Quality during the end of life – therapeutic recreation in hospice care
Jan S. Hodges
To be admitted to a hospice program, the patient usually has a prognosis of less than six months to live.
As health care changes, one issue therapeutic recreation professionals may have to address is the expectation that patients receive only the care necessary to maintain or restore health (Sylvester, 1992). Therapeutic recreation interventions have historically focused on rehabilitation or functional skill development. In an attempt to secure financial reimbursement, the goal of facilitating expression of leisure choice and enhancement of quality of life sometimes has been ignored or not articulated. In the early 1980s, Medicare initiated a capitated per diem payment system intended to cover services that enhance quality of life, with no curative or rehabilitative goals, of patients diagnosed with life-limiting illnesses or disabilities. This article will explore the role of therapeutic recreation in hospice care as one of facilitating leisure preference and enhancing quality of life.
What is Hospice?
The term hospice comes from the Latin root related to hotel and hospital; however, according to the National Hospice Organization, the modern term is used to signify a shelter for those journeying through the final months, weeks, and day of their lives. Furthermore, hospice is not simply a place. The hospice service model focuses on the palliative treatment of persons with terminal illness or disability while allowing the patient to maintain the dignity of personal choice and control over medical interventions. Most hospice services occur in the home, allowing the patient to be in familiar surroundings and reduce costs associated with hospitalization. In 1996, approximately 22 percent of all deaths in the United States occurred at home, 17 percent in nursing homes.
The hospice philosophy incorporates reasonable and necessary medical care that neither hastens nor postpones the patient’s death. To be admitted to a hospice program, the patient usually has a prognosis of less than six months to live and no longer benefits from curative treatment. Typical diagnoses include AIDS, heart disease, and cancer. Nearly 78 percent of all hospice patients have cancer, according to the National Hospice Organization. A study published in the New England Journal of Medicine found that the median survival for Medicare patients referred to a hospice program was only 36 days, well below he six months of allowable care. Of hospice patients, 15.6 percent died within seven days and 8.2 percent lived more than a year (Christakis & Escarce, 1996, p. 174). These lengths of survival allude to the variance among hospice patients.
Similarly, symptoms differ as the patient approaches death. At one to three months before death, an individual may begin to withdraw from the world and into him/herself, decrease food intake, and reduce communication. Disorientation, agitation, and confusion may occur later, coupled with decreasing blood pressure or respiration irregularities. In the final days, symptoms may intensify toward total ceasing of physical functioning. The symptoms, however, are not linear, and differing patterns or symptoms may be present among individuals. Additionally, it is not uncommon to observe a patient appear to improve within days of death.
Hospice care addresses the physical, emotional, and spiritual pain of terminally ill persons and their family members, with interventions focusing on issues of quality of life. Clinical staff strive to relieve physical and psychological pain and suffering and to make death as peaceful and comfortable as possible for both the patient and the family. Controlling physical and psychological pain and its symptoms is central to the team of nurses, social workers, chaplains, therapists, nursing assistants, counselors, and volunteers. A thorough knowledge of symptoms of advanced illness and strategies to alleviate those symptoms is necessary for effective intervention. Current goals include assisting the patient in working through life issues to reach inner peace. Although each patient varies, common needs of dying patients have been identified. During the stages of death, individuals need physical and emotional comfort to enhance their reflection on life and anticipation of death. Touch and humor are often lacking in their lives. Scimeca and Buggs (1996) have suggested that individuals need to control some aspect of their life to reduce helplessness. Many of these strategies seem appropriate for therapeutic recreation services.
TR and The Hospice Philosophy
In their classic text, Peterson and Gunn (1984) stated, “The specific need of the client determines the purpose of the interaction, which in turn determines the role of the specialist,” (p.16). “Any individual with a physical, mental, social, or emotional condition that limits leisure functioning is eligible and could potentially benefit from the therapeutic recreation services,” (p.5). Preparing for imminent death does not negate a person’s right to quality leisure behavior. Of persons with illness or disability, Sylvester (1992) stated, “They need and are entitled to live a life fit for a human being and to take a hand in determining the kin of life they wish to lead” (p.16).
Further, research has demonstrated improved psychosocial well-being, reductions in reliance upon the health care system, increased life satisfaction, and increased perceived quality of life as outcomes of therapeutic recreation (Cole, Kinney, Riley & Shank, 1991). These benefits are consistent with hospice goals. To achieve the above therapeutic recreation benefits, services might be provided within three categories: comfort, expression, and diversion.
A primary goal of hospice care can be addressed through such activities as relaxation, imagery, or meditation techniques that allow the patient to manage his or her own comfort. Therapists can facilitate situations where the patient feels safe to express his or her happiness, regrets, and desires for his or her remaining time. The therapeutic recreation specialist can facilitate the use of past leisure behaviors to increase the comfort between the patient and family or friends. One example is the case of a dying man who was visited by his “old poker buddies.” The interaction was uncomfortable until the card game began. Returning to an old leisure pattern eased the interaction of everyone and increased the enjoyment of time together. Similarly, training family members to facilitate reminiscence was found to be beneficial for interaction between older disoriented persons and family members (Weiss & Thurn, 1990). Families can work together on family trees or genealogy searches, or on the development of oral histories of the dying family member. Together, families can reminisce while organizing photographs and mementos.
A therapeutic recreation program can provide a way in which individual patient’s interests and needs are identified and allowed expression. Further, leisure education can be used to enhance control or to reduce depression through increased awareness of what the patient can still do and alternative ways to do things he or she once enjoyed. As some patients are anxious to fill their remaining time with meaningful activities, rather than just wait to die, projects that enhance expression may be valuable. Patients might make creative messages or art to leave to a surviving friend, such as a woman dying of cancer who expressed a desire to leave something to her surviving family and caregivers. In her last few weeks, she crocheted more than 50 angel Christmas ornaments. She expressed the enjoyment of knowing that for future Christmases she would be remembered as having contributed to the holiday. Journaling or life reviews may provide a means to increase the expression of feelings associated with dying or displacement of anger. The mere expression of choice in recreational activities may reduce frustration and helplessness.
Harlan & Hawkins (1992) reported the involvement of a client in an expressive art program who, through involvement, demonstrated control in choice of materials. As he weakened, he continued to attend the art group where preoccupation about death emerged within his work, and he began to reference his imminent death verbally. This experience validated his feelings and concerns as he moved toward acceptance of death. A similar story involved the use of bedside pet therapy with a 40-year-old man who suffered from a terminal brain tumor. His family had stopped visiting, and he was becoming increasingly nonverbal and depressed. During 40-minute sessions, the man would stroke the dog while saying, “I love this dog, and this dog loves me.” These were the only words he spoke in his final days. Additionally, other care providers commented on his improved mood after pet therapy.
Because hospice care includes significant others, therapeutic recreation interventions occur both pre- and post-death. Leisure education for caregivers, activity that encourages expression of grief, or activity to encourage interaction between the dying patient and the family member are needed. As death becomes imminent, it is quite common for the patient to turn inward, tuning out the rest of the world. At this time, the family may need to offer the most assistance.
Patients at the end of their lives may easily forget the pleasurable life experiences in which they once participated, including laughter. Patients may need diversions from the inevitable or distance from thoughts of their medical procedures. Volunteers can be used to facilitate diversionary activities, and therapeutic recreation specialists can take the lead in training volunteers to accommodate the leisure desires of dying patients. Volunteers might read books chosen by the patient or assist with an art project. Volunteer training should focus on preparing the volunteer for the stages of dying and on the importance of control and choice in those final days.
Increasing the presence of therapeutic recreation in hospice programs requires proactive action within the profession. Both pre-service and continuing-education opportunities are needed to prepare therapeutic recreation specialists for this task. Much of this work has been done previously with patients in the advanced stages of cancer or AIDS who received treatment in traditional health care facilities.
However, providing palliative care may require the therapist to broaden his or her view of therapeutic recreation and to focus on quality of life, not as a result of improved functional ability but as a goal in and on itself. In this situation, the belief that quality of life should be sufficient to warrant therapeutic recreation interventions is required.
Christakis, N.A. & Escarce, J.J. (1996). Survival of Medicare patients after enrollment in hospice programs. The New England Journal of Medicine, 335, 172-202.
Cole, C.P., Kinney, M.B., Riley, B. & Shank, J.W. (1991). Benefits of therapeutic recreation: A consensus view. Ravensdale, WA: Idyll Arbor.
National Hospice Organization (1996). You matter to the last moment of your life. Author, 1901 N. Moore Street, Suite 901, Arlington, VA 22209.
Raymer, M. S. (1997, Summer). Responding to suicide. The Hospice Professional, 2.
Scimeca, L. & Buggs, R. (1996). Therapeutic recreation for the terminally ill: Interventions and illness specific recommendations. American Therapeutic Recreation Association Annual Conference, San Francisco. CA.
Weiss & Thurn, (1990). Perceived effects of a training program to enhance family member’s ability to facilitate reminiscing with older disoriented residents. Therapeutic Recreation Journal, 24, 18-31.
Wells, B. (1997). We need to talk: Conversations about the end of life. Duke Medical Perspectives, 24-35.
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