MYTH
Hospice is giving up.TRUTH
Hospice is medical care toward the goal of comfort and dignity for someone whose life is drawing to a close. It is, in fact, the “something more” for someone who has been told nothing more can be done for them.
MYTH
Hospice is where you go to die.TRUTH
The vast majority of hospice patients receive care in whatever setting they call ‘home’ – which includes private residences, assisted living communities, hospitals and long-term-care facilities. In some instances hospice is a ‘place’ for people whose pain cannot be adequately managed in their home setting.
MYTH
Hospice means I’m going to die soon.TRUTH
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.
MYTH
Once you choose hospice care there is no turning back.TRUTH
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 that you meet the medical eligibility criteria.
MYTH
All hospices are the same.TRUTH
There are thousands of hospices in the United States. If they participate with Medicare, as most do, they are required to provide certain services to the patient and documentation to the government. In that respect, they are the same. However, hospices may be nonprofit or for-profit; they may be community-based or serve many communities, cities or states from a central location; they may be independent or part of another organization such as a hospital, health system or private company. The point is that all hospices (that participate with Medicare) meet the same basic requirements although there likely are differences from one provider to the next.
MYTH
Hospice is only for cancer patients.TRUTH
Not anymore. When hospice began in the U.S. in 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, or Alzheimer’s and other dementias.
MYTH
You can't keep your own doctor if you enter a hospice program.TRUTH
Your family doctor or specialist is encouraged to remain engaged in your care. The Hospice Physician works closely with your doctor – who knows you better (medically) than anyone else – to determine the specific medical needs that will be addressed in your individual plan of care.
MYTH
It is the doctor’s responsibility to bring up hospice.TRUTH
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 caregiver) to initiate the discussion if they choose. Since hospices consistently hear from their patients/families that they wish they had gotten 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.
MYTH
If you choose hospice care you won’t get other medical care.TRUTH
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.
MYTH
Hospice requires a DNR (Do Not Resuscitate) Order.TRUTH
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. While many people wish to have a DNR to avoid unnecessary medical intervention and hospitalization, you are not required to have a DNR to receive hospice care.
MYTH
Disabled people can’t receive hospice care.TRUTH
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 be 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.