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1. Assessing the spiritual status of the patient, family and caregiver;
2. Documenting the spiritual assessment, goals for spiritual care, services provided and the patient’s and family’s response to spiri-tual care;
3. Acknowledging and respecting the patient’s and family’s beliefs, culture and values related to life’s meaning including suffering and loss and desire for services/support;
4. Meditation, counseling, prayer, sacred rituals or practices, active listening and supportive presence;
5. Assisting with funerals and memorial services;
6. Communicating with and supporting the involvement of local clergy and/or spiritual counselors as possible and as desired by the patient, family and caregiver; and
7. Consulting and providing education to the interdisciplinary team members and patients and families about spirituality and related care and services.
Practice Examples
The hospice chaplain coordinates spiritual services thereby
assur-• ing that the patient’s and family’s needs are met by their own clergy or the hospice chaplain.
The hospice chaplain prays with the patient who requests prayer.
• The hospice chaplain explains to the team the specific beliefs of
• a patient and the team discusses the effect of such beliefs on that patient’s care.
Other members of the interdisciplinary team identifying
spiri-• tual needs of the patient/family consult with the hospice chaplain about how to best address such needs.
Many patients and families are concerned about their religious beliefs as well as their spiritual lives. They may only know how to demonstrate their spirituality through religious expression. Hospice and palliative care providers should always support the patient and family in the expression of their specific religious beliefs and practices and strive to learn those they are unfamiliar with.
Often, religious expression is influenced by cultural background. Each culture adapts religious expression to more comfortably fit cultural norms.
Palliative care providers are more effective when they understand these norms. Cultural beliefs and practices around death and dying are espe-cially important for hospices to understand and support. For instance, hospice may help make it possible for an Islamic family to be able to wash and wrap the patient’s body following death according to cultural and
religious practice. The ability to carry out such perideath rituals can have a very positive impact on the bereavement process (see Irish, 1993, for more details on such practices).
Acceptance is more than just resignation toward death. Resignation is like learned helplessness. No matter what a person does, the illness pro-gresses and one has to give in. There is no more point in fighting. Accepting death is an embracing of what comes next. It is a feeling of completeness with one’s life without bitterness or regret. Patients may describe a sense of wonder about what lies ahead.
A number of useful writings on spiritual growth at the end of life have been contributed by insightful authors including Stephen Levine, Rachael Naomi Remen, Ram Dass, Joan Halifax, and others (see the recommended readings at the end of this chapter).
The following case illustrates some of the difficult emotional challenges that face hospice providers and the potential to change a tragic situation into one in which there is some resolution.
Case Illustration Janine
Janine was too young to die—only 37 years old with two small children, Josh (9) and Jackie (11). She had been fighting metastatic breast cancer for 4 years. Besides the tragedy of knowing she would not live to see her chil-dren grow up, there was a conflicted relationship with her ex-husband and a distant relationship with her parents. She had many friends and what she viewed as a good support system of other women.
Janine came to hospice after failing a round of chemotherapy. She was in need of help emotionally and physically, but she was not so sure about throwing in the towel. She could not say goodbye to her kids, and she felt very conflicted about her life. She was gradually getting weaker and spent most of her time in bed. Janine came into the hospice unit for pain control shortly after becoming a hospice patient. She could not get comfortable with increases in her mor-phine and was eventually put on a continuous subcutaneous infusion.
It became clear that increased doses of morphine were not affecting her pain. As we came to know Janine more, it became clear that she was agi-tated about who would care for her children when she was gone. She felt little trust for her ex-husband, who had cheated on her, and she felt distant from her parents.
We explored with Janine what she could do to become more resolved about her children. We arranged for her parents to come and visit. They had not known how serious her illness had become. She invited her ex-husband
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to visit, but he would not show up when he said he would. Janine agreed that she would start a videotape of her life to leave for the children.
As her parents visited in the hospice unit, it became clear that the estrangement with her parents came from rebellion against them as a young adult. They had rejected her lifestyle, and each had not forgiven the other for the angry things said. The conflict seemed almost trivial now that her life was near an end. They began to explore her life growing up to help with the video and to help her to put together a photo album. There was much sadness as they forgave each other and regret over the time they had lost.
Janine’s pain was finally controlled, and she worked hard on the video-tape project. She included special messages for her children. She left an oral history of her life, her philosophy, and her wishes. She went home to the care of her parents and friends. Arrangements were made for custody of the children to be given to her parents. Her ex-husband finally visited and asked for forgiveness for his behavior. He agreed to the custody arrange-ments and visited a few times, although he was unable to stay long or to help with her care.
A week before she died, Janine finished her tape and family album. She spent as much time with Josh and Jackie as she could, and they helped with her care. She died peacefully in her bed with her parents, children, and friends around her. Two days later, they held a service that she had helped plan. Her children read some of her favorite poetry, and everyone celebrated her short but full life.
The dying face many intense emotional and spiritual concerns as death approaches. Grief is a central dynamic to the dying and especially to their families. In the next chapter, grief and bereavement are given more detailed attention.
recommended reading
Buckman, R. (1992). How to break bad news: A guide for health care professionals.
Toronto: University of Toronto Press.
Callanan, M., & Kelly, P. (1992). Final gifts. New York: Bantam.
Corless, I., Germino, B., & Pittman, M. (2006). Death, dying, and bereavement: A challenge for living (2nd ed.). New York: Springer.
Corless, I., Germino, B., & Pittman, M. (Eds.). (1994). Dying, death and bereavement:
ἀ eoretical perspectives and other ways of knowing. Boston: Jones & Bartlett.
Dass, R. (1971). Remember, be here now. San Cristobal, NM: Lama Foundation.
Dass, R. (2001). Still here: Embracing aging, changing, and dying. New York:
Riverhead.
Doka, K. (2008). Counseling individuals with life-threatening illness. New York:
Springer.
Garfield, C. (Ed.). (1978). Psychosocial care of the dying patient. New York: McGraw-Hill.
Halifax, J. (N.d.). [Articles]. Retrieved October 24, 2008, from http://www.upaya.org Kastenbaum, R. (2000). ἀ e psychology of death (3rd ed.). New York: Springer.
Kübler-Ross, E. (1969). On death and dying. New York: Macmillan.
Levine, S. (1989a). A gradual awakening. New York: Anchor.
Levine, S. (1989b). Meetings at the edge. New York: Doubleday.
Levine, S. (1989c). Who dies? An investigation of conscious living and conscious dying. New York: Anchor.
Remen, R. (1997). Kitchen table wisdom: Stories that heal. New York: Riverhead.
Rosen, E. (1990). Families facing death: Family dynamics of terminal illness.
Lexington, MA: Lexington Books.
Wass, H., & Neimeyer, R. (Eds.). (1995). Dying: Facing the facts (3rd ed.). Washington, DC: Taylor & Francis.
Weenelson, P. (1996). ἀ e art of dying: How to leave this world with dignity and grace, at peace with yourself and loved ones. New York: St. Martin’s.
Werth, J., & Blevins, D. (2006). Psychosocial issues near the end of life: A resource for pro-fessional care providers. Washington, DC: American Psychological Association.
Web resources
Association for Death Education and Counseling: http://www.adec.org Growth House, Inc.: http://www.growthhouse.org
International Work Group on Death, Dying, and Bereavement: http://www.iwgddb.org
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