Making Health Care Whole

Integrating Spirituality into Patient Care

Christina Puchalski, Betty Ferrell

• Publisher: Templeton Press
• Year: 2011
• ISBN:
  9781599473710
• Topic: Medicina
• Subtopic: Teoria, pratica e riferimenti medici

In the last fifteen years, the field of palliative care has experienced a surge in interest in spirituality as an important aspect of caring for seriously ill and dying patients. While spirituality has been generally recognized as an essential dimension of palliative care, uniformity of spiritual care practice has been lacking across health care settings due to factors like varying understandings and definitions of spirituality, lack of resources and practical tools, and limited professional education and training in spiritual care.

In order to address these shortcomings, more than forty spiritual and palliative care experts gathered for a national conference to discuss guidelines for incorporating spirituality into palliative care. Their consensus findings form the basis of Making Health Care Whole. This important new resource provides much-needed definitions and charts a common language for addressing spiritual care across the disciplines of medicine, nursing, social work, chaplaincy, psychology, and other groups. It presents models of spiritual care that are broad and inclusive, and provides tools for screening, assessment, care planning, and interventions. This book also advocates a team approach to spiritual care, and specifies the roles of each professional on the team. Serving as both a scholarly review of the field as well as a practical resource with specific recommendations to improve spiritual care in clinical practice, Making Health Care Whole will benefit hospices and palliative care programs in hospitals, home care services, and long-term care services. It will also be a valuable addition to the curriculum at seminaries, schools of theology, and medical and nursing schools.

1 INTRODUCTION AND OVERVIEW

Part 1 sets forth the background, research, historical, ethical, and philosophical contexts and organizational standards in place that support the importance of spirituality in palliative care and health care in general.

1 Why Spirituality in Palliative Care

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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 or perceived threat to the integrity or continued existence of the whole person. Suffering is “an anguish that is experienced, not only as a pressure to change, but as a threat to our composure, our integrity, and the fulfillment of our intentions” (Cassell, 1991, p. 231). A central notion in this definition is that those who suffer submit (or are forced to submit) to a particular set of circumstances outside of their control. Such a situation has the potential to seriously erode one’s autonomy, and foster hopelessness and loss of control.

Thus, spiritual suffering may be manifested as inner distress, grief/ loss, hopelessness, worry, and isolation (Ferrell & Coyle, 2008). Wright (2005) described several experiences of suffering, including the alteration of one’s life and relationships with serious illness; the forced exclusion from everyday life; the strain of trying to endure; the longing to love or be loved; enduring acute or chronic pain; and experiencing conflict, anguish, or interference with love in relationships.

Spiritual suffering may also be manifested as physical pain, depression or anxiety, social isolation, and spiritual or existential distress. Pain is multidimensional and may be exacerbated or relieved by attention to the other dimensions of suffering. Spiritual suffering or pain may manifest within various domains of the patient’s experience, be it physical (e.g., intractable pain), psychological (e.g., anxiety, depression, hopelessness), religious (e.g., crisis of faith, anger at God), or social (e.g., disintegration of human relationships). Figure 1 demonstrates how patients may have varying patterns of suffering. One patient’s suffering may be predominantly spiritual; another’s may be mostly psychological.

Suffering is difficult to diagnose based on symptoms alone. For example, spiritual pain is the combination of these aforementioned symptoms and characteristic behaviors, including patients who are desperate to escape their situation, patients with expectations of caregivers that are impossible to meet, patients who continue to try new therapies in the absence of any benefit, and patients who require escalating doses of analgesics and sedatives despite no apparent benefit even when these measures are clearly counterproductive. These behaviors often evoke descriptions such as “suffering” or “anguish,” which can signal the need for psychosocial and/or spiritual intervention (McGrath, 2002).

Some studies suggest that existential and spiritual issues may be of greater concern to patients than pain and physical symptoms (Breit-bart et al., 1996; Field & Cassel, 1997). Thus, a patient’s report of pain may be referring to pain in any of these dimensions. Unless the health care practitioner is attentive to all the dimensions of suffering—the psychosocial and spiritual, as well as the physical—the entire focus of care may be on physical pain while neglecting the spiritual or existential distress.

Frank was a sixty-eight-year-old male dying of pancreatic cancer. He was in excruciating pain and receiving high doses of opioids, sedatives, and other pain medications. Despite the medication he continued to cry out in pain, rating his pain a “100” on a scale of 1–10. Eventually, the nursing staff became uncomfortable with the high dose of medications given and the continued pain complaints. I (Puchalski) went into his room, meeting him for the first time and asked about his life. He was reticent to tell me any personal details. I asked him if he had any spiritual resources that might help him. He readily answered that he was an Episcopalian but then got quiet and said he needed more pain medication. I was on duty for the whole week in the hospice, so I decided to again pursue this question the next day when I saw him. This time he told me he stopped going to church a long time ago for a “personal reason.” I shared this information in the interdisciplinary team rounds and asked the chaplain to also work on this issue with Frank. Over the next few weeks, Frank revealed to the chaplain that he had left the church because he was a homosexual and thought they would disapprove of him. He felt isolated for many years, and now that he was dying, he thought God would not be there for him. The chaplain shared this information with the medical team and suggested ways each of us could work with Frank on the spiritual issues of guilt and the need for reconciliation and reconnection with his faith community. The chaplain worked with Frank, as did the rest of us on the team, being present to him, affirming him, and letting him know he was loved. Eventually, Frank was able to see a priest, receive the sacraments, and feel a sense of acceptance by the church community. He no longer needed huge doses of pain medication. Several months later he died in peace.

FIGURE 1 Profile of Suffering

Among patients with life-threatening illness, sensing oneself as a burden to others seems to be an important theme related to quality of life, optimal palliative care, and maintenance of dignity at the end of life (Cohen & Leis, 2002; Cousineau et al., 2003; Weisman, 1972). Personal or individual autonomy—especially in Western society—is often conflated with the notion of being a whole person, so that dependency can be seen or experienced as threatening the integrity of personhood itself. Suffering can threaten the intactness of the person (Cassell, 1982). Thus, it is important to address spiritual concerns of making meaning in illness and finding a sense of dignity and purpose to help others overcome that sense of burden to others.

Spiritual Transformation in the Midst of Suffering

There are many stories and considerable anecdotal evidence indicating that some patients are able to understand their illness as an opportunity for growth and to see their life and their relationships in a way that enables them to find enhanced meaning in life that is more profound and gratifying than life prior to their illness (Puchalski, 2004). Tsevat et al. (1999) conducted focus groups with patients with HIV/AIDS and reported that many found their lives were better than before their diagnosis. Tsevat also found that most patients with HIV/AIDS were at peace with God and the universe. These researchers (Cotton et al., 2006) also demonstrated that the majority of patients with HIV/AIDS reported that spirituality is an important factor in their lives, as most indicated some sense of meaning/purpose in their lives and reported deriving comfort from their spiritual beliefs. The majority of our patients with HIV/AIDS belonged to an organized religion but participated more often in nonorganized religious activities (e.g., prayer, meditation). Similarly, patients with advanced cancer who derived comfort from their religious and spiritual beliefs were more satisfied with their lives, were happier, and reported less pain (Yates et al., 1981). Women with breast cancer said that their spiritual beliefs helped them cope with their illness and with facing death and that they “became more spiritual” as a result of their illness, reflecting a transformative process (Roberts et al., 1997).

Health care professionals also write of the transformation they experience as a result of interactions with their patients. By experiencing personal suffering, professionals may be better able to relate to and be compassionate with patients. Bolen (1996), a psychiatrist who works with individuals with severe chronic and terminal illnesses, uses the phrase “expansion of the soul” to describe the transformation that enables an empathic and compassionate connection to the suffering. Albert Schweitzer (1931) wrote of a similar transformation after he developed a serious illness. He described the profound change that he experienced spiritually after he confronted his possible death from the illness. He recognized that those who have experienced suffering may be changed spiritually, and part of the change is being awakened to a sense of duty to help others overcome their suffering. Thus, suffering becomes the trigger for spiritual transformation for the patients, and often for the clinician, which then can lead to compassion for self and for others who suffer. In our research at the City of Hope in the area of family caregivers, we have often heard stories from family members who find great meaning amidst their suffering. A father of a young boy dying of cancer said that “if this weren’t the worst experience of my life, it would be the best.” The father described how having a child with serious illness was a parent’s worst nightmare, yet through this experience he and his wife had experienced a great strengthening of their faith, love for each other, appreciation of their church and community, and an altered view of what was truly important in life.

Caregivers can also be transformed by the suffering of loved ones or patients. When my (Puchalski) fiancé, Eric, was diagnosed with cancer, I remember thinking that my life would never be the same. It was only years later that I recognized how true that perception was, that in many ways, the suffering I witnessed and experienced myself triggered personal and spiritual changes within me that enabled me to become a better physician. Like the father of the young boy above, I experienced a deepening of my faith. I also experienced a greater commitment to my vocation as a physician and an overwhelming sense of the beauty of humanity, life, and God. I no longer feared suffering but recognized it as a natural part of life and an opportunity for growth and transition. I became passionate in my desire to support others in the midst of their suffering. Service became the foundation for my work, rather than fixing or solving others’ problems; for with suffering there are no quick fixes, just patient love and partnership while the suffering patient finds the answers amidst the suffering and anger as well as joy and transformation.

Medical and nursing professionals have written about their obligation to relieve suffering. Many religious leaders and practitioners from other spiritual disciplines write of suffering as a spiritual process. While it may be possible to relieve physical suffering with medication, is the relief of spiritual suffering possible or even desirable? Perhaps spiritual care calls us to bear witness to and accompany people in their suffering and provide support as patients find meaning in the midst of that suffering and eventually integrate the suffering into their lives and become transformed by it.

Patients’ search for meaning and authenticity may also affect how they comply with pain regiments. There are many anecdotal stories of patients who will choose to be in physical pain to be alert enough to spend time with their families or to be awake enough to finish the book they are writing or the poems they are creating for their children. Thus, people will place those things they hold sacred—family, God, dreams, projects—above their physical needs and even the need for pain relief. This challenges our paradigms of good quality of life and living with dying and death. Good quality care occurs when patients are able to express what is holy to them, gives them meaning, and helps them transcend their suffering, even if not necessarily relieving it (Balducci, 2008). Thus, the clinician’s role becomes one of a partner or companion on the journey, rather than fixer or alleviator. One of my (Ferrell) earliest hospice “teachers” was a young woman who was dying of ovarian cancer and leaving behind a loving husband and two beautiful children. This family was very involved in a fundamentalist Christian church and they were greatly comforted by the support of their church. This patient spoke of the pain of knowing she was leaving her children without a mother, yet she was confident that they would remember her as a model of “what a good Christian woman should be.” As a new hospice nurse, I was still struggling with how I could “fix” things in a situation to make things “better” and to “do” for this family rather than “be with” them on this journey. One day I arrived for my visit and found the patient alone and eagerly waiting for me. I was ready—ready to “do” all the things I thought would be important, such as assess her pain, talk with her about her death, or offer to bathe her or wash her beautiful hair. Instead, when I asked her what I could do, she asked if I could go outside and plant tulip bulbs! I was taken off guard by this request. Planting tulips wasn’t quite in my job description or on my “list” of what I thought hospice nurses did. The patient explained that each year she planted tulips and that her children loved to see them bloom in the spring and that while she was unable to go outside or kneel on the ground, if I could do this she knew her children would be so comforted when the tulips bloomed and they would know she was thinking of them from heaven. That day, I planted tulips, occasionally pausing to look behind me at my teacher watching carefully through the window

Historical Perspectives

Historically, spirituality was an integral part of the mission and practice of health care institutions and providers. The medical model of practice in healing prior to the 1900s was service-oriented compassionate care. Medical care was primarily supportive and palliative, with limited options for curing disease. Healers utilized a holistic approach of physical, psychological, social, and spiritual care. The first hospitals in the United States were started by religious and service organizations whose service and calling were manifest in a focus of care on the whole person. Men and women choose careers in the health care professions out of a calling to care for others, a desire to serve, and a commitment to make a difference in the patients’ well-being (Puchalski & Lunsford, 2006).

With the development of technology in the twentieth century, a biomedical model emerged that focused on “cure” as the leading practice in the view of the western world. The philosophy of present medicine began with René Descartes in the nineteenth century. Descartes alleged that the world operated according to mechanical laws without mention to meaning and purpose. In medicine, Flexner (1910) reported that there was no evidence to support the connection of religion and health. As a result, discussion of spirituality and religion fell out of favor in the study and practice of medicine (Sulmasy, 2006).

In the second half of the twentieth century, there was a resurgence in the interest in spirituality and holistic care with the advent of the religious healing practices, as well as mind-body and integrative practices. Studies that demonstrated an association between spirituality and health triggered the field of medicine to begin to explore the importance of this area in the care of patients. Also, in the latter part of the twentieth century, hospice care became a movement based on the awareness that healing is not just about cure and that people with chronic illness and those facing death could be healed even in the absence of a curative intervention. This healing stemmed from the internal work by the patient to deal with fundamentally spiritual issues about meaning, purpose, and suffering. Healing manifested as transcending the suffering to a place ...