Approximately 400,000 volunteers contribute their time, energy and love to hospice, equaling over 18 million donated hours per year.
Source: National Hospice and Palliative Care Organization, 2003
What is hospice?Hospice represents a compassionate approach to end-of-life care. Although death is a natural part of life, the thought of dying still terrifies many people. You may imagine pain and loneliness, spending your final days in a cold, sterile environment far from family, friends and all you know and love. However, hospice care can transform your passage into a peaceful, healing transition.
According to The American Cancer Society, the word hospice is "rooted in the centuries-old idea of offering a place of shelter and rest, or 'hospitality' to weary and sick travelers on a long journey. Dame Cicely Saunders at St. Christopher's Hospice in London first applied the term 'hospice' to specialized care for dying patients in 1967."
Hospice has been available in the United States since the mid-1970s. The National Hospice and Palliative Care Organization (NHPCO) estimates that there were 3,300 operational U.S. hospice programs as of 2003.
Hospice is more a concept of care than a specific place. It is an option for people whose life expectancy is six months or less, and involves palliative care (pain and symptom relief) rather than ongoing curative measures, enabling you to live your end days to the fullest, with purpose, dignity, grace and support.
Hospice care focuses on all aspects of your life and well-being: physical, social, emotional, and spiritual. What's more, there is no age restriction; anyone in the last stages of life is eligible for hospice services.
While some hospitals, nursing homes and other health care facilities provide hospice care onsite, hospice most often takes place in the comfort of your own home, allowing you to remain in familiar surroundings as you prepare for a meaningful life conclusion.
Because many people in the final stages of an illness will need assistance in researching hospice resources, the following information is presented with the understanding that it is inclusive of the hospice care recipient, spouses, partners, family members, and close friends.
What services are provided?
Hospice services are interdisciplinary, and will be structured according to your needs, which may change over time. The Hospice Association of America (HAA) suggests a hospice team may include any combination of the following services:
Nursing Care. Registered nurses monitor your symptoms and medication, and help educate both you and your family about what's happening. The nurse is also the link between you, your family, and the physician.
Social Services. A social worker counsels and advises you and family members, and acts as your community advocate, making sure you have access to the resources you need.
Physician Services. Your doctor approves the plan of care and works with the hospice team. In a full hospice program, a hospice medical director is available to the attending physician, patient, and hospice care team as a consultant and resource.
Spiritual Support and Counseling. Clergy and other spiritual counselors are available to visit you and provide spiritual support at home. Spiritual care is a personal process, and may include helping you explore what death means to you, resolving "unfinished business," saying goodbye to loved ones, and performing a specific religious ceremony or ritual.
Home Health Aides and Homemaker Services. Home health aides provide personal care such as bathing, shaving, and nail care. Homemakers may be available for light housekeeping and meal preparation.
Trained Volunteer Support. Caring volunteers have long been the backbone of hospice. They're available to listen, offer you and your family compassionate support, and assist with everyday tasks such as shopping, babysitting, and carpooling.
Physical, Occupational, and Speech Therapies. These hospice specialists can help you develop new ways to perform tasks that may have become difficult due to illness, such as walking, dressing, or feeding yourself.
Respite Care.Respite care gives your family a break from the intensity of caregiving. Your brief inpatient stay in a hospice facility provides a "breather" for caregivers. Refer to Helpguide's Respite Care for additional information.
Inpatient Care . By the same token, even if you are being cared for at home, there may be times when you'll need to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. Sometimes medical intervention will be recommended to ease the dying process (for example, an IV drip with pain medication), requiring round-the-clock nursing care. Thus, a facility may be a better choice. Your hospice team will arrange for inpatient care, and remain involved in your treatment and with your family.
Bereavement Support . Bereavement is the time of mourning we all experience following a loss. The hospice care team will work with surviving family members to help them through the grieving process. Support may include a trained volunteer or counselor visiting your family at specific periods during the first year, as well as phone calls, letters and support groups. The hospice will refer survivors to medical or other professional care if necessary.
Who is eligible for hospice care?
If your doctor has certified your prognosis as not longer than six months, you are eligible for hospice. This applies to anyone of any age. Of course, if your health improves and you no longer need hospice care, that's a blessing! You will remain eligible to reapply for hospice care if it again becomes necessary.
You are permitted to go on and off hospice care as needed—or if you change your mind and decide to return to curative treatment. You may also enter the hospital for certain types of treatment, as long as the intervention is not related to your hospice diagnosis, and if the treatment involves improving your quality of life.
While the majority of hospice referrals are cancer related, hospice is by no means exclusively for cancer patients. People with ALS, kidney disease and Alzheimer's disease, for example, can also benefit greatly from hospice care. Alzheimer's disease, in particular, is often overlooked for hospice referral because of its slow progression. People with Alzheimer's are usually referred to hospice when they are in the final stages of the illness, which can be very helpful to family members even if the person can no longer communicate.
You can receive hospice care in a nursing home if the nursing home agrees to allow the hospice staff to provide the primary care. Hospice pays for all of the medications and equipment needed in the nursing home. If you're in a Board and Care facility, the B&C must obtain a waiver from licensing to have someone from hospice at the facility. (Refer to next section for licensing information.)
Can I afford hospice services?
You may be surprised to learn that hospice care generally costs less than inpatient care in a hospital, nursing home or other facility. This is because with home hospice, you pay only for the specific care that you need. In addition, volunteers may be able to provide many services at little or no cost, such as telephone support, friendly visits, meal preparation and running errands.
Medicare, Medicaid, and most private insurance plans cover hospice services. Medicare regulations require that your hospice care be provided at home, with only short stays in an inpatient facility.
According to the HAA, in order to qualify for the Medicare hospice benefit:
Your physician must re-certify you at the beginning of each benefit period (two periods of 90 days each, one of 30 days, and an indefinite fourth period).
You must sign an elective statement indicating that you understand the nature of your illness or condition, and of hospice care. By signing the statement, you surrender your right to other Medicare benefits related to your illness. (A family member may sign the election statement for you if you are unable to do so.)
While patients usually pay out-of-pocket for any services not covered by insurance (known as a co-payment), hospice services are generally provided without charge if you have limited or nonexistent financial resources. If you are unable to pay, most hospices will provide for you using funds raised from community donations and charitable foundations.
How do I locate a reputable hospice service?
Ask your doctor what hospice programs are available in your community.
Contact your hospital's social worker, discharge planner, or a care manager, any of whom should be able to recommend local hospice providers and facilities.
Check your local Yellow Pages.
Consult with friends who have used hospice services in the past.
Visit the Hospice and Palliative Care searchable database to locate hospice providers nationwide.
Once you've compiled a list of potential hospice resources, contact them and ask:
Are you certified? Medicare requires certification for payment eligibility, and in some states, so does Medicaid. State health departments certify hospices.
Are you licensed? Licensing requirements vary by state, and again, are generally overseen by the state health department.
Are you bonded? A hospice agency with bonded employees offers you the equivalent of insurance protection against any potential legal problems.
Tips for selecting hospice care providers
People are sometimes reluctant to question doctors or other medical professionals about their care. Yet what is more important than the quality of care you will receive during this final phase of life? When you and your family are choosing your hospice team, be sure to ask about:
The hospice's patient-to-caregiver ratios for each hospice discipline,
Average frequency of home hospice visits,
Response time and procedures followed for after-hours questions and concerns,
Continuity of care (i.e., having the same care providers over time).
Also, ask whether the hospice will develop a written treatment plan that is given to all service providers for smooth coordination of care. You and your family members should receive copies of the care plan as well, listing specific duties, work days and hours, and the contact information for the hospice care supervisor. See references & resources for more specific questions to ask when choosing a hospice program.
Visit Helpguide.org for more information
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