Nearly 1.5 million Medicare beneficiaries were enrolled in hospice care for at least one day during 2017, according to a National Hospice and Palliative Care Organization (NHPCO) report. That figure increased by 4.5% over the previous year and is expected to keep rising. More than that, the number of people aged 65 or older in the United States is projected to top 98 million by the year 2060. This means that more people than ever will be living with life-limiting illnesses and will require end-of-life care.
Hospice care is more than just an option for terminally ill patients. For many, it is an eventuality. For as many patients who receive hospice care, however, there are just as many who misunderstand it.
Learn the truth about hospice and help dispel the stigma that surrounds this important service.
The Simple Truth About Hospice
The Hospice Foundation of America (HFA) defines hospice as medical care designed to help someone with a terminal illness live as well as possible for as long as possible. It is administered by a team of trained professionals who work together to address the physical, mental, emotional, and spiritual needs of end-of-life patients and their family. To simplify hospice care into a single concept, it is about increasing quality of life for terminally ill patients by providing necessary services to the patient as well as their caregivers and family.
Unfortunately, there are many myths about hospice that create a stigma against this essential end-of-life service. Hospice care may not be right for every patient, but the only way to determine whether hospice is necessary is to learn what really happens in hospice. Educating yourself and your family with simple facts about hospice care can help you decide whether it is something to consider.
Debunking the Top 12 Hospice Myths and Misconceptions
One of the most common myths about hospice is that it is only for people who have given up on life. Not only is this completely incorrect, but it is a misconception that creates a dangerous stigma – a stigma that, for some patients, is enough to keep them from seeking care that could help alleviate pain, reduce stress, and improve symptoms of depression during the final weeks or months of life. Separating fact from fiction is the best way to determine whether hospice care is right for you or your loved one.
Myth #1: Hospice Care Is Only for People Who Have Given up on Life
It is a common misconception that hospice is about dying when, in reality, it is designed to help terminally ill patients live their final days to the fullest. The National Hospice and Palliative Care Organization (NHPCO) considers hospice care the model for quality and compassionate care for people facing a life-limiting illness. It provides medical care and pain management as well as emotional and spiritual support tailored to the patient's needs and desires. The ultimate goal of hospice care is to increase the patient's quality of life and provide support for family members and caretakers to ensure that the patient's final days are as comfortable as possible.
Myth #2: Once You Enter Hospice Care, You Can Never Go Back
Hospice care is not a death sentence, it is simply a comprehensive service offered to patients with life-limiting illnesses for whom a cure is unlikely or impossible. Patients have the right to leave hospice care at any time. If the patient's condition improves, they may choose to pursue curative treatment again. The option to reapply for hospice always remains open.
Another common misconception about hospice care is that you must sign a do-not-resuscitate (DNR) order upon entering hospice. A DNR is one of several legal documents patients often choose to include when creating an advanced healthcare directive, but it is by no means a requirement of hospice. The goal of hospice is to provide comfort and support for the patient in whatever form they choose.
Myth #3: Hospice Care Is Only for People with a Few Days or Weeks to Live
According to a 2018 report, the average length of service for Medicare patients enrolled in hospice was 76 days and the median length of service was 24 days. Hospice care is generally intended for patients whose diagnosis limits their life expectancy to no more than 6 months, but individual cases vary.
Myth #4: Entering Hospice Care Means Giving up Control over Your Care
Hospice care is intended to increase quality of life for terminally ill patients, so it cannot be forced on anyone. This form of care is administered by a team of professionals specially trained to provide care and support to meet the patient's medical, physical, emotional, and spiritual needs, so treatment varies on a case-by-case basis. The patient always has the right to request or refuse services. Hospice patients may even choose to leave hospice and return to curative treatment with the option to return later.
Myth #5: Your Family Has No Control over Your Care Once You Enter Hospice Care
Hospice care is for the patient's family and loved ones just as much as the patient. Throughout hospice care and following the patient's passing, both the patient and their loved ones have access to support services, including grief counseling, social services, spiritual guidance, and more.
Myth #6: You Need a Doctor's Referral to Enter Hospice Care
One of the top facts about hospice everyone should know is that anyone can make a referral to hospice. If a family member, friend, or loved one believes a patient could benefit from hospice care, they are allowed to make a referral which will be followed by a doctor's order to qualify the patient for coverage.
Myth #7: Hospice Care Can Only Be Given at a Hospital or Hospice Facility
Hospice care can be provided wherever the patient feels most comfortable or wherever services can most effectively be provided. Many patients choose to receive hospice care in the comfort of their own home, though it can also be administered in a hospital, nursing home, assisted living facility, or a hospice center. Hospice is not a location but a method of care focused on pain and symptom management.
Myth #8: Hospice Care and Palliative Care Are the Same Thing
One of the most important hospice facts any patient should understand is that it is a different service from palliative care. Both palliative care and hospice care alleviate suffering and enhance the quality of life for patients and their loved ones, but hospice care is intended for patients with life-limiting diseases who are no longer pursuing curative treatment. Palliative care can begin as soon as the patient is diagnosed and may be given at the same time as treatment.
Myth #9: Only Patients with Cancer Can Benefit from Hospice Care
According to a 2018 report, nearly three-quarters (about 70%) of hospice care patients were admitted with a non-cancer primary diagnosis. This leaves more than one-quarter (about 30%) of hospice patients having a primary diagnosis of cancer – that is by no means a majority.
Cancer is universally understood to be one of the most aggressive forms of disease and one of the most difficult to treat. Though this may be true, hospice patients are admitted with a wide variety of diagnoses including heart disease (17.6%), dementia (15.6%), lung disease (11%), stroke (9.4%), and chronic kidney disease (2.3%). Hospice case managers and medical professionals are trained to manage the symptoms of many conditions, not just cancer.
Myth #10: Hospice Care Is Very Expensive
Hospice care is a benefit fully funded by Medicare/Medicaid and it is also covered by many private insurance companies. This is one of the top hospice care facts that patients misunderstand, and it leads to terminally ill patients not receiving the care they deserve. In order to qualify for hospice care, the U.S. Centers for Medicare & Medicaid require that the patient meets the following criteria:
- The patient's hospice doctor and primary care physician certify that they are terminally ill with a life expectancy of 6 months or less
- The patient accepts palliative care instead of curative treatment for their illness
- The patient signs a statement choosing hospice care instead of other Medicare-covered benefits to treat the terminal illness or related conditions
Hospice care is also a service covered by the U.S. Department of Veteran's Affairs. Veterans may qualify for hospice care if they meet similar criteria. Most Medicare or Medicaid plans cover hospice care as well as medications, supplies, and medical equipment related to the diagnosis.
Myth #11: Hospice Care Doesn't Make Much of a Difference
Patients who enter hospice care have already been diagnosed with a terminal illness. Though there may be little to no expectation of a cure, hospice care helps patients live out their remaining days with as little pain, discomfort, and stress as possible. In fact, a 2010 research study showed that patients who received hospice care had a better quality of life and lived almost three months longer than patients who received standard care alone.
Myth #12: Hospice Care Ends with the Patient's Passing
One of the most important hospice myths and facts for families and caregivers to understand is that hospice care does not end with the patient's passing. Bereavement and grief support services are often included for family members for up to a full year after the patient's passing. Many hospice services also help make funeral arrangements or provide support for other issues that arise after the patient's death.
Whether you are a family member, caregiver, or a patient yourself, learning the facts about hospice care is the only way to determine if it is the best option. At Keystone Hospice, we are committed to providing the best care possible for you and your loved ones. Our expert staff is on hand to answer your questions and dispel any remaining questions or hospice myths you may still have on your mind.