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Hospice Care
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Hospice is derived from the Latin word hospitium, hospitality, an inn for travelers, especially one kept by a religious order. The hospice movement was started by Dr. Cicely Saunders in England in the 1940s, when St. Christopher's Hospice was opened to provide a quiet place where people could die in peace and dignity. It was staffed by nuns who had a sense of commitment to service.
Hospice care was introduced in the United States in 1974 at Yale in New Haven, Connecticut. Since then, the movement has expanded rapidly, with programs based on several organizational models: all-volunteer, hospital-based, integrated with home health agencies or freestanding community hospices. Though diverse, these programs share a philosophy.
Philosophy of Hospice Care
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Despite all the advances in diagnosis and treatment, a cure is not always possible. Continued treatment, even if available, may compromise a patient's quality of life. After discussion with the physician and consideration of treatment options and the potential outcomes, it may be appropriate to consider palliative (comfort) care. Some patients and families are frightened by the word hospice, believing that all treatment will be discontinued and the patient is being sent home to die. But many kinds of treatment may be continued to provide comfort and relief of pain.
- The hospice philosophy embraces a holistic approach that encompasses physical, emotional and spiritual concerns. The patient and family are seen as the unit of care. Care has to be individualized to meet the patient's and the family's needs, as well as being responsive to differences in lifestyles. The hospice philosophy:
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Affirms life
Promotes self-determination, as patients and families participate in their plan of care
Provides education to help patients and families provide appropriate care
Promotes understanding and accepting that the journey of life eventually leads to death, and encourages people to view this experience as an opportunity for growth
Emphasizes palliation, which includes physical, psychological and spiritual comfort delivered by a multidisciplinary staff
Why Choose a Hospice?
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When medical treatments have been exhausted or the burden of treatment outweighs the benefits, it may be time to consider hospice care. Most people would like to end their lives surrounded by family and friends. By bringing services into the home, hospices help patients and families provide the necessary care. Patients and families are able to retain a greater sense of control at home than in the hospital. Hospices will also provide services in convalescent homes to ensure pain and symptom management and to provide support to families. The hospice experience can foster spiritual and personal growth as the hospice team empowers patients and families to manage difficult situations.
Members of the Hospice Team
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- Medical Director
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The director is a physician who is committed to the philosophy and goals of hospice care for the terminally ill. She of he attends team meetings and provides consultation to the staff. The medical director also helps educate other physicians about hospice care, encourages them to make appropriate referrals, and may consult with primary physicians to assist them with pain management.
- Nurses
- Hospice nurses are highly skilled in effective pain management, which is a primary concern to patients and families. Family members are included in education about pain management, because they are the ones providing the daily care at home. Seeing a person in his or her own home is quite different from an office visit. Hospice nurses thus can obtain additional information that lets them collaborate more effectively with the physician.
- Medical Social Worker
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Medical social workers are trained to understand the emotional and social needs of patients and families and how best to help them in this end-of-life stage.
They facilitate communication between family members, provide advocacy and teach problem-solving skills. Social workers are aware of cultural diversity and of the belief systems that affect how people respond to hospice services. Social workers link clients to community services.
- Home Health Aides
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Home health aides are very important members of the team. They provide hands-on care and perform intimate tasks like bathing and grooming. Patients and families
may feel more at ease with home health aides than with other personnel. Nurses supervise the home health aides.
- Chaplain
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Because on of the goals of hospice care is to acknowledge and tend to a person's spiritual needs, some hospices have a chaplain on their team. Spirituality goes far beyond identifying religious affiliation and where someone worships. It involves the exploration of fears, values, and beliefs -- especially those relating to what awaits after death. At this time, many people experience a strong need to review their lives and to seek meaning and purpose. Ethnic and religious differences need to be appreciated. Rituals can be helpful in coping with the unknown. Patients may hope for reunification with God or family members, an idea that provides comfort and reduces fear. Even patients who are not affiliated with any specific, denomination often wish to get in touch with their spirituality or their existential search for meaning. Life reviews are helpful and reconciliation help patients let go of life. If the team does not have a chaplain, other team members address these issues and can also refer the patient to community clerical support.
- Volunteers
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Volunteers are the backbone of many hospice programs. They are trained prior to working with patients, and their supervision continues after their formal training ends. These individuals give willing of themselves to enhance the quality of life for hospice patients and their families. They may, for example, assist with transportation or stay with patients in the hospital or nursing home, helping to reduce the feelings of loneliness or abandonment. Some volunteers specialize in supporting the bereaved. They make followup telephone calls and if they note any problems they arrange for a team member to assess the situation. Volunteers are great people with a real commitment to service. They are essential to the success of the hospice program.
- Nutritionist
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A patient's eating habits are of great concern to the family. Often, a patient's appetite and tastes change, and family members may be at their wits' end to find something to prepare. Weight loss affects body image and worries families. The
nutritionist can help with information and suggestions that might help to improve appetite. The nutritionist works closely with families and is sensitive to ethnic preferences. Education helps patients and families adjust their usual eating habits. Medications also may affect appetite. Families get particularly upset when their loved ones are no longer able to take food or fluid by mouth, worrying that the patient will die of starvation. Some request tube feedings or intravenous hydration. It is crucial to have a calm discussion with the patient and family to determine the stage of illness and to weigh the advantages and disadvantages of these procedures. Each case needs to be examined individually, keeping in mind that comfort is the goal of hospice care.
- Pharmacist
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Pain control, one of the primary goals of hospice care, is also the patient's main worry. Pharmacists contribute their knowledge of drug potencies and of interactions among drugs to maximum pain control and symptom relief while minimizing side effects.
- Physical Therapist
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Physical therapists help patients maximize their ability to move around and to get in and out of bed, chairs, and transportation. The therapist teaches the family techniques that will prevent them from injuring themselves while assisting the patient. The therapist will recommend some exercise to encourage the patient's independence.
- Occupational Therapist
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Occupational therapists help improve the patient's ability to perform the activities of daily living, teaching people how to conserve energy and how to adapt the living environment.
- Speech/Language Pathology Service
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Speech therapists consult with team members in cases where the patient's ability to speak has been compromised. They help develop alternate communication systems.
- Psychologist
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Psychologists consult on difficult cases. Depression and preexisting psychological problems may affect how people cope. Psychologists make recommendations for improving the management of care for patients and families.
How are Hospices Financed?
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Some hospices are supported by the community with their own fundraising and donations; other programs have a large volunteer component. Hospices may be incorporated with home health agencies or hospitals, or they may receive funds from foundations and grants. Private health insurance and Medicaid are some other forms of reimbursement. In 1982, Medicare began reimbursing certified Medicare hospices, which must adhere to specific guidelines. Part A of Medicare covers most of the costs.
First appeared May 1, 1999; updated August 30, 2008