Inge B. Corless, PhD, RN, FAAN To the Instructor: This Power Point presentation is a suggested slide presentation that can be used for lecture. It was created from the information in Instruction Material/ Content section of the TNEEL CD-ROM. If the presentation includes some audio sound and video clips, click the red button to play the sound or video. For some sets of slides, there will be suggestions and detail descriptions throughout this Power Point presentation in the “Notes Page.” These notes are for instructor’s use only, and are not intended for distribution to the students. Thank you for using TNEEL. We welcome any suggestions. Inge B. Corless, PhD, RN, FAAN

Introduction Facing death prompts human beings to consider spiritual or existential issues. Spirituality is both concrete and elusive. Spirituality is concerned with questions of meaning and, in particular, the meaning of one’s life. Spirituality is often neglected in end-of-life care when the focus is on “heroics.” Spirituality is both concrete and elusive. It is concrete in that it is often amalgamated with readily observed manifestations such as religious observances. It is elusive in that it encompasses far more than organized expressions of belief such as occur with religion or even a sect.1 Spirituality is concerned with the way people live their lives; questions of meaning and, in particular, the meaning of one’s life. Children may ask questions such as "Am I dying?" "What is death like?" Spirituality also is an approach to life that regards living creatures with reverence and awe. With regard to the end of life, individuals with a profound spirituality appear to come to life’s closure with greater equanimity. Spirituality is often neglected in end-of-life care when the focus is on “heroics.” 2 And even when terminal status is acknowledged, spiritual care may not be offered. The impact of such lapses will be discussed after a further consideration of the definition of spirituality.

Assumptions All people possess a spiritual nature. The development of that spiritual component varies with the individual. Expression of one’s spirituality occurs in a variety of ways. .All people possess a spiritual nature. .The development of that spiritual component varies with the individual. .Expression of one’s spirituality occurs in a variety of ways.

Case Example: Ms. Galea Dr. James, an advance practice nurse, had been caring for Dorothy Galea, a sixteen-year-old with recurrent leukemia. Dorothy had decided to spend her final days in the Hospice to spare her younger brothers and sisters the memory of her dying at home. Dorothy arranged with Dr. James to give her parents a tour of the Hospice. Mrs.Galea, Dorothy’s mother, said to Dr. James at the end of the tour: ”Of course, like us, you are Catholic." Dr. James replied that she was not. Prior to any further discussion, the elevator door opened and Dorothy and her parents left. Questions How might Dr. James have handled this situation? Is Dr. James' religion important in this instance? To whom? Should Dr. James follow up on this discussion? If so, should the discussion entail religion and spirituality? Prior to a consideration of the definition of spirituality, a brief example may illuminate some of the issues to be considered. Dr. James a doctorally prepared advance practice nurse, had been caring for Dorothy Galea, a sixteen-year-old with recurrent leukemia. While admitted to the pediatric floor, Dorothy would go over to the Hospice whenever movies or other entertainment occurred. She had decided she wanted to spend her final days in the Hospice so as to spare her younger brothers and sisters the memory of her dying at home. Prior to discharge home, Dorothy arranged with Dr. James to give her parents a tour of the Hospice. At the conclusion of the tour Mrs. Galea said to Dr. James, "of course like us you are Catholic." Dr. James replied that she was not. Prior to any further discussion, the elevator door opened and Dorothy and her parents left. Dr. James had the impression that Mrs. Galea was offended that Dr. James was not a practicing Catholic. How might Dr. James have handled this situation? Is Dr. James' religion important in this instance? To whom is it important? Should Dr. James follow up on this discussion? If so, should the discussion entail religion and spirituality?

Defining Spirituality I Spirituality is the human dimension that transcends the biological, psychological and social aspects of living. Pace & Stables note that spirituality is a factor that: “Helps the dying individual maintain a sense of well-being when faced with physical, perceptual and emotional losses.” This definition focuses on what spirituality does, not what it is. Ley & Corless: “(Spirituality) manifests itself as a state of “connectedness” to God, to one’s neighbors, to one’s inner self.” Pace, J. C., & Stables, J. L. (1997). Correlates of spiritual well-being in terminally ill persons with AIDS and terminally ill persons with cancer. J Assoc Nurses AIDS Care, 8(6), 31-42. Ley, D. C., & Corless, I. B. (1988). Spirituality and hospice care. Death Stud, 12(2), 101-110. Pace and Stables note that spirituality is a factor that “helps the dying individual maintain a sense of well-being when faced with physical, perceptual and emotional losses” (p. 31). This definition focuses on what spirituality does, not what it is. The following definitions are helpful in delineating the nature of spirituality. Spirituality is the human dimension that transcends the biological, psychological and social aspects of living. It is the “agent” for integration towards a person’s identity and integrity. In very general terms the spiritual dimension is the “agent” for an individual’s existence as a person (p. 116-17). This definition combines elements of essence and agency. Another definition, by Ley and Corless,6 also captures this duality. Spirituality “…manifests itself as a state of “connectedness” to God, to one’s neighbors, to one’s inner self. It has variously been described as man’s relation to the infinite, as the capacity to be energized from beyond ourselves, and as the basic quality of a person’s nature—what the person is and what the person does” (p.101). and finally, “Spirituality is concerned with the transcendental, inspirational and existential way to live one’s life as well as, in a fundamental and profound sense, with the person as a human being” (p.76).

Defining Spirituality II The 1971 White House Council on Aging defined spiritual concerns as: “The human need to deal with sociocultural deprivations, anxieties and fears, death and dying, personality integration, self-image, personal dignity, social alienation, and philosophy of life.” The breadth of this definition melds psychosocial considerations with those of the spiritual domain. The 1971 White House Council on Aging defined spiritual concerns as “the human need to deal with sociocultural deprivations, anxieties and fears, death and dying, personality integration, self-image, personal dignity, social alienation, and philosophy of life” (p. 93-94). The breadth of this definition melds psychosocial considerations with those of the spiritual domain. In contradistinction, spiritual needs have been depicted as “factors necessary to establish and maintain a relationship with God, however ‘God’ is defined by the individual,” whereas spiritual well-being is portrayed as “the affirmation of life in a relationship with God, self, community, and environment that nurtures and celebrates wholeness.” Highfield and Cason9 capture elements of both these approaches when they state: The spiritual dimension of man encompasses the need for finding satisfactory answers to his ultimate questions about the meaning of life, illness and death. His deepest relationships with others, himself, and with God are the center of his spiritual dimension (p. 187).

Definitions III Spiritual needs have been depicted as: “Factors necessary to establish and maintain a relationship with God, however ‘God’ is defined by the individual.” Spiritual well-being is portrayed as “the affirmation of life in a relationship with God, self, community, and environment that nurtures and celebrates wholeness.” Ellerhorst-Ryan, J. (1985). Selecting an instrument to measure spiritual distress. Oncol Nurs Forum, 12(2), 93-94, 99

Spirituality vs. Religion I How do these definitions of spiritual concerns, needs,and well-being, differ from definitions of what it means to be religious? “To be religious is to be conscious of the connection to an extra-mundane authority that’s beyond oneself, beyond one’s parents, beyond one’s society.” “Being religious also involves an openness to experience and to love, a capacity and desire to ‘introject,’ to take in the being and goodness that’s made available to us.” Ulanov, A. B. (1975). Religion and the Unconscious. Philadelphia: Westminster Press. How do these definitions of spiritual concerns, needs, well-being, and dimension differ from definitions of what it means to be religious? “To be religious is to be conscious of the connection to an extra-mundane authority that’s beyond oneself, beyond one’s parents, beyond one’s society” (p. 315). While this statement bears some similarity to the definition given for spiritual needs, it addresses solely the consideration of “an extra-mundane authority” and thus might be useful in discriminating religious from spiritual. The explication of the concept by the same author, however, brings a return to the domain noted previously for spiritual. “Being religious also involves an openness to experience and to love, a capacity and desire to ‘introject,’ to take in the being and goodness that’s made available to us” (p.315). (Ulanov, 1975)

Spirituality vs. Religion II “Spiritual” is defined by Webster as: “Things of a spiritual, ecclesiastical, or religious nature; of breathing, of wind; of or relating to, consisting of, or affecting the spirit; of or relating to sacred matters.” “Spirituality” is defined as: Something that in ecclesiastical law belongs to the church or to a cleric as such; clergy; sensitivity or attachment to religious values; the quality or state of being spiritual. By permission. From Merriam-Webster's Collegiate Dictionary, Tenth Edition © 2001 by Merriam-Webster, Incorporated. Is the dictionary of any assistance in resolving the question of definitional specificity? “Spiritual” is defined by Webster10 as “things of a spiritual, ecclesiastical, or religious nature” (p 1137). “Spiritual” is also defined as “of breathing, of wind; of or relating to, consisting of, or affecting the spirit; of or relating to sacred matters” (p. 1137). Its derivation from the Greek “pneuma” suggests a duality of mind and body. The Hebrew “ruach” indicates a breathing into the body as God breathed his breath into Adam, thereby giving life. “Spirituality” is defined as… 1.Something that in ecclesiastical law belongs to the church or to a cleric as such; 2.Clergy; 3.Sensitivity or attachment to religious values; 4.The quality or state of being spiritual. The terms spiritual and spirituality are defined with reference to ecclesiastical and religious matters and thus do not facilitate discrimination of the domain essential to each. Perhaps the definition of religion will be helpful to the recognition of this distinction.

Spirituality vs. Religion III The terms spiritual and spirituality are defined with reference to ecclesiastical and religious matters. “Religion” is noted to be: The service and worship of God or the supernatural; Commitment or devotion to religious faith or observance; A personal set or institutionalized system of religious attitudes, beliefs, and practices. “Religion” is noted to be… 1.The service and worship of God or the supernatural; 2.Commitment or devotion to religious faith or observance; 3.A personal set or institutionalized system of religious attitudes, beliefs, and practices. The first definition of religion as “the service and worship of God or the supernatural” distinguishes “religion” form “spiritual” – or does it? Further inquiry is required. What is meant by the term “spirit”? The Interpreter’s Dictionary of the Bible defines spirit as “a term applied to God, gods, incorporeal beings generally and to the divine element in human personality.” (p.423) Eliade expands the interpretation of spirit to “incorporate” soul, shadow and shade as interchangeable terms (p.25). Both the Interpreter’s Dictionary and Eliade include dimensions internal and external to the individual. Although “spirit” also embraces such concepts as breath, breathe, and to blow, it is elaborated in Webster as: 1.An animating or vital principle held to give life to physical organisms; 2.A supernatural being or essence; 3.Temper or disposition of mind or outlook, especially when vigorous or animated; 4.The immaterial intelligent or sentient part of a person; 5.A. The activating or essential principle influencing a person B. An inclination, impulse or tendency of a specified kind (p. 1134).

Spirituality vs. Religion IV Beliefs Practices Rituals Personal Integration Expression Denominational Life Community Religious Life Response to Others Reprinted from D. M. Le Maire, Spirituality (Alexandra VA: Children’s Hospice International, 1985). Permission: Children’s Hospice International The second definition of spirit as a supernatural being or essence, emphasizes the “God without” aspect and is consonant with the definition for religious. The fourth definition, “the immaterial intelligent or sentient part of a person,” underscoring a “God within,” is more congruent with the concept of spirituality. Leaving aside for the moment the philosophical and theological argument of whether God is outside the person or within, the water is once again muddied by the tautology inherent in these definitions. Bellah et al, while making a similar distinction, do so in an exposition of the differences between internal and external religion: Radically individualistic religion, particularly when it takes the form of a belief in cosmic selfhood, may seem to be in a different world from conservative or fundamentalist religion. Yet these are the two poles that organize much of American religious life. To the first, God is simply the self-magnified; to the second, God confronts man from outside the universe. One seeks a self that is finally identical with the world; the other seeks an external God who will provide order in the world. Both value personal religious experience as the basis of their belief (p.235, used with permission, University of California Press). Clearly, definitions abound but perspicacity is rare. The Rev. David Duncombe suggests that in most theological discussions, spiritual refer to an inner religiosity, whereas religious refers to the behavioral expression of that inner reality. This distinction seems a useful beginning. A schema provided by Le Maire and presented in Figure 1 augments this proposition (p.41). Spiritual - Interior Life Homo Ethicus

Stages of Spiritual Development Children: Magical view of life. First 12 years: Transition to a reality base. Dependence: Adolescence when the individual feels a personal relationship with God who loves the individual unconditionally and serves as an idealized parent. Independence: Late adolescence and young adulthood. Spirituality is found from within and spirituality and religiosity are differentiated. Interdependence: Later in adult life. Individuals “are able to read scriptures simultaneously at the literal, allegorical, conceptual and inspirational levels.” Unity: Few Adults achieve this final stage; “awareness of the oneness of all existence.” McLennan, S. (1999, Dec. 19). The spiritual life - a journey, not a destination. The Boston Globe, p. 2. McLennan states, “The spiritual life is a process, not a resolution; it’s a journey, not a destination.” McLennan describes the stages of faith development in concert with human development. 1.Children have a magical view of life as filled with fairies, demons, superheroes and villains. 2.In the first 12 years, there is transition to a reality base. (Is there a Santa Claus?) --- shift from an all-powerful God, who directs everything, to a cause and effect God, who can be influenced by good deeds, promises, and vows. 3.Dependence, the third stage, occurs in adolescence when the individual feels a personal relationship with God who loves the individual unconditionally and serves as an idealized parent. McLennan (1999) notes that “this is a classic time for susceptibility to cult involvement. Many adults remain happily at this stage the rest of their lives.” 4.Independence - this stage occurs in late adolescence and young adulthood. Spirituality is found from within and spirituality and religiosity are differentiated. “God or ultimate reality now tends to become more impersonal and distant.” 5.Interdependence occurs later in adult life. At this stage individuals “are able to read scriptures simultaneously at the literal, allegorical, conceptual and inspirational levels.” At this stage people “are also open to dialogue between different traditions because they understand that truth is multidimensional.” 6.Few adults achieve the final stage - unity. There is the “awareness of the oneness of all existence.” Individuals at this stage find it easier to speak with “mystics of other religious traditions, who have similar perceptions, than to people at other stages within their own tradition, who don’t.” (p.2, used with permission: Wm. L. (Scotty) McLennon, Jr.).

Spiritual Well-being Spiritual well-being (SWB) depicts a state of equanimity, of what some would call “grace.” “Indications of SWB may include a satisfying philosophy of life, supportive relationships with others, realistic orientations toward loss and deprivation, wholesome self concepts and ethical conduct.” Pace, J. C., & Stables, J. L. (1997). Correlates of spiritual well-being in terminally ill persons with AIDS and terminally ill persons with cancer. J Assoc Nurses AIDS Care, 8(6), 31-42. Spiritual well-being depicts a state of equanimity, of what some would call “grace,” Vaughn describes SWB (spiritual well being) as a “sense of inner peace, compassion for others, reverence for life, gratitude and appreciation of both unity and diversity.(p. 20-21)” Pace and Stables cite Moberg when they state “Indications of SWB may include a satisfying philosophy of life, supportive relationships with others, realistic orientations toward loss and deprivation, wholesome self concepts and ethical (Moberg, 1974).” (p. 33). Pace and Stables3 note that SWB is frequently described as multidimensional with the existential and religious components being cited most often. They opine that “the existential dimension focuses on meaning and purpose in life, and the religious dimension focuses on one’s relationship with God” (p.35). Hall21 provides an example of a man who does not separate these concepts rather one evolves from the other. Religion is a lot about how I express my spirituality. It gives me a fundamental belief structure from which to work. But now I have developed my personal rituals - I sit and drink tea every morning. I facilitate a support group. I work with children. Those are expressions of my spirituality. My spirituality has become more and more about understanding my commitments not only to God but to other people (p.84). Hall21 too perceives the interrelationship. She states “My research findings suggest that the link between religion and spirit is the search for meaning that leads people on a quest. This search can culminate in an understanding of self, others, God, and the meaning of their lives” (p.84). (Pace & Stables, 1997)

Transcendence People achieve transcendence by: Giving to the world creatively through family/significant others, occupation, and creative works; Experiencing the world through receptiveness to others and to the environment; Adopting an attitude of acceptance when faced with a predicament such as an unchangeable situation. Some individuals at the end of life are able to transcend their circumstances and achieve a harmony and integrity that enriches the quality of their lives. Spirituality has a role to play in achieving such an outcome. This delineation by Hall is similar to descriptions of self-transcendence by Frankl and other theorists. As Mellors, Riley, and Erlen note “Frankl23 claims that people transcend by: 1) giving to the world creatively through family/significant others, occupation, and creative works; 2) experiencing the world through receptiveness to others and to the environment; and 3) adopting an attitude of acceptance when faced with a predicament such as an unchangeable situation” (p.60). Life never ceases to have meaning for the person because there is always the opportunity to choose the manner in which one faces adversity. From this perspective, self-transcendence is both a meaning-discovering and a meaning-giving activity. Further, self-transcendence is considered part of what it means to be human. It is also considered a developmental characteristic “that expands one’s boundaries of the self to take on broader life perspectives, activities, and purposes that help one discover or make meaning of one’s life," (p.122) (Reed, as cited in Mellors, ). They continue “self-transcendence is characterized by an increased understanding of self and moving beyond self that is associated with rising above crisis situations such as physical and emotional pain due to ill health, loss and threat of loss. Self-transcendence often is accompanied by a sense of feeling uplifted; a physical lightness, and relief of burden; a closeness to others, to environment and to God; a renewed commitment to life purpose; and an acceptance of inescapable circumstances” (p.60). Some individuals at the end of life are able to transcend their circumstances and achieve a harmony and integrity that enriches the quality of their lives. Spirituality has a role to play in achieving such an outcome. That being said, what are the spiritual needs and concerns of persons at the end of their lives?

Spiritual Needs of those with Far-advanced Disease Consensus exists in the literature regarding the spiritual needs of individuals who are dying. These include: The need for meaning, relatedness, hope, to give and receive love, for creativity, a sense of forgiveness, trust, and purpose of life. These needs are intrapsychic, interpersonal, and existential. Some, if not all, may be considered spiritual. The approaches taken to meeting these needs may be spiritual, religious, denominational, and ritual. An amazing consensus exists in the literature regarding the spiritual needs of individuals who are dying. These spiritual needs include the need for meaning, relatedness, hope, and love; the need for meaning and purpose of life, to receive love, to give love, and for hope and creativity; the search for meaning, sense of forgiveness, need for love and for hope; and for forgiveness, love, hope, trust, and meaning and purpose of life. These needs are intrapsychic, interpersonal, and existential. And though the term spiritual in Le Maire’s16 model refers to the interior life, it also contains the concept of the ethical person. thus, some of these needs of terminally ill persons, if not all, may be considered as falling within the spiritual domain. The approaches taken to meeting these needs may be spiritual, religious, denominational, and ritual.

Principles of Care “Assumptions and Principles of Spiritual Care” This is not a clinical standard of care document. It does provide principles for care of persons at the end of their lives and is a useful guide for all health care providers. Special note: Before the health care provider can attend to others, he or she must understand his or her own spirituality and its influence on professional practice and personal life. The role of the healthcare provider is not merely to call the chaplain when a patient expresses religious and spiritual concerns, rather it is to listen to the patient in order to help the patient assess how his or her needs might best be addressed. A document by Corless and her colleagues7 who constituted The Spiritual Care Work Group of the International Work Group on Death, Dying and Bereavement, is useful to addressing the needs of persons at the end of their lives. “Assumptions and Principles of Spiritual Care” are linked to this page. As will be noticed, this document is not a clinical standard of care . It does provide principles for care of persons at the end of their lives and is a useful guideline for all health care practitioners. Note that before the healthcare provider can attend to others, he or she must understand his or her own spirituality and its influence on professional practice and personal life. Note: Assumptions and Principles of Spiritual Care article is saved along with this document in your local drive from TNEEL-NE. The file is “Assmp&PrinSpiritCare.pdf”. Adobe Acrobat Reader is required to view this article.