Psycho-Oncologyand Palliative Care:

Potential Contributions

Jimmie C. Holland, M.D.Founding President,

International Psycho-Oncology SocietyAttending Psychiatrist, Psychiatry& Behavioral Sciences

Memorial Sloan-Kettering Cancer Center

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)

HISTORICAL BARRIERS – 1

Double Stigma

• Patients not told their diagnosis and psychological responses

could not be explored

• Mental disorders/illness long feared and stigmatized

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

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

Barriers to Psych-Oncology Issues in Palliative Care

• Attitudes of medical staff that assume the “nonphysical” psychological domain as lessimportant

• 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

• 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

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

Barriers to Psych-Oncology Issues in Palliative Care

• 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

Advanced Cancer RequiresCoping With

EXISTENTIAL CRISES IN CANCER

DIAGNOSISOFCANCER

ADVANCINGDISEASE;

DNR; HOSPICE

RECURRENCEOF

DISEASE

COMPLETIONOF

TREATMENT DEATH

INITIALTREATMENT

N.E.D. TERMINALPALLIATIVETREATMENT

Adapted from McCormick & Conley, 1995

“I could die from

this.”

“I have survived --

will it Return?”

“I will likely die” -- depressed;

anxious

“I am dying.”

“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

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

• Loss of meaning

• Loss of control (helpless)

• Need for connection to some larger whole, greater than self

J. Kass, 1996

Psychospiritual Crisis of ILLNESS

• 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

Spiritual and ReligiousBeliefs Provide

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

Contributions to Care - 1• Psychological interventions unique for

palliative careMeaning-centered therapies Frankl Meaning-Based

Breitbart Dignity-Conserving

Chochinov Meaning-Folkman

Holland

• 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

Folkman-based Psychotherapy

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

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

Treatment Guidelines for Mental Health Professionals

DSM-IV DiagnosesDementiaDeliriumMood disorder (depression)Adjustment disorder

(reactive anxiety/depression)Anxiety disorderSubstance abusePersonality disorder

Treatment Guidelines for Social Work

Practical Problemshousing, assistance

Psychosocial Problemsfamily conflictcommunicationculture/language

Treatment Guidelines for Pastoral Counseling

Death/afterlifeLoss of faith/meaningGriefIsolation from religious communityGuiltHopelessness

• NCCN Clinical Practice Guidelines for distress have been modified for end-of- life care – they should be tested in a clinical setting

Holland & Chertkov, 2001IOM Improving Palliative-Care

Contributions to Care – BurnoutMental health of Staff

• Physicians’ acknowledged feelings

(anger, frustration, depression) • Affect

Clinical decisionsBehavior with patientsQuality of careRisk of burnout

Meier et al, 2002

Common Burnout Symptoms

PSYCHOLOGICALFrustrationIrritabilityTense, sad feelingAngerWithdrawn; “Numb”Detached emotionallyCynical about work

PHYSICALFatigueInsomniaHeadachesBack achesAppetite changeGI disturbance

UK Study 476 Oncologists

BurnoutEmotional exhaustion 31%Low personal Accomplish 33%Diminished Empathy 23%

Psychiatric Disorder (GHI) 28%

Ramirez et al, BMJ, 1995

Research Directions - 1

• Pro inflammatory cytokines as cause for fatigue, poor concentration,

depression, anxiety(↑ in pancreatic patients)

• Cytokine-induced Sickness behavior in animals

• Several cancer-related symptoms

• Fatigue• Pain• Anxiety

• Depression• Cognitive loss• Weakness

Research Directions - 2

C. Cleeland, et al, Cancer, 2003, Working Group

Research Directions - 3

Research Directions - 4

• Genetic contributions to chemo-related cognitive deficit

APOE4 allele

• Fatigue (DYPD over expression)

“….the secret of the care of the patient is in caring for the patient.”

Peabody, JAMA 1926

IPOS Liaison to National Psycho-Oncology Societies

hollandj@mskcc.org www.apos-society.org

8th WORLD CONGRESS8th WORLD CONGRESSPSYCHO-ONCOLOGYPSYCHO-ONCOLOGY

"Multidisciplinary Psychosocial Oncology: Dialogue and Interaction"

18 - 21 October 2006Palazzo del Cinema

Venice, ItalyDetails will continue to be posted on the conference website at

www.ipos2006.it