An EAPC white paper on multi-disciplinary education for spiritual care in palliative care

Megan Best, Carlo Leget, Andrew Goodhead, Piret Paal, Megan Best, Carlo Leget, Andrew Goodhead, Piret Paal

Abstract

Background: The EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups.

Methods: Early in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care.

Results: The EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region.

Conclusions: Better education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff.

Keywords: Curriculum; Education; Existential needs; Health care professionals; Holistic caregiving; Palliative care; Religious needs; Spiritual assessment; Spiritual care; Spiritual needs; Spirituality.

Conflict of interest statement

The authors declare that they have no competing interests.

References

    1. Cobb M, Puchalski CM, Rumbold B, editors. Oxford textbook of spirituality in healthcare. Oxford: Oxford University Press; 2012.
    1. van de Geer J, Leget C. How spirituality is integrated system-wide in the Netherlands palliative care National Programme. Prog Palliat Care. 2012;20(2):98–105. doi: 10.1179/1743291X12Y.0000000008.
    1. WHO Strengthening of Palliative Care as a Component of Integrated Treatment throughout the Life Course. J Pain Palliat Care Pharmacother. 2014;28:130–134. doi: 10.3109/15360288.2014.911801.
    1. World Health Organization. WHO Definition of Palliative Care 2002 [Available from: ].
    1. WHO at UNICEF. Declaration of Astana 2018 [Available from: ].
    1. Osman H, Shrestha S, Temin S, Ali ZV, Corvera RA, Ddungu HD, et al. Palliative Care in the Global Setting: ASCO resource-stratified practice guideline. J Global Oncol. 2018;4:1–24.
    1. Clark D. `Total pain', disciplinary power and the body in the work of Cicely Saunders, 1958–1967. Soc Sci Med. 1999;49(6):727–736. doi: 10.1016/S0277-9536(99)00098-2.
    1. Saunders C. Spiritual pain. J Palliat Care. 1988;4(3):29–32. doi: 10.1177/082585978800400306.
    1. Cherny NI, Christakis NA. Oxford textbook of palliative medicine. Oxford: Oxford University Press; 2011.
    1. Puchalski C, 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 Palliat Med. 2009;12(10):885–904. doi: 10.1089/jpm.2009.0142.
    1. Puchalski CM, Vitillo R, Hull SK, Reller N. Improving the spiritual dimension of whole person care: reaching national and international consensus. Jf Palliat Med. 2014;17(6):642–656. doi: 10.1089/jpm.2014.9427.
    1. Nolan S, Saltmarsh P, Leget C. Spiritual care in palliative care: working towards an EAPC task force. Eur J Palliat Care. 2011;18(2):86–89.
    1. Appleby A, Swinton J, Bradbury I, Wilson P. GPs and spiritual care: signed up or souled out? A quantitative analysis of GP trainers' understanding and application of the concept of spirituality. Educ Prim Care. 2018;29(6):367–375. doi: 10.1080/14739879.2018.1531271.
    1. Assing Hvidt E, Søndergaard J, Ammentorp J, Bjerrum L, Gilså Hansen D, Olesen F, et al. The existential dimension in general practice: identifying understandings and experiences of general practitioners in Denmark. Scand J Prim Health Care. 2016;34(4):385–393. doi: 10.1080/02813432.2016.1249064.
    1. Van de Geer J, Groot M, Andela R, Leget C, Prins J, Vissers K, et al. Training hospital staff on spiritual care in palliative care influences patient-reported outcomes: results of a quasi-experimental study. Palliat Med. 2017;31(8):743–753. doi: 10.1177/0269216316676648.
    1. Grant E, Murray SA, Kendall M, Boyd K, Tilley S, Ryan D. Spiritual issues and needs: perspectives from patients with advanced cancer and nonmalignant disease. A qualitative study. Palliat Support Care. 2004;2(04):371–378. doi: 10.1017/S1478951504040490.
    1. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825–832. doi: 10.7326/0003-4819-132-10-200005160-00011.
    1. Alcorn S. "if god wanted me yesterday, I wouldn't be here today": religious and spiritual themes in patients' experiences of advanced cancer. J Palliat Med. 2010;13(5):581–588. doi: 10.1089/jpm.2009.0343.
    1. Winkelman WD, Lauderdale K, Balboni MJ, Phelps AC, Peteet JR, Block SD, et al. The relationship of spiritual concerns to the quality of life of advanced Cancer patients: preliminary findings. J Palliat Med. 2011;14(9):1022–1028. doi: 10.1089/jpm.2010.0536.
    1. Murray SA, Kendall M, Boyd K, Worth A, Benton TF. Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliat Med. 2004;18(1):39–45. doi: 10.1191/0269216304pm837oa.
    1. Steinhauser K, Christakis N, Clipp E, McNeilly M, McIntyre L, Tulsky J. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–2482. doi: 10.1001/jama.284.19.2476.
    1. Moadel A, Morgan C, Fatone A, Grennan J, Carter J, Laruffa G, et al. Seeking meaning and hope: self-reported spiritual and existential needs among an ethnically-diverse cancer patient population. Psychooncol. 1999;8(5):378–385. doi: 10.1002/(SICI)1099-1611(199909/10)8:5<378::AID-PON406>;2-A.
    1. Greisinger AJ, Lorimor RJ, Aday LA, Winn RJ, Baile WF. Terminally ill cancer patients: their most important concerns. Cancer Pract. 1997;5(3):147–154.
    1. Astrow AB, Wexler A, Texeira K, He MK, Sulmasy DP. Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care? J Clin Oncol. 2007;25(36):5753–5757. doi: 10.1200/JCO.2007.12.4362.
    1. Kamal AH, Bull JH, Wolf SP, Swetz KM, Shanafelt TD, Ast K, et al. Prevalence and predictors of burnout among hospice and palliative care clinicians in the U.S. J Pain Symptom Manag. 2016;51(4):690–696. doi: 10.1016/j.jpainsymman.2015.10.020.
    1. L’enfant, maitre de simplicite. In: Avalle T, editor. Parole et Silence 2009. p. 317.
    1. Selman LE, Brighton LJ, Sinclair S, Karvinen I, Egan R, Speck P, et al. Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care: a focus group study across nine countries. Palliat Med. 2018;32(1):216–230. doi: 10.1177/0269216317734954.
    1. Büssing A, Janko A, Baumann K, Hvidt NC, Kopf A. Spiritual needs among patients with chronic pain diseases and cancer living in a secular society. Pain Med. 2013;14(9):1362–1373. doi: 10.1111/pme.12198.
    1. Balboni MJ, Puchalski CM, Peteet JR. The relationship between medicine, spirituality and religion: three models for integration. J Relig Health. 2014;53(5):1586–1598. doi: 10.1007/s10943-014-9901-8.
    1. Sulmasy DP. A biopsychosocial-spiritual model for the Care of Patients at the end of life. Gerontol. 2002;42(suppl 3):24–33. doi: 10.1093/geront/42.suppl_3.24.
    1. Handzo G. Spiritual care for palliative patients. Curr Probl Cancer. 2011;35:365–371. doi: 10.1016/j.currproblcancer.2011.10.011.
    1. Vandenhoeck A. Chaplains as specialists in spiritual care for patients in Europe. Pol Arch Med Wewn. 2013;123(10):552–557.
    1. Benito E, Oliver A, Galiana L, Barreto P, Pascual A, Gomis C, et al. Development and validation of a new tool for the assessment and spiritual care of palliative care patients. J Pain Symptom Manag. 2014;47(6):1008–1018. doi: 10.1016/j.jpainsymman.2013.06.018.
    1. Gordon T, Mitchell D. A competency model for the assessment and delivery of spiritual care. Palliat Med. 2004;18(7):646–651. doi: 10.1191/0269216304pm936oa.
    1. Drijfhout M, Baldry C. Spiritual care: making it happen. Eur J Palliat Care. 2007;14(5):191–193.
    1. Paal P, Neenan K, Muldowney Y, Brady V, Timmins F. Spiritual leadership as an emergent solution to transform the healthcare workplace. J Nurs Manag. 2018;26(4):335–337. doi: 10.1111/jonm.12637.
    1. McSherry W, Smith J. Spiritual Care. In: McSherry W, McSherry R, Watson R, editors. Care in Nursing: Principles, Values and Skills. Oxford Oxford University Press; 2012. p. 118.
    1. Gamondi C, Larkin P, Payne S. Core competencies in palliative care: an EAPC white paper on palliative care education: part 2. Eur J Palliat Care. 2013.
    1. Paal P, Helo Y, Frick E. Spiritual care training provided to healthcare professionals: a systematic review. J Pastoral Care Counsel. 2015;69(1):19–30. doi: 10.1177/1542305015572955.
    1. Best M, Butow P, Olver I. Palliative care specialists’ beliefs about spiritual care. Support Care Cancer. 2016;24(8):3295–3306. doi: 10.1007/s00520-016-3135-0.
    1. Best M, Aldridge L, Butow P, Olver I, Webster F. Conceptual analysis of suffering in Cancer: a systematic review. Psycho-Oncology. 2015;24(9):977–986. doi: 10.1002/pon.3795.
    1. Wasner M, Longaker C, Fegg MJ, Borasio GD. Effects of spiritual care training for palliative care professionals. Palliat Med. 2005;19(2):99–104. doi: 10.1191/0269216305pm995oa.
    1. Jones A. 'Listen, listen trust your own strange voice' (psychoanalytically informed conversations with a woman suffering serious illness) J Adv Nurs. 1999;29:826–831. doi: 10.1046/j.1365-2648.1999.00963.x.
    1. Lown BA, Manning CF. The Schwartz center rounds: evaluation of an interdisciplinary approach to enhancing patient-centered communication, teamwork, and provider support. Acad Med. 2010;85(6):1073–1081. doi: 10.1097/ACM.0b013e3181dbf741.
    1. Bar-Sela G, Lulav-Grinwald D, Mitnik I. “Balint group” meetings for oncology residents as a tool to improve therapeutic communication skills and reduce burnout level. J Cancer Educ. 2012;27(4):786–789. doi: 10.1007/s13187-012-0407-3.
    1. Palmer PJ. A hidden wholeness: the journey toward an undivided life: john Wiley & sons. 2009.
    1. Daudt H, d'Archangelo M, Duquette D. Spiritual care training in healthcare: does it really have an impact? Palliat Support Care. 2018:1–9.
    1. De Jager ME, Garssen B, van den Berg M, Tuytel G, van Dierendonck D, Visser A, et al. Measuring spirituality as a universal human experience: development of the spiritual attitude and involvement list (SAIL) J Psychosoc Oncol. 2012;30(2):141–167. doi: 10.1080/07347332.2011.651258.
    1. Van Leeuwen R, Tiesinga LJ, Middel B, Post D, Jochemsen H. The validity and reliability of an instrument to assess nursing competencies in spiritual care. J Clin Nurs. 2009;18(20):2857–2869. doi: 10.1111/j.1365-2702.2008.02594.x.
    1. McSherry W, Draper P, Kendrick D. The construct validity of a rating scale designed to assess spirituality and spiritual care. Int J Nurs Stud. 2002;39(7):723–734. doi: 10.1016/S0020-7489(02)00014-7.
    1. Leget C. Retrieving the Ars moriendi tradition. Med Health Care Philos. 2007;10:313–319. doi: 10.1007/s11019-006-9045-z.
    1. Leget C. Art of living, art of dying: spiritual Care for a Good Death. Philadelphia: Jessica Kingsley Publishers; 2017.
    1. Surbone A, Baider L. The spiritual dimension of cancer care. Crit Rev Oncol Hematol. 2010;73(3):228–235. doi: 10.1016/j.critrevonc.2009.03.011.
    1. Balboni TA, Vanderwerker LC, Block SD, Paulk ME, Lathan CS, Peteet JR, et al. Religiousness and spiritual support among advanced Cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol. 2007;25(5):555–560. doi: 10.1200/JCO.2006.07.9046.
    1. McClain CS, Rosenfeld B, Breitbart W. Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients. Lancet. 2003;361(9369):1603–1607. doi: 10.1016/S0140-6736(03)13310-7.
    1. McCoubrie R, Davies A. Is there a correlation between spirituality and anxiety and depression in patients with advanced cancer? Support Care Cancer. 2006;14(4):379–385. doi: 10.1007/s00520-005-0892-6.
    1. Peterman AH, Fitchett G, Brady MJ, Hernandez L, Cella D. Measuring spiritual well-being in people with cancer: the functional assessment of chronic illness therapy—spiritual well-being scale (FACIT-Sp) Ann Behav Med. 2002;24(1):49–58. doi: 10.1207/S15324796ABM2401_06.
    1. Puchalski CM. Spirituality in the cancer trajectory. Ann Oncol. 2012;23(suppl 3):49–55. doi: 10.1093/annonc/mds088.
    1. Vachon MLS. Meaning, spirituality, and wellness in Cancer survivors. Semin Oncol Nurs. 2008;24(3):218–225. doi: 10.1016/j.soncn.2008.05.010.
    1. Best M, Butow P, Olver I. Doctors discussing religion and spirituality: a systematic literature review. Palliat Med. 2015;0269216315600912.
    1. Best M, Butow P, Olver I. Creating a safe space: a qualitative inquiry into the way doctors discuss spirituality. Palliat Support Care. 2015;14(5):519–531. doi: 10.1017/S1478951515001236.
    1. van de Geer J, Veeger N, Groot M, Zock H, Leget C, Prins J, Vissers K. Multidisciplinary training on spiritual care for patients in palliative care trajectories improves the attitudes and competencies of hospital medical staff: results of a quasi-experimental study. Am J Hosp Palliat Med. 2018;35(2):218–228. doi: 10.1177/1049909117692959.
    1. Tan H, Wilson A, Olver I, Barton C. The family meeting addressing spiritual and psychosocial needs in a palliative care setting: usefulness and challenges to implementation. Prog Palliat Care. 2011;19(2):66–72. doi: 10.1179/1743291X11Y.0000000001.
    1. Best M, Butow P, Olver I. Spiritual support of cancer patients and the role of the doctor. Support Care Cancer. 2014;22(5):1333–1339. doi: 10.1007/s00520-013-2091-1.
    1. Lucchetti G, Bassi RM, Lucchetti ALG. Taking spiritual history in clinical practice: a systematic review of instruments. Explore. 2013;9(3):159–170. doi: 10.1016/j.explore.2013.02.004.
    1. Puchalski C. Spirituality and end-of-life care: a time for listening and caring. J Palliat Med. 2002;5(2):289–294. doi: 10.1089/109662102753641287.
    1. Maugans T. The SPIRITual history. Arch Fam Med. 1996;5(1):11–16. doi: 10.1001/archfami.5.1.11.
    1. Anandarajah G, Hight E. Spirituality and medical practice: using the HOPE questions as a practical tool for spiritual assessment. Am Fam Physician. 2001;63(1):81–88.
    1. Neely D, Minford E. FAITH: spiritual history-taking made easy. Clin Teach. 2009;6(3):181–185. doi: 10.1111/j.1743-498X.2009.00317.x.
    1. Ross L, McSherry W. The power of two simple questions. Nurs. 2018;19:439–447.
    1. Hungelmann J, Kenkel-Rossi E, Klassen L, Stollenwerk R. Focus on spiritual well-being: harmonious interconnectedness of mind-body-spirit—use of the JAREL spiritual well-being scale: assessment of spiritual well-being is essential to the health of individuals. Geriatr Nurs (Lond) 1996;17(6):262–266. doi: 10.1016/S0197-4572(96)80238-2.
    1. Steinhauser K, Voils C, Clipp E, Bosworth H, Christakis N, Tulsky J. “Are you at peace?”: one item to probe spiritual concerns at the end of life. Arch Intern Med. 2006;166(1):101–105. doi: 10.1001/archinte.166.1.101.
    1. Bultz BD, Johansen C. Screening for distress, the 6th vital sign: where are we, and where are we going? Psycho-Oncol. 2011;20(6):569–571. doi: 10.1002/pon.1986.
    1. Wells-Di Gregorio S, Porensky EK. Minotti M, et al. Psychooncology. 2013;22:2001–2008. doi: 10.1002/pon.3256.
    1. Thomas BC, Thomas I, Nandamohan V, Nair MK, Pandey M. Screening for distress can predict loss of follow-up and treatment in cancer patients: results of development and validation of the Distress Inventory for Cancer Version 2. Psychooncol. 2009;18:524–533. doi: 10.1002/pon.1422.
    1. Fischbeck S, Maier BO, Reinholz U, et al. Assessing somatic, psychosocial, and spiritual distress of patients with advanced cancer: development of the advanced Cancer Patients' distress scale. Am J Hosp Palliat Care. 2013;30:339–346. doi: 10.1177/1049909112453640.
    1. Lucas AM. Introduction to the discipline for pastoral care giving. In: VandeCreek L, Lucas AM, editors. The discipline for pastoral care giving. Binghamton: The Haworth Pastoral Press; 2001. pp. 1–33.
    1. Fitchett G, Pierson ALH, Hoffmeyer C, Labuschagne D, Lee A, Levine S, O'Mahony S, Pugliese K, Waite N. Development of the PC-7, a quantifiable assessment of spiritual concerns of patients receiving palliative care near the end of life. J Palliat Med. 2019. 10.1089/jpm.2019.0188 [Epub ahead of print].
    1. Fitchett G. Assessing spiritual needs: a guide for caregivers. 2. Augsburg: Academic Renewal Press; 2002.
    1. Hui D, de la Cruz M, Thorney S, Parsons HA, Delgado-Guay M, Bruera E. The frequency and correlates of spiritual distress among patients with advanced cancer admitted to an acute palliative care unit. Am J Hosp Palliat Care. 2011;28:264–270. doi: 10.1177/1049909110385917.
    1. Shields M, Kestenbaum A, Dunn LB. Spritual AIM and the work of the chaplain: a model for assessing spiritual needs and outcomes in relationship. Palliat Support Care. 2015;13:75–89. doi: 10.1017/S1478951513001120.
    1. Monod SM, Rochat E, Bula CJ, Jobin G, Martin E, Spencer B. The spiritual distress assessment tool: an instrument to assess spiritual distress in hospitalised elderly persons. BMC Geriatr. 2010;10:88. doi: 10.1186/1471-2318-10-88.
    1. Hilsman GJ. Spiritual Care in Common Terms: how chaplains can effectively describe the spiritual needs of patients in medical records: Jessica Kingsley publishers. 2016.
    1. Massey K, Barnes MJ, Villines D, Goldstein JD, Pierson AL, Scherer C, Vander Laan B, Summerfelt WT. What do I do? Developing a taxonomy of chaplaincy activities and interventions for spiritual care in intensive care unit palliative care. BMC Palliat Care. 2015;14:10. doi: 10.1186/s12904-015-0008-0.
    1. Paal P. Ethical, Legal and Social Aspects of Healthcare for Migrants: Perspectives from the UK and Germany. 2018. 10 culturally sensitive palliative care research.
    1. Gysels M, Evans N, Menaca A, Andrew EV, Bausewein C, Gastmans C, et al. Culture is a priority for research in end-of-life care in Europe: a research agenda. J Pain Symptom Manag. 2012;44(2):285–294. doi: 10.1016/j.jpainsymman.2011.09.013.
    1. Crawley LM. Racial, cultural, and ethnic factors influencing end-of-life care. J Palliat Med. 2005;8(supplement 1):s-58–s-69. doi: 10.1089/jpm.2005.8.s-58.
    1. Galanti G-A. An introduction to cultural differences. West J Med. 2000;172(5):335. doi: 10.1136/ewjm.172.5.335.
    1. Jovanovic M. Cultural competency and diversity among hospice palliative care volunteers. Am J Hosp Palliat Med. 2012;29(3):165–170. doi: 10.1177/1049909111410415.
    1. Koffman J. Servicing multi-cultural needs at the end of life. J Ren Care. 2014;40(S1):6–15. doi: 10.1111/jorc.12087.
    1. Cain CL, Surbone A, Elk R, Kagawa-Singer M. Culture and palliative care: preferences, communication, meaning, and mutual decision making. J Pain Symptom Manag. 2018;55(5):1408–1419. doi: 10.1016/j.jpainsymman.2018.01.007.
    1. Paal P, Bükki J. “If I had stayed back home, I would not be alive any more … ” – Exploring end-of-life preferences in patients with migration background. PLoS One. 2017;12(4):e0175314. doi: 10.1371/journal.pone.0175314.
    1. Helman CG. Culture, health and illness: CRC press; 2007.
    1. Hilbers J, Haynes AS, Kivikko JG. Spirituality and health: an exploratory study of hospital patients' perspectives. Aust Health Rev. 2010;34(1):3–10. doi: 10.1071/AH09655.
    1. Curlin FA, Lawrence RE, Chin MH, Lantos JD. Religion, conscience, and controversial clinical practices. NEJM. 2007;356(6):593–600. doi: 10.1056/NEJMsa065316.
    1. Purnell L. A description of the Purnell model for cultural competence. J Transcult Nurs. 2000;11(1):40–46. doi: 10.1177/104365960001100107.
    1. Gratz M, Roser T. Spiritual Care in Qualifizierungskursen für nicht-seelsorgliche Berufe: Grundsätze der Deutschen Gesellschaft für Palliativmedizin (Münchner Reihe Palliative Care, Band 15) Kohlhammer: Stuttgart 2019.
    1. Agora Spiritual Care Guideline Working Group . Spiritual care Nation-wide guideline Version 1.0. 2016.
    1. Levison C. Spiritual care matters: an introductory resource for all NHS Scotland staff. Edinburgh: NHS Education for Scotland; 2009.

Source: PubMed

3
購読する