What is hospice care?
In its earliest days, the concept of hospice was 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. In 1967, Dame Cicely Saunders at St. Christopher’s Hospice in London first used the term “hospice” to describe specialized care for dying patients. Today, hospice care providers humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.
Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their days as alert and pain free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered and it includes the patient and family in making decisions.
This care is planned to cover 24 hours a day, 7 days a week. Hospice care is used when you can no longer be helped by curative treatment and you are expected to live about 6 months or less if the illness runs its usual course. Hospice gives you palliative care, which is treatment to help relieve disease related symptoms, but not cure the disease; its main purpose is to improve your quality of life. You, your family and your doctor decide together when hospice care should begin.
One of the problems with hospice is that it is often not started soon enough. Sometimes the doctor, patient or family member will resist hospice because he or she thinks it means you’re “giving up” or that there’s no hope. This is not true. If you get better or the cancer goes into remission, you can be taken out of the hospice program and go into active cancer treatment. You can go back to hospice care later, if needed. But the hope that hospice brings is the hope of a quality life, making the best of each day during the last stages of advanced illness.
Hospice Care Services
A team of professionals
In most cases, an interdisciplinary health care team manages hospice care. This means that many interacting disciplines work together. Doctors, nurses, social workers, counselors, home health aides, clergy, therapists and trained volunteers care for you and your family. Each of these people offers support based on their special areas of expertise. Together, they give you and your loved ones complete palliative care aimed at relieving symptoms and giving social, emotional and spiritual support.
Pain and symptom control
The goal of pain and symptom control is to help you be comfortable while allowing to stay in control of and enjoy your life. This means that discomfort, pain and side effects are managed to make sure that you are as free of pain and symptoms as possible, yet still alert enough to enjoy the people around you and make important decisions.
Since people differ in their spiritual needs and religious beliefs, spiritual care is set up to meet your specific needs. It may include helping you look at what death means to you, helping you say good-bye or helping with a certain religious ceremony or ritual.
Home Care and Inpatient Care
Although hospice care can be centered in your home, you may need 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 care and with your family. You can go back to in-home care when you and your family are ready.
While you are in hospice, your family and caregivers may need some time away. Hospice service may offer them a break through respite care, which is often offered in up to 5-day periods. During this time you will be cared for either in the hospice facility or in beds that are set-aside for this in nursing homes or hospitals. Families can plan a mini-vacation, go to special events or simply get much needed rest at home while you are cared for in an inpatient setting.
Regularly scheduled family conferences, often led by the hospice nurse or social worker, keep family members informed about your condition and what to expect. Family conferences also give you all a chance to share feelings, talk about what to expect and what is needed, and learn about death and the process of dying. Family members can find great support and stress relief through family conferences. Daily conferences may also be held informally as the nurse or nursing assistant talks with you and your caregivers during their routine visits.
Bereavement is the time of mourning after a loss. The hospice care team works with surviving loved ones 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 needed. Bereavement services are often provided for about a year 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 that range from hands-on care to working in the hospice office or fundraising.
Hospice care staff members are kind and caring. They communicate well, are good listeners and are interested in working with families who are coping with a life-threatening illness. They are usually specially trained in the unique issues surrounding death and dying. Yet, because the work can be emotionally draining, it is very important that support available to help the staff with their own grief and stress. Ongoing education about they 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 making sure that all involved services share information. This may include the inpatient facility, the home care agency, the doctor and other community professionals, such as pharmacists, clergy and funeral directors. You and your caregivers are encouraged to conduct your hospice team if you are having a problem, any time of the day or night. There is always someone to call to help you with whatever may arise. Hospice care assures you and your family that you are not alone and help can be reached at any time.
Hospice Care Settings
Hospice care is defined not only by the services and care provided, but also by the setting in which these services are delivered. Hospice care may be provided in your home or in a special facility.
Most cancer patients choose to get hospice care at home. In fact, more than 90% of the hospice services provided in this country are based in patients’ homes.
Before making a decision about the type of program that is best for you and your family, it is important to know all your options and what each requires. Your doctor, hospital social worker or discharge planner can be very helpful in deciding which program is best for you and your family.
Home Hospice Care
Many, if not all, of the home health agencies in your community, as well as independently owned hospice programs, will offer home hospice services. Although a nurse, doctor and other professionals staff the home hospice program, the primary caregiver is the key team member. The primary caregiver is usually a family member or friend who is responsible f