Spirituality and Palliative Care Elizabeth Whiteman MD Lori

Spirituality and Palliative Care Elizabeth Whiteman, MD Lori Koutouratsas, Chaplain Rev. Ruth Clayton, M. Div.

Goals and Objectives • Recognize signs of spiritual distress in patients • Screen for spiritual distress and provide basic interventions • Understand the interdisciplinary role of the chaplain • Be able to implement spiritual care to patients and families • Identify common reactions to loss

Spirituality and Palliative Care • Serious illness regularly triggers questions of a spiritual nature • Palliative care teams are regularly involved in situations that require skill in assessing and addressing spiritual needs • Suffering may be complex; in addition to physical suffering there are spiritual and psychological components to assess

Total Pain and Suffering • Four components, all are interactive (developed by Dr. Cicely Saunders) ▫ ▫ Physical pain Social pain Psychological pain Spiritual pain • Suffering involves much more than physical pain and often requires different interventions

Factors that contribute to suffering • • • Uncontrolled pain and symptoms Depression Loss of hope or meaning Loss of important roles in life Fear of death Severe existential/spiritual distress Unresolved guilt Financial issues Family conflicts Deep unresolved issues (childhood, religious, abuse)

Physical Pain vs. Suffering • Clinicians often define pain as physical pain. • Often patient’s suffering is much more than physical distress. • Clinicians should be aware of other suffering, especially in end of life patients • Supportive care and involvement of other team members

Physician intervention • Remember physical and spiritual pain can be interconnected. • It is almost impossible to differentiate during an initial interview • Empathetic listening and establishing a comfortable atmosphere can build trust. • Express interest and ask specific questions. • Listen for a broader meaning • Do a spiritual screening

Spiritual Screening Vocabulary and Terms Spirituality: “Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred. ” (National Consensus conference report, “Improving the Quality of Spiritual Care as a Dimension of Palliative Care. ” 2009) “The life principle that pervades a person’s entire being and that integrates and transcends one’s biological and psychological nature. ” (NANDA, 1999) This said, spiritual concepts can apply to ALL persons.

Spiritual Screening Vocabulary and Terms Spiritual Care: • “interventions, individual or communal, that facilitate the ability to express the integration of body, mind, and spirit to achieve wholeness, health, and a sense of connection to self, others, and/or a higher power. ” (American Nurses Association, 2005) The Goal: is to assist patients and families in finding meaning and purpose in their current life circumstances; to ease, resolve, or treat spiritual pain and suffering; demonstrate unconditional love and acceptance; offer pastoral/supportive presence while patients and families work out their own unique experience; staff support and counsel • Spiritual care can provide patients with opportunities to develop a more enjoyable quality of life until death by fostering meaning, inspiration, and hope.

Spiritual Screening Vocabulary and Terms Chaplain: • Clergy or laypersons with a Masters’ degree in Theology, ordination and/or endorsement by their denomination/faith group, a minimum of 1600 supervised clinical hours in an accredited Clinical Pastoral Education (CPE) program. • Variety of faith traditions and trained to provide care from an interfaith perspective. • Does NOT need to be of the same faith/religion as the patient/family; support is not imposing on personal beliefs or traditions. • Personal/professional resource and team member to work alongside physicians, nurses, social workers, CNA’s…all hospital staff

Spiritual Screening Spiritual Distress: • “Impaired ability to experience and integrate meaning and purpose in life through connectedness with self, others, art, music, literature, nature and/or a power greater than oneself. ” (NANDA, 2007)

Identifying Spiritual Issues Spiritual Well-Being Hope Courage Resilience Peace Compassion Joy Self-acceptance Forgiveness Humor Zest Contentment/Enjoyment of life Sense of purpose and meaning in life Trusting of others and self Spiritual Distress Hopelessness/despair Questioning one’s belief system Nightmares/sleep disturbances Anger/resentment over meaning of life/suffering Fear of suffering or death Abandonment Powerlessness/feeling out of control Difficulty practicing familiar rituals that are meaningful Meaninglessness/Lack of purpose Shame, guilt, regret, feeling punished Pain Grief and loss

Physical/Emotional Effects • • Increased depression Quality of life worsens Declining physical health/increased disability Anxiety/emotional distress Increased pain and fatigue Increased mortality Failure to Thrive (Koenig et al. , 1998; Pargament 2001; Fitchett et al. , 2004; Pargament et al. , 2004; Sherman et al. , 2005; Boscaglia et al. , 2005; Zwingmann, et al. , 2006; Edmondson et al. , 2008)

Spiritual Screening! What is it? • Quick determination (1 -2 questions) of whether a person is experiencing any serious spiritual distress or has a significant spiritual issue • Performed by all healthcare team members • Part of the initial consultation or assessment • Builds a meaningful relationship • Clinical tool used to help care about, and listen to, the whole person’s story; not designed to be a way to “fix” a problem right on the spot

Let’s Do Spiritual Screening! What TO ask/say…. • “For some of my patients, their spiritual beliefs act as a source of comfort and strength in dealing with illness, physical pain, stress … do you feel this is true for you? If so, how? If not, what is your source of comfort and strength? ” • What importance does faith or spirituality have in your life? • Do you consider yourself a spiritual or religious person? What NOT to ask/say…. • Do you want to see a chaplain or not? • Do you believe in God? • Do you go to church?

Let’s Do Spiritual Screening! What TO say/ask…. • What aspects of your religion/spirituality would you like to keep in mind as we care for you? • Is there anything we can do to help you with your spiritual/religious needs? • What in your life gives you a sense of meaning and/or purpose? What brings you fulfillment? What NOT to say/ask…. • Do you have spiritual distress? • Do you want to talk about your spiritual beliefs with me? • I’m not spiritual/religious, but I have to ask you if you are. Are you?

Case Study 1 • Mrs. B is a 75 year old woman recently diagnosed with pancreatic cancer. She is admitted with severe pain. She rates it at 10/10, constant. She is on opioids and they only temporarily help. Often when you go in the room she is crying. • How would you respond?

Case Study Continued • • Explore options for better pain control Assess for other physical symptoms Assess patient’s emotional well-being Do a spiritual screening • ANSWER: ALL OF THE ABOVE!!!

Case Study Continued • You assess Mrs. B later in the day after titrating her pain medication. Her daughter is at bedside and she is quiet. When you ask Mrs. B about her pain and how she is feeling, her answers are short. Her daughter tries to get her to answer and Mrs. B yells at her to be quiet. • You tell Mrs. B you will come back and to have the nurses call if she has any more pain issues

Case Study Continued • You visit Mrs. B the next morning and she is in bed, quiet. When asked about pain she says 8/10. • You ask if she has other concerns and she states she is scared to die. She also tells you she has been distant from her daughter and now feels she is going to be a burden on her. The patient and her daughter have a strain in the relationship since her daughter married someone of another faith. She feels guilty for not supporting her and feels sad about the strain.

Issues • Pain- physical pain not well controlled • Depression and guilt- patient feels she has not much time left. Guilty about relationship with her daughter. • Spiritual- past spiritual and religious choices have left her with questions. • Take time to listen and discuss with patient her current concerns.

Conclusion • Mrs. B pain is better controlled, she has had a chance to meet with the hospital chaplain and has expressed many of her fears and concerns. • Mrs. B has also had a chance to discuss her fears and regrets with her daughter. • She plans to further discuss issues with her daughter by meeting with outpatient counseling to strengthen their relationship.

Case Study 2 • Mr. L is a 65 year old veteran. He has been diagnosed with metastatic prostate cancer with metastasis to the bone. He has severe back pain from the metastatic bone cancer and is now also experiencing leg weakness due to nerve impingement. He is admitted for palliative spine surgery.

Case Study Continued • After surgery, Mr. L is on a PCA pump. He appears in pain. However he has not used his PCA. You ask him to rate his pain and he says 8/10. • You try and encourage him to use the PCA and explain how you want to assess how much he needs so he can transition to oral pain medications before discharging from the hospital.

Case Study Continued • Next day you return and Mr. L is grimacing in pain while turning in bed. He has minimally used the PCA and the nurses state they have been pushing it when they move him. • You sit with Mr. L and ask how you can better help with his pain and if he has any other concerns.

Case Study Continued �He questions his diagnosis, and opens up about feeling he has to “endure” the pain. • He feels his cancer is a punishment from God and therefore he has to deal with it. • Upon further discussion he feels guilty for loss of friends lives while in the service. He also states that he has been estranged from his family and has not been in touch with his children the last 15 years.

Issues • Mr. L has guilt from his past. He is also estranged from his family and has no current support. • He also reveals he was raised Christian, but has never been active in the church. • He states that he fears he is “being punished by God” • You ask the chaplain to see him. After this visit, he is able to express his guilt, fears and feelings of failure about the relationships in his family and community.

Conclusion • Mr. L feels more open to taking pain medication and agrees to a long acting opioids. • He also uses his PRN medication and feels well enough to work with physical therapy, so he can try and walk again. • He has agreed for the social worker to assist in locating and contacting his children. He also feels more equipped to appreciate and explore his remaining time with positive actions.

Summary • Do not promise you can solve the problems • Be supportive and get other team members involved. • Do not step beyond your expertise; respect patients religious and spiritual views • Avoid imposing your own beliefs on the patient • Time needed and may take multiple interactions before issues can be discussed • Be mindful of your own feelings, spirituality, and emotions; practice good self-care

References • Lo, Rutson, Discussing Religious and Spiritual Issues at the End of Life, JAMA , Vol 287, No 6 Feb 13, 2002 • Pulchalski, C, Romer, A, Taking a Spiritual History Allows Clinicians to Understand Patients more fully, Journal of Palliative Medicine, Vol 3, No. 1. 2000. • AAHPM Unipac 2, Alleviating Psychological and spiritual pain in the terminally ill, 2012.