Hospice and Palliative Care Frequently Asked Questions
Question: What is Hospice Care?
Answer: Hospice care is a health service delivery program to help maintain quality of life when a person is faced with a life-limiting illness. Hospice care combines a team of professionals that focuses on an individual's needs and goals and allows that person to approach the end of life with confidence in comfort, peace, and dignity.
The primary goals of hospice care are comfort and quality of life. Hospice care focuses on the patient and the family's individual needs, relieving pain and discomfort, and helping loved ones cope with the emotional, psychological, and spiritual impact of incurable illness, dying, and grief. It acknowledges the fact that every person is unique with their own set of personal beliefs, hopes, and fears. The overall purpose of hospice care is to promote the patient's well-being as long as possible.
Hospice care can provide expertise in comfort care including medications and therapies to relieve pain and symptoms, twenty-four hour support in the form of on-call services, coordination of help and services needed in the home, including volunteer services, and necessary medical equipment such as hospital beds and oxygen.
About half of hospice patients have a cancer diagnosis. Other terminal illnesses include end-stage heart disease, lung disease, dementia, Amyotrophic Lateral Sclerosis (ALS) and others. In the United States, Medicare reimbursement for hospice care requires a statement by a doctor that a patient has a life expectancy of six months or less if the disease runs its natural course. The patient, the family, and a doctor decide together when hospice services should begin.
Question: What is Palliative Care?
Answer:
Palliative comes from the word palliate, which means to ease. Palliative care is also called comfort care, supportive care, and symptom management. Palliative care is the treatment of symptoms or suffering caused by a serious illness that cannot be cured. The care given is to improve the quality of life of these seriously ill patients, alleviate pain, and provide comfort. Sometimes, the care given is to ease the burden of symptoms caused by the disease or other treatments, such as pain, nausea and breathlessness.
Palliative care can take place along with treatments given for various medical conditions, and is appropriate at any stage of a serious illness. Palliative care includes easing psychological, social, and spiritual problems related to the disease or its treatment and helping with physical, spiritual, and emotional worries, stress, feelings of despair, and pain. It provides a calm, caring, and quiet environment geared towards meeting the needs of patients and their families at a critical time in their lives. Many palliative care programs are hospital-based. Palliative care may also help some transition from the journey of life to life’s end.
Question: Can a person have Hospice Care at home?
Answer: Yes, in fact, most hospice care takes place in the home, even though there are hospice centers, hospitals, nursing homes, and other long-term care facilities that provide hospice care programs. Caring for a person at home, who has a serious medical illness, demands patience and compassion. Usually, a family member or close friend will assume the majority of the responsibility in providing the care at home and serve as primary caregiver. Hospice staff will meet regularly with family to evaluate needs and provide any services necessary, such as:
- Teach family to care for loved one as much as is realistically possible
- Set up hospice staff visits to the home
- Order necessary equipment and supplies, and ensure that they arrive promptly
- Explain how pain and other symptoms will be controlled
- Answer calls and urgent questions at any time of the day and night
- Include family in planning care
- Arrange for spiritual support, if requested
- Arrange for brief stays in a hospital or nursing home or respite care if family caregivers need time away from their responsibilities at home
- Explain to family what is likely to happen upon death
- Work with family to prepare advanced directives, if requested
- Offer grief support to help family adjust to life changes after death
Question: Why is Hospice and Palliative Care an issue in rural areas?
Answer: Not all areas of rural America have hospice programs available. For those rural areas that do have this service, there are numerous challenges.
• Lack of family caregivers. Hospice care is based on the idea that individuals who want to remain in their homes have either family or informal caregivers. In many rural areas, the children and younger caregivers have moved to larger, urban areas.
• Financial hardships. Under the Hospice Medicare Benefit, programs must provide an array of services under a per diem mechanism. A low volume of patients creates financial hardships in spreading the risk of high-cost patients.
• Lack of qualified staff. Rural areas face an increasing health workforce shortage, including nurses. Hospice licensure requires specially trained interdisciplinary professional staff and 24/7 coverage. Small hospice programs have difficulty finding qualified personnel to share the 24/7 burden. Rural areas may not have funding for palliative training, especially for nurses.
• Increased expenses due to greater travel, more expensive telecommunications systems and inability to cost share through purchasing cooperatives.
• Reimbursement for rural hospices, such as Medicare, does not take into consideration some of the higher costs of providing services in a rural community.
• Lack of grief and bereavement resources for those who live in rural areas.
Question: How do I find Hospice and Palliative Care in my area?
Answer:
A patient's doctor will be able to assist in locating services in the area. Hospice care providers also are listed in the telephone directory. Your community may also have information and referral services available through agencies such as the American Cancer Society, a local United Way chapter, the Visiting Nurse Association, or a place of worship. Also, your state health department oversees certification of hospice services and would be a good resource.
The National Hospice and Palliative Care Organization provides its members a searchable database for hospice and palliative care programs.
The Hospice Foundation of America has a searchable hospice directory, as well as a list of state hospice organizations.
The American Cancer Society provides a searchable website to locate local offices in your area. These offices may help you locate hospice services.
Question: Who pays for Hospice Care and what is the Medicare Hospice Benefit?
Answer: Hospice care is paid for in a variety of ways.
Charity Care - Under the Medicare law, no person may be refused hospice care due to the inability to pay. Each hospice has staff who can answer questions about receiving financial assistance. Donations, gifts, grants or other community sources help cover the costs of care for those who can't pay.
Medicare - The cost of hospice care, whether at home or as an inpatient, is covered as a benefit under Medicare Hospital Insurance Part A. The Medicare Hospice Benefit entitles all Medicare beneficiaries to the benefits of hospice care. A doctor must determine that a patient has a limited life expectancy of six months or less if the condition runs its natural course to be eligible for the Hospice Benefit, and the patient will be required to sign a statement choosing hospice care instead of the standard Medicare benefits for a terminal illness. If a patient lives longer than six months, a physician may request continued hospice care and that Medicare continue. Under Medicare, hospice is primarily delivered in the home setting by a Medicare-approved hospice provider and covers the following:
- Services provided by the doctors
- Nursing visits to the home with 24-hour on-call services
- Medical appliances and supplies related to the terminal illness
- Medications for symptom management and pain relief
- Short-term, acute care either in a hospital or nursing home, including respite care. Inpatient respite care is provided to give family caregivers temporary relief and is limited to a stay of five days or less.
- Home health aide and homemaker services
- Physical therapy, occupational therapy, speech and language therapy, and medical social services
- Supportive counseling
- Spiritual support and counseling
- Nutritional counseling
- Bereavement support for your family
Medicare does not cover the following:
- Treatment for the terminal illness that is not for pain control and other symptom management
- Care given by another health-care provider that was not arranged through the hospice program
- Care given by another health-care provider that duplicates care the Medicare-approved hospice provider is required to provide
The toll-free telephone number for Medicare is 1-800-MEDICARE (1-800-633-4227); deaf and hard of hearing callers with TTY equipment may call 1-877-486-2048.
Medicaid - As of 2006, 45 states offer hospice care as a covered Medicaid benefit, although there may be some variations in certain states. For further information on Medicaid benefits, see the Centers for Medicare & Medicaid Services website. In addition, the Kaiser Foundation provides state information on Medicaid benefits by service for hospice care.
Private insurance - Most insurance plans and many managed care plans offer a hospice benefit. In most cases, the coverage is similar to the Medicare benefit, although there may be some variations between employers.
Private Pay. If insurance coverage is unavailable or insufficient, the patient and the patient’s family can discuss private pay and payment plans.
Veterans - If you are a U.S. Veteran, hospice and palliative care are covered services, authorized in VA’s Medical Benefits Package, on an equal priority with any other medical service. VA medical centers must provide or purchase hospice care when VA determines that an enrolled veteran needs it. They must also provide palliative care services through consultation teams that include a physician, nurse, social worker, and chaplain. TRICARE is the health benefits program for military personnel and retirees. Hospice is a fully covered benefit under TRICARE. Only Medicare-certified hospices can provide for the TRICARE hospice benefit, so it is important that patients and family locate a qualified hospice agency.
The Hospice-Veteran Partnership Toolkit points out that hospice care is part of the basic eligibility package for veterans enrolled in the
Veterans Health Administration. If hospice care is appropriate for enrolled
veterans, and other funding is not available, VA medical centers will either provide
hospice care directly in their facilities or purchase it from community hospice
agencies.
All Medicare-eligible veterans, whether or not they are enrolled in VHA, have access
to hospice care through Medicare. Veterans not eligible for Medicare may have
hospice benefits through Medicaid or other private insurance. Please see that publication for further information.
For further information, contact the U. S. Department of Veterans Affairs Office of Geriatrics and Extended Care. Also, see the publications VA Transforms End-of-Life Care for Veterans, and Veterans Benefit Administration Fact Sheets.
Question: Who makes up a Hospice team?
Answer: Hospice requires input from family and loved ones, as well as a variety of medical, nursing, and allied health professionals. The goal is to develop a plan of care tailored to meet the patient's needs. This interdisciplinary hospice team may consist of:
- A doctor, who serves as the medical director
- Nurses who provide direct care and case management
- Home health aides, including bath aides, to assist with basic needs
- Social workers
- Chaplains and pastoral care counselors
- Physical, occupational, and rehabilitation therapists
- Dietitians
- Trained hospice volunteers
- Bereavement counselors
- Your primary care doctor and/or oncologist
Question: What should a person look for when choosing Hospice care?
Answer: There are many factors to consider when choosing hospice care. It is important to find out what services a hospice offers. Those who can assist in choosing hospice care include physicians, nurses, social workers, clergy, friends, and family.
Issues to consider when choosing hospice care, whether that care is in a hospital, in a free standing facility, or with a home health agency are:
- What services will be provided?
- How will pain be managed?
- How will family members be involved in day-to-day care?
- What services are provided to help with the emotional and spiritual aspects of death and dying?
- Who can my family members call if they have any questions, and what are the phone numbers? Does the home care or hospice have a 24-hour telephone number you can call when you have questions or complaints?
- Can family and friends visit at any time?
- What kind of support is available to the family/caregiver?
- If a facility, how long has it been in business and is it accredited?
- How often is medical equipment checked? Are replacements included?
- Does it offer services for children?
- Is payment accepted from Medicare and Medicaid? Is there a list of fees and services? Can a family member get assistance in finding financial help if needed?
- How are staff trained and managed? Does a supervisor come to the patient’s home to review the care being given? Are the home care workers licensed and bonded?
- If a facility, is it prepared in case of an emergency like a power failure or a natural disaster? Will it still be able to deliver the services you need?
- How does a patient’s treatment remain confidential?
Credits
Thanks goes to:
Michelle Casey, Deputy Director and Senior Research Fellow
Rural Health Research Center
University of Minnesota
Last revised 01/08/2010
