Hospice Care: A Guide for Families and Caregivers

Article Summary


Many people think that hospice provides comfort care to people in the final days of their lives. While this is true, it’s not representative of everything that hospice care has to offer.

When someone’s doctor certifies that they have a life expectancy of 6 months or less, they may be eligible for hospice care. The service helps to maximize quality of life for people at the end of life. Hospice care providers can address someone’s physical, emotional and spiritual discomfort while working in conjunction with their existing doctors, for continuity of care. They also work with family caregivers, who typically serve as the primary caregivers when someone receives hospice care at home.

A hospice care team doesn’t focus solely on their patients with a life-limiting diagnosis; they also provide support to family caregivers.

Hospice Services

Hospice care may provide:

  • Hands-on training during scheduled visits to teach you how to care for your loved one
  • Phone support to address problems that may arise as you care for your loved one
  • Respite care, to help lower your chances of experiencing caregiver burnout
  • Emotional support or counseling as you cope with your loved one’s illness
  • Bereavement counseling for up to 13 months after your loved one passes

How much does hospice care cost?

If your parent has Medicare Part A, you won’t pay anything for hospice care – 100 percent of the costs will be covered through the Medicare Hospice Benefit.

There are some costs that you may have to pay on your own, even if your parent has Medicare. For example, if your parent lives in an assisted living facility and receives hospice care there, the Medicare Hospice Benefit won’t cover the cost of room and board at the facility. If your parent needs to be admitted to the hospital for a short period of respite care, you may need to pay for a portion of the fee.

The Veterans Administration (VA) also offers a hospice benefit to enrolled veterans, with no copays for the service.

Medicaid covers hospice care, as well, but the coverage varies by state.

Private insurance plans may also have a hospice benefit, but this varies by the individual plan.

How do I find hospice care for my loved one?

People who have end-stage dementia are eligible for hospice. Many people are referred to hospice care by their doctors, but physicians may not think to refer their patients until the final few days of their lives. If your loved one qualifies for hospice care because their life expectancy is 6 months or less and you think that they would benefit from it, ask the doctor for a referral.

You may also reach out to a hospice locally without a referral from a doctor, but before the hospice can offer any services, two doctors – often the patient’s own doctor and a doctor with the hospice – must examine your loved one and certify that their life expectancy is 6 months or less.

Whether you reach out to hospices on your own or get recommendations from your parent’s doctor, you can choose a hospice care program that seems well suited for your parent and your family. To get referrals to hospice programs in your area:

  • Ask your parent’s doctor for a list of hospice programs
  • Ask your friends and neighbors if they recommend any local hospice programs
  • Search for local hospice programs by zip code with Medicare’s Hospice Compare
  • Search by zip code for local hospice providers with the National Hospice and Palliative Care Organization’s Find a Care Provider search engine
  • Look on your state’s hospice association website for links to local hospice providers; the Hospice Foundation of America’ Hospice Directory includes links to state hospice associations.

To find the right hospice for your loved one, ask these questions:

  • Is your program certified by the Joint Commission on Accreditation of Healthcare Organizations?
  • How often will hospice care providers visit my parent at home, and for how long per visit?
  • If we need to contact the program at night or on the weekend, how soon will you respond?
  • What will the hospice care team expect family caregivers to do for our loved one?
  • How often is respite care offered, and for how long?
  • How do hospice team members interact with someone who has end-stage dementia?

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