Hospice care is a multidisciplinary approach to caring for individuals who have a terminal illness or condition. It is based on a philosophy that affirms life and advocates self-determination. The family is considered the unit of care and the hospice team of professionals provides medical, emotional, and spiritual assistance to patients as well as to their families and friends. Typically a team includes physicians, nurses, chaplains, social workers, counselors, nursing assistants, holistic practitioners, trained volunteers, and administrative and clerical staff. Services may be provided in an inpatient setting, long-term care facility, or the patient’s home.
The word hospice is derived from the Latin hospitium, an inn for travelers usually maintained by members of a religious order. Jeanne Garnier, founder of the Dames de Calaire in Lyon, France, first used the name with reference to the care of dying patients in 1842. In 1879 the Irish Sisters of Charity opened Our Lady’s Hospice in Dublin, and in 1905 they established St. Joseph’s Hospice in London. The founder of the modern hospice movement was Cicely Saunders, a physician, who started St. Christopher’s Hospice in London in 1967. She was inspired by a patient, David Tasma, with inoperable cancer. The two discussed how the care of dying patients might best be done in a setting specifically created for it, and when Tasma died, he left Saunders money to establish such a place. During the next several years the hospice concept spread throughout the world. In 1974, hospice care was introduced in the United States at Yale University in New Haven, Connecticut.
Administration and Funding
Hospice services are provided in a variety of settings and have multiple avenues of funding. They may be part of a home health agency, have a freestanding facility or space in a local hospital, or be provided to patients in their homes or wherever they may be staying. Hospices may rarely be staffed by volunteers but are usually operated by paid specialists.
To be admitted to a hospice program, a patient must obtain a physician’s order. This order can be requested by anyone, including the patient, a family member, or a health-care provider. Any physician can write such an order as long as it states that in the physician’s best medical judgment, the patient has 6 months or less to live, regardless of age or diagnosis. Hospice care will be continued as long as the patient lives, provided a progressive decline can be demonstrated.
Once admitted to the hospice program, most patients are eligible for funding under the Hospice Medicare benefit, which does not depend on age. Patients may qualify for other financial resources, such as Medicaid. Hospices also receive funding from grants and donations, fundraising activities, and other state, local, or federal sources. Most hospices have a policy of providing service to those in need even if the usual avenues of reimbursement are not available. Besides those already mentioned, such services typically include paying for any medications related to the patient’s diagnosis and providing needed equipment, such as oxygen delivery systems, wheelchairs, hospital beds, and similar supplies.
The Hospice Philosophy
Affirmation of Life
Hospice philosophy involves affirming and respecting life and honoring death as a natural part of existence. The policy of the National Hospice Association is that hospice does not hasten death or prolong life. The aim of hospice services is to maximize the quality of whatever time may remain for every patient and for their families and friends. Hospice nurses are experts in symptom management, particularly pain control, and this knowledge is used to promote patient comfort. Social workers and bereavement counselors assist patients and families with the psychological and emotional factors that may accompany the dying process. Chaplains honor all spiritual and religious beliefs, and can facilitate the attainment of peace and faith at this stage of life. Ancillary personnel, such as nursing assistants, volunteers, and alternative therapists also have as their aim helping the patient and family live a full and comfortable life.
Part of honoring life is the acknowledgment that each patient is an individual and has unique values, preferences, and desires. Hospice believes that the patient and family have the right to make decisions about the types of services they receive and the general management of their care. Hospice team members offer information to assist with these decisions, and can facilitate the decision-making process, but they do not choose which course of action the patient will take. Research has shown that being able to make choices is one of the most empowering things a patient can do. Patients are often distressed if they lose the physical and mental abilities that used to come so easily. But if they are encouraged to continue to make as many decisions as possible about their care, they are able to maintain a sense of control and competence.
Psychological Aspects of Hospice Care
Psychological support provided by hospices generally includes care offered to the patient and family prior to the patient’s death, bereavement services after the death, and emergency response and outreach to the local com-munity. During the patient’s life, medical social workers assist the patient and family with emotional, financial, legal, ethical, and other concerns that often arise during the last stage of life. Following the patient’s death, bereavement specialists, who may be social workers, psychotherapists, counselors, or other professionals, assist family and friends with grief support services. Hospice social workers and counselors may also respond to community crises, such as the death of a student, which may affect large numbers of people.
Psychological Services during the Patient’s Life
When a patient is admitted to hospice care, a medical social worker (MSW) meets with the family to conduct an initial psychosocial assessment. This is an opportunity to become acquainted with the patient, identify particular needs, and evaluate family functioning to highlight strengths as well as possible areas of concern. The MSW does not attempt to radically restructure long-standing family dynamics but instead attempts to maximize the effectiveness of the family’s existing coping strategies. Information about living wills and other practical matters is also provided.
Hospice staff use a variety of theoretical approaches, depending on each therapist’s orientation and the needs of the family. For example, a person-centered approach may be appropriate as patients and families relate their history and express feelings about their situation. For individuals seeking to modify distressing thought patterns, a cognitive-behavioral approach might be used.
While every situation is different, most patients and families experience similar feelings and challenges during a terminal illness or condition. The MSW can support the family by normalizing these common occurrences and reassuring clients that they are not abnormal or crazy.
For example, educating families about Elisabeth Kubler Ross’s stages of grief can help them understand the emotional turmoil they may be experiencing. Research indicates that individuals are often quite relieved to learn that denial, anger, bargaining, depression, and acceptance are normal aspects of the dying process and can be experienced in various degrees and sequences. The MSW may also suggest strategies for dealing with each of these stages.
Anticipatory grief has long been a phenomenon commonly noted in hospice clients. Mourning may begin as soon as the probable outcome of the patient’s condition is known. This may involve increased anxiety, role rehearsal by the survivors, emotional withdrawal of the patient or survivors, and extreme emotional attachment to the patient. The MSW can facilitate understanding and management of these occurrences. Recently, research by Robert Fulton and others suggests that anticipatory grief may be a social construct and its practical and theoretical validity is being explored.
Caregiver stress is another area commonly addressed by the hospice social worker. The physical and emotional manifestations of caring for a terminally ill patient can include exhaustion, feelings of being overwhelmed, guilt, regret, anger, and anxiety. The MSW can suggest stress management techniques and explore other avenues of relief, such as respite care for the patient and volunteers to assist with household tasks or sit with the patient while the caregiver takes a break. Caregiver support groups provide an opportunity to share experiences and coping strategies.
Psychological Services after the Patient’s Death
After a hospice patient dies, grieving survivors often experience a variety of emotional, physical, spiritual, and behavioral distress. The bereavement staff will continue to provide services to family and friends as long as necessary. These are essentially the same as predeath interventions, with emphasis on the grief process. They include individual and group therapy, reading lists and other similar resources, education, and referral to other mental health practitioners when necessary. Additional techniques for children include the use of sand play therapy, puppets, and animal-assisted therapy.
Hospice social workers and counselors also respond to community emergencies when needed. The trauma of natural disasters and the grief experienced by children when a classmate dies are examples of situations where the expertise of hospice professionals may be utilized.
Ethical Aspects of Hospice Care
Withdrawal of advanced life support and the concept of assisted suicide present challenges in caring for hospice patients. Technological advances in acute care make it possible to keep patients alive artificially for extended periods. Hospice workers emphasize the importance of having a living will that specifies the patient’s wishes regarding the artificial prolonging of life. This can eliminate the conflict that may arise as the patient declines.
The official stance of the National Hospice Organization is that assisted suicide is not part of the hospice philosophy. However, patients not infrequently ask hospice workers to help them die. Theresa Harvath and others address the personal and professional issues that may arise in this difficult situation. Hospice staff assess and treat any physical symptoms that may contribute to suicidal ideation and encourage the patient to explore unresolved psychological and spiritual issues.
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