What is Hospice?
The History of Hospice
The term “hospice” originated in the middle ages to signify “havens” where weary travelers could find hospitality and care. Although the term may have first been applied to care of the terminally ill in Ireland in the late 1800’s, credit for founding the modern hospice movement is generally given to Cicely Saunders, a nurse, social worker, and physician who was instrumental in opening St. Christopher’s Hospice, the first modern day, free-standing hospice of our time.
Although originally trained as a nurse in a traditional medical setting focusing primarily on cures and prolongation of life, Saunders believed what mattered most at the end of life was pain control, dignity in dying, and help addressing the psychological and spiritual pain of death itself. As a result, she emphasized the need for effective symptom control, care of the patient and family as a unit, and the development of a multidisciplinary team approach utilizing volunteers, a continuum of care which included the home setting, and follow-up with family members after the patient’s death.
The first hospice in America, the Connecticut Hospice, was opened with Dr. Sylvia Lack, who had trained at St. Christopher’s Hospice under Dr. Saunders. Funded in part by the National Cancer Institute, it was originally home-care based, but later expanded to include a free-standing, in-patient facility. It purposely chose not to incorporate with other medical facilities, and in many ways held itself out in opposition to established medical care, positioning itself as a direct rebuke to the way pain was managed in conventional settings.
The Hospice Philosophy
Hospice philosophy is said to be based on three principles: openness of mind, friendship of the heart, and freedom of spirit to listen to patients “as they search for the meaning of their own lives.” The latter is said to require an affirmation to patients that regardless of their sex, race, lifestyle, religion, or disease, hospice treats them holistically and exercises great compassion to alleviate their suffering.
These principles are based on several concepts:
- Death is a natural part of the life cycle. When death is inevitable, hospice will not seek to hasten or postpone it.
- Pain relief and symptom control are clinical goals.
- Psychological and spiritual pain are as significant as physical pain, and addressing all three requires the skills and approach of an interdisciplinary team.
- Patients, their families, and loved ones are the unit of care.
- Bereavement care is critical to supporting surviving family members and friends.
- Care is provided regardless of ability to pay.
Myths and Facts About Hospice Care
MYTH: Hospice means giving up hope.
FACT: Hospice can help redefine hope for patients and their loved ones. Hospice caregivers recognize the importance of hope as a powerful, ever-changing force that continues throughout the time of living and process of dying. Hospice offers hope that a secure, familiar care setting can be enjoyed; hope for freedom from fears of isolation, abandonment, loneliness, loss of control and physical pain; and hope that the family will be nurtured and supported through comprehensive counseling services during their loved one’s end of life journey and after their death.
MYTH: Hospice care hastens death.
FACT: Hospice care does not hasten death. It provides comfort and the best quality of life from diagnosis of an advanced illness until the end of life. Partners In Care provides a number of services well in advance of a terminal diagnosis, including palliative care consults, designed to manage symptoms even while seeking curative treatments.
MYTH: Hospice is a place, so you must leave home to receive hospice care.
FACT: Hospice is a philosophy of care for people who are living with a serious or life-limiting illness. Care is provided in the patient’s home or wherever the patient resides, including residential, skilled nursing, and assisted living facilities. Partners In Care also operates Hospice House where people can receive in-patient care when their needs exceed the ability to care for them at home, or simply to provide respite for a spouse or family.
MYTH: Hospice is only for cancer patients.
FACT: Hospice care is available to individuals with advanced illnesses including end-stage heart and lung disease, cancer, ALS, Alzheimer’s Disease, and more. Hospice care also supports the patient’s family members and loved ones of all ages during the illness and through grief and loss. Partners In Care specializes in these services, including the sought-after bereavement camp for kids, “Camp Courage.”
MYTH: Hospice is only focused on the patient and pain control.
FACT: Although hospice care is designed to care for the patient by providing expert pain management and symptom control, it also offers emotional and spiritual support delivered by an interdisciplinary hospice team including a nurse, social worker, chaplain, home health aide, and other professionals and trained volunteers. Emotional and spiritual support is also provided to the patient’s loved ones.
MYTH: Hospice is expensive.
FACT: Hospice care is a cost-effective and valuable healthcare resource for individuals with a life-limiting illness. Most insurance providers, including Medicare and Medicaid, cover the cost of hospice care, which is often tremendously less than the cost of hospital care.
MYTH: You can’t keep your own doctor with hospice.
FACT: Patients can keep their primary physician while receiving hospice care. Most hospices establish working relationships with a wide base of referring physicians so that patients can keep their own doctors upon admission to hospice care.
MYTH: All hospice care is the same.
FACT: Even in the same community, hospice programs can differ greatly in the services and treatments offered to patients and families. Since 1979, Partners In Care has gained the community’s trust as the leading, most respected hospice and palliative care provider in the region, and is also the oldest and most experienced nonprofit hospice program. Partners In Care continues to offer comprehensive hospice and palliative care services for adults and children in Central Oregon, regardless of one’s ability to pay.
MYTH: Medicare provides only six months of hospice care.
FACT: Medicare law does not time-limit the hospice benefit. Patients have access to the Medicare Hospice Benefit as long as the patient’s physician and the hospice medical director certify that the patient’s illness is still considered “terminal,” with an estimated life expectancy of six months or less.
MYTH: We need to protect children from being exposed to death and dying.
FACT: Allowing children to talk about the death of a pet, classmate, neighbor, or family member can help them understand and cope with their grief. And it can help them develop healthy attitudes that can benefit them as adults. Partners In Care staff include licensed medical social workers and specially trained grief counselors in their work with children. Their popular Camp Courage and My Friend’s House programs use a variety of tools and activities, including art and pet therapy, to help children with their grief and loss.