There are many myths and stigmas associated with hospice care. It’s no surprise since hospice care helps those who are terminally ill–even the word ‘hospice’ can bring up frightening thoughts. Well here at Salute Hospice, we are ready to dispel these myths and clarify common stigmas about hospice care. The following statements are myths that we have heard about hospice care.
In actuality, hospice is medical care that works toward the goal of comfort and dignity for someone whose life is drawing to a close. It is the “something more” for someone who has been told nothing more can be done for them.
Not true anymore. When hospice began in the United States around the mid-1970s, most hospice patients had cancer. Today, while many hospice patients have cancer, the majority have other life-limiting illnesses such as end-stage heart, lung, or kidney disease, Alzheimer’s, and other dementias.
This is not the case. Hospice is a ‘place’ for people whose pain and comfort cannot be managed without help. Hospice patients receive care in whatever setting they call ‘home’ – which includes private residences, assisted living facilities, board and care residences, and long-term-care facilities.
Not at all! Studies show exactly the opposite! Although hospice care neither hastens death nor prolongs life, patients with certain illnesses actually live somewhat longer with hospice care than those with the same illness who don’t choose hospice care. And regardless of the illness, patient/family satisfaction with services received are consistently higher when hospice is involved.
This couldn’t be further from the truth. In fact, your family doctor or specialist is encouraged to remain engaged in your care. The hospice physician works closely with your doctor to determine the specific medical needs that will be addressed in your individual plan of care.
This simply isn’t true. While it is the physician’s responsibility to determine whether a patient meets the medical eligibility criteria to receive hospice services, it is appropriate for the patient (or family/caregiver) to initiate the hospice discussion. Since hospices consistently hear from their patients/families that they wish they had started hospice care sooner, it is a good idea to let the physician know at the time of diagnosis that you are open to discussing hospice care at the appropriate time.
Absolutely not! As a matter of fact, you are free to leave a hospice program at any time for any reason without penalty. You can re-enroll in a hospice program any time as long as you still meet the medical eligibility criteria.
Not so—in reality, while the hospice team will provide all aspects of care for the illness that qualifies you for hospice services, you are still free to seek treatment for unrelated illnesses or conditions. For example, if you are receiving hospice care for heart disease, you can still get treatment for a broken bone.
Nope! The truth is that, while many people wish to have a DNR (do not resuscitate) to avoid unnecessary medical intervention and hospitalization, you are not required to have a DNR to receive hospice care. Keep in mind that the purpose and benefit of hospice care is to allow for a peaceful passing in a comfortable and familiar setting like home with loved ones near.
False! As it happens, there are thousands of hospice agencies in the United States. It is true that all hospices must meet certain government requirements, but each agency also has its unique style when caring for their patients.
This statement is simply untrue. Individuals with intellectual and developmental disabilities (I/DD) live much longer today and generally die of the same illnesses and conditions present in the general population. While state and local regulations may create barriers in some locations, the same hospice care provided to any patient/family is generally available to those with I/DD, whether in a group home or another residential setting, and can include support for direct care staff. Also, it is important to recognize and respect that many individuals with I/DD have the capacity to participate in decisions about their end-of-life care, whether through an advance directive or in conversation, and should be informed about their illness, the options available, and the type of care those choices involve.