Psycho-Oncology and Palliative Care: Potential Contributions

1. Psycho-Oncologyand Palliative Care: Potential Contributions Jimmie C. Holland, M.D. Founding President, International Psycho-Oncology Society Attending Psychiatrist, Psychiatry& Behavioral Sciences Memorial Sloan-Kettering Cancer Center

2. PSYCHO-ONCOLOGY Definition • Multidisciplinary subspecialty of oncology concerned with the emotional responses of patients at all stages of disease, their families and staff (psychosocial) • The psychological, social and behavioral variables that influence cancer prevention, risk and survival (cancer control)

3. HISTORICAL BARRIERS – 1 Double Stigma • Patients not told their diagnosis and psychological responses could not be explored • Mental disorders/illness long feared and stigmatized

4. HISTORICAL BARRIERS – 2 • Belief that subjective phenomena (pain, feelings) could not be quantitatively measured • Patient’s self-report was considered unreliable (only observer ratings reliable) • Social science methods were not understood by basic scientists

5. Basic to Psycho-Oncology Research • Developed and validated quantitative measures of subjective symptoms • QOL • Core and disease specific modules • Pain • Fatigue • Distress • Anxiety • Depression • Delirium

6. Barriers to Psych-Oncology Issues in Palliative Care • Attitudes of medical staff that assume the “nonphysical” psychological domain as less important • Attitudes of patients and family: “Think I’m crazy”: embarrassed, angry by mental health consultation • Attitudes may discourage integration of mental health member of palliative care team

7. Barriers to Psych-Oncology Issues in Palliative Care • Absence of training of palliative care team in recognition, diagnosis and management of distress and absence of an algorithm when to refer to mental health • Inadequate funding for mental health counselors as compared to medical • Absence of minimum standards and accountability for psychological, social care and for meeting existential, spiritual needs

8. Barriers to Psych-Oncology Issues in Palliative Care • Inadequate numbers of well-trained mental health professionals in psychosocial care • Too few training programs • Absence of oversight of staff in management of psychosocial/ psychiatric problems

9. Advanced Cancer RequiresCoping With • Physical symptoms (pain, fatigue) • Psychological (fears, sadness) • Social (family, future) • Spiritual – seeking a comforting philosophical, religious, or spiritual beliefs • Existential – seeking meaning of life in the face of death

10. DIAGNOSISOFCANCER COMPLETION OF TREATMENT RECURRENCE OF DISEASE ADVANCING DISEASE; DNR; HOSPICE DEATH INITIAL TREATMENT N.E.D. PALLIATIVE TREATMENT TERMINAL EXISTENTIAL CRISES IN CANCER “I could die from this.” “I have survived -- will it Return?” “I will likely die” -- depressed; anxious “I am dying.” Adapted from McCormick & Conley, 1995

11. “We are not ourselves when nature, being oppressed, commands the mind to suffer with the body” King Lear, Act II, Sc. IV, L 116-119

12. What to call this constellation of non physical aspects of severe illness? “Suffering of the mind” “Existential crisis” “Human side” Overlapping psychological and spiritual domains: psychospiritual crisis

13. Psychospiritual Crisis of ILLNESS • Loss of meaning • Loss of control (helpless) • Need for connection to some larger whole, greater than self J. Kass, 1996

14. Spiritual and ReligiousBeliefs Provide • A way of coping and feeling in control despite the uncertainty, treat of death, the unknown, and loss • A set of moral values • Comforting rituals (prayer, mediation) • An existential perspective (meaning of life, death, connection to greater whole) • Support (emotional and tangible) of those who share similar beliefs

15. DISTRESS in Cancer An unpleasant emotional experience of a psychological, social and/or spiritual nature which extends on a continuum from normal feelings of vulnerability, sadness and fears to disabling problems such as depression, anxiety, panic, social isolation and spiritual crisis. Adapted, NCCN

16. Contributions to Care - 1 • Psychological interventions unique for palliative care Meaning-centered therapies  Frankl Meaning-Based Breitbart  Dignity-Conserving Chochinov  Meaning-Folkman Holland

17. Folkman-based Psychotherapy • Help patient reconcile life goals and plans with constraints of illness and loss • Use beliefs, values, prior strengths, to find a new and tolerable meaning of life in the face of death

18. Contributions to Care - 2 • Concern for family members  Identifying their concerns Conflict, needs (distress levels are as high as patients)  Evaluation of minor children-guidance in how to talk to them  Grief counseling for family

19. Contributions to Care - 3 • Education of staff and patients that seeking treatment for psychological problems is not a sign of weakness • Advocate as a team member to psychosocial and “human” side of care

20. Treatment Guidelines for Mental Health Professionals DSM-IV Diagnoses Dementia Delirium Mood disorder (depression) Adjustment disorder (reactive anxiety/depression) Anxiety disorder Substance abuse Personality disorder

21. Treatment Guidelines for Social Work Practical Problems housing, assistance Psychosocial Problems family conflict communication culture/language

22. Treatment Guidelines for Pastoral Counseling Death/afterlife Loss of faith/meaning Grief Isolation from religious community Guilt Hopelessness

23. NCCN Clinical Practice Guidelines for distress have been modified for end-of- life care – they should be tested in a clinical setting • Holland & Chertkov, 2001 • IOM Improving Palliative-Care

24. Contributions to Care – Burnout • Mental health of Staff • Physicians’ acknowledged feelings • (anger, frustration, depression) • Affect • Clinical decisions • Behavior with patients • Quality of care • Risk of burnout • Meier et al, 2002

25. PSYCHOLOGICAL Frustration Irritability Tense, sad feeling Anger Withdrawn; “Numb” Detached emotionally Cynical about work PHYSICAL Fatigue Insomnia Headaches Back aches Appetite change GI disturbance Common Burnout Symptoms

26. UK Study 476 Oncologists Burnout Emotional exhaustion 31% Low personal Accomplish 33% Diminished Empathy 23% Psychiatric Disorder (GHI) 28% Ramirez et al, BMJ, 1995

28. Research Directions - 1 • Pro inflammatory cytokines as cause for fatigue, poor concentration, depression, anxiety (↑ in pancreatic patients)

29. Research Directions - 2 • Cytokine-induced Sickness behavior in animals • Several cancer-related symptoms • Fatigue • Pain • Anxiety • Depression • Cognitive loss • Weakness

30. Research Directions - 3 C. Cleeland, et al, Cancer, 2003, Working Group

31. Research Directions - 4 • Genetic contributions to chemo- related cognitive deficit APOE4 allele • Fatigue (DYPD over expression)

32. “….the secret of the care of the patient is in caring for the patient.” Peabody, JAMA 1926

33. IPOS Liaison to National Psycho-Oncology Societies hollandj@mskcc.org www.apos-society.org

34. 8th WORLD CONGRESS PSYCHO-ONCOLOGY "Multidisciplinary Psychosocial Oncology: Dialogue and Interaction" 18 - 21 October 2006 Palazzo del Cinema Venice, Italy Details will continue to be posted on the conference website at www.ipos2006.it