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Daniel Garros, MD Associate Professor of Pediatrics The Dossetor Health Ethics Centre & Univ. of Alberta, Attending Physician, PICU, Stollery Childrens Hospital Wendy Austin, RN, PhD Professor Emeritus Canada Research Chair ( Relational Ethics in Health Care ) 2003-2013 The Dossetor Health Ethics Centre & Univ. of Alberta Edmonton, Canada

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Before I realized that she was going to die, I felt justified in doing all our little heroic things that we do, and theyre painful things. After I knew she was going to die, I felt badly doing those things. I felt badly that we were prolonging the pain for her. PICU Nurse in Davies et al., 1996, p. 502.

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The pain or anguish affecting the mind, body or relationships in response to a situation in which the person is aware of a moral problem, acknowledges moral responsibility, and makes a moral judgment about the correct action; yet, as a result of real or perceived constraints, participates in perceived moral wrongdoing, or is unable to act on ones moral choices. Nathaniel, A. (2006). Moral Reckoning in Nursing. Western Journal of Nursing Research, 28(4), 419-438. Definition on p. 421. Nathaniel, A. (2003). A Grounded theory of moral reckoning in nursing. West Virginia University, p. 22. Moral Distress

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Arises when a person believes s/he knows the right thing to do But is unable to act on ones moral choices, due to: Internal (personal) constraints Or because of external (contextual) barriers

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Practitioner Outcome 1 Action 1 ? Outcome 2 Action 2 ?

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Practitioner ---------///-------------- Outcome Action blocked

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May be an expression of sensitivity to the moral aspects of practice Appreciation of vulnerability of patients Embracing of values expressed in codes of ethics Acceptance of accountability and moral responsibility

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The moral self is a self always haunted by the suspicion that it is not moral enough. (Bauman, Postmodern Ethics, p. 80)

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Moral residue George Webster & Franois Baylis Crescendo Effect Elizabeth Epstein & Ann Hamric

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Journal of Clinical Ethics

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The starkest of alternativeslife and death of children are focused in sharp relief in the PICU. 1 1.DeMaso, D. & Meyer, E. (1996). A psychiatric consultants survival guide to the pediatric intensive care unit. J AM Acad Child Adolesc Psychiatry, 35, 1411- 13. 2.Austin, W., Kelecevic, J., Goble, E. & Mekechuk, J. (2009). An overview of moral distress and the PICU Team, Nursing Ethics, 16(1), 57-68. PICUs are high-tech, high-pressure environments in which physicians (intensivists) co-ordinate a multidisciplinary team 2 PICU teams include: physicians, nurses, respiratory therapists, social workers, dieticians, pharmacists, physical therapists, occupational therapists, psychologists clergy. 2

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High Tech Environment Multidisciplinary Teams End-of-Life Decision-Making

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Their story, yours, mine - its what we all carry with us on this trip we take, and we owe it to each other to respect our stories and learn from them. - William Carlos Williams

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Setting: 6 Canadian PICUs Participants: nurses, intensivists, dieticians, social workers, respiratory therapists, residents Story Gathering interviews, focus groups Analysis: extraction of stories (63) creation of typology Dissemination: Play: Just Keep Breathing; Website; Presentations & Publications Further research Secondary analysis re: org influences Dissemination grant

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Part II

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Communication Breakdown Hierarchy & Power differences our voice not heard (a team?) Multidisciplinary conflicts Conflicts with families dissimilar goals of therapy diverse views on disability Patient suffering

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Clinical situations: Unnecessary Treatment Prolonged dying aggressive treatment Inadequate inform consent Incompetence of colleagues Being in the middle Internal Factors Perceive powerless Lack of Knowledge Increased moral sensitivity Lack of FULL understanding of a situation Amric et al, The Pharos, 2006

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Institution culture/ constrains Lack of time Understaffing Lack of admin support Polices and priorities and conflict with care needs Pressure to reduce cost compromising care Reimbursement constrains Co-worker issues/ different professional perspectives Amric, A et al, The Faros, 2006

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Debriefing formal and informal Ethics consultation Ethics training develop tools for sense-making and coping Rounds learning from cases Interdisciplinary understanding and support Inclusive decision-making (including family) Time away from unit/situation Self-care exercise, spirituality, humour, journaling, Sharing with a colleague; spouse

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Time away from unit/situation Time away from unit/situation Self-care: Self-care: fitness strategies fitness strategies spiritual strategies (e.g., rituals) spiritual strategies (e.g., rituals) journaling journaling humour humour

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This is not a place where I have the freedom to work ethically.

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www.picumoraldistress.ualberta.ca www.justkeepbreathingfilm.com www.facebook.com/justkeepbreathingfilm