By Sara Maples, MD
Choosing hospice isn’t about giving up. It’s about providing whole-person care for those who are nearing the end of life.
A study published in JAMA Network Open in 20201 found that black patients are significantly less likely to use hospice than patients of other races. Instead, they are more likely to have multiple medical emergency visits and hospitalizations, and undergo more intensive treatment in the last six months of life compared with white patients, regardless of cause of death.
One reason for this disparity lies in misunderstanding what hospice is and what services it provides. As a specialist in hospice and palliative care, it saddens me when I see patients and families missing an opportunity to experience the peace, comfort, compassion and control that hospice care can offer.
Here are five common myths about hospice care that I hear from patients, with a look at the truths behind each one.
Myth 1: Hospice is only needed in the last few days of life.
Fact: Years ago, hospice care was often reserved for the last few days of life. Today, we want to enroll people as early as possible to ensure a better quality of life for whatever time is left. Hospice care is covered by Medicare, Medicaid and most insurers if your physician and a hospice physician determine that you have a life expectancy of six months or less (and if you live longer than the six months, the coverage can often be extended). The sooner Hospice of Cincinnati can get a care plan in place, the sooner we can manage symptoms (like pain), and support and educate family on what to expect and how to help their loved one.
Myth 2: All medical care stops when you enroll in hospice.
Fact: People enroll in hospice when they have a life-limiting illness and decide to choose comfort rather than a cure. It can be scary to imagine that if you enter hospice and you develop a urinary tract infection or need wound care, for example, you won’t receive treatment. The truth is, you can get antibiotics, you can have wound care, and you can have other medical issues treated if it makes you more comfortable while you’re in hospice care.
Myth 3: I’ll have to turn my care over to strangers.
Fact: Most hospice care is provided in your home or the place you call home, where you will be surrounded by the people and the things that you love. Hospice partners with you and your family to learn what you want to get out of the hospice experience. You are in the lead, and hospice will work to ensure family and friends are included and share in decision making.
While it may feel awkward at first to welcome caregivers into your home, in most cases you will have the same nurses and aides visiting you over time, and you’ll get to know them. Also, hospice won’t be there 24 hours a day, because family members are still doing the bulk of the caregiving. Most caregivers welcome the additional medical support and education the hospice team provides.
If you have a trusted healthcare provider whom you have seen for years, and you’d like them to continue to be involved in your care, the hospice team will partner with you to allow that to happen.
Myth 4: If I enter hospice care, it means I don’t trust God to cure me.
Fact: Hospice care does not take away the ability to hope and pray for a miracle. In the meantime, however, we still need to manage patients’ symptoms and make sure their quality of life is good.
The hospice team will work with patients and families to honor their religious and cultural beliefs and welcomes support from your church clergy and ministries. Hospice also offers its own chaplains who can visit patients for additional spiritual support,
Myth 5: It’s giving up.
Fact: Hospice isn’t giving up – it’s speaking up for how you want to live during whatever time is left. In fact, for certain terminally ill patients, hospice is associated with longer survival times2, quite possibly because they feel better and can enjoy life without the stress of multiple emergency visits and hospital stays, and constant sickness from chemotherapy or other treatments.
Hospice is a choice. If for some reason you change your mind and want to come out of hospice care, you can at any time. It doesn’t have to be a final decision.
At Hospice of Cincinnati, we welcome your questions about hospice care and other services that support serious or advanced illness. Call us 24/7 at (513) 891-7700 or visit HospiceOfCincinnati.org.
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Sara Maples, M.D., is a hospice and palliative care specialist with TriHealth and Hospice of Cincinnati. A Cincinnati native, she received her medical degree from University of Cincinnati College of Medicine, and completed a palliative care fellowship at The Christ Hospital.