How to Arrange Hospice

Hospice services are all provided and coordinated by an interdisciplinary team within a single agency led by a medical director. To comply with Medicare rules, services must be provided by a certified agency and that agency must be used for all hospice care. Services can be provided in the home, at a residential facility like a nursing home, or at an in-patient hospice facility.

The Hospice Team

Hospice Medical Director and/or Primary Care Physician
The Medical Director, usually a MD, oversees and directs the medical care of hospice patients. It is possible to arrange to have your primary care physician be included as part of the hospice team to work with the Medical Director to direct and guide services and to ensure the continuity of medical care. The Medical Director is also responsible for determining whether a patient is medically eligible for hospice and for re-certifying the need for continuing hospice care.

Primary Care Provider
The primary care provider is usually a nurse practitioner who monitors the patient and coordinates care with the Medical Director. The nurse will establish a routine of scheduled visits and provide all the skilled nursing care required to manage symptoms and control pain. A hospice nurse will be available 24 hours a day to respond to situations which need immediate attention.

Social Worker
Hospice care is coordinated by a social worker, including arranging respite care and other short-term in-patient stays. Social workers will also help families access other services and agencies in the community as needed.

Periods of Care

Because of the uncertainty and the time-limited nature of end of life care, hospice is delivered in periods of care lasting 90 days initially, then 60 days thereafter. At the start of each period the hospice medical director must recertify the patient, based on continuing need. There is no limit on the number of times a person may be recertified for an additional 60 days. A patient or legal guardian may choose to stop hospice at any time, and has the right to switch providers once during each certified period of hospice care.

How to Pay for Hospice

Hospice is covered by almost all health insurance plans including federal Medicare and state Medicaid programs. There are also hospice agencies, usually not-for-profit organizations that provide care regardless of the patient’s ability to pay and have funds for patients who may not be eligible or able to afford any health insurance.

Medicare and Medicaid
Hospice benefits are included in Medicare part A (the hospital plan) and through Medicaid in 47 US states and the District of Colombia. To use the Medicare Hospice Benefit people must sign a statement choosing hospice instead of other Medicare-covered benefits to treat a terminal illness. Medicare coverage will still be available for any health care services not related to a terminal illness, so if a hospice patient falls and breaks a wrist, they will still be covered by Medicare. Medicaid (state funded) hospice benefits may have a similar requirement which may vary in the details from state to state.

Military benefits
The Veterans Health Administration (VHA) includes hospice benefits in the basic eligibility package available to enrolled participants. VA medical centers will either provide hospice care directly in their facilities or purchase it from a community hospice agency. The US military health plan TRICARE includes hospice for active duty service members and retirees of the seven uniformed services, their family members, and survivors. TRICARE also provides hospice benefits for National Guard and Reserve members and their families after the member turns 60. Hospice benefits through TRICARE are only available to patients residing in the fifty United States, Washington D.C. and U.S. territories.

Private health insurance
Private health insurance companies offer policies which include hospice benefits that resemble government plans but may vary in the details. Always check with your insurance provider and the hospice agency on what benefits and services are available and how they will be paid for. Insurance plans will likely cover the majority of costs, including medications, but there may be co-pays and other expenses for which you are responsible.

How to Find a Hospice Provider

Hospice has become a multi-million dollar industry and there are thousands of hospice providers across the country. Hospice agencies must meet “conditions of participation” set by the Department of Health and Human Services in order to receive federal or state money but there is still much variation in the quality of care. Do a little background work before committing to any hospice agency; be sure to ask for recommendations from your doctor or other health care professionals as well as other FTD caregivers.

The National Hospice and Palliative Care Organization (NHPCO) offers a searchable database to help you find a hospice provider in your area who is a member of their organization. You can also call the NHPCO HelpLine at 1.800.658.8898 if you have questions or need help finding a hospice agency.

Sources of additional information

Medicare and other federal hospice programs:

A  booklet to download or order describing the Medicare Hospice program.

Website for the Centers for Medicare & Medicaid Services and more detailed information on regulations for Medicare Hospice program

Information on hospice through the Veterans Health Administration

Information for patients and families:

Hospice Net

National Hospice and Palliative Care Organization

Hospice Foundation of America

International Association for Hospice & Palliative Care

Hospice Patients Alliance