MORAL DISTRESS: FINDING OUR VOICE A THERAPEUTIC APPROACH WITH PALLIATIVE CARE DECISION MAKING

SWHPN General Assembly March 11-13, 2018

Victoria Cerone, MSW, LCSW

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New York University Langone Medical Center The Palliative Care Service was developed in 1997

PALLIATIVE CARE

• “…an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”

(World Health Organization, 2015)

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Acute Hospital: An inpatient medical facility

providing therapy for severe illness and injury. The phase of illness includes pre-

diagnosis/diagnosis with symptoms.

Palliative care consults are on the increase in acute settings.

NYUMC there were 1,932.00 consults in 2017.

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www.jpalliativecare.com744 × 437Search by image

LEARNING OBJECTIVES

• Define moral distress and moral anguish (MDA)

• Distinguish common moral challenges and responses to healthcare providers in palliative care

• Identify therapeutic interventions for coping and building

resilience with individual challenges and working within interdisciplinary service teams

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MORAL DISTRESS

Jameton (1984) offered the first definition of moral distress in the nursing literature. He stated that moral distress is the stress

that occurs “when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course

of action.”

Corley (2002) institutional / ethical decision in which one feels “a power disparity that results in obstacles to an individual ability

to act ethically.”

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MORAL ANGUISH

Unlike Moral Distress, which may refer more narrowly to an individual’s emotions in contrast to

institutional constraints.

Moral anguish touches more closely on the personal, value laden emotional and existential fact

of our own standards of behavior or beliefs concerning what is and is not acceptable to do.

A psychological and spiritual phenomenon; memories

and subjective experiences of right and wrong.

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RESEARCH ON MORAL DISTRESS ACROSS PROFESSIONS

PREVALENCE OF MORAL DISTRESS IN HEALTHCARE WORKERS

• Study by Whitehead, et al., (2015) explored MD amongst a multitude of professions and settings at an 825 bed medical center in Virginia. A small selection of participant demographics are shown (top right).

• The study utilized the 21 item Revised Moral Distress Scale to gauge MD.

• Findings from the study showed that nurses had the highest levels of moral distress. Those who provided care for adults faced higher degrees of moral distress than those who worked with pediatrics.

• There was a wide variety in distress scores, with some professionals experiencing little MD, and some experiencing very high MD.

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BRIEF LOOK AT “ROOT CAUSES” OF MORAL DISTRESS

• Whitehead, et al., found that “Watching patient care suffer due to lack of provider continuity” was a top cause of MD across professions.

• “Pressure from insurers or administrators to reduce costs” was more highly reported as a root cause by non-ICU workers than by ICU workers.

• “Continuing to care for a hopelessly ill patient when no one will make a decision to withdraw support” was a common root cause for ICU workers, but not for non-ICU workers.

• The variance in MD by profession and setting is shown in the study’s table, shown on the right.

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EMOTIONAL • Feelings of powerlessness

• Emotional exhaustion

• Anger, Frustration, Resentment

• Affect and behavioral distress: anger irritability

• Depression, anxiety

• Cynicism and depersonalization

• Pessimism, Isolation, Detachment

• Guilt –I couldn’t fix

• Risks of low self-esteem, feeling weak, stigmatized

• Loss of integrity /sense of accomplishment, numbness

(Rushton, Caldwell , & Kurtz, 2016)

• Physical exhaustion

• Chronic fatigue

• Inconsistent thinking such as forgetfulness

• Cardiovascular issues

• Gastrointestinal issues

• Shivering, sweating, headaches

• Weight loss – gain

• Insomnia

PHYSICAL

MORAL DISTRESS AND MORAL ANGUISH (MDA)

RESPONSES

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BEHAVIORAL

• Hypervigilance

• Lashing out at others

• Addictive behaviors

• Avoidance

• Agitation

• Shaming others

• Horizontal or vertical violence

(Rushton, et al., 2016)

• Crisis of faith

• Disruption in religious belief

• Disconnection from work and/ or community

• Existential aloneness

SPIRITUAL

MDA RESPONSES, CONT.,

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IMPLICATIONS OF MDA

• Shares emotional responses with other syndromes: burnout, compassion fatigue, or posttraumatic stress disorder. (Hamric, 2014)

• Physical and emotional distress may lead to difficulties hiring and/or high rates of turnover which may result in repercussions of performance at work - possible issues related to the care and safety of patients and workers. (Corley, 2002 cited in Dalmolin, Lundardi, Barlem, & Silveira, 2012)

• It can also result in a loss of job satisfaction, poorer patient relationships, and even abandoning the job and the profession. (Nathaniel, 2005 cited in Dalmolin, et al., 2012)

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IMPLICATIONS OF MORAL DISTRESS AND MORAL ANGUISH

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Impact on Patient

Lack of Advocacy for Patient / Patient Avoidance

Increased Patient discomfort/suffering

Impact on Healthcare Worker

Suffering

Resignation Burnout

Leave Profession

Organization

High Turnover of Staff Decreased Quality of Care

Low patient satisfaction

Difficulty Staffing Reputation/Accreditation

Adapted from Model for a theory of moral distress (Corley, 2002)

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Patient and Family Narrative: Ms. M • The patient was a 64 y/o female with past medical history of NASH cirrhosis, S/P simultaneous liver and

kidney transplant. While the new organs were functioning well, patient’s postop course was complicated by pneumonia, cardiac arrhythmia, persistent fevers, and prolonged ventilator dependency. She did not regain her prior mental status.

• Prior to admission, the patient had completed a Living Will document stating she would not desire life sustaining treatments if it was determined by two physicians that she would not return to what she deemed an acceptable quality of life. Patient named her husband as her Health Care Agent who understood her definition of “quality” included not to live on machines.

• Patient’s family was supportive and by her bedside every day, and attempted to stimulate her senses. Multiple brain scans did not reveal a prominent reason for her condition. Occasionally, the patient would open her eyes when the family called her name. However, she did not track any of their movements or follow commands.

• A palliative care consult request was initiated approximately four months into her admission to discuss treatment options, goals of care and symptom management, and to provide psychosocial support for family’s anticipatory loss/grief. Palliative requested an ethics consult to provide overview.

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Ms. M, Cont. • After weeks of family meetings and counselling it was determined that the patient’s prognosis for recovery

was grave and that she was unlikely to return to a standard of living consistent with the patient’s wishes. With great sadness, the family decided to transition the patient to hospice, and to liberate the patient from the respirator, with the understanding she specifically recorded in her Living Will and discussed with her spouse she would not accept a quality of life sustained by machines.

• The day prior to the scheduled extubation, in the first seemingly meaningful activity the patient had displayed in months, the patient seemed to recognize her spouse and when he kissed her hello she kissed him back. On this day for a brief time she seemed to minimally process her family members presence when they were talking to her. She did not verbally respond. Hopeful, the family rescinded the transfer to hospice care.

• Unfortunately the next day the patient returned to her prior level of conscious activity. Twenty days later,

two physicians concurred that the patient presented with a poor prognosis for improvement to her prior baseline. The family agreed the goals of care would transition to comfort, with hospice services, included palliative liberation from the respirator and intravenous feeding. The patient died twelve days after the transition.

MORAL CHALLENGES

• Physicians: the transplant service who had been caring for her for multiple years aimed at working for her recovery accepting a poor prognosis transitioning to a comfort care goal of care.

• Surgeons: who by the outcome of the surgery expected optimal recover declaring her prognosis was poor.

• Consulting Physicians: who felt her wishes expressed in her Living Will will not be honored by the prolonged duration of intubation and ng feeding.

• NPs and RNs: who had concerns of not honoring her living will and the futility of sustained treatments in which the burdens vs benefits seemed questionable i.e., painful tests, prolonged intubation, ng tube feeding, IV hydration.

• Social Work: who had distress with the loss of her autonomy to care for her physical presence. Family distress with continued family meetings to discuss the futility of the goals of care and treatment options. Insurance utilization regarding limitations in planning discharge care.

• Chaplain: who experienced intra personal religious belief conflicting with palliative respirator liberation.

• Ethics: who negotiated honoring her wishes and finding a consensus among multiple disciplines guiding the process. 18

COMPLEX AND CHALLENGING

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Palliative Care requires critical thought and moral courage related to engagement into difficult biopsychosocial circumstances.

• From Fixing to Being

• Maintaining Perspective : time/tempo

• Negotiating and Maintaining Boundaries

• Paradoxes - detachment / commitment desensitization / compassion

(Breaden, Hegarty, Swetenham, & Grbich 2012)

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How Do We Address MDA – Intervene? How Do We Find Our Voice? • Acknowledge the existence - not if but when - and set aside the belief we are

weak if not able to do it all - the “Miss Fine” philosophy (Cerone, A., 2000)

• Acknowledge our strengths: assess our coping & resiliency mechanisms • Interventions: Institutional and Personal Assessment & Growth • Process: Education, Communication, and Collaboration

SATIR CHANGE MODEL

What is the transforming

Idea/Action - Change Agent?

To Prevent MDA Elevate/Build Moral Courage,

and Resilience.

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INSTITUTIONAL ACTIONS

• Ethics Forum – i.e., Schwartz Center Rounds

• Education: literature updates, education projects, and interactive competency workshops

• Communication between administration and practitioners

• Organizational - interdisciplinary dialogue, systematic rapid /ongoing response team

• Grass roots organizational events to identify issues and search for solutions

• Remove barriers

• Empower clinicians as moral agents

• Build psychological resilience

• Invigorate one for the work and professional growth

PERSONAL GROWTH

TRANSFORMING IDEAS & ACTIONS

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BUILDING RESILIENCE

Coping: refers to the strategies employed following the appraisal of a stressful encounter. (Fletcher & Sarkar 2013)

Resilience: influences how an event is appraised. (Fletcher, et al., 2013)

Resilience is “not just an attribute or capacity” it seems a “process to harness resources to sustain well-being.” (Panter-Brick & Leckman, 2013 cited in Southwick, Bonanno, Masten, Pantner-Brick, & Yehuda 2014)

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THERAPEUTIC MODALITIES TO BUILD RESILIENCE

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• Mezirow’ Transformative Learning

• Graham Gibbs’ Model of Reflection

• Cognitive Behavioral Theory (CBT)

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Mezirow’ Transformative Learning Theory (1990) A perspective transformation: psychological (subjective responses), beliefs/values (conventional wisdom), and behavioral (knee jerk). A planned course of action including acquiring of knowledge and skills providing for the purpose of understanding and validating clinical practice. Focus how we know vs what we know. Example: MDA conflict of treatments benefits vs burdens. Education and critical thinking regarding futility of treatments may enlighten understanding for decision making going forward.

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Graeme Gibbs Reflective Learning Cycle (1988) The cycle enables us to effectively reflect/critically think about incidents and occurrences and learn from them. Example: RN “Patient saying I think I am going to die today”. Response: Fixing vs Being

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Cognitive Behavioral Theory (Beck, Emery, & Greenberg 1985) Experience over time impacts / reinforces the patterns we develop. Examine the interactions between thoughts, emotions, and behaviors. Example: Feeling the need to attend the memorials of patients. Response: Alternative behaviors to find closure/pay your respects.

Thoughts

Emotion Behavior

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Focus Points For Building Resilience Skills

• Leveraging personal strengths

• Setting healthy boundaries

• Self-Regulating Emotions

• Recognizing cognitive distortions

• Tracking activation during the day

• Developing realistic expectations for one’s own performance

• Finding meaning in daily work

• Committing to long-term development (Back, Steinhauser, Kamal, & Jackson, 2016)

Author’s scope is focused in the area of palliative care in an acute care setting.

Recognition of ethnic / cultural influences in regard to MDA.

Neurobiology role in MDA work on the development of research and current knowledge.

Therapeutic modalities of integrative, self–care, and sensorimotor strategies to address MDA i.e., EMDR, mindfulness, deep breathing exercises, massage, guided imagery, hypnosis, and journaling.

CONSIDERATIONS:

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The insights of this presentation explore circumstances, determinates, and therapeutic modalities related to understanding and addressing moral distress and anguish.

They warrant consideration as a guide for Finding Our Voice to understand and facilitate a strengthening of the self and development of external resources.

IN SUMMARY

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CONCLUSION:

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It is a privilege to be with and care for patients and their caregivers during the most challenging of times. It is a time of sadness, bitter sweet expression, and outstandingly courageous events.

We make moral sense of our work guided by professional ethics and personal values. At times seeming a moth to the flame, managing feelings of intimacy and the fear of falling apart.

Let us not forget we, as healthcare workers, are foremost humans sharing in the experience.

It is by acknowledging and understanding our challenges we sooth our distress, build resilience, and bolster our courage to carry on the work we love and do endlessly, selfless, and brilliant.

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Thank You

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References

Lindsay, H., (2018). Assisted with Power Point editing and documentation for the presentation Moral Distress: Finding Our Voice a Therapeutic Approach with Palliative Care Decision Making. Back, A. L., Steinhauser, K. E., Kamal, A. H., & Jackson, V. E. (2016). Building resilience for palliative care clinicians: An approach to burnout prevention based on individual skills and workplace factors. Journal of Pain and Symptom Management, 52 (2), 284-289. Beck, A. T., Emery, G. & Greenberg, R. L. (1985). Anxiety disorders and phobias: a cognitive perspective. United States: Basic Books. Breaden, K., Hegarty, M., Swetenham, K., & Grbich, C. (2012). Negotiating uncertain terrain: A qualitative analysis of clinicians’ experiences of refractory suffering. Journal of Palliative Medicine, 15 (8), 896-901. Cerone, A., (2000). Direct verbal quote. Corley, M. (2002). Nurse moral distress: a proposed theory and research agenda. Nursing Ethics, 9(6), 636-50. Dalmolin, G. L., Lundardi, V. L., Barlem, E., L., & Silveira, R. S. (2012). Implications of moral distress on nurses and its similarities with burnout. SciELO Analytics Texto context- enfern. 21 (1) Florianopolis. Fletcher, D. & Sarkar, M. (2013). Psychological resilience a review and critique of definitions, concepts, and theory. European Psychologist, 18 (1),12-23. Gibbs, G. (1988). Learning by doing: A guide to teaching and learning methods. Oxford: Further Educational Unit, Oxford Polytechnic.

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References Cont.

Hamric, A. B. (2014). A case study of moral distress. Journal of Hospice & Palliative Nursing, 16 (8). www.jhpn.com Indian, J. (2010). Palliat Care: Table of contents. Indian J Palliat Care: Table of Contents www.jpalliativecare.com744 × 437Search by image Jameton, A. A. (1984). Nursing practice: the ethical issues. Upper Saddal River: Prentice Hall. Jenkinson, S. (2007). 100 little deaths before dying. In Emanuel L. and Librach SL (eds): Palliative Care: Core skills and Clinical Competencies. Philadelphia: Elsevier Saunders, 15-26. JiříMareš. (2016). Moral distress: terminology, theories and models. Kontaki, 18 (3), 137-e144. Mezirow, J., and Associates (eds.). Fostering Critical Reflection in Adulthood. San Francisco: Jossey-Bass, 1990. Munch, E. (1907). The Sick Child. [Painting]. London, England: TATE Museum. Retrieved from http://www.tate.org.uk/art/artwork/munch-the-sick-child-n05035 Nathaniel, A. (2002). Moral distress among nurses. The American Nursing Association Ethics and Hum Rights Issues Updates, 1(3). [online].[acesso 2005 Nov 12]; http;//www.nursingworld.org/MainMenueCategories/EthicsStandards/Resources/IssuesUpdate/UrIssuesUpdateSpring2002/MoralDistress.aspx [Links]

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Reference Cont.,

Panter-Brick, C., & Leckman, J. F. (2013). Editorial commentary: Resilience in child development-interconnected pathways to wellbeing. The Journal of Child Psychology and Psychiatry, 54:333-336. doii:10.1111/jcpp.12057. [PubMed] [Cross Ref] Rushton, C.H., Caldwell, M., & Kurtz, M. (2016). Moral distress: A catalyst in building moral resilience. AJN, American Journal of Nursing, 116 (7), p 40 - 49. Satir model grief and loss&view=detailv2&qpvt… http;//www.bing.com/images/search. Smith, T. (1961). Tony Smith, "Cigarette", 1961 | "Cigarette", 1961 ... Southwick, S. M., Bonanno, G.A., Masten, A.S., Pantner-Brick, C., & Yehuda, R. (2014). Resilience definitions, theory, and challenges: interdisciplinary perspectives. European Journal of Psychotraumatology, 5:10.3402/ejpt. V5.25338. online 2014 Oct.1. doi:10.3402/ejpt. V5.25338. Whitehead, P. B., Herbertson, R. K., Hamric, A. B., Epstein, E. G., & Fisher, J. M. (2015). Moral distress among healthcare professionals: report of an institution-wide survey. Nurs Scholarsh 47 (2) 117-25. World Health Organization. WHO Definition of Palliative Care. (2015). Retrieved from ww.who.int/cancer/palliative/definiton/en/ January, 2016.