A Guide to Hospice Care

(By Stephen Connor, previously the vice president for research and professional development, National Hospice and Palliative Care Organization. Previously published by and reprinted with permission from the Partnership for Caring, Inc.)

Most Americans don’t know what hospice is, according to research conducted by the National Hospice Foundation.

Nearly 75 percent don’t know that hospice care can be provided at home and less than 10 percent know it provides pain relief for the terminally ill. Nearly 80 percent don’t think of it as a choice for end-of-life care, and 90 percent don’t know that Medicare pays for it.

Here are some of the questions you should ask when you’re looking for a good hospice program:

  • What services does hospice provide?
  • What kind of support is available to the family/caregiver?
  • What roles do the attending physician and the hospice physician play?
  • What does the hospice volunteer do?
  • How will hospice meet spiritual and emotional needs?
  • How does hospice work to keep the patient comfortable?
  • How are hospice services provided after hours?
  • How and where does hospice provide short-term inpatient care?
  • Can hospice be brought into a nursing home or long-term care facility?
  • For patients with no insurance whose loved ones can’t provide primary care, will hospice work with the family to care for the patient at home or move him to another setting?

Hospice is a philosophy of caring for the terminally ill. The hospice philosophy holds that end-of-life care should emphasize quality of life. Hospice is about the living that goes on during the time between the diagnosis of a life threatening illness and death.

Hospice is a Medicare and Medicaid benefit. Congress established the Medicare Hospice Benefit in 1983 to ensure that all Medicare beneficiaries could access high-quality end-of-life care. Today, more than eighty percent of hospice patients are Medicare beneficiaries. The Medicare and Medicaid Hospice Benefits promise dying Americans a death that is free of pain, along with emotional and spiritual support.

Hospice is all-inclusive care. The object of hospice care is to treat the whole person, not the disease. It is family-centered care that addresses the physical, spiritual, emotional, and practical needs of a patient with a life-threatening illness. An interdisciplinary team of health care professional works with the patient and family to design and implement a plan of care unique to each patient. In addition to the care provided by the hospice team, hospice provides all medications, services, and equipment related to the terminal illness. Hospice care does not end with the patient’s death; rather, it continues with up to 12 months of bereavement counseling for the family and other loved ones.

Hospice cares for people where they live. Although there are inpatient hospice facilities and some hospice care is provided in hospitals or nursing homes, the vast majority of hospice patients are cared for in their home. Today, 95 percent of hospice days of care are provided at the patient’s residence.

Hospice care is reimbursed on a per diem basis. The Medicare and Medicaid reimbursement for hospice care is a set rate per day. There are four hospice rates each linked to one of the four levels of hospice care: routine home care, general inpatient care, respite care, and continuous care. The routine home care rate, at which more than 95 percent of all Medicare hospice patients are billed, is approximately $110 per day.

Patient Information. Hospices now care for about 40% of Americans who die from cancer and a growing number of patients with other chronic, life-threatening illnesses, such as end-stage heart or lung disease. According to actual patient counts supplied by National Hospice and Palliative Care Organization (NHPCO) member hospices, and conservative estimates for other hospice programs, NHPCO estimates that hospices provided care to 1.56 million people in 2009. NHPCO estimates than more than 41.6% percent of all Americans who died in 2009 were in hospice care.

Update:

Please see the memorandum from the Department of Health and Human Services that sets the Hospice payment rates for FY2016.