Hospice provides support and assistance for terminally ill patients and their families who would like the focus of their care to be on Comfort and the Quality of Life rather than on prolonging life by any means available. Terminal illness is usually defined as a condition that will result in the patient’s death within a six month period of time. However, since some individuals survive longer than expected, hospice can continue to support the patient and family beyond six months as long as the patient remains terminally ill.
The hospice team is composed of a nurse, social worker, aides, volunteers, and clergy. The team helps hospice patients and their families identify needs and form a plan of care to meet those needs. As a patient’s condition changes the plan is care is constantly adjusted to meet those changes. Hospice will arrange for any medical equipment, including oxygen, which a patient needs. While hospice provides support and assistance, they cannot routinely supply 24/7 assistance. Hospice patients need primary caregivers from family, friends, or private duty help, or any combination of these; hospice services supplement these primary caregivers.
Hospice care is normally provided in someone’s home, but, when this is not possible, it can also be provided in personal care homes, assisted living residences and nursing homes. If the patient becomes bed confined in a personal care home or an assisted living residence, there may be a need for family, friends, or private duty help to fill in gaps between what the staff at the facility can provide and what hospice can provide. Since a nursing facility is staffed 24/7, there is no need in this setting for private duty help, unless the patient or family desire one-on-one assistance.
Hospice is covered by Medicare and many other insurers. The one exception under Medicare is that if the patient is in a skilled nursing facility and Medicare is paying for the nursing facility, Medicare will not pay for hospice in the nursing facility until it stops paying for the nursing facility.
Because calls to 911 initiate the “prolong life by any means available” system, hospice agencies ask patients and their caregivers to call the hospice agency with any questions about care. Hospice agencies have nurses who are on-call after hours and on weekends to help insure that the patient’s comfort and his or her quality of life needs are maintained. Hospice agencies recognize that a family’s needs do not stop after the death of their loved one. These agencies provide bereavement care to the family following the patient’s death. In our society many people find it difficult to talk with grieving family members about the death of their loved one; this can leave the family feeling isolated in their grief. With bereavement follow up, the family has support during the grieving process, and they have help learning to live with the loss of their loved one.
The focus of palliative care is to assist patients and their families manage the care of serious illnesses. The goal is to improve the quality of life for people with serious illnesses by helping with pain and symptom management, improving communication between the patient, family, and medical team, and making sure the care is coordinated. Palliative care is a relatively new area of medical practice. Many hospitals offer palliative care consultations, but it is more difficult to find in the community. If the individual’s primary difficulty is pain control, he or she may find assistance in the community at a pain management center. Some hospice care agencies have palliative care programs for people who feel they are benefiting from life-prolonging treatment and who do not want treatment stopped in order to receive hospice care. The hospice agency will then transition these individuals to hospice care if and when it is appropriate.