, most are not. Walking on our final journey takes a long time with much to be done a long the way. Patients and loved ones need support, information, and aggressive medical care to manage symptoms. Social workers and chaplains need to time to help everyone come to a place of peace with what is happening.
It is not uncommon for families to tell hospice staff that they wish they had called hospice sooner.
Myth #3: Hospice means I am going to die sooner.
There are many articles out there that show that hospice patients actually live longer than patients with the same diagnosis who choose not to have hospice care. So, in addition to living longer, you can live better. Hospice is not euthanasia and should not be confused with patient assisted suicide or death.
Myth #4: Hospice means I have to sign a DNR (Do Not Resuscitate order).
Some hospice require a signed DNR. Others, don’t. It is NOT a requirement to receive hospice care. A DNR is a piece of paper that says you do not want to have electric shock and compressions that can break your ribs, if your heart stops. If paramedics get your heart pumping again, you may need to be put on a ventilator to help you breathe. A DNR is a piece of paper that allows you to make a decision about your care in that circumstance. It can also be torn up at any time. If you don’t have it, whoever is there must dial 911. Your loved ones or whoever is with you can not decide when it happens. The goal of hospice is patient directed care. A DNR is a choice, not a requirement.
Myth #5: Hospice is only for patients with cancer.
The majority of patients receiving hospice care do not have cancer. They have illnesses such as heart disease, lung disease, dementia, kidney disease, or liver failure. Patients with chronic diseases find hospice a great answer to help with the day to day management of their disease to keep them active and feeling the best possible.
Myth #6: I want to die at home, not in a nursing home or hospital.
Hospice is not a place, but a supportive team of professionals who are dedicated to aggressively providing care centered around you, where ever you are. Hospice care is provided in homes, apartments, mobile homes, homeless shelters, nursing homes, and special facilities just for hospice patients. Hospice is provided wherever a person calls home.
Myth #7: Hospice will stop all my medications.
Often, individuals are on long lists of medications. Some of these medications, if stopped, actually might make you feel better or increase your appetite. If I have a terminal diagnosis with less than 6 months to live, it doesn’t matter anymore about your cholesterol or taking medication for osteoporosis. As far as hospice is concerned, you can eat all the ice cream and eggs you want! Put whipped cream and a cherry on top. The hospice team, with your physician or the medical director, will make recommendations and the decision to continue to take or stop taking is yours.
Myth #8: Hospice will give me morphine for pain and I will become addicted.
Morphine in very small doses can be highly effective in treating pain and shortness of breath. The hospice medical team are very familiar and experienced in using morphine to help patients feel better so they can do the things they love. The doses are small and patients do not become addicted or heavily sedated. If you are afraid of taking morphine, ask the hospice nurse to stay with you for a while after your first dose till you feel more comfortable. Morphine in liquid form is often clear and difficult to see when pulling up into a dropper. A drop of food coloring can be added to help you measure the right amount.
Myth #9: If you are young or a child, you can not get hospice.
Age is not a factor in determining if someone can get hospice. There are some hospices with special programs just for children.
Myth #10: Hospice means there is nothing more to be done.
Hospice is “something” that can be done when an illness can not be cured. The focus of care changes from cure to comfort and wellbeing.
Myth #11: Hospice is expensive.
Hospice is covered by Medicare, Medicaid, and many private insurance providers. Many hospices have Foundations to cover indigent care or can help find ways to cover the cost of hospice care.
Myth #12: Hospice means I can’t see my regular physician.
Hospice physicians work closely with your regular doctor to set up a plan of care that is best for you. You can continue to see your regular doctor by notifying your hospice nurse prior to going.
Myth #13: Hospice means I can’t make my own decisions.
Hospice care is built around a plan of goals that you set. You are driving the bus. Everyone else is helping to make it a smooth ride.
Myth #14: Hospice provides 24-hour care.
The hospice team visits the patient and is available 24/7 for support and assistance with care. The team never assumes responsibility for care or provides unless “continuous care” is needed for a very short time and specific criteria are met. Not all hospices are able to provide “continuous care”.
Myth #15: All hospices are the same. It doesn’t matter if it is a non-profit or a for-profit hospice.
Each hospice must provide certain services, but how and how often they are provided can differ. Just like there are multiple business models to run a restaurant, there are different models to deliver hospice care. For many families, it is important to know whether the hospice is for-profit or non-profit.