Care for the Caregiver: Assessing and Addressing the “Cost” of Caring Mary Lou O’Gorman, MDiv, BCC Executive Director of Pastoral Care and CPE Saint Thomas Health Nashville, Tennessee

Objectives Describe the causes, symptoms and impact of moral distress, compassion fatigue, burnout and other sources of staff distress. Describe the cultural, organizational, professional and personal factors that contribute to that distress. Identify strategies and “best practices” that provide care for the caregiver.

The Schwartz Center April 2013 Burnout suffered by More than a third of nurses More than a quarter of physicians Numbers are increasing Caregivers need Support, opportunities to share Joys and challenges Time for patient/family interactions Their health and wellbeing to be valued

Continuum? Compassion Fatigue Grief Out Moral Distress PTSDBurn Out Vicarious Traumatization

Moral Distress Defined… “…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.” Alvita Nathaniel MSN, RNCS In Nursing World, July 28, 2002

…moral distress defined “Painful feelings and/or the psychological disequilibrium that occurs when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action.” Jameton A. Nursing Practice: The Ethical Issues. NJ:Prentiss-Hall. 1984

…moral distress defined 1993 Jameton distinguished: Initial: frustration, anger and anxiety due to Institutional obstacles Interpersonal conflict about values Reactive: due to failure to address initial distress 2000 Webster and Baylis included: Failure to pursue “right” course of action due to Error in judgment Personal failing Circumstances beyond control May feel cherished beliefs violated Compromised integrity

…distress Burn out Individual or group stress related to one’s relationship with the work environment. Feel overwhelmed. Compassion fatigue Gradual lessening, over time of ability to be compassionate. The price one pays for caring. Emotional stress experienced from exposure to the suffering of others.

…distress Secondary Traumatic Stress (STS) Presence of Post-Traumatic Stress Disorder (PTSD) in the caregiver. Due to relationship and/or proximity. Both STS and CF are caused by exposure to patients who have been traumatized or are suffering, not to the traumatic event itself. Vicarious traumatization

“It's possible I am pushing through solid rock in flintlike layers, as the ore lies, alone; I am such a long way in I see no way through, and no space: everything is close to my face, and everything close to my face is stone. I don't have much knowledge yet in grief -- so this massive darkness makes me small. You be the master: make yourself fierce, break in : then your great transforming will happen to me, and my great grief cry will happen to you.” -Rilke

Other/Related Distress… Grief out Repeated, sustained and often unresolved grief and loss. Jading Process leading to exhaustion from being overdriven to perform long, continued labor and/or severe or tedious tasks. Leaves one angry, even mean.

Continuum? Compassion Fatigue Grief Out Moral Distress PTSDBurn Out Vicarious Traumatization

Caregiving: A Moral Endeavor Practice Fundamentally ethical Roots of the caring professions Hotel Dieu: “House of God” Nursing : The Finest Art. An Illustrated History Promotion of ideal patient care Respect for persons Role as advocate Safe and best care Caregiver-patient relationship is complex Patient focused caring Some distress is unavoidable

Constraints/Barriers Organizational Professional Personal

Organizational Barriers Hospitals/other settings Biomedical focus Technology Lack of time Failure of team Leadership dynamics Lack of collaboration Conflict Patient/client with sudden, critical illness Wishes unknown Sustained proximity when others walk away

Contributing Factors Cure orientation Technology Death a failure Discomfort with own mortality Belief “doing everything” a sign of faithfulness Staffing Insufficient Novice staff High patients acuity

Professional Barriers Staffing So low, care is inadequate Lack of time, skill Novice staff Multiple deaths in close succession High patient/client acuity Organizational change Quality, safety Cost-cutting: Doing more with less Leadership dynamics Effectiveness of team Power imbalance Lack of collaboration

….professional Role and relevance questions Limited role in decision making Belief that decisions contradict best interests Confusion about plan Communication failures In team, between teams Too many partners or consultants Patient and/or family Technological imperative/futility Doing everything vs. the right thing Belief “doing everything” a sign of faithfulness Death a failure Discomfort with own mortality

….professional Nature of relationships Closeness/identification Dynamics with patient and/or family Conflict Assertive/aggressive patients/clients and families Intra or interdisciplinary conflict Outside pressures Organizational, professional, personal Economy Politics Sustained proximity when others walk away

Personal Psychological/emotional Closeness/identification with patient/client Boundaries Isolation Feelings of powerlessness or helplessness Feelings of failure or guilt Inability to talk about feelings

…personal Grief and Loss Lack of time to process Accumulated grief and loss Lack of closure Compromise of one’s standard of care Inadequate staffing Inability to meet perceived needs of patient Lack of resources, services Futility

Symptoms of Distress Fatigue Emotional, physical Somatic concerns Diet, sleep, physical illness Absenteeism Poor or inappropriate care Recipients of care Self Feelings of inadequacy Personal, professional Feeling victimized

…symptoms of distress Irritability, anger, insults, resentment, conflicts Anxiety Frustration Depression Blaming others See self as having lost Integrity Authenticity Distancing oneself Isolation Friends, family Colleagues Loss of meaning Crisis of faith

Addressing Distress… Cause analysis Self awareness/self monitoring Limits, issues Address issues in real time Debriefing “Talk about it” Ethical decision-making Referral Skill-building Grief work

…addressing distress Engage in work of “letting go” At the bedside Funerals, journal, phone calls Sacred/holy Story telling Self-care Balance Spiritual practice Therapy Find own voice/Advocacy Courage Develop sources of support Professional relationships Social relationships “Play”

Resources to Address Staff Distress Spiritual nurture provided on a regular basis Staff follow-up Support Groups CISM Schwartz Rounds Provide places of sanctuary

“To heal a person, one must first be a person.” -Abraham Heschel

Healing Teams/Environments Interdisciplinary/Collaborative Role modeling Mentoring Skill building and education Conversation Affirmation of positive Encouraging when negative Flexible and creative Trusting environment Safe place to talk Bereavement Strong leader

Effective Organizations

Organizational Obligations Recurring issues/systemic causes of moral distress identified and monitored Corrective action Adequate financial and people resources Ethics resources Palliative care Conflict resolution Interdisciplinary forums to discuss complex “situations” Mechanisms to address futile care Accountability for practice and behavior Skill building, education, mentoring Bereavement mechanism Areas where death is frequent Opportunities for breaks and places of “Sanctuary”

Chaplains Needed skills to address staff distress Are involved in clinical arena Accessible Part of the team Incarnate the presence of the Source of all Hope Ministry to care providers is part of the job description

Pastoral Leadership Advocates for patient’s wishes and goals Develops and maintains strong team relationships Possesses strong communication skills Possesses skill in ethical decision-making and in conflict resolution Attends and participates in significant patient/family conferences Uses appropriate referrals to address issues Is courageous

QUESTIONS ?