You or your loved one has been struggling with a serious illness for some time now. You may have been told that it’s time to consider hospice because this illness is no longer being cured or stopped by treatment. There are many myths and misunderstandings about what hospice is and does. Here are a few of the most common questions, with answers that may help you get a better understanding of hospice and how it can benefit your family: |
What is hospice?
Hospice is a system of care for a person who has been told they have a life-limiting illness. Of course, we know we will all die someday, but in this case, the person is not expected to get better from their illness. The purpose of hospice is not on curing the disease. The purpose is to provide the highest quality of life for whatever time the person has left. Hospice recognizes that the needs of the dying are different from those who expect to recover. Hospice also understands that caring for those who love and take care of the patient is a part of caring for the patient. It is very personalized service, providing physical, emotional and spiritual care for the person and their family wherever they live, whether in their own private home, a skilled nursing facility or an assisted living residence.
When and where did hospice start?
The word “hospice” was used in medieval times. It is from the Latin root meaning to take in a guest or stranger. A hospice was a hospitality stop along the roads of Europe where the monks and nuns would provide shelter and food to weary travelers. The modern hospice movement adopted the term because it gives people comfort and support on their final journey in life.
During World War II, a nursing nun named Cecily Saunders was distressed by the care that dying soldiers were receiving. After the War, she became a medical social worker on the wards for the dying in the hospitals of Great Britain. Here, she was touched by a patient who left her £500 and asked her to find people a better way to die. She entered medical school and Dame Cecily Saunders went on to become a pioneer in pain management and the care of the dying. In 1967, she founded the first modern hospice, St. Christopher’s, in London. Dr. Saunders was known to say, "We do not have to cure to heal." She continued her work until the age of 87, when she herself died in St. Christopher’s.
Hospice came across the ocean to the United States due to the work of another pioneer in nursing, Frances Ward, who studied at St. Christopher’s. She started the first U.S. Hospice in New Haven, Connecticut in 1972. In 1976, the fourth oldest hospice in the country was started in Central Florida. At this stage, hospices were run by volunteers and funded by donations. In 1981, Congress recognized the value of hospice care and established Medicare coverage with the Medicare Hospice Benefit. Today, most states, including Florida, provide hospice Medicaid benefits, and almost all private insurances pay for hospice care as well. In the U.S., hospice services are usually provided in the home. Many hospices have inpatient facilities as well.
Today, the National Hospice and Palliative Care Organization (NHPCO) reports that there are over 4500 hospices in the United States. They care for over 1.3 million dying persons every year. NHPCO estimates that approximately 36% of all people who died in the United States in 2006 were under the care of a hospice program.
How do we pay for hospice care?
Hospice services are covered by Medicaid, Medicare, Blue Cross/Blue Shield and most private insurance plans and other managed care systems. Some hospices charge patients without insurance on a sliding scale, but many hospices never turn away a patient who cannot pay. Hospice is a covered benefit under Medicare for people who have a life expectancy of six months or less. Most policies cover all costs of hospice care.
What services does hospice provide?
Although there are some higher levels of hospice care when the person’s condition requires it, basic hospice care generally includes the following:
• Care directed by a doctor who has training in providing hospice and end-of-life care — your loved one's primary physician remains in control, with assistance from the hospice care team
• Regular visits to the home by nurses who have training in hospice care, as well as 24-hour, on-call nursing support
• Help with daily needs, such as bathing
• If wanted, visits from a chaplain
• Counseling services, both for the person in hospice and for the family members
• Social services support
• Respite care
• Medical equipment — such as hospital beds, bedside commodes, wheelchairs, oxygen — and medical supplies
• Medications to help control pain and symptoms
• Bereavement care for the family following the death
• Access to other therapies, such as physical, occupational, speech and dietary therapies, as needed depending on your loved one's condition
Will someone be at my house 24 hours a day?
There will not usually be someone at your home 24 hours a day. Different members of the hospice team visit during the week and are available to come out to see the patient as needed 24 hours/day, 7 days /week. Under the Medicare Hospice benefit there are 4 levels of care that are provided based on the patient’s needs and condition. Most people are on the Routine level of care which provides all of the services listed in the previous answer. If a caregiver is ill or needs to get out of town for a short period, the person can receive Respite care, usually in a nursing home setting for up to 5 days. During periods of increasing symptoms, uncontrolled pain, need for intensive caregiver teaching or sudden caregiver breakdown, the person may receive either Continuous care in their home setting or General Inpatient Care in a hospital, nursing home or inpatient hospice.
Article contributed by Hospice of the Comforter.
