FAQs

Your team will come up with a special plan just for you and your loved ones. They will focus on making your pain and symptoms better. They will check on you regularly, and a member of the team is on call 24 hours a day, 7 days a week.

A doctor — either your own or one connected with a program — will give medical care. Nurses will also check on you. Aides will assist with things such as bathing, dressing, cleaning, and cooking.

Other services that are available include:

• Chaplain and spiritual services for you and your loved ones
• Social work and counseling
• Medicine to ease pain
• Medical equipment and supplies
• Advice on eating
• Physical and speech therapy
• Counseling for your loved ones

You’ll want to ask the hospice what’s the role of your own doctor once care begins and whether the same nurse will visit during the week.

• Is the program certified, licensed, and reviewed by the federal government or my state?
• How fast does the staff respond if my loved one has a problem with pain or trouble breathing?
• Is there a program to give caregivers some time away for errands or rest?
• Do staffers and volunteers get screening and training before they come into our home?
• How will I pay for this? Will insurance or Medicare cover part or all of this?
• How does hospice help us with grief and loss?
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DISPELLING HOSPICE MYTHS

Hospice is giving up

• 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.

HOSPICE IS ONLY FOR CANCER PATIENTS

• 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.

HOSPICE IS WHERE YOU GO TO DIE

• 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.

HOSPICE MEANS I’M GOING TO DIE SOON

• 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.

YOU CAN’T KEEP YOUR OWN DOCTOR IF YOU ENTER A HOSPICE PROGRAM

• 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.

IT IS THE DOCTOR’S RESPONSIBILITY TO BRING UP HOSPICE

• 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.

ONCE YOU CHOOSE HOSPICE CARE THERE IS NO TURNING BACK

• 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.

IF YOU CHOOSE HOSPICE CARE YOU WON’T GET OTHER MEDICAL CARE

• 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.

HOSPICE REQUIRES A DNR (DO NOT RESUSCITATE) ORDER

• 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.

ALL HOSPICES ARE THE SAME

• 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.

DISABLED PEOPLE CAN’T RECEIVE HOSPICE CARE

• 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.