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Spirituality

SPIRITUALITY AND PALLIATIVE CARE

Update: June 16, 2009

MODULE OVERVIEW:

Religion and spirituality are among the most important cultural factors that give structure and meaning to human values, behaviors and experiences (Lukoff, Lu & Turner [1995] as cited in Mueller, Plevak, & Rummans [2001], p. 1225.). For patients at the end of life, spiritual and religious concerns may be stirred or made stronger; they may question their faith or they may examine it more in depth. According to Dr. Christina Puchalski of the Center to Improve Care of the Dying, “spirituality is important during all phases of one’s health and illness, but spiritual and religious factors plan an especially prominent role in a patient’s experience with terminal illness, the dying process and death.” This module discusses the concepts of spirituality and religion, their importance in the care of patients at the end-of-life. Techniques to aid in spiritual healing are presented along with tools for conducting a Spiritual Assessment.

“Illness is both soul-shaking and soul-evoking for the patient and for all others for whom the patients matters. We loose innocence, we know vulnerability, we are no longer who we were before this event, and we will never be the same.”

(Source: Bolen, J.S. (1996). Close to the bone: Life-threatening illness and the search for meaning. New York: Touchstone. p. 14).

Learning objectives:

At the completion of this session, the student will be able to:

1. Define spirituality.
2. Compare and contrast the meaning of spirituality and religion.
3. Develop a sensitivity to and respect for patients' individual belief systems (regardless of their own)
4. Cite examples of spiritual pain in terminally ill patients.
5. Cite examples of spiritual healing in terminally ill patients.
6. Recognize that religion may contribute to both spiritual healing and spiritual pain.
7. Recognize the relationship between pain and spiritual/psychological healing.
8. Incorporate spiritual concerns in initial assessments and in treatment plans.
9. Recognize symptoms/behaviors which may be related to spiritual pain.
10. Utilize Chaplain (or other spiritual directors) as part of the interdisciplinary team.
11. Recognize how and when to refer patients for further help with spiritual issues.

Introduction:

During times of illness and crisis people may find that their spiritual needs increase. Often terminally ill patients and their families get strength and hope from their religious and spiritual beliefs. It is important to remember that spirituality is an ongoing issue – a part of a patient’s journey, not something to be addressed at the last minute. Attention to spiritual needs can contribute to an increased quality of life for some patients.

Definitions: 

• Religion:
  • From the Latin religare meaning “to bind together”
  • More structured belief system that addresses universal spiritual questions
  • Provides a framework for making sense of the meaning of existence
  • Religious rites and rituals provides a concrete way of expressing spirituality
  • Most religions expect general adherence to a particular body of beliefs (doctrines) regarding one’s relationship with God (by whatever name)
  • Corporate (group based), structured, organized
    
    
• Spirituality:
  • "Spirituality can be defined as whomever or whatever gives one a transcendent meaning in life. This is often expressed as religion or relationship with God, but it can also refer to other things: nature, energy, force, belief in the good of all, belief in the importance of family and community. The spirit is the essence of the person – what makes him or her unique. The spiritual part of each person can bring wholeness to the emotional, the physical and the intellectual parts of life. One's beliefs and values can profoundly affect how a person copes with illness and with the treatment of illness. So, spirituality is important during all phases of one's health and illness, but spiritual and religious factors play an especially prominent role in a patient's experience with terminal illness, the dying process and death." (Source; Christina M. Puchalski, M.D., Center to Improve Care of the Dying, The George Washington University School of Medicine, Washington, DC, October, 1999, VISION)
    • Transcendent – above and independent of the material universe; used of the Deity
    • Transcend (American Heritage Dictionary, 2nd ed. Boston: Houghton-Mifflin, 1982)
      • definition – 1a - to pass beyond (a human limit); an emotion that transcends understanding
      • definition  – 1b - to exist above and independent of (material experience or the universe)
  • From the Latin spiritualitas meaning “breath”
  • Personalized system of beliefs through which one understands meaning and purpose in life
  • Broad term with varied definitions related to issues of meaning, hope, purpose, relationships, seeking answers to universal questions of life and death
    • one’s search for meaning
    • one’s faith system (Everyone has a faith system; atheism also constitutes a kind of faith system.)
      • personal system of beliefs that give order and meaning to life
      • based on the unseen and the unknown
    • one’s relationship to his/her Higher Power or God
      • may be religious or philosophical, expressed or unexpressed
  • Individualized, personal, experiential and dynamic
  • Free/open
  • May or may not be related to a higher power or a specific set of beliefs
  • Religion and spirituality are not the same but are overlapping concepts.
  • Some people who see themselves as spiritual do not formally endorse a religion.
  • Some people who are religious are not spiritual.
  • Most persons have a spiritual life

Questions of meaning:

Experientially, both religion and spirituality involve search for meaning.

• Ask yourself - What gives meaning to your life?
  • Friends, career, family, nature, art, animals, music, a higher power
• Ask your patient - What gives meaning to your life?
• Recognize what gives meaning to their lives.
• Include their “meanings” in the plan of care
• Illness will raise questions of meaning – why is this happening to me?
  • How will I be remembered?
  • How can I be forgiven for …?
• Acknowledge that there may not be concrete answers to these questions.
• Physicians don’t have to provide the answers – the question itself is an expression of the patient’s grief.

Suffering and spiritual pain:

• Dame Cicely Saunders, the founder of the hospice movement, describes the intense suffering by dying patients and their family members as “total pain,” including physical, social, psychological, and spiritual pain – all interactive.
• Spiritual pain:
  • Loss of meaning, loss of hope
  • Loss of identity due to lost roles, lost activity, lost independence
  • Anger at God, sense of betrayal/abandonment by God, disruption in one’s faith system
  • “Why is this happening to me?”
  • Fear of God/punishment
  • Need for reconciliation/forgiveness
• Characteristics of spiritual suffering (http://endoflife.northwestern.edu/religion_spirituality/pain.cfm)
  • Pain, constant and chronic
  • Insomnia
  • Withdrawal or isolation with spiritual support system
  • Conflict with family members, friends or support staff
  • Anxiety, fear, mistrust of family, friends, physicians, hospice staff
  • Anger
  • Depression
  • Guilt/low self-worth, comments about self-loathing
  • Hopelessness
  • Feeling of failure with life
  • Lack of a sense of humor
  • Unforgivingness
  • Despair
  • Fear/dread
• Religions define suffering in different ways
  • Seen as redemptive – earning you “points” in heaven
  • Seen as “pay back” for particular lifestyle
    • results, in part, from disobedience to God’s law
    • willful separation from God’s commands
    • sin
    • alienation from the will of God
• Religion can contribute to spiritual pain
  • Fostering guilt or a sense of condemnation/rejection (from God and/or the faith community)
  • Doctrines of eternal judgment
  • Discouraging the process of an individualized search for meaning (including the expression of painful feelings and difficult questions)

Spiritual Healing: 

• Spiritual healing, as well as psychological and emotional healing, can happen even when physical cure is not possible.
• Openness to spiritual healing will often be shaped by
  • one’s image of or experience of God – personal, distant, punishing, forgiving
  • one’s image of/experience of the Church – open, rigid, hypocritical, judgmental, supportive, “family”
• Religion can aid in spiritual healing
  • Support communities of faith
  • Offering ways to concretize spirituality
  • Offering responses to universal questions

Spiritual healing – healing vs. cure: 

• Restoration of meaning
  • Finding meaning in the present situation
  • Reviewing meaning that has sustained the patient throughout life
  • Re-evaluating/re-working one’s faith system in light of crisis/dying
• Renewed hope
  • Evolving from hope for a cure to hope for a peaceful death
  • Closure
  • Reconciliation
  • A meaningful legacy
  • Eternal life
• Expressing emotions that accompany grief and loss on the way to final acceptance
  • Denial
  • Anger
  • Sadness
  • Depression
  • Fear
  • Relief
  • Guilt
• Addressing “unfinished business” particularly reconciliation with God, family, friends, and others
• Tapping inner resources and strengths, particularly spiritual and religious
• Opening gradually to a larger, more transcendent understanding of life and meaning beyond individual roles, achievements, etc.
• Healing can come in death.

How can YOU aid in spiritual healing? 

• Be human. Be real. Be honest.
• Be present and listen. Emphasis on being (with), not doing, i.e. you don’t have to fix it, or have “the answers”
• Pain management – frees up the patient to address spiritual/psychological concerns and to bring closure in those areas.
• Acknowledge the reality of spiritual pain – out loud!
• Assess for spiritual pain with simple questions like: “Do you have any spiritual or religious concerns at this point?” and “Are there spiritual resources, or is there a religious community, that could be a help to you at this time?” NOTE: Unexplained physical symptoms, noncompliance with treatment, out-of-proportion emotions or complicated grief may be related to spiritual pain.
• Include spiritual concerns in your treatment plan, for example, a chaplain consult, a recommendation for meditation/relaxation therapy, etc.
• Respect the patient’s belief system, regardless of one’s own feelings about religion and spirituality. Must separate out one’s own convictions, ambivalence or hostility regarding religion and spirituality/
• Be sensitive to patients’ specific religious beliefs and needs around the experience of suffering and death.
• Provide access to spiritual resources by referring to the hospital chaplain, the hospice chaplain, the patient’s parish priest, minister, rabbi, imam, etc.  

Maintaining Hope (Weismann, et.al, 2000):  

• Challenge to those facing death
• Patients want honesty from their doctors regarding their disease and prognosis
• Can be honest and still maintain hope
• Maintain hope through a change in focus from long term to realistic short term or spiritual hopes
• Patients who have a strong sense of hope tend to have better outcomes
• Religious involvement and spirituality are associated with better health outcomes (Mueller, Plevak & Rummans, 2001).
• Strategies for maintaining hope…
  • Ask the patient: “Do you have long term hopes and dreams that have been threatened by this illness?”
    • Support the patient in recognizing the possible loss of these dreams
    • Validate and recognize feelings of anger, sadness and denial
    • Encourage patient to talk to others about their loss – especially if the loss includes other people
  • Ask the patient “Are there particular upcoming events you want to participate in – a wedding, trip, birth, etc?
  • Encourage patient to make short, medium and long term goals with an understanding that their illness is always unpredictable
    • Attend a family gathering
    • To feel better tomorrow
    • To walk again
    • To go home
    • To visit with family and/or friends
    • To be remembered
    • To have a future beyond physical existence 

Assessment of spiritual and religious issues (Weismann, 2007): 

• Regulatory requirements
  • JCAHCO requires the routine assessment of spiritual needs documented but provides no specifications as to how the documentation be done: http://www.jointcommission.org/AccreditationPrograms/HomeCare/Standards/09_FAQs/PC/Spiritual_Assessment.htm
  • Initial assessment may be done by any health care provider (chaplain, physician, nurse) using one of the following spiritual assessment tools
  • Check Chaplain’s notes in Progress Notes for any interventions or assessments
  • Physicians are assessing for implications for medical treatment as well as to develop relationship; chaplains are assessing for above as well as deeper more complicated faith issues as they relate to current and past events
  • A spiritual assessment takes time so you may want to choose a model that is appropriate to the information you need as a physician and to the time you have to spend with each patient
  • American Psychiatric Association recommends that spiritual and religious orientation be addressed so that they can be included in the course of treatment
• A very simple way to assess spiritual needs is simply to ask the patient!
  • Wide variations of belief and practice exist in all religions.
  • It is essential to ask a patient’s individual preferences and needs regarding spiritual care at the end of life. Such care may or may not incorporate the orthodox teachings of his/her religion.
    • What to ask?
      • “Do you have any spiritual concerns?”
      • “Is there a religious or spiritual community that can be of support to you at this time?”
• Spiritual Assessment Tools:
  • FICA (Faith, Importance, Community, Address) - Developed by Dr. Christina Puchalski http://www2.edc.org/lastacts/archives/archivesNov99/assesstool.asp  
    • Faith – What is your faith or belief?
      • Do you consider yourself spiritual or religious?
      • What things do you believe in that give meaning to your life?
    • Importance and influence: Is it important in your life?
      • What influence does it have on how you take care of yourself?
      • How have your beliefs influenced your behavior during this illness? 
      • What role do your beliefs play in regaining your health?
    • Community – Are you a part of a spiritual or religious community?
      • Is this of support to you and how?
      • Is there a person or group of people you really love or who are really important to you?
    • Address – How would you like me to address these issues in your healthcare?
• SPIRIT (http://www.eperc.mcw.edu/fastFact/ff_019.htm)
  • Spiritual belief system
    • Do you have a formal religious affiliation?
    • Do you have a spiritual life that is important to you?
    • What is your clearest sense of the meaning of your life at this time?
  • Personal spirituality
    • Describe the beliefs/practices of your religion/spiritual system that you personally accept.
    • Describe those beliefs and practices you do not accept or follow.
    • In what ways is your spirituality/religion meaningful to you?
    • How is it important to you in daily life?
  • Integration in spiritual community
    • Do you belong to any spiritual or religious groups?
    • How do you participate in this group?
    • What importance does this group have for you?
    • In what ways is this group a source of support?
    • What types of help or support does this group or could this group give you in dealing with your illness?
  • Ritualized practices
    • What specific practices do you carry out as part of your spiritual/religious life, e.g. prayer, meditation?
    • What lifestyle activities/practices does your religion encourage, discourage, forbid?
    • What meaning do these restrictions and practices have for you?
    • Have you followed these guidelines?
  • Implications for medical care
    • Does your religion forbid any specific parts of medical care? Do you follow them?
    • What aspects of your religion/spirituality would you like me to keep in mind as I plan your care?
    • What do I need to know about your religion/spirituality would make our relationship stronger?
    • Are there any barriers to our relationship posed by your religion/spirituality?
    • Would you like to discuss spiritual or religious implications of health care?
  • Terminal events planning
    • Are there particular aspects of medical care that you do not want or that you wish to have withheld based on your religion/spirituality?
    • Are there any spiritual or religious practices or rituals you would like to have available in the hospital or at home?
    • Are there spiritual or religious practices that you wish to plan for at the time of death, or following death?
    • From what sources do you draw strength in order to cope with this illness?
    • For what in your life do you still feel gratitude even though you are ill?
    • When you are afraid or in pain, how do you find comfort?
    • In what ways will your religion and spirituality influence your decisions as we plan for your care near the end of life?
• Consider: Is use of the entire tool warranted? Selected questions?
• Which questions would be most appropriate to help you understand your patient’s spiritual issues?

Incorporating spirituality into your plan of care: 

• Puchalski provides the following recommendations:
  • Consider spirituality as a potentially important component of every patient’s physical well-being and mental health.
  • Address spirituality at each complete physical exam and continue addressing it at follow-up visits if appropriate. Spirituality is an ongoing issue.
  • Respect a patient’s privacy regarding spiritual beliefs; don’t impose your beliefs on others.
  • Make referrals to chaplains as appropriate.
  • Be aware that your own spiritual beliefs will help you personally and will overflow in your encounters with your patients. (The overflow of your spiritual beliefs should only be with the permission of the patient.) This is just one of the many ways to make the doctor-patient relationship a more humanistic one.  

Inappropriate Roles for the Physician:  

• Blurring boundaries – you are not a secular priest – you are physicians
• Working in isolation from the interdisciplinary team – especially the hospital chaplain or patient’s religious/spiritual leader.
• Spiritual or religious teacher/leader – creates a dual relationship with the patient (physician-patient; teacher-seeker) which may contribute to conflicts and compromise work as a physician
• Proselytizing to convert the patient to the physician’s religious beliefs – maintaining appropriate boundaries may be challenging when the patient is struggling with spiritual/religious issues. 

Chaplains As Part Of The Interdisciplinary Team:  

• The chaplain’s role in the hospital is to offer spiritual/emotional support, pastoral counseling and pastoral care, sacramental ministry, and to provide more specific religious resources, as able.
• The chaplain’s role in the hospital is nor to convert or evangelize. Chaplains are here for patients, families and staff – that includes you.
• Anyone can refer to the hospital chaplains; nothing in writing is required.
• Chaplains have extensive education and training in addressing the needs of hospitalized patients and their families, and especially those at the end-of-life. A board certified chaplain holds Master level theological training, minimum of 4 units or 1 full time year of Clinical Pastoral Education, ecclesiastical endorsement by their faith community for specialized ministry and board certification as a chaplain by a nationally accrediting body such as the Association of Professional Chaplains (www.professionalchaplains.org)
• You can refer anytime, but some specific situations could include:
  • When one’s own belief system prohibits involvement in the spiritual care of a patient.
  • When spiritual issues seem particularly significant in the patient’s suffering.
  • When spiritual / religious beliefs seem of particular help and support for the patient.
  • When addressing the spiritual needs of a patient exceeds your comfort level.
  • When specific community spiritual resources are needed.
  • When you suspect spiritual issues which the patient denies.
  • When the patient’s family seems to be experiencing spiritual pain.
  • When the staff seems to be experiencing spiritual pain or is in need of support – multiple deaths, issues of injustice, particular attachment to a dying patient, death/tragedy involving children or pregnancy, etc.
• Remember – refer, refer, refer ----that’s why we have chaplains!!
• And remember – let the chaplains be a resource for you, too. That’s also why we’re here!
• Quickest referral is through the on-call pager #4659 (HOLY).  

References:  

Ambuel, B. Taking a spiritual history (2^nd ed.). Fast Fact and Concept #019. EPERC. http://www.eperc.mcw.edu/fastFact/ff_019.htm

**Casel, E.J. (1982). The nature of suffering and the goals of medicine. NEJM, 306(11), 639-645. (strongly suggest this classic article)

Committee on Religion and Psychiatry. Guidelines regarding possible conflict between psychiatrists’ religious commitments and psychiatric practice. American Journal of Psychiatry, 147, 542.

JCAHO (2001), Spiritual assessment: http://www.jointcommission.org/AccreditationPrograms/HomeCare/Standards/09_FAQs/PC/Spiritual_Assessment.htm

Lo, B, et.al. (2002). Discussing religious and spiritual issues at the end of life. JAMA, 287(6), 749-754.

Maugans, T.A. (1997). The SPIRITual history. Archives of Family Medicine, 5, 11-16.

Mueller, P.S., Plevak, D.J. & Rummans, T.A. (2001). Religious involvement, spirituality and medicine: Implications for clinical practice. Mayo Clin Proc 76, 1225-1235.

Pargament, K.I., Koenig, H.G., & Tarakeshwar, N (2001). Religious struggle as a predictor of mortality among medically ill elderly patients. Archives of Internal Medicine, 161, 1881-1885.

Puchalski, M. (2006). A time for listening and caring. Oxford; Oxford University Press.

Puchalski, CM (2002). Spirituality and end-of-life care: A time for listening and caring. Journal of Palliative Medicine, 5(2), 281-294 doi:10.1089/109662102753641287

Puchalski, C. (1999). Spiritual assessment tool. Innovations in end-of-life care

http://www2.edc.org/lastacts/archives/archivesNov99/assesstool.asp

Storey, P. & Knight, C. (2003). AAHPM UNIPAC Two: Alleviating psychological and spiritual pain in the terminally ill. Dubuque, Iowa: Kendall/Hunt Publishing Co.

Von Roenn, J & Von Gunten, C (2003). Setting goals to maintain hope. Journal of Clinical Oncology 21(3), 570-574.

Weismann, D., et.al. (2007). Improving end-of-life care: A resource guide for physician education. Milwaukee: Medical College of Wisconsin, Inc.

Recommended Readings:

• Kearney, M. (1996). Mortally wounded: Stories of soul pain, death, and healing. New York: Touchstone.
  • "Hospice medical director Kearney presents his views of the healing process in the context of the stories of 10 patients, so general concepts and processes are brought to bear on concrete situations. He defines his concept soul pain as "the experience of an individual who has become disconnected and alienated from the deepest and most fundamental aspects of himself or herself" and says good palliative care is a prerequisite before healing from this pain can be attempted. Kearney has learned from his mistakes with this process, as he shows by relating how he and each patient grew in understanding of themselves and one another. He discovered that healer and patient do not always progress at the same rate and that healers must not only adjust their approaches but also determine whose pain they are trying to alleviate. As for his successes, many have come because of his use of image work, in which the patient is placed in an imaginary setting and chooses where and how to move onward.” William Beatty – Editorial Review, Booklist. (accessed 7/10/06 from www.amazon.com ). Please note this book is out of print, but used copies are available online.
• Kushner, H. (2001). When bad things happen to good people: 20th Anniversary edition. Schocken Books.
  • If you ever ask the question “Why do bad things always happen to good people?” this book, originally published in 1981, continues to help people of all walks of life ponder that very question. While it may not give you the answer you want, it mayl help you find some meaning into the things you see and experience as a physician.
• Smith, D. (1997). The tao of dying. Washington, D.C.: Caring Publishers.
  • This small book is inspired by Lao Tzu’s The Tao Te Ching which was written over 2500 years ago and meant to be a guide for living a meaningful life. The central concept of the Tao Te Ching is wei wu wei “doing by not doing;” the central concept of palliative care is caring for people without changing or curing them. These two concepts inspired the thoughts in this book. Smith’s prose is accompanied by touching photographs by Marilu Pittman who has made a career documenting the courage of the terminally ill.