Newsletter Highlights

Palliative Care, Hospice, End-of-Life Resources

Cheryl Warren, MSLS, AHIP
ValleyCare Health Library & Ryan Comer Cancer Resource Center
Pleasanton, CA

End-of-life issues are an important aspect of the continuum of cancer care. Issues usually center on palliative care and hospice, which are different but closely related areas of care. Palliative care typically spans the period from acute treatment through the hospice experience. Hospice care is usually reserved for people in the last six months of life. The terms are frequently used interchangeably. Though the terms may vary in meaning, the objectives are the same. The goal of palliative care and hospice is to achieve the highest quality of life possible with focus on maintaining comfort and dignity at the end of life. Emphasis is placed not on curative treatment, but on the emotional, spiritual, psychological and physical comfort needs of the patient and the family.

As information professionals, we may be called upon to assist with information queries by both the health care professional and the consumer. Developing resources on advanced directives, palliative care and hospice are a useful addition to the cancer resource center.

Web Sites

• Hospice Net
  Provides guides to issues and concerns that arise from life threatening illness. Includes information for caretakers, families and the dying.
  http://www.hospicenet.org/
• Hospice Web
  Site provides a lengthy list of related links arranged by national, state and topical headings. Includes information on hospice including a handy FAQ section.
  http://www.hospiceweb.com/
• National Hospice and Palliative Care Organization
  A very proactive organization, the NHPCO site has current news and legislation issues. Provides reproducible guides on grief and bereavement topics. Maintains a searchable database for finding local hospice care programs. Some information is available in Spanish.
  http://www.nhpco.org/
• Caring Connections
  Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.
  http://www.caringinfo.org

Books

All kinds of love: experiencing hospice. Jaffe, Carolyn. Amityville, NY: Baywood Pub, 1997. Issues are discussed through personal stories.

At home with terminal illness; a family guide to hospice in the home. Appleton, M and Henschell, Todd. Englewood Cliffs, NJ: Prentice Hall, 1995. Written by a hospice physician, this is a practical, thoughtfully constructed guide for the family and caregiver on the hospice process.

Culture & nursing care: a pocket guide. Lipson, JG, et al. San Francisco: UCSF Nursing Press, 1996. A very nice guide on features of a culture that influence health care for that ethnic group. Includes death rituals. Arranged alphabetically by ethnic group.

Death and dying sourcebook. Muth AS, ed. Detroit: Omnigraphics, 2000. This reference-style book for the consumer contains statistics, information on living wills and advanced directives, symptom management and other end-of-life issues.

Final victory: taking charge of the last stages of life, facing death on your own terms. Preston TA. Roseville, CA: Prima Publishing, 2000. Written by a well-known patients' rights advocate, the book covers all aspects of planning, understanding the last stages of life and communicating to health professionals and family.

Handbook for mortals: guidance for people facing serious illness. Lynn, Joanne and Harrold, Joan. NY: Oxford University Press, 1999. Thoroughly discusses the topic with excellent resource for the patient and caregiver.

Handbook of palliative care in cancer. Waller A and Caroline NL. 2nd ed. Boston: Butterworth-Heinemann, 2000. A practical, concise handbook with symptom management for the health professional, although some sections are readable by the educated public and provide suggestions and information that could be useful to them.

Oxford textbook of palliative medicine. Doyle, D, ed. 2nd ed. NY: Oxford University Press, 1999. Professional textbook has chapters covering numerous aspects of palliative care including ethics, symptom management, pain measurement, and psychosocial elements.

Textbook of palliative nursing. Ferrell BR, ed. NY: Oxford University Press, 2001. Text defines the nursing role of palliative care. Chapters include pain assessment, symptom management for quality of life and psychosocial support for both family and patient.

Transcultural health care: a culturally competent approach. Purnell, LD. Philadelphia: F A Davis, 1998. A textbook approach to transcultural issues in health care. Each ethnic group is discussed separately including death rituals.

Videos

Facing death: an understanding of end-of-life patient needs. Aquarius Productions, Inc., 1998 Suitable video for healthcare professionals and caregivers on end-of-life issues.

Quality of time: an introduction to hospice. Kaiser Permanente, 1992 Designed for the patient and family member, the video reviews the hospice program process.

Literature Review

This is a selected list of articles reviewing the issues of palliative and hospice care for the cancer patient and family unit.

ASHP Statement on the Pharmacist's Role in Hospice and Palliative Care. American Journal of Health-System Pharmacy. 2002; 59(18):1770-74. Reviews pharmacists' responsibilities concerning the care of patients who might be nearing the end of life.

Completing the Continuum of Cancer Care: Integrating Life-Prolongation and Palliation. Byock IR. CA: Cancer J Clin. 2000;50 (2):123-132. Article deals with quality of life issues faced by patients and the impact prevailing payment structures and medical system imposes.

Creating a Pain Management Educational Module for Hospice Nurses: Integrating the New JCAHO Standards and the AHCPR Pain Management Guidelines. Rankin, Elizabeth A.; Mitchell, Margaret L.; Journal of Hospice & Palliative Nursing 2000; 2 (3):91-101. Reviews current guidelines and standards. Discusses developing a training program for hospice nursing.

Dignity-Conserving Care: A New Model for Palliative Care. (Perspectives on Care at the Close of Life). Harvey Max Chochinov. JAMA. 2002; 287(17):2253 -61. Article on palliative care includes tips and interview questions that doctors and nurses can use with their patients.

Management of Common Symptoms in Terminally Ill Patients: Part I. -- Fatigue, Anorexia, Cachexia, Nausea and Vomiting. Ross, Douglas D. and Alexander, Carla S. American Family Physician. 2001;64 (5): 807+.

Management of Common Symptoms in Terminally Ill Patients: Part II. --Constipation, Delirium and Dyspnea. Ross, Douglas D. and Alexander, Carla S. American Family Physician. 2001; 64 (6):1019 +. Very good discussion on symptoms, other than pain, that can contribute to suffering near the end of life, including management strategies.

Palliative Care. Mayo Clinic Health Letter. 2002; 20 (2):4+. Article for the family or caregivers of a cancer patient focusing on the goals and benefits of palliative care. Describes difference and similarities of palliative and hospice care.

Quality of Life in Cancer Patients: Use of a Revised Hospice Index. By: McMillan, Susan C. and Weitzner, Michael. Cancer Practice. 1998; 6(5): 282-289. Emphasis on the quality of life indicators for the dying and a tool for evaluation.

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