The Experience of Suffering After Blunt Trauma

1. The Experience of SufferingAfter Blunt Trauma A Phenomenological Study Louis D. Filhour PhD, RN Albany Medical Center Albany, New York

2. Why a presentation on suffering related to blunt trauma? • Your patients with their wounds are suffering. • Do you know the different ways your patients are suffering? • You are treating their wounds, but are you treating their suffering? • Is your care helping them to bear their suffering or making it more unbearable? • Are you caring about your patients as you care for them? • This study on the experience of suffering related to blunt trauma may provide you some insight.

3. Suffering • Man has conceptualized suffering since the time of Aristotle and Plato as can be seen through Latin language (Kavanagh, 2007). • The Latin roots for suffering and patient both relate to bearing (Oxley, 2011). “Patiens”, or the Latin root for patient, means one who suffers intrinsically linking the patient experience with suffering. • Language of the Old Testament uses the term “evil” to convey suffering. • The Greeks modified this concept of suffering to something one experiences or feels. • Suffering became linked to a situation or the experience of evil rather than the previous perspective of being evil itself (Oxley, 2011).

4. Suffering • Cassell’s seminal work published in 1982 in the New England Journal of Medicine initiated an ongoing conversation about suffering as experienced by hospitalized patients. • Suffering results from a threat to a person’s intactness and as being complex because of its social and psychological elements. • Suffering is something experienced by the whole person, not just by their bodies and differentiated suffering from pain. • Suffering is a consequence of personhood and as such bodies do not suffer but rather persons do (Cassell, 1992). • Suffering results when ones’ beliefs and values are put to doubt to a degree that causes a lack of trust in the past (Cassell, 1992).

5. Suffering • Suffering is a personal, subjective, multidimensional phenomenon involving physical, emotional, social, cultural, and spiritual constituents (Morrissey, 2011). • The experience of suffering is significant because suffering violates human dignity by implying loss and dying (Arman, Rehnsfeldt, Lindholm, Harmin, & Eriksson, 2004). • Suffering impairs a person’s connectedness, beliefs, values, meaning, and even life’s purpose (Chio et al., 2008). • Suffering can become bearable by a patient making it compatible with health or suffering can be unbearable, significantly compromising health (Ruijs, Onwuteaka-Philipsen, van der Wal, & Kerkhof, 2009).

6. Suffering: The Problem • Suffering is a complex phenomenon central to every person’s health care experience (Raholm, 2008). • As patients, they look to health care for that relief and enhancement of their sense of well-being (Fredriksson & Eriksson, 2001). • Suffering of persons is, therefore, a central concern for nurses, physicians, and other health care staff (Morrissey, 2011). • Because of technological improvements, more people are surviving blunt trauma events only to experience potentially suffering for longer periods (Pavia et al., 2010). • There is a lack of understanding about suffering and therefore a lack of effective care strategies to address suffering (Eriksson, 1997, 2007; Milton, 2013).

7. Study • Purpose: To gain a fundamental understanding of the lived experience of suffering, bearing suffering, and becoming through suffering • Method: Phenomenological Design • Recorded Interviews • Questions provided prior • Validated Transcripts • NVivo 10 software • Validated Themes • Population: 17 males, ages 25-69, 7-12 months after discharge from a Level 1 Trauma Center for blunt trauma

8. Participants

9. Results: Four Themes • Threat to Normal • Physicality, Family, Work • Pattern Change • Physical, Emotional, Social, Economic, and Spiritual • Regaining Normal-Bearing Suffering • Intrinsic Factors, Extrinsic Factors • Revising Normal

10. Themes

11. Threat to Normal • To understand the experience of suffering, it was important to understand the basis of that suffering. • Suffering resulted from a threat to self and the importance of the meaning given to the event (Kahn & Steeves, 1986). • Participants in the study experienced suffering related to a threat to how they defined themselves, a threat to their holistic normal state or their meaning. • The participants defined themselves, their normal state or meaning in relation to their activity, families, or work.

12. Pattern Change • Suffering is the result of a person perceiving an impending or actual destruction to his wholeness or patterns. • Participants verbalized disruptions in their physical, emotional, social, economic, or spiritual patterns as experiences of suffering. • Analysis revealed the forms of suffering were not mutually exclusive but where interrelated.

13. Physical Suffering • Physical suffering was the form of suffering most frequently experienced by the participants in the study; 16 of 17. • Physical suffering clustered into five major types: • pain, • decreased activity tolerance, • sleep disruption, • memory loss, • constipation. • Physical suffering was also identified as contributing to emotional and social forms of suffering.

14. Emotional Suffering • 15 participants experienced emotional suffering • Injuries prevented some participants from physically being able to do their typical activities, which in turn impacted the emotional joy they would have normally experienced from doing those things. • For many of the participants, blunt trauma was a new experience and the associated unknowns about outcomes resulted in emotional suffering reported as worry, doubt, concern, or stress. • Depression was also recognized and verbalized by participants. • Participants also reported emotional suffering by describing significant feelings such as demoralized, vulnerable, humbled, insignificant, frustrated, and disappointed. • Behavioral changes including impatience, aggression, and depression also reflected experiences of emotional suffering.

15. Emotional Suffering • Their personal cohesiveness was threatened. • While the unrelieved pain was a source of suffering, a sense of powerlessness or loss of control and helplessness or dependency were additional sources of suffering. • Cassell (1991) found some individuals did not recognize their suffering; it was hidden from them until it was confirmed. Some participants in this study did not recognize their suffering until they reflected upon their experiences during the interview process.

16. Social Suffering • Social suffering resulted from a threat to previous normal social interaction patterns for 11 participants. • Resulted from changes in normal social interaction patterns with hospital staff, spouses, children, other family members, friends, or acquaintances. • Social suffering was associated with a change in role, relationships, or socialization. • Participants experienced a change from their normal role pattern of caretaker to a new role of one needing care. “If you thought you were independent, you're going to be humbled by the fact that you are going to need care.” • Dependence was the most frequently reported type of social suffering experienced by the participants because of role change. Participants who were dependent on others for help also experienced decreased socialization when that help was not readily available.

17. Economic Suffering • Economic suffering related to threats to the previous state of economic normal and was reported by 9 of the participants. • This form of suffering related to decreases in income secondary to the inability to work because of the physical injuries, expenses not covered by insurance such as $40,000 helicopter bills, or a lack of insurance. • Economic suffering contributed to emotional suffering in the form of doubt and worry. “The thing that worried us, worried all of us were some of the hospital bills were not covered.”

18. Spiritual Suffering • Only 4 participants reported an experience that reflected spiritual suffering. • Spiritual suffering related to a threat to the participant’s normal pattern of spirituality and was the least experienced form of suffering. • These few reports did not mean spirituality was not important to the participants in the study. • More participants found spirituality played a role in helping them to bear their suffering rather than contributing to it.

19. Experiences of Suffering by Participants

20. Combinations of Forms of Suffering and Frequency of Occurrence

21. Frequency and Interrelatedness of Forms of Suffering

22. Regaining Normal: Intrinsic Factors • As bones mended and concussions healed during their recovery process, participants progressed toward regaining their normal state and sense of wholeness. • This study found this journey was made easier by things that helped them to bear their suffering and was made more difficult by things that made their suffering more unbearable. • Positive factors intrinsic to the participant helped him to bear better his suffering. • A positive attitude and motivation to get well were two of the intrinsic factors identified from the data analysis. • The participant’s knowledge, either from previous experiences or newly acquired, made suffering more bearable as well as helped the participant to regain lost control, which also made his suffering more bearable.

23. Regaining Normal: Positive Extrinsic Factors • Positive extrinsic factors were essential to helping the participant in his lengthy process of recovery and regaining normal. • Examples of positive extrinsic factors included support from others to address physical, emotional, social, and economic sufferings. • Beneficial support from others reflected physical caring for and emotional caring about the participant.

24. Regaining Normal: Negative Extrinsic Factors • Some extrinsic factors made suffering more unbearable, negatively impacting the participant’s journey. • Poor quality of care by healthcare providers was the most significant negative extrinsic factor. • It was unbeneficial and did not reflect caring for or about the participant and contributed to physical, emotional, and social suffering.

25. Revising Normal • During recovery, participants had the opportunity to reflect on their experiences and for many of them this reflection led to a transformation; a revised normal. • Recognition of the fragility of life and their own vulnerability served as the basis for these transformations; a change in what they felt was important. • Because of these new perspectives, participants reported focusing more on today and less about the future. They also reported a decrease in their risk taking and a greater focus on time with their families. • For many participants, this was their first experience being a patient and being someone in need of care. As a part of their transformation, they reported an increase in empathy for others with injuries or disabilities.

26. Revising Normal: Finding Meaning • One comes to know the suffering patient’s world through the patient’s own story or narrative (Isovarra et al., 2006). • This humanistic approach to trauma aligns with the work of Frankl (2000) on man’s search for meaning. • Finding meaning through suffering and in suffering is a transcendent experience. • Meaning was found by making choices to change situations that could be changed or by making the choice to change attitudes about situations that could not be changed. • If healthcare providers can assist patients in finding meaning in their suffering, they can assist their patients enduring suffering (Deal, 2011).

27. Helping Patients To Bear Their Suffering • Poor quality of care at the hands of care providers resulted in undue suffering. • The findings of the study demonstrated the importance of listening fully to patients to understand the meaning they give their experiences and to use that understanding to guide the care provided. • By contributing to the patients’ understanding of their condition and care, healthcare providers play a key role in helping their patients bear their suffering. • Empowering their patients to make decisions about their care helps them gain control and bear suffering. Using human caring concepts healthcare providers should be able to provide care that reduces suffering while making the patient perceive being truly cared for and cared about.

28. Helping Patients To Bear Their Suffering • Increasing knowledge of the challenges and suffering experienced by patients after a significant injury is highly relevant for healthcare providers to promote care and caring in support of the patient’s need to find their new normal (Hyatt, Davis, & Barroso, 2015). • Using a strengths-based model, healthcare providers, as extrinsic factors, work with their patients by creating an environment that supports the patients’ innate healing (Gottlieb, 2014). This model facilitates the creation of an environment and experiences that enable the patient to take control of his life and decision making related to health care.

29. Helping Patients To Bear Suffering • Suffering is a unique experience based on the personal meaning the patient has given his suffering (Ferrell & Coyle, 2008). • It is important healthcare providers understand and respect culturally held beliefs and values of their patients if they are to help their patients address their suffering because culture provides the basis for the beliefs and values the patient uses to interpret their experiences (Chiu, 2000; Ferrell & Sun, 2006).

30. Helping Patients to Bear Suffering • Participants in this study identified being cared for and cared about as important elements in helping them to bear their suffering as they worked toward finding their new normal. • Healthcare students can be taught to become caring practitioners through the positive role modeling of caring by faculty. • Human caring is a central value of the healthcare profession and is something that can be learned and measured through education and thus should be modeled throughout a curriculum (Labrague, McEnroe-Petitte, Papathanasiou, Edet, & Arulappan, 2015).

32. Summary • Patients suffer because their sense of wholeness is threatened • Healthcare providers can help their patients bear their suffering or make it more unbearable • Helping your patient find meaning will help them bear their suffering and be transformed by it • Caring for and caring about your patients can: • Help them better bear their suffering • Help them find meaning • Help them be transformed by their suffering • Help them regain their sense of wholeness

34. References • Arman, M., Rehnsfeldt, A., Lindholm, L, Harmin, E., & Eriksson, K. (2004). Suffering related to health care: Title of journal article is to be placed in sentence case, except following the colon. A study of breast cancer patients’ experiences. International Journal of Nursing Practice, 10, 248-256. • Cassell, E. J. (1982). The nature of suffering and the goals of medicine. New England Journal of Medicine, 306, 639-645. • Cassell, E. J. (1991). Nature of suffering and the goals of medicine. New York, NY: Oxford University Press. • Cassell, E. J. (1992). The nature of suffering: Physical, psychological, social, and spiritual aspects. In P.L. Stark and J.P. McGovern (Eds.), The hidden dimension of illness: Human suffering (pp. 1-10). New York, NY: National League for Nursing Press.

35. References • Chio, C., Shih, F., Chiou, J., Lin, H., Hsiao, F., & Chen, Y. (2008). The lived experiences of spiritual suffering and the healing process among Taiwanese patients with terminal cancer. Journal of Clinical Nursing, 17, 735-743. • Chiu, L. (2000). Transcending breast cancer, transcending death: A Taiwanese population. Nursing Science Quarterly, 13, 64-72. • Deal, B. (2011). Finding meaning in suffering. Holistic Nursing Practice, 25, 205-210. • Eriksson, K. (1997). Understanding the world of the patient, the suffering human being: the new clinical paradigm for nursing to caring. Advanced Practice Nursing Quarterly, 3, 8-13. • Eriksson, K. (2007). Becoming through suffering-the path to health and holiness. International Journal of Human Caring, 11, 8-16.

36. References • Ferrell, B. R., & Coyle, N. (2008). The nature of suffering and the goals of nursing. New York, NY: Oxford University Press. • Ferrell, B. R., & Sun, V. (2006). Suffering. In R.M. Carroll-Johnson, L.M. Gorman, and N.J. Bush (Eds.), Psychosocial nursing care along the cancer continuum (pp. 155-168). Pittsburgh, PA: Oncology Nursing Society Publishing Division. • Frankl, V. E. (2000). Man’s search for ultimate meaning. Cambridge, MA: Perseus. • Fredriksson, L., & Eriksson, K. (2001). The patient’s narrative of suffering: a path to health? Scandinavian Journal of Caring Science, 15, 3-11. • Gottlieb, L. N. (2014). Strengths-based nursing: A holistic approach to care grounded in eight core values. American Journal of Nursing, 114, 24-32.

37. References • Hyatt, K. S., Davis, L. L., & Barroso, J. (2015). Finding the new normal: Accepting changes after combat-related mild traumatic brain injury. Journal of Nursing Scholarship, 47, 300-309. • Isovarra, S., Arman, M., & Rehnsfeldt, A. (2006). Family suffering related to war experiences: An interpretative synopsis review of the literature from a caring science perspective. Scandinavian Journal of Caring Science, 20, 241-250. • Kahn, D. L., & Steeves, R. H. (1986). The experience of suffering: Conceptual clarification and theoretical definition. Journal of Advanced Nursing, 11(6), 623-631. • Kavanagh, K. H. (2007). Meaning in suffering: a patchwork remembering. In N.E. Johnston & A. Scholler-Jaquish (Eds.), Meaning in suffering: caring practices in the health professions (pp. 7-59). Madison, WI: University of Wisconsin Press.

38. References • Labrague, L. J., McEnroe-Petitte, D. M., Papathanasiou, I. V., Edet, O. B., & Arulappan, J. (2015). Impact of instructor’s caring on students’ perceptions of their own caring behaviors. Journal of Nursing Scholarship, 47, 338-346. • Milton, C. L. (2013). Suffering. Nursing Science Quarterly, 26, 226-238. • Morrissey, M. B. (2011). Phenomenology of pain and suffering at the end of life: a humanistic perspective in gerontological health and social work. Journal of Social Work in End-of-Life & Palliative Care, 7, 14-38. • Oxley, K. (2011). Suffering transfigured: Phenomenological personalism in the doctor-patient relationship. (Unpublished doctoral dissertation). Retrieved from ProQuest Dissertations and Theses. (904583410?aacountid=35812)

39. References • Paiva, L., Rossi, L., Costa, M., & Dantas, R. (2010). The experiences and consequences of a multiple trauma event from the perspective of the patient. Revista Latino-Americana de Enfermagem, 18, 1221-1228. • Raholm, M. (2008). Uncovering the ethics of suffering using a narrative approach. Nursing Ethics, 15, 26-72. • Ruijs, K., Onwuteaka-Philipsen, B., van der Wal, G., & Kerkhof, A. (2009). Unbearability of suffering at the end of life: the development of a new measuring device, the SOS-V. BioMed Central Palliative Care, 8, 16-25.