Ann M. Callahan PhD, LCSW

Lecturer, College of Social Work Center of Excellence in Rural Health

University of Kentucky

SWHPN General Assembly Tuesday, March 8, 2016

2

¨  Identify spiritual needs. ¨  Identify spiritual resources. ¨  Explain potential consequences of unmet

spiritual needs.

3

¨  Mr. Horton is a 70-year-old male who is recovering from complications of pneumonia. His primary care provider told him yesterday that has lung cancer, his prognosis is poor. This morning Mr. Horton presents this morning as agitated and tells the social worker he wants to be discharged. He says he needs to go home and take care of his wife. Mr. Horton understands that his wife, who is disabled, is under the care of their oldest daughter. However, he continues to pressure for immediate discharge saying “My wife needs me. Who will take care of her when I am gone?”

4

¨  Spiritual Needs ¡  Research suggests that over 80 to 90 percent of hospice

care clients may have spiritual needs (Peteet & Balboni, 2013; Gijsberts et al., 2011).

¡  In 2014, the median length of service was 17.4 days. This means that half of all hospice clients received hospice care for slightly over two weeks. Approximately 35.5% of clients died or were discharged in less than seven days of admission (NHPCO, 2014).

¡  In 2012, an average 16.8 percent of hospice clients with Medicare died within three days of enrollment (Bynum, Meara, Chang, & Rhoads, 2016).

5

What Would You Do?

¨  Do I know how to assess whether this client's “pain” is physical or spiritual in origin?

¨  Am I comfortable talking with this family about their religious beliefs and practices?

¨  Will I have the time and skills to provide comfort if my questions evoke great sadness or distress?

¨  Who could best meet the needs of this client and family at this time?

6

(Knight & von Gunten, 2004a)

¨  According to Knight & von Gunten (2004b), examples of spiritual needs of clients at the end of life include the following: ¡  Process Thoughts and Emotions ¡  Retain Hope and Sense of Meaning ¡  Sustain Personal Identity ¡  Maintain Interpersonal Relationships ¡  Experience Community Membership

7

¨  Process Thoughts and Emotions ¨  The transition from wellness to illness or from illness to

death can lead to the experience of loss, grief, fear, and need to reconcile or resolve unfinished business.

¨  Many persons with life-limiting diseases and their family members describe this time as “being on a rollercoaster” or venturing into “unknown territory.”

¨  Though the ultimate outcome (death) may be clear and accepted, the days and months in between are filled with uncertainty as change in functioning is unpredictable.

¨  Human beings have a desire to transcend hardship and suffering. People seek meaning beyond their current suffering to make sense of that situation (Kellehear, 2000).

8 (Knight & von Gunten, 2004b)

¨  Retain Hope and Sense of Meaning ¡  Persons need time to grieve the many losses that

accompany this prognosis ¡  Moving on to other objects of hope too quickly may

undermine the grief process ¡  Some religious persons may feel as if God has not

answered their prayer or even abandoned them. ¡  This type of spiritual need may express itself through

questions such as: ú  Why is this happening to me? ú  Why now when we’ve just retired? ú  Is there a reason or purpose for this?

9

(Knight & von Gunten, 2004b)

¨  Mrs. Allen’s lung cancer progressed very slowly. Though her respiratory symptoms and pain were well controlled, she suffered considerably from being unable to care for her own bodily functions, manage her own household, and remain active in her church. Initially, Mrs. Allen was able to cope with these losses and remain in good spirits by believing that her daughters needed this time to “prepare” for her death. For a while, she found meaning in the belief that God was helping her grow spiritually in and through this state of dependence.

10

¨  As the months wore on, however, and these reasons for being alive were fulfilled, Mrs. Allen despaired. She prayed for God to take her. With the help of the hospice team, she found renewed strength and peace by affirming her long-standing belief that “God has a plan and purpose for everything, even if He doesn’t tell us what it is.” To remain faithful was the answer to her quest for meaning.

(Knight & von Gunten, 2004b) 11

¨  Sustain Personal Identity ¨  People are largely defined by personal traits and social

role that frame emotional expression. In Western society, personal agency is also highly valued.

¨  When faced with a terminal illness, people lose capacity to engage in self-care. They risk being defined by their illness as they assume the role of “client.”

¨  This type of spiritual need may express itself through questions such as:

¡  Who am I now? ¡  What good am I? ¡  What purpose does my existence serve?

(Knight & von Gunten, 2004b)

12

¨  Maintain Interpersonal Relationships ¡  Clients at the end of life, face the risk for social

losses that can lead to decreased life quality. ¡  Social losses include the inability to sustain

active engagement in social life due to physical incapacity.

¡  The facilitation of social engagement can offset social losses associated with terminal illness and, thus, preserve life quality.

(Knight & von Gunten, 2004b) 13

¨  Mr. and Mrs. Mason had been married 50 years when Mrs. Mason was diagnosed with end stage glioblastoma. As the disease progressed, she no longer spoke, made no meaningful eye contact or gestures, did not respond to even simple commands, and showed no sign of recognizing the voice or presence of her husband. Mr. Mason would periodically despair and ask members of the hospice team if they could do something to end this. “She’s gone, she’s not here anymore. What’s the point?”

14

¨  On other days, he would persist, however, in telling her about his day, caressing her arms, and advocating for respectful treatment of her by the nurses and aids who came to the home. “She’s not a piece of meat, you know. She’s a human being. She’s still my wife.” As time went on, he came to believe that somehow she knew he was there, that the bond of love they shared was deeper than the mind could grasp, and that his presence and love for her was making a difference, even if it couldn’t change the course of the disease.

(Knight & von Gunten, 2004b) 15

¨  Experience Community Membership ¨  People need a sense of community through which they are

able to connect with others. This connection may occur with family, friends, work, faith or civic community.

¨  When faced with a terminal illness, people face the risk of social isolation as they are less able to actively engage in community life.

¨  This type of spiritual need may express itself through questions such as:

¡  How will I make it to church? ¡  Do my friends miss me? ¡  How can I be a good mother? ¡  Who will work to pay the bills?

16

(Knight & von Gunten, 2004b)

17

¨  Different names for the same thing? ¡  Spiritual suffering has been identified as the

experience of despair, spiritual pain, spiritual distress, spiritual struggles, spiritual problems, spiritual concerns, spiritual issues, existential pain, existential distress, existential suffering, existential concerns, religious pain, religious distress, and religious struggles (Exline, Prince-Paul, Root, & Peereboom, 2013; Mako, Galek, & Poppito, 2006; Heyse-Moore, 1996; UA, n.d.; Pargament, 2007; Chochinov & Cann, 2005).

18

¨  Spiritual distress is an "impaired ability to experience and integrate meaning and purpose in life through a persons connectedness with self, others, art, music, literature, nature, or a power greater than oneself" (Puchalski, Lunsford, Harris, & Miller, 2006, p. 405; Puchalski, 2008a; Lukoff, n.d.).

19

20

21

¨  Spiritual Needs ¡  Research suggests that over 80 to 90 percent of hospice

care clients may have spiritual needs (Peteet & Balboni, 2013; Gijsberts et al., 2011).

¡  In 2014, the median length of service was 17.4 days. This means that half of all hospice clients received hospice care for slightly over two weeks. Approximately 35.5% of clients died or were discharged in less than seven days of admission (NHPCO, 2014).

¡  In 2012, an average 16.8 percent of hospice clients with Medicare died within three days of enrollment (Bynum, Meara, Chang, & Rhoads, 2016).

22

What Would You Do?

¨  At times, the provision of spiritual care may stretch the boundaries of hospice social work, so coordination with other professionals may be the best expression of spiritual competence.

¨  When additional help is needed, hospice social workers may elicit the help of professionals with more expertise on the client's multidisciplinary team such as a board certified chaplain or client clergy in the community (Sperry & Miller, 2010; Koenig, 2007).

23

¨  The Role of Chaplains ¡  Education Level

ú  Master’s level preparation enables knowledge of: ú  Clinical Pastoral Education (CPE)

¡  Chaplains attend to specific religious needs. ¡  Broader role than that of a clergy person and serves

persons from all religious traditions

(Knight & von Gunten, 2004a; Koenig, 2007;

Callahan, publication pending) 24

¨  It is important to build spiritual competence by accessing opportunities for further education and skilled supervision.

25

What do you need?

¨  As described by Stanworth (2006), “When spirituality is approached in terms of waiting, disclosure, and encounter, issues of personhood inevitably arise alongside those of professional development. Who and how I am with others becomes as important as what I do. Technique alone cannot meet the spiritual needs of a dying person” (p. 33).

26

¨  Clients nearing the end of life have unique spiritual needs.

¨  Spiritual needs help clarify potential spiritual resources.

¨  There is a risk for unmet spiritual needs to evoke spiritual suffering.

27

28

Please contact me for more information:

Ann M. Callahan PhD, LCSW

Lecturer, College of Social Work Center of Excellence in Rural Health

University of Kentucky ann.callahan@uky.edu

Citation for this presentation: Callahan, A. M. (2016, March). Identifying spiritual needs and mobilizing spiritual resources. Workshop presented for the Social Work Hospice and Palliative Care Network General Assembly in Chicago, IL.

¨  Byock, I. R. (1996). The nature of suffering and the nature of opportunity at the end of life. Care of the Terminally Ill Patient, Clinics in Geriatric Medicine, 12(2), 237-252.

¨  Callahan, A. M. (publication pending). Spirituality and hospice social work. New York: Columbia University Press.

¨  Carroll, B. (2001). A phenomenological exploration of the nature of spirituality and spiritual care. Mortality, 6(1), 81-98.

¨  Chochinov, H. M., & Cann, B. J. (2005). Interventions to enhance the spiritual aspects of dying. Journal of Palliative Medicine, 8(Suppl. 1), 103-115.

¨  Cornette, K. (2005). For whenever i am weak, i am strong… International Journal of Palliative Nursing, 11(3), 147-153.

¨  Edwards, A., Pang, N., Shiu, V., & Chan, C. (2010). The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: A meta-study of qualitative research. Palliative Medicine, 24(8), 753-770. DOI: 10.1177/0269216310375860

¨  Exline, J. J., Prince-Paul, M., Root, B. L., & Peereboom, K. S. (2013). The spiritual struggle of anger toward god: A study with family members of hospice patients. Journal of Palliative Medicine, 16(4), 369-375. DOI: 10.1089/jpm.2012.0246

29

¨  Hermann, C. P. (2001). Spiritual needs of dying patients: A qualitative study. Oncology Nursing Forum, 28(1), 67-72.

¨  Hermann, C. P. (2006). Development and testing of the spiritual needs inventory for patients near the end of life. Oncology Nursing Forum, 33(4), 737-744. DOI: 10.1188/06.ONF.737-744

¨  Hermann, C. P. (2007). The degree to which spiritual needs of patients near the end of life are met. Oncology Nursing Forum, 34(1), 70-78. DOI: 10.1188/07.ONF.70-78

¨  Heyse-Moore, L. H. (1996). On spiritual pain in the dying. Mortality, 1(3), 297-315. ¨  Hills, J., Paice, J., Cameron, J., & Shott, S. (2005, August). Spirituality and Distress in

Palliative Care Consultation. Journal of Palliative Medicine, 8(4), 782-788. ¨  Kellehear, A. (2000). Spirituality and palliative care: A model of needs. Palliative

Medicine, 14(2), 149-155. ¨  Knight, S. J. and von Gunten, C. (2004a). EndLink: An internet-based end of life care

education program. Part 1: How to assess spirituality. Retrieved from http://endlink.lurie.northwestern.edu/religion_spirituality/part_one.pdf

¨  Knight, S. J. and von Gunten, C. (2004b). EndLink: An internet-based end of life care education program. Part II: Common needs and goals. Retrieved from http://endoflife.northwestern.edu/religion_spirituality/part_two.pdf

30

¨  Koenig, H. G. (2007). Spirituality in patient care: Why, how, when, and what (2nd ed.). Philadelphia, PA: Templeton Foundation Press.

¨  Lukoff, D. (n.d.). Dsm-iv religious & spiritual problems. Retrieved from http://www.spiritualcompetency.com/dsm4/dsmrsproblem.pdf

¨  Mako, C., Galek, K., & Poppito, S. R. (2006). Spiritual pain among patients with advanced cancer in palliative care. Journal of Palliative Medicine, 9, 1106-1113.

¨  Murray, S. A., Kendall, M., Boyd, K., Worth, A., & Benton, T. F. (2004). Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliative Medicine, 18, 39-45.

¨  Pargament, K. I. (2007). Spiritually integrated psychotherapy: Understanding and addressing the sacred. New York, NY: The Guilford Press.

¨  Puchalski, C. M. (2003a). Honoring the sacred in medicine: As an essential element of patient-centered care. Journal of Medicine and the Person, 6(3), 113-117.

¨  Puchalski, C. M., Lunsford, B., Harris, M. H., & Miller, T. (2006). Interdisciplinary spiritual care for seriously ill and dying patients: A collaborative model. The Cancer Journal, 12(5), 389-416.

31

¨  Sperry, L., & Miller, L. (2010). Spirituality in clinical practice: Theory and practice of spiritually oriented psychotherapy (2nd ed.). New York, NY: Routledge.

¨  Grant, E., Murray, S. A., Kendall, M., Boyd, C., Tilley, S., & Ryan, D. (2004). Spiritual issues and needs: Perspectives from patients with advanced cancer and nonmalignant disease. A qualitative study. Palliative and Supportive Care, 2, 371-378. DOI: 10.10170S1478951504040490

¨  Hospice and Palliative Nurses Association. (2013, October). Spiritual distress [PDF document]. Retrieved from https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CB4QFjAAahUKEwjN-ofy1vfGAhWIdD4KHYAWDNk&url=https%3A%2F%2Fwww.hpna.org%2FPicView.aspx%3FID%3D54&ei=YDy0Vc3KCIjp-QGArbDIDQ&usg=AFQjCNEROUjT5Qt6_a1C5KUvUgn0N5fwSA&sig2=yHdkY8U39mEjw07DLvGV2w&bvm=bv.98717601,d.cWw

¨  Mako, C., Galek, K., & Poppito, S. R. (2006). Spiritual pain among patients with advanced cancer in palliative care. Journal of Palliative Medicine, 9, 1106-1113.

32

¨  Murray, S. A., Kendall, M., Boyd, K., Worth, A., & Benton, T. F. (2004). Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliative Medicine, 18, 39-45.

¨  National Hospice and Palliative Care Organization. (2007). Offering spiritual support for family or friends [Brochure]. N.p.: Author.

¨  Nixon, A., & Narayanasamy, A. (2010). The spiritual needs of neuro-oncology patients from patients’ perspective. Journal of Clinical Nursing, 19, 2259-2270. DOI: 10.1111/j.1365-2702.2009.03112.x

¨  Narayanasamy, A. (2007). Palliative care and spirituality. Indian Journal of Palliative Care, 13(2), 32-41. 43-66. DOI: 10.1300/J496v19n02_04

¨  Puchalski, C. M. (2008c). Addressing the spiritual needs of patients. In P. Angelos (Ed.), Ethical issues in cancer patient care (2nd ed.) (pp. 79-91). New York, NY: Springer.

¨  Puchalski, C. M. (2013). Integrating spirituality into patient care: An essential element of person-centered care. Pol Arch Med Wewn, 123(9), 491-497.

33

¨  Stanworth, R. (2006). When spiritual horizons beckon: Recognizing ultimate meaning at the end of life. OMEGA: Journal of Death and Dying, 53(1-2), 27-36.

¨  University of Alabama. (n.d.). 4.2 Spiritual distress: Fostering transcendence at life’s end [PDF Document]. Retrieved from http://services.medicine.uab.edu/publicdocuments/palliativecare/resident/spiritual/palliative_response_4_1-2.pdf

¨  Wintz, S., & Cooper, E. (2003). Learning module: Cultural and spiritual sensitivity [PDF document]. Retrieved from http://www.healthcarechaplaincy.org/userimages/Cultural_Spiritual_Sensitivity_Learning_%20Module%207-10-09.pdf

¨  Yang, W., Staps, T., & Hijmans, E. (2010). Existential crisis and the awareness of dying: The role of meaning and spirituality. Omega, 61(1), 53-69. DOI: 10.2190/OM.61.1.c

34