Care designed to give supportive care to people in the final phase of a terminal illness and focus on comfort and quality of life, rather than cure. The goal is to enable patients to be comfortable and free of pain, so that they live each day as fully as possible. Aggressive methods of pain control may be used. Hospice programs generally are home-based, but they sometimes provide services away from home -in freestanding facilities, in nursing homes, or within hospitals. The philosophy of hospice is to provide support for the patient's emotional, social, and spiritual needs as well as medical symptoms as part of treating the whole person.
A specialized area of healthcare that focuses on relieving and preventing the suffering of patients. The goals of palliative treatment are concrete: relief from suffering, treatment of pain and other distressing symptoms, psychological and spiritual care, a support system to help the individual live as actively as possible, and a support system to sustain and rehabilitate the individual’s family.
Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home.
Respite programs provide planned short-term and time-limited breaks for families and other unpaid care givers. Respite also provides a positive experience for the person receiving care. The term "short break" is used in some countries to describe respite care.
General Inpatient Care
General inpatient care is an intensive level of care, which is provided at the Hospice House. General inpatient criteria is for patients who are experiencing severe symptoms which require daily interventions from the hospice team to manage. Often, patients on this level of care have begun the "active phase" of dying; when their prognosis is measured in days as opposed to weeks or months. Although there is a limit to how long Medicare will cover this level of care, it is usually provided for brief periods of time, with five to seven days being the average.
Routine Home Care
Routine home care is the most common level of care provided. In spite of its title, routine home care does not indicate a location of care, but a level (or intensity) of care provided. Routine care may be provided at a nursing home or assisted living facility, although the majority of hospice patients are treated at home. Interdisciplinary team members supply a variety of services during routine home care, including offering necessary supplies, such as durable medical equipment, medications related to the hospice diagnosis and incidentals like diapers, bed pads, and gloves. Twenty-four hour on-call services must be available as needed. Typically, this is provided after normal business hours by a registered nurse prepared to address urgent patient concerns.
The core team includes the hospice medical director, physician(s), a registered nurse, social worker and counselor. Some of the ancillary team members include a home health aide, a pharmacist and volunteers.
• Hospice Medical Director: The hospice medical director, a physician, often provides the most support to the clinical staff providing care to the patient and family. The medical director may also provide medical care if the primary physician is unavailable. The hospice medical director is also required under Medicare to re-certify patients.
• Physician: Physicians involved in patient care may include the primary physician, who can provide valuable information about patient medical history, and physicians connected to the hospice team. These primarily provide support to other hospice team members, but may also treat the patient directly. The physician sub-specialty of “Hospice and Palliative Medicine” was established in 2006 to provide expertise in the care of patients with life-limiting, advanced disease and catastrophic injury; the relief of distressing symptoms; the coordination of interdisciplinary patient and family-centered care in diverse settings; the use of specialized care systems including hospice; the management of the imminently dying patient; and legal and ethical decision making in end-of-life care.
• Registered Nurses: Registered nurses are responsible for coordinating all aspects of the patient's care and insuring symptoms (physical or otherwise) are being addressed and managed. The primary care nurse visits weekly, and the content of the visit can vary greatly. When patients are experiencing few symptoms and/or are early in their diseases, the RN visit may just be a short check up. If a patient's symptoms worsen, the nurse will visit more often, make recommendations for increasing or changing the medication intervention and provide support and education regarding the disease/dying process. Many patients on hospice may require complex treatments: respiratory care, wound care or even IV therapy at home. In most cases, the hospice nurse is trained to handle these unique needs as well.
• Social Workers: Every patient is assigned a social worker who visits at the time of admission to hospice. The social worker function can vary from providing superficial support to patients and families to intensive crisis-oriented counseling. Additionally, with a terminal illness often comes more complicated financial stressors; the social worker can be instrumental in connecting the patient and family with community resources. Lastly, if a patient is unable to be cared for at home, the social worker will work to find a safer place for the patient to receive hospice care.
• Counselor: Counselors are required as part of the core team by Medicare regulations. Typically, the role is filled by a chaplain, but social workers or other persons, sometimes specially trained, may also serve. While not every patient will see a chaplain on hospice, all hospices have to be able to provide regular and consistent chaplain services. The chaplain is available to provide spiritually supportive counseling, life review and may connect a patient with clergy they are comfortable with. Many times, the hospice chaplain will officiate at a patient’s funeral.
• Hospice Aide: The hospice aide is not a core service for a hospice patient; this means it is not required that every patient on hospice receive an aide. However, most patients do receive this service, and it is often the one most depended on by the patient and family. The hospice aide typically has regularly scheduled visits for approximately l-2 hours at each visit. His or her functions include providing a break to the primary caregiver and physical support to the patient, including bathing, dressing, or feeding. Many times it is the hospice aide who develops the closest relationship with the patient, due to the frequency of visits. The hospice aide is not a licensed nurse and therefore cannot administer medications, treat wounds, handle IV's or similar treatments.
• Volunteers: Volunteers form a major part of hospice care in the United States and may provide a variety of physical or emotional comforts to patients and family, including providing housework, health care, spiritual counseling, and companionship. Hospice volunteers also provide administrative assistance to hospices.
Hospice and Palliative Care:
• provides relief from pain, shortness of breath, nausea, and other distressing symptoms
• affirms life and regards dying as a normal process
• intends neither to hasten nor to postpone death
• integrates the psychological and spiritual aspects of patient care
• offers a support system to help patients live as actively as possible
• offers a support system to help the family cope
• uses a team approach to address the needs of patients and their families
• will enhance quality of life