Christina Puchalski, MD, is executive director of the George Washington Institute for Spirituality and Health (GWISH). She is on the editorial board of several palliative care journals and has served as chair or co-chair of several major conferences and initiatives in spirituality and health. She is the author of Time for Listening and Caring: Spirituality and the Care of the Seriously Ill and Dying (Oxford).

 

 

Betty Ferrell is a research scientist at the City of Hope National Medical Center in California. She has devoted over thirty years to oncology nursing and research in the areas of quality of life, palliative care, and spiritual care. In 2007, Dr. Ferrell completed a master’s degree in theology, ethics, and culture from Claremont Graduate University and, in 2009, she and Dr. Puchalski led a national consensus conference on improving the quality of spiritual care in palliative care.

 

Making Health Care Whole

Integrating Spirituality into Patient Care

By Christina M. Puchalski, Betty Ferrell

Templeton Press

Copyright © 2010 Christina M. Puchalski and Betty Ferrell
All rights reserved.
ISBN: 978-1-59947-350-5

Contents

List of Figures,
List of Tables,
Foreword by Rachel Naomi Remen, MD,
Preface,
PART 1 INTRODUCTION AND OVERVIEW,
1 Why Spirituality in Palliative Care,
2 Guidelines/Preferred Practices for Spiritual Care,
3 Spirituality: Defining the Concept,
4 Background: Historical Context of Spirituality in Palliative Care,
5 Professional Standards for Spiritual Care,
PART 2 RECOMMENDATIONS FOR IMPLEMENTING NCP GUIDELINES AND NQF PREFERRED PRACTICES,
6 Spiritual Care Models,
7 Spiritual History Taking and Assessment of Patients and Families,
8 The Spiritual Treatment or Care Plan,
9 Interprofessional Considerations: Roles and Team Functioning,
10 Training and Certification,
11 Personal and Professional Development,
12 Quality Improvement,
13 Conclusion,
Acknowledgments,
Appendix A: Definitions Related to Spiritual Care,
Appendix B: Sample Spiritual Histories and Assessments,
Appendix C: Examples of Spiritual Screening Questions That Can Be Integrated into,
Hospital Intake Forms,
Appendix D: Spirituality Cases,
Appendix E: Professional Chaplaincy,
Appendix F: Listing of Research Instruments,
Appendix G: Listing of Curricula in Spirituality and Health,
Appendix H: Spirituality Centers and Other Relevant Websites,
References,

CHAPTER 1

Why Spirituality in Palliative Care

I realized that we needed not only better pain control but better overall care. People needed the space to be themselves. I coined the term "total pain," from my understanding that dying people have physical, spiritual, psychological, and social pain that must be treated. I have been working on that ever since. Cecily Saunders, MD (as quoted in Smith, 2005)

Cecily Saunders, the founder of hospice and palliative care, speaks to the core of what spirituality means in the care of all patients, particularly those suffering from chronic illness and facing their own death. People deserve "total care" where they can speak authentically about their illness and where their spiritual needs as well as their physical, social, and emotional needs are addressed. Illness, aging, and the prospect of dying can trigger profound questions about who people are, what their life has meant, and what will become of them during the course of their illness and perhaps after they die. Who am I? How will I be remembered? These questions have the same importance in patients' lives as do questions about treatment. Illness and dying are essentially spiritual processes in that they often provoke deep questions of meaning, purpose, and hope. These questions can trigger a quest for answers. That quest is what many would call a spiritual journey and why some consider palliative care to be a "secular religious movement" (Duffy, 2009).

Viktor Frankl wrote that "man is not destroyed by suffering; he is destroyed by suffering without meaning" (Frankl, 1963). Spirituality helps give meaning to suffering and helps people find hope in the midst of despair. In the midst of suffering, a skillful, caring, and compassionate health care professional can be an important anchor in which the patient can find solace and the strength to move through distress to peace and acceptance.

Studies of Spirituality and Health Outcomes in Palliative Care

Research in palliative care has demonstrated the impact of religious and spiritual beliefs on people's moral decision making, way of life, interactions with others, life choices, and ability to transcend suffering and to deal with life's challenges. Spirituality is broadly defined as that which gives meaning and purpose to life and is often a central issue for patients at the end of life or those dealing with chronic illness (Puchalski et al., 2004; Astrow et al., 2001; King et al., 1994). Every individual makes decisions as to whether life has meaning and value that extends beyond self, life, and death. Dealing with these existential questions focuses on a relationship with a transcendent being or concept (Sulmasy, 1999). Spirituality and religious beliefs have been shown to have an impact on how people cope with serious illness and life stresses. Spiritual practices can foster coping resources (Koenig et al., 2001; Roberts et al., 1997), promote health-related behavior (Powell et al., 2003), enhance a sense of well-being and improve quality of life (Cohen et al., 1996), provide social support (Burgener, 1999), and generate feelings of love and forgiveness (Worthington, 2001). Spiritual beliefs can also affect health care decision making (Silvestri et al., 2003). However, spiritual/religious beliefs can also create distress and increase the burdens of illness (Koenig et al., 1998).

The notion that spirituality is central to the dying person is well recognized by many experts, the most important being those patients who are seriously ill. A 1997 Gallup survey of a random sample of American religious and nonreligious adults showed that people overwhelmingly want to reclaim and reassert the spiritual dimensions when dying. Survey respondents said they wanted warm relationships with their health care providers, to be listened to, to have someone to share fears and concerns with, to have someone with them when they are dying, to be able to pray and have others pray for them, and to have a chance to say good-bye to loved ones. When asked what would worry them, respondents said not being forgiven by God or others, or having continued emotional and spiritual suffering. When asked what would bring them comfort, they reported wanting to believe that death is a normal part of the life cycle and that they would live on through their relationships, accomplishments, or good works. They also wanted to believe that they had done their best in life and that they would be in the presence of a loving God or Higher Power.

It is as important for health care professionals to talk with patients about these issues as it is to address the physical aspects of care. Numerous surveys have shown patients want their caregivers to talk with them about their spiritual needs. In these surveys, 65 to 70 percent of people polled say they want their physicians to address their spiritual issues, yet only about 10 percent report actually having these conversations with their physicians (Ehman et al., 1999; McCord et al., 2004).

Surveys have also indicated that people turn to spiritual or religious beliefs in times of stress and difficulty. Particularly when people are faced with a life-threatening illness, questions about meaning and purpose in the midst of suffering arise. It is not uncommon for people to question God, fairness, and life choices. People often undertake a life review, where issues related to their life, relationships, and self-worth might arise. Spiritual issues include hopelessness, despair, guilt, shame, anger, and abandonment by God or others. These issues can provoke deep suffering, which can result from people feeling alienated from themselves, others, God, or from their ultimate source of meaning.

Suffering

Patients confronted with mortality, limitations, and loss wrestle with questions about life's purpose and meaning amidst suffering. But what is suffering? Cassell (1991) defined suffering as the state of distress brought about by an actual...