Hospice, in the earliest days, was a concept rooted in the centuries-old idea of offering a place of shelter and rest, or “hospitality” to weary and sick travelers on a long journey. Dame Cicely Saunders at St. Christopher’s Hospice in London first applied the term “hospice” to specialized care for dying patients in 1967.
Today, hospice care provides humane and compassionate care for people during final phases of an incurable disease so that a person may live a full and comfortable life as possible.
Hospice is a philosophy of care. The hospice philosophy recognizes death as the final stage of life and seeks to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones.
Hospice affirms life and does not hasten or postpone death. Hospice care treats the person rather than the disease; it highlights quality rather than length of life. It provides family-centered care involving the patient and family in making decisions.
Hospice care is appropriate when you can no longer benefit from curative treatment and your life expectancy is about 6 months. But it is important to understand that your symptoms are managed and any clinical problem that is treatable will be treated. You will simply choose to no longer aggressively treat your specific terminal issue. You, your family, and your doctor decide together when hospice services should begin.
One of the problems with beginning hospice is that it is often not started soon enough. Sometimes the doctor, patient or family member will resist trying hospice because he or she feels it sends a message of no hope. This is not true. If your condition improves or the disease goes into remission, you can be discharged from the hospice program and return to active cancer treatment, if desired. Hospice care may be resumed at a later time. The hope that hospice brings is the hope of a quality life, day -to-day, during the stage of advanced illness.
The interdisciplinary health care team of doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers care for you, offering support based on their particular areas of expertise. Together, they provide comprehensive palliative care aimed at relieving symptoms and giving social, emotional, and spiritual support.
Pain and symptom control:
The objective of pain and symptom control is to help you to achieve comfort while allowing you to remain in control of your life. This means that side effects are managed to ensure that you are as free of pain and symptoms as possible, yet still alert enough to make important decisions.
Hospice care emphasizes the spiritual needs of you and your family. Since people differ in their spiritual needs and religious beliefs, spiritual care is individualized to meet your and your family’s needs and may include helping you to look at what death means to you, to say good-bye, or to perform a specific religious ceremony or ritual.
Home care and inpatient care:
Although hospice care can be centered in the home, it may be necessary to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. The hospice can arrange for inpatient care and will stay involved in your treatment, resuming in-home care when appropriate.
While you are in hospice, your family and caregivers may need some time away from the intensity of care-giving. Hospice service offers them a break through respite care, which is provided in 5-day periods. You will be cared for either in the hospice facility or in contracted beds in nursing homes or hospitals. Families can plan a mini-vacation, attend special events, or simply get much-needed rest and recreation at home while you are cared for in an inpatient setting.
Through regularly scheduled family conferences, often facilitated by the hospice nurse or social worker, family members can stay informed about your condition and what to expect. Family conferences also provide a chance to share feelings, talk about expectations, and learn about death and the process of dying. Family members can find great support and stress relief through family conferences.
Bereavement is the time of mourning following a loss. The hospice care team works with surviving family members to help them through the grieving process. A trained volunteer, clergy member, or professional counselor provides support to survivors through visits, phone calls, and/or letter contact, as well as through support groups. The hospice team can refer family members and care-giving friends to other medical or professional care if necessary. Bereavement services are often provided for at least a year to 13 months after the patient’s death.
Hospice volunteers play an important role in planning and giving hospice care in the United States. Volunteers may be health professionals or lay people who provide services ranging from hands-on care to working in the hospice office or fundraising.
Hospice care involves staff who are empathetic, good communicators and listeners, and who are interested in working with people who have life-threatening illnesses. Yet because the work can be emotionally draining, it is essential that support is available to help staff deal with the work-related stress that they may experience. Ongoing education about the dying process is also an important part of staff support.
Coordination of care:
The interdisciplinary team coordinates and supervises all care 7 days a week, 24 hours a day. This team is responsible for communicating between the inpatient facility, the home care agency, the physician, and other community professionals, such as pharmacists, clergy, and funeral directors.
The agency may use your health information, information that constitutes protected health information as defined in the Privacy Rule of the Administrative Simplification provisions of the Health Insurance Portability and Accountability Act of 1996, for purposes of providing you treatment, obtaining payment for your care, and conducting health care operations. The agency has established policies to guard against unnecessary disclosure of your health information.