Today, one out of three people in the United States choose hospice care when they are dying. Families need to understand hospice care and the steps necessary to access this quality end-of-life option.
What is hospice?
Hospice is a special concept of care designed to provide comfort and support to patients and their families. Patients are referred to hospice when life expectancy is approximately six months or less. Hospice care can continue longer than six months if needed but requires physician certification. Here are some facts about hospice care:
- Hospice is not a place. Most hospice care takes place within the dying person’s home, whether it is his or her own home, the home of a family member or friend, a nursing or assisted living facility. Other options, if available from the provider, include a residential hospice facility or a hospice unit within a hospital.
- Hospice care neither prolongs life nor hastens death. Hospice staff and volunteers offer a specialized knowledge of medical care, including pain management.
- The goal of hospice care is to improve the quality of a patient's last weeks, days and hours by offering comfort and dignity.
- Hospice care is provided by a team-oriented group of specially trained professionals (including as physicians, nurses, social workers, clergy), as well as volunteers and family members.
- Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient's pain and discomfort.
- Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient's family and friends.
- Hospice offers a variety of bereavement and counseling services to families before and after a patient's death.
- Hospice professionals make routine visits to the home, but family and/or friends are nearly always involved in care. Some families choose to hire additional services from private nursing agencies, which are typically not covered by Medicare, Medicaid or private insurance.
- Hospices use trained volunteers to help with household chores and to give family caregivers respite time. For example, a volunteer can give the family caregiver a chance to run errands or simply take a walk or nap.
- If a patient’s condition improves during hospice care or if the patient desires, the patient can discontinue hospice care.
Many hospice professionals believe people who are referred earlier, rather than later, benefit most from hospice care.
What do I do when we decide to use hospice?
Before providing care, hospice staff meets with the patient's personal physician(s) and a hospice physician to discuss patient history, current physical symptoms and life expectancy.
After an initial meeting with physicians, hospice staff meets with both the patient and their family. They discuss the hospice philosophy, available services and expectations.
Prior to service, staff and patients also discuss pain and comfort levels, support systems, financial and insurance resources, medications and equipment needs.
A care plan is developed for the patient. This plan is regularly reviewed and revised according to patient condition.
It is important to know that the patient and family can request a particular hospice or ask for a referral to another hospice serving their geographic area.
In some situations, the patient and family may not have communicated end-of-life concerns with a doctor, but believe the patient would benefit from hospice care. In such a case, it is best to discuss appropriateness of hospice care with the patient’s attending physician and request a referral. Some doctors are uneasy bringing up the subject of hospice care and may not want to be the first to start the conversation.
Families or patients can begin a self-referral process through a hospice if the doctor is unable to discuss hospice, or if there is no attending physician available. In this example, a patient or family should contact a hospice that serves the patient’s geographic area (see www.hospicedirectory.org or call 800.854.3402) describe the situation and medical history and condition, and ask for guidance from the hospice.
There are more than 4,500 hospice programs in the United States.* The majority are certified to provide care under the Medicare benefit, and, in most states, the Medicaid benefit.
The hospice may be based in a county, town or city that is near the patient’s home. It is not uncommon for a hospice’s service area to stretch into adjacent counties. If there is not a hospice located in the town in which you live, there is still an excellent chance that a nearby hospice will be able to serve you or your loved one.
To qualify for hospice admission, a person must be a proper candidate for hospice care. This means that the person is no longer responding to curative treatment options and that the prognosis for life is six months or less if the disease continues its present course.
Doctors use a variety of methods to determine this prognosis, and while medical science is rarely exact, they can generally predict life expectancy by using a number of specially designed evaluations, including the Karnofsky Performance Scale, which measures functions, activities and needs of the patient.
Some common diseases and conditions experienced by hospice patients include: cancer, Alzheimer’s disease, amyotrophic lateral sclerosis, chronic obstructive pulmonary disorder, stroke, lung disease, AIDS, and renal disease, among others. Specific diagnostic tools determine the prognosis associated with each disease and/or condition.
* NHPCO National Data Set, 2006.
Who pays for hospice care?
Hospice care is a covered benefit under Medicare for patients with a prognosis of six months or less. A patient can remain in hospice care beyond six months if a physician re-certifies that the patient is terminally ill.
This benefit covers all services, medications and equipment related to the illness. These include:
Home health aides
Medical appliances, medication, and supplies
Spiritual, dietary, and other counseling
Continuous home-care or inpatient care during crisis periods
Social work services
24/7 On-call Support
Medicare Hospice Benefit ( PDF)
Trying to understand the nuances of rules and regulations can be overwhelming. This is the official government publication for Medicare hospice benefits. Also see the Hospice Payment System Fact Sheet, which provides information on certification requirements, election periods, how rates are set, patient coinsurance, caps on payments, additional required reporting, and FY2010 payment rates.
Almost all states and the District of Columbia offer hospice coverage under Medicaid. Your hospice provider will be able to tell you if you live in a state where the hospice Medicaid benefit exists.
Many private health insurance policies and HMO's offer hospice coverage and benefits.
Hospice services are covered under Tricare, a military service member and family benefit.
There is no mandatory nationwide accreditation for hospices. Many programs are accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) or by the Community Health Accreditation Program (CHAP).