Understanding Hospice, Getting the Answers

1. “Hospice staff are available by phone any time, day or night.” (TRUE)

• Families can depend on 24/7 assistance and advice by phone.
• When a crisis or concern arises while receiving care, hospice should be your first call.
• If a crisis cannot be handled over the phone, it is common for a nurse to make an
  in-person patient visit.

2.  “Hospice must stop services if an individual lives longer than 6 months.” (FALSE)

• Care can be extended past 6 months if a person’s health continues to get worse or
  the physician believes he or she still has 6 months or less to live.
• Under Medicare guidelines, hospices are required to stop care if the patient’s
  condition improves beyond a brief or temporary period so that life expectancy
  is now greater than six months. Hospices refer to this as a discharge.
• The Hospice Medicare Benefit, which pays for the vast majority of hospice,
  does not expire.

3.  “Hospice care is available only to individuals with cancer.” (FALSE)

• The majority of patients have conditions other than cancer.
• Hospice serves those with other life-threatening illnesses including heart and
  lung disease, dementia, kidney failure, and many other conditions.

4. “Hospice services are typically paid for by health insurance.” (TRUE)

• Hospice is covered by nearly all insurance plans, including Medicare and Medicaid.1
• Individuals and families typically do not pay out of pocket for hospice services.

However, there are some limits to what is covered by hospice. For example, nutritional
supplements, disposable supplies (e.g., bed pads), nursing home room and board,
and over-the-counter medications unrelated to the patient’s primary illness are not
typically covered.

5.  “Hospice provides grief support for families.” (TRUE)

• Hospices are required to offer bereavement services to the grieving family for
  at least a year after a loved-one dies.
• Grief support may be offered in a variety of formats: one-on-one counseling,
  group sessions, or periodic phone calls. Many hospices also offer grief support to
  the general public, regardless of whether hospice was involved in caring for the
  person who died.

6. “Hospice care can be provided in a nursing home.” (TRUE)

• Patients can get hospice care in a variety of residential settings, including nursing
  homes, assisted living communities, or private residences.

7. “Hospice care is only appropriate for people who have a few days to live.”
(FALSE)

• After experiencing the quality and comfort that hospice provides, a majority of
  individuals and families state that they wish they had started receiving hospice care
  earlier in the course of the illness.
• Hospice care tends to be most beneficial when families receive the full range of skilled
  medical, emotional and spiritual support services for at least a month or more.

8. “While in hospice, spouses, partners or children of the dying individual are
not allowed to directly participate in his or her care.” (FALSE)

• Hospice provides education and assistance to family caregivers.
• Hospice works to support the entire family and support system, by partnering with
  them to improve their ability to cope with the stress involved in providing care.
• In many cases, family members provide much of day-to-day patient care. Hospice
  nurses, social workers and other team members provide education and support to
  the family caregivers.

9. “Hospice care helps the dying individual by speeding up the dying process.”
(FALSE)

• Hospice providers do not speed up the dying process, nor can they or other medical
  professionals cure terminal illnesses. Some studies suggest hospice care may actually
  extend life.
• Hospice tries to maximize patient quality of life for the remainder of his/her life
  by addressing pain and symptoms. Hospice can also offer opportunities to do
  important things – such as attend a wedding, graduation, church service, or
  other significant event.

10. “Hospice care cannot be provided at home.” (FALSE)

• The majority of hospice care (66%) is provided in the home.2
• A smaller, but growing, percentage of hospice patients receive care outside of the
  home – for example, in a nursing home community, hospital, or hospice residence.

11. “Only individuals over age 65 are eligible for hospice services.” (FALSE)

• Anyone expected to live 6 months or less can receive hospice care, regardless of age.

12. “Anyone can make a referral to hospice.” (TRUE)

• A patient, family member, friend or doctor can contact a hospice to ask about whether
  hospice care would be appropriate.
• After a conversation and assessment of the condition, the patient’s doctor and
  hospice professionals (in consultation with the patient) will determine whether the
  individual could benefit from hospice care.

13. “Hospice provides medications, treatments, medical equipment and supplies
that are related to the patient’s primary illness.” (TRUE)

• Hospices vary, but they should provide medication, treatments, medical equipment
  and supplies associated with the patient’s terminal illness. Families should be aware of
  the exceptions, as they may need to pay out of pocket for these items.

14. “Hospice services end when the hospice patient dies.” (FALSE)

• Grief support is available for the surviving family members up to a year after the
  patient’s death.
• Social workers are available to assist families in navigating services after the patient
  dies — such as connecting the family with bereavement resources or providing
  information about survivor benefits.

15. “Hospice care is available to any individual expected to live 6 months or
less.” (TRUE)

• Individuals can remain in hospice care for longer than 6 months. However, their health
  status must be reviewed on a regular basis by the hospice team to determine whether
  they are still eligible for services. Hospices may be required to end services if, after
  observing patients for a few months, they seem to have stabilized, or show signs of
  continued improvement.

16. “People who live alone are able to receive hospice services.” (TRUE)

• A majority of hospices (over 80%) will enroll patients who do not have a caregiver.3
  Those living alone may need a caregiver at some point, but adaptations can usually
  be made so that the patient does not have to relocate.
• Hospice volunteers can provide help to patients living alone by preparing meals,
  performing light housekeeping, or just being present to provide some company.

17. “A primary goal of hospice is to treat the emotional needs of the dying
individual and their family.” (TRUE)

• Dealing with a serious illness or loss of a loved one can be very difficult. The hospice
  team supports families by providing emotional support. Social workers, grief
  counselors, and spiritual support personnel are part of the hospice team.
• Individuals and family can decide the extent of services they want and need to receive.

18. “A person with Alzheimer’s disease or dementia cannot have hospice
services.” (FALSE)

• Patients with Alzheimer’s disease or other types of dementia are welcome in hospice.
  In fact, they are a large and fast-growing segment of the hospice population, currently
  making up nearly 13% of all hospice patients.2

19. “While receiving hospice care, individuals can also receive treatments such
as chemotherapy, radiation, or surgery to cure the person’s primary illness.”
(FALSE)

• In rare cases chemotherapy, radiation and surgery can be used to relieve pain or other
  symptoms while receiving hospice care. However, in order to receive these high risk
  treatments for purposes other than comfort, the individual must stop hospice care.

20. “Individuals receiving hospice care cannot be taken to the hospital for
treatment.” (FALSE)

• Although the need for hospitalization is rare while patients are in hospice care,
  it is allowable. For example, patients can get hospital care for conditions that are
  unrelated to their terminal illness.
• While receiving hospice care, hospitalizations are usually unnecessary.
• While hospice should be notified before going to the hospital, a patient can seek
  other care at any time.
• Caregivers should tell emergency medical staff that their loved one is receiving
  hospice care.

21. “Hospice care focuses on managing an individual’s pain and other
symptoms.” (TRUE)

• Hospice provides high quality pain and symptom management, which is central
  to its mission.
• Most patients can expect pain relief and an increase in their quality of life while
  receiving hospice care.

22. “Hospice care helps caregivers and family members, as well as the dying
individual.” (TRUE)

• Caregiver burdens are significantly eased with hospice and the team of professionals
  who provide supportive services.
• Hospice can provide a break for caregivers who need one.

23. “The hospice care team includes physicians, nurses, social workers, and
chaplains.” (TRUE)

• Hospice uses a team approach to care for the physical, emotional, social and spiritual
  needs of patients and their families.
• All hospice team members are involved in patient care. Some other team members
  may include hospice aides, physical and occupational therapists, pharmacists, trained
  volunteers and others providing direct and indirect care.

24. “Hospice care includes a minimum of 12 hours of daily bedside care provided
by a clinician.” (FALSE)

• Hospice patients generally receive a few visits each week. However, the frequency and
  duration of visits may vary depending on the patient’s condition, and resources and
  staff availability.
• Families may find it necessary to supplement hospice services with care from
  other sources.

1. As of January 2014, Oklahoma is the only state that does not include hospice through Medicaid.

2. National Hospice and Palliative Care Organization. Fast facts and figures: hospice care
in America. 2013 Edition: 1-18.

3. Carlson et al. 2012, Health Affairs, 31(12), 2690-2698.
https://hospicefoundation.org/hfa/media/Files/8-5x11_booklet_Hospice_Cagle_Sept1.pdf