Spiritual Issues in Palliative Care: The Need for an Interdisciplinary Approach to Care Western Michigan University Webinar

Christina M. Puchalski, MD. FACP Director, The George Washington Institute for Spirituality and Health (GWish) Professor, Departments of Medicine and Health Sciences The George Washington University School of Medicine and Health Sciences Washington, D.C.

Suffering… Accompanying our Patients, Families…. How do we accompany people who are suffering?

Suffering in Clinical Care • Attention to pain and suffering--- physical as well as psychosocial and spiritual suffering WHO Pall Care Resolution, 2014 • The obligation of physicians to attend to all dimensions of patients’ suffering—the physical as well as the psychosocial and spiritual (American College of Physicians)

Suffering • • • • • • •

Threat of loss of independence and dignity Increased likelihood of chronic illness Activity limiting conditions Increased dependence of care from others Financial strain Social isolation Spiritual distress (lack of meaning, hope, forgiveness)

Pall Care: Good Model of Care in General • To prevent and alleviate suffering • To help patients and families live meaningful lives, • To integrate goals of care • To provide patient-centered compassionate care • To address all dimensions of suffering and care: the psychosocial spiritual as well as the physical.

"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 (Smith, The Weekly Standard, 2006)

Biopsychosocialspiritual model • Integrated; e.g. pain as multifactorial • Physical, emotional, social and spiritual pain

• All dimensions treated equally • Implies team approach--different levels of expertise • Recognition of the whole person--does not obscure the humanity of each individual • Respect for dignity and inherent value of each human being.

What do we mean by spiritual? • • • • •

Religion? New Age? Spiritual not religious? Secularism? Humanism?

Spirituality: Meaning and Connection 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.

Puchalski CM, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J, et. al.: Improving the quality of spiritual care as a dimension of palliative care: The Report of the Consensus Conference. J Palliate Med 2009; 12(10):885-904.

meaning  Meaning • meaning: activities, values that are meaningful but don’t define ultimate purpose/value in life • Ultimate Meaning: values, beliefs, practices, relationships, experiences, that lead you to the awareness of the sacred or significant, to sense of ultimate purpose • Triggers: life stress, illness, loss, disasters

Re-prioritization • Spirituality about re-prioritization: What matters most in the face of loss, disaster etc?

Spirituality near the end of life, in aging: re-prioritizing

Gerotranscendence (Bruynedl,S, Marcoen, A and Soenens, B, Open Access Publication, from Katholiek Univeristy Leuvenen)

• Ageing persons shift from a materialistic and rational vision to a more cosmic and transcendent one. • Gerotranscendence Subscales • Transcendent Connection • Anxiety and Uncertainty• Active involvement

Gerotranscendence (cont’d) • Transcendent Connection • Spiritual views and practices positively correlated with transcendent connection

• Anxiety and Uncertainty • Death anxiety lower in patients with strong spiritual and religious beliefs

• Active involvement • • • •

Increased need for solitude Rejoicing in small events Modern asceticism These behaviors were seen as negative by nursing home staff

Gerotranscendence • Our places for the elderly do not support the final spiritual stage of life • Quiet not forced activities may be what is needed • Compassionate presence—deep listening to suffering, not just rituals or activities that may be meaningless at that time for people

Studies Indicate that Spirituality: • • • • • •

Better quality of life with seriously ill Increases one’s will to live Improved coping skills, sense of coherence, meaning Improved stress management Improved pain management Have more realistic sources of hope (meaning in life, reconciliation, hope for finishing important goals—i.e. not cure focused • Increased satisfaction with care • Patient desire for clinicians addressing patient spirituality

Improving the Quality of Spiritual Care as a Dimension of Palliative Care: A Consensus Conference Convened February 2009 Christina Puchalski, MD, MS, FACP Betty Ferrell, PhD, MA, FAAN, FPCN, RN

Supported by the Archstone Foundation, Long Beach, CA, as a part of their End-of-Life Initiative.

Consensus Conference: Final Report • Puchalski, C., Ferrell, B., Virani, R., Otis-Green, S., Baird, P., Bull, J., Chochinov, H., Handzo, G., NelsonBecker, H., Prince-Paul, M., Pugliese, K., and Sulmasy, D. (2009). Improving the quality of spiritual care as a dimension of palliative care: The report of the consensus conference. Journal of Palliative Medicine, 12(10), 885-904. DOI:10.1089=jpm.2009.0142 • Puchalski, C. & Ferrell, B. (2010). Making Healthcare Whole: Integrating Spirituality into Patient Care. West Conshohocken, PA: Templeton Press.

Consensus Conference: Background The goal of palliative care is to prevent and relieve suffering. — NCP, 2009

Palliative care supports the best possible quality of life for patients and their families. — NCP, 2009

Palliative care is viewed as applying to patients from the time of diagnosis of serious illness to death.

NCP Guidelines Address 8 Domains of Care • Structure and processes • Physical aspects • Psychological and psychiatric aspects • Social aspects • Spiritual, religious, and existential aspects • Cultural aspects • Imminent death • Ethical and legal aspects

Consensus Conference: Goals • Identify points of agreement about spirituality as it applies to health care • Make recommendations to advance the delivery of quality spiritual care in palliative care • Five Key Elements of Spiritual Care provided the framework: • Spiritual assessment; • Models of care and care plans; • Quality improvement; • Interprofessional team training; and, • Personal and professional development

Interprofessional Spiritual Care: An Integrated Model Recommendations: • Integral to any patient-centered healthcare system • Based on honoring dignity, attending to suffering • Spiritual distress treated the same as any other medical problem • Spirituality should be considered a “vital sign” • Interdisciplinary (including Chaplains) • All patients get a spiritual history or screening • Integrated into a whole person treatment plan - Puchalski, Ferrell, Virani et.al. JPM, 2009

Consensus Conference: Spiritual Care Models

Interprofessional Spiritual Care • It is the responsibility of everyone on the team and in the community to: • Listen to patient’s spiritual issues • Identify spiritual distress • Support spiritual resources of strength

Role on the Team • Spiritual Care Generalist Vs. • Spiritual Care Specialist Handzo, G. F. & Koenig, H. G. (2004). Spiritual Care: Whose Job is it Anyway? Southern Medical Journal, 97(12), 1242-1244.

Definition: Spiritual Care Interventions, individual or communal, that facilitate the ability to express the integration of the body, mind, and spirit to achieve wholeness, health, and a sense of connection to self, others, and[/or] a higher power. American Nurses Association, & Health Ministries Association. (2005). Faith and community nursing: Scope and standards of practice. Silver Spring, MD: American Nurses Association.

Definition: Chaplaincy Care Care provided by a board certified chaplain or by a student in an accredited clinical pastoral education program. Examples of such care include emotional, spiritual, religious, pastoral, ethical, and/or existential care. Peery, B. (2009, February 23). What’s in a Name? PlainViews, 6(2).

Goal of Chaplaincy • Helping patients and their loved ones discover and use their spiritual and religious resources in the service of their healing. • Identifying and treating spiritual distress • Spiritual care lead on the health care team

Leadership on the Team • • • • •

Spiritual care lead Modeling active listening Modeling cultural humility Modeling clear communication Contributing to family meetings- goals of care discussion • Clear chart notes and plan • Liaison to community

Spiritual distress as a diagnosis

Terms: 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

Spiritual Distress Manifested in Other Ways • Expressed as increased pain. Spiritual intervention may be as effective as medical in pain management (McGrath, Supp Care in Cancer, 2002, Hurd, 2010, livestrong.com)

• Anger, diminished self esteem that is spiritually related (NCI, Cancer Care for Whole Person)

Spiritual Diagnosis Diagnoses (Primary)

Key feature from history

Example Statements

Existential

Lack of meaning / questions meaning about one’s own existence / Concern about afterlife / Questions the meaning of suffering / Seeks spiritual assistance

“My life is meaningless” “I feel useless”

Abandonment God or others

Lack of love, loneliness / Not being remembered / No Sense of Relatedness

Anger at God or others

Displaces anger toward religious representatives / Inability to Forgive

Concerns about relationship with deity

Closeness to God, deepening relationship

Conflicted or challenged belief systems

Verbalizes inner conflicts or questions about beliefs or faith Conflicts between religious beliefs and recommended treatments / Questions moral or ethical implications of therapeutic regimen / Express concern with life/death and/or belief system

“God has abandoned me” “No one comes by anymore” “Why would God take my child… its not fair” “I want to have a deeper relationship with God”

“I am not sure if God is with me anymore”

Spiritual Diagnosis (Con’t.) Diagnoses (Primary)

Key feature from history

Example Statements

Despair/ Hopelessness

Hopelessness about future health, life Despair as absolute hopelessness, no hope for value in life

“Life is being cut short” “There is nothing left for me to live for”

Grief/loss

Grief is the feeling and process associated with a loss of person, health, etc.

“I miss my loved one so much” “I wish I could run again”

Guilt/shame

Guilt is feeling that the person has done something wrong or evil; shame is a feeling that the person is bad or evil

“I do not deserve to die painfree”

Need for forgiveness and/or reconciliation of self or others

“I need to be forgiven for what I did” “I would like my wife to forgive me”

Isolation

From religious community or other

“Since moving to the assisted living I am not able to go to my church anymore”

Religious specific

Ritual needs / Unable to practice in usual religious practices

“I just can’t pray anymore”

Religious/Spiritual Struggle

Loss of faith and/or meaning / Religious or spiritual beliefs and/or community not helping with coping

“What if all that I believe is not true”

Reconciliation

Diagnosis Discernment in Clinical Care (Diagnosis Pathway) • Is the patient in distress? If so, is it physical, emotional, social or spiritual or a combination of these? • Who needs to be involved on the team to address the different sources of distress? (mental health, chaplain, clergy, etc.) • What can the clinician identifying the distress do on his/her own? (SIMPLE VS. COMPLEX)

Spiritual Screening • Do you have any spiritual beliefs or practices that might affect your stay here at the hospital? • Are there any spiritual beliefs or practices that you want to have discussed in your care with us here? • RUSH model • Do you have spiritual or religious beliefs or practices that are important to you? • Are those resources working for you now?

Spiritual Assessment A more extensive [in-depth, on-going] process of active listening to a patient's story as it unfolds in a relationship with a professional chaplain and summarizing the needs and resources that emerge in that process. The summary includes a spiritual care plan with expected outcomes which should be communicated to the rest of the treatment team. — Fitchett, G., & Canada, A. L. (2010). The Role of Religion/Spirituality in Coping with Cancer: Evidence, Assessment, and Intervention. In J. C. Holland (Ed.). Psycho-oncology, 2nd Edition. New York: Oxford University Press.

Clinical Assessment: Is it not also about the story • A more extensive [in-depth, on-going] process of active listening to a patient's story as it unfolds in a relationship with the clinician out of which comes an assessment and treatment plan that addresses needs and resources of strength. The plan includes the psychosocial and spiritual issues as well as the physical and is communicated with the rest of the team.

Spiritual History • Comprehensive • Done in context of intake exam or during a particular visit such as breaking bad news, end of life issues, crisis • Done by the clinician who is primarily responsible for providing direct care or referrals to specialists such as professional chaplains.

Spiritual History F

Do you consider yourself spiritual? Do you have spiritual beliefs/values/practices that help you cope with stress/what you are going through/in hard times? What gives your life meaning?

I

Are these beliefs important to you? How do they influence you in how you care for yourself? Your healthcare decisions? (Proxy)

C

Are you part of a spiritual or religious community?

A

How would you like your healthcare provider to address these issues with you?

Formulation of a Spiritual Treatment Care Plan Recommendations: • Screen and access • All HCPs should do spiritual screening or history as appropriate to role • Diagnostic labels/codes • Treatment plans—co-created with patients • Support/encourage in expression of needs and beliefs

Interventions Clinicians Can Do • Compassionate presence and follow up • Reflective listening/query about important life events—spirituality as connection • Support patient sources of spiritual strength and note in chart • Connect patient to community resources • Referral to chaplain or other spiritual care professional

Spiritual Practices/Interventions • Meditation, prayer • •

Benson H. The relaxation response. New York: William Morrow & Co., 1975; Koenig HG, McCullough ME, Larson DB: Handbook of Religion and Health. New York: Oxford University Press, 2001.

• Mindfulness •

Kabat-Zinn J. Mindfulness-Based Interventions in Context: Past, Present, and Future. Clinical Psychology: Science and Practice 2003; 10:2, 144-156.

• Gratitude •

Wood, AM, et al. Gratitude and well-being: A review and theoretical integration. Clinical Psychology Review 2010, 30, 890-905.

• Forgiveness/reconciliation • •

Worthington, E.L., Jr. (1998). Dimensions of forgiveness: Psychological research and theological perspectives. Philadelphia: Templeton Foundation Press. McCullough, M. E., Pargament, K. I.,&Thoresen, C. E. (Eds.). (2000). Forgiveness: Theory, research, and practice. New York: Guilford.

• Meaning oriented therapy •

Breitbart W, Heller KS. Reframing hope: meaning-centered care for patients near the end of life. J Palliate Med 2003;6:979–88.

• Dignity therapy •

Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol. 2005;23:5520-5.

• Spiritual components of yoga, tai chi, etc. • Community- faith based and other •

Keith Meador – community based religious interventions

Chaplaincy Interventions • Help patient/caregiver find meaning in current situation relative to global meaning • Facilitate discussions of goals of care relative to spiritual/religious beliefs • Facilitate venting and resolution of guilt, anger at God and provide supporting rituals. GHandzo

Charting • In social history section or as part of subjective if spiritual issue contributing to acute visit or main reason for visit • Put A (assessment part) in treatment or care plan (Biopsychosocial-Spiritual model (BPSS) • All healthcare professionals should look in spiritual care section • Best model is an integrated note

Despair Ms. Wright is a 52 yo female with metastatic breast cancer. She also had renal cell CA and colon CA, both in remission for over 15 years. She is divorced since 21 years ago, her daughter is 23 (just took a leave of absence from work and moved from another state to be with the her mother). Ms. Wright sees the outpatient palliative care team for an opinion about hospice. Her internist made the recommendation; the oncologist feels she should continue with aggressive chemotherapy.

Spiritual History • F: Raised Episcopalian, but has not been to church in the last 6 months due to fatigue and anxiety about her diagnosis. • I: Faith is very important to her but not really helping her now. When asked what does help her she says : My garden, I love to plant things and see them grow”. • C: no community, very isolated. Daughter has no support • A: Wants to live and wants to try everything. “My oncologist thinks I will make it. I am not sure….” Would like to go to church again but “just can’t”

Interventions by the team • Goals of care discussion • Family meeting to find support for both patient and daughter • Consider meeting with oncologist, PMD and patient. • Explore what she means by want to go to church but just can’t. • Compassionate presence as she shares her conflicts • Explore sources of hope, meaning • Explore ways of finding peace in the midst of the conflict • Provide resources about palliative care, hospice, offering options for chemo and a pall care approach

Chaplain’s Intervention • Explore connecting patient to local faith community which can come to her. Make connection if desired. • Discuss with patient how she might increase the support from her faith- prayer, audio tapes, meditation, visits from church members. Implement as desired. • Explore desire for life review such as Dignity Therapy and implement if desired. • Discuss relationship to God and how it might be strengthened. Explore any barriers including guilt, anger, regret. Why isn’t faith helping now? • Discuss wishes and goals for the rest of her life. • Support daughter in her caring role and anticipatory grieving if desired.

Narrative example: BiopsychosocialSpiritual Model Assessment and Plan Ms. Wright is a 52 yo female with end stage metastatic breast cancer, referred to pall care for goals of care, grief, separation from religious community Physical At present no pain, has insomnia likely from anxiety about choices, progression of disease Emotional

Supportive counseling, presence.

Social

Encourage family meeting to discuss prognosis, care issues, support for daughter, Education on pall care and treatment options Follow chaplain’s recommendations, Offer presence and support, support spiritual resources of strength

Spiritual

Recommendations • Every patient should be screened for spiritual distress • Clinicians should include a spiritual history as part of the routine history • Spiritual issues, distress, resources of strength should be documented in patient chart and followed up appropriately • Chaplains should be integral part of healthcare team and should be the expert in spiritual care

Annual Spirituality and Health Summer Institute George Washington University Washington, DC – July 23-26, 2014

Transformative Interaction Care Provider A healing encounter with shared decisionmaking and partnership Patient

Compassion: the love that bind us to one another

Compassion is the keen awareness of the interdependence of all things… Thomas Merton

Model of Spirituality and Compassion Healthcare.

Common Dimensions Transcendence Service, altruism Comfort with mystery Spirituality

Knowledge/desire to relieve suffering Connection & support

Puchalski, Lunsford, 2008

Intervening activities •Experiencing the sacred •Expressing altruism •Being intentional •Providing compassionate presence •Sharing life stories •Communicating spiritual aspects of care •Forming healing communities

Compassion

Steps to Compassionate Presence • Cognitive Preparation • intention, no agenda,

• Emotional Preparation • Awareness of own Grief/ Suffering awareness, boundaries

• Spiritual Preparation • Sense of transcendence, sacred, significant, meaning

• Attentiveness training (mindfulness, other regular spiritual practice)

Confluence of Narratives (Art Lucas, M.Div., BCC)

As One Journeys Hunkers Down Waits upon Is Fully Present With Another

Reductionism vs. Narrative • Models help us: • begin the conversation • Communicate among disciplines • Ensure spirituality is not forgotten, is an equal domain of care • Enable “treatment of “ and attention to another's’ suffering

• Healing occurs in the relationship, in the unfolding of the story

Art of Presence – Annual Healthcare Renewal Retreat Assisi, Italy – August 14-20, 2014

GWish, www.gwish.org • Education resources (SOERCE, National Competencies) • Interprofessional Initiative in Spirituality Education (nursing, medicine, social work, pharm, psychology) • Retreats for healthcare professionals (Assisi, U.S.) • Time for Listening and Caring: Oxford University Press • Making Healthcare Whole, Templeton Press • FICA Assessment Tool—online DVD • Spiritual and Health Summer Institute, July 10-13, GWU • INSPIR • Christina Puchalski, MD, 202-994-6220, [email protected]