American Journal of Hospice and Palliative Medicine®

Since the development of the hospice movement in the United States, care of the terminally ill has undergone vital change.’ This change involves the alternative of home care for the terminally ill. It allows the patients, the primary caregiver, and the rest of the family to be in control of care. As stated by Masters, 2 hospice is unique in that the patient and family controls the environment, and lifestyle, including treatment modalities, more than in any other concept in health care.

Hospice was developed to give people with a terminal illness an option to traditional medicine. Hospice is a concept of care that has been established to improve the quality of life of the terminally ill. Therefore, the ultimate goal of hospice care is to enhance the quality of life of patients with terminal illness, mainly cancer. 3

In the hospice setting, the nurse applies a holistic approach when planning and providing primary care. The nurse becomes increasingly more knowledgeable about the problems and strengths of the patient and family to whom he/she is caring for. The nurse must make the transition in her philosophy from cure-to-care in hospice, and symptom control being the nurses ‘priority in order to enhance the patients quality of life. Curtis and Fernsler⁴ explain that hospice care focuses on helping patients to communicate effectively and to share life agendas with their primary caregiver and the hospice nurse. These researchers continue to state that these efforts promote congruence between patient, primary caregiver, and the hospice nurses’ view of the patients quality of life. As a hospice nurse, I want to explore the relationship that the nurse has with his/her patients. Are hospice nurses and their patients viewing quality of life congruently? This paper provides a review of the literature concerning quality of life of the hospice patient and provides background information for future research.

Staff caring for AIDS patients experience a grief characterized by specific features. This article presents ways to understand these losses and develop supportive ways to manage their reactions.

In philosophy and theology, to transcend is to go beyond the limits of lived human experience. Hospice workers accompany people who are traveling beyond the limits.

“Whoever would be a companion to the dying, therefore, must enter into their darkness, go with them at least part way along their lonely and frightening road.” ¹

This paper explores the requisite hospice practice competencies of caring spiritually and guiding letting go, as identified in a qualitative analysis of the practice stories of 32 hospice nurse experts working with people nearing death.

Spirituality has been described as the essence of personhood, the longing for meaning in existence, experience of God, experience of ultimate values, and trust in the transcendent. Its ultimate end is union or connection with a reality more enduring than the individual self.^2,3 In contrast, spiritual distress is manifested as alienation and disconnection.⁴ The reality of the dying process involves a progressive series of disconnections from life, which requires the process of letting go. Thus, transcending life involves both the need to detach and separate from life as it has been lived. One home visiting hospice nurse has described dying as a spiritual process of both reflecting and detaching. ⁵

Nagai-Jacobsen and Burkhardt identify three goals of caring spiritually:

• Fostering personal integrity;

• Promoting interpersonal connection;

• Supporting personal search for meaning. ⁶

O ‘Connor describes hospice spiritual care promoted through the practice of presence, compassion, hopefulness, and the affirmation of life as fruitful. ⁷ Stiles has completed the only published qualitative description of hospice nursing as spiritual care. ⁵ She asked 11 hospice nurses and 12 bereaved families to describe their hospice experiences, which were then analyzed to name dimensions of the nurse-family spiritual relationship. Many of these dimensions parallel those of the current study and will be discussed below.

The role of the physical therapist in hospice care is different from the role the therapist plays when a member of a rehabilitation team. This article will address the need for a fundamental role change and offer suggestions for ways physical therapists can contribute to the care of the hospice patient. In working with hospice patients, therapists must, for the most part, change from a controlling role to one of listener and problem-solver. In this manner; therapists can:

• Assist the patient to maintain functional abilities for as long as possible;

• Reduce the burden of care for the caregivers;

• Assist in pain control.

Physical therapists can provide hospice nurses with valuable assistance in caring for hospice patients.