The Inner Life of Professional Caregivers and the Care of the Seriously Ill

1. The Inner Life of Professional Caregivers and the Care of the Seriously Ill R. Sean Morrison, MD Director, National Palliative Care Research Center Hermann Merkin Professor of Palliative Care Professor, Geriatrics and Medicine Vice-Chair for Research Brookdale Department of Geriatrics & Adult Development Mount Sinai School of Medicine New York, NY sean.morrison@mssm.edu www.nprc.org

2. Objectives • Understand that our personal experiences / culture / background / emotions may affect interactions with patients • Provide an environment to discuss our personal experiences on caring for patients with dementia

3. Outline • Introductions • The importance of self-awareness • Consequences of unexamined emotions • A model for detecting and working with emotions • Professional self-care • Discussion

4. Point for Today’s Discussion • Not to discuss ethical, legal or moral issues surrounding this case • Not to place blame • To consider potential causes for the behaviour and to identify opportunities • To consider our reactions and how this might affect how we care for our patients

5. The Importance of Self-Awareness • Our professional obligation and duty is to care for the sick • Fundamentally asymmetrical relationship • Needs and interests of the patient and family are sole focus of the relationship • Health care professionals feelings are extraneous But…we all have feelings and our feelings can affect our care

6. Why consider our feelings? Mr. G was an 88 year old Orthodox Jewish man with moderate dementia and diabetes, hospitalized for recurrences of pneumonia, gangrenous foot ulcers, and obstructive urosepsis. His hospitalization was complicated by a protracted delirium and significant physical discomfort and pain. When discussing goals of care, Mr. G’s daughter insisted on continued maximal application of technical life sustaining therapies, saying to his doctor “You’re our hero and you’ll be able to save him. I know you will. Don’t give up on him!” In particular, the daughter refused to allow adequate analgesia, fearing it might worsen her father’s mental status and shorten his life. The physician felt helpless to intervene on behalf of his patient and began to avoid both him and his daughter in the hospital. The patient died after a difficult three week hospitalization in spite of maximal life sustaining treatments.

7. The Impact of Unaddressed Emotions on Patient Care • Poor quality patient care • Failure to identify patient-specific and family-specific valued influencing care • Incoherent care goals • Increased health care use, inappropriate use of life-sustaining medical technologies because of failure to engage in time-consuming decision processes, lack of clarity about care goals • Patient/family mistrust of health care system and professionals • Avoidance leading to medical complications

8. The Impact of Unaddressed Emotions on Professionals • Professional Loneliness • Loss of professional sense of meaning and mission • Loss of clarity about the ends of medicine • Cynicism, helplessness, hopelessness, frustration • Anger about the health system and the practice of medicine • Loss of sense of patient as a fellow human being • Increased risk of professional burnout, depression

9. Helping Our Patients By Helping Ourselves (A 5 Step Protocol) • Identify risk factors that predispose to emotions that may affect patient care • Monitor and identify behaviors and feelings • Name and accept the emotion • Identify possible sources of the emotion • Respond constructively to the emotion

10. 1. Identify Risk Factors • Professional • Patient • Situational

11. Risk Factors: Professional • Identification with the patient • Appearance, profession, age • Patient similar to an important person in your life • Ill family member, recently bereaved, unresolved loss or grief • Professional sense of inadequacy or failure • Unconscious reflection of feelings originating within and expressed by family • Inability to tolerate high and protracted levels of ambiguity • Fear of death, disability, dementia • Depression, substance abuse

12. Risk Factors: Situational • Long-standing close relationship with patient/family • Prior personal relationship with patient/family • Family disagrees with goals of care • Disagreement with colleagues over patient management • Conflicting professional obligations • Time pressures • Multiple hospital admissions within short time frame • Prolonged hospitalization • High level of ambiguity and uncertainty about prognosis • Protracted uncertainty about goals of medical care

13. Risk Factors: Patient and Family • Patient/family angry or depressed • Patient is a medical or health professional • Patient is well known (famous) or in another special category • Complex or dysfunctional patient-family dynamics • Mistrust caused by short-term relationship

14. Behaviors (Signs) • Avoiding the patient • Avoiding the family • Failing to communicate effectively with other professionals about the patient • Dismissive or belittling remarks about the patient to other colleagues • Failure to attend to details of patient care • Physical signs of stress or tension when seeing the patient or family • Contact with the patient or family more often than medically necessary

15. Emotions (Symptoms) • Anger at the patient or family • Feeling imposed upon or harassed by patient or family • Feeling of contempt for patient or family • Intrusive thoughts about patient or family • Sense of failure or self blame, guilt • Feeling a personal obligation to ‘save’ this patient • Frequently feeling victimized by the demands of the practice of medicine

16. 3.a. Name the Emotion • First and most important step in controlling the emotion • Separating and naming the feeling may lead to: • Restoration of conscious control over how to best care for the patient • Rational choices about how to best care for the patient • EVEN if the root causes of the emotion are unknown

17. 3.b. Accept the Emotion • Our guilt over strong emotions can prevent us from exerting control over them • Feelings are normal, it is the resulting behaviour that may be maladaptive • Accepting our feelings can allow us to make a conscious and genuine choice about how to proceed

18. 4. Reflect on the Emotion and Its Causes • Consider connections between the emotions and the behaviours. • Consider and consciously examine risk factors

19. 5. Respond Constructively to the Emotion • Step back from the situation to gain perspective • Identify behaviours resulting from the feeling • Consider implications and consequences of behaviours • Think through the alternative outcomes for patients according to different behaviors • Consult a trusted professional colleague