SUPPORTIVE CARE FOR THE CANCER PATIENT Kathryn M. Kash, Ph.D. Thomas Jefferson University Psychiatry & Human Behavior

Standards for Psychosocial Care in Oncology The Central Role of Nursing in Establishing and Implementing Standards

Psychosocial Standards for Outpatient Care  Nurses' “gatekeeper” role has always included patients’ and families’ concerns  Nurses have a central role in assuring optimal psychosocial care  Managed care places an even greater burden on nurses as doctors have shorter visits with more patients

Standards for Psychosocial Care Managed care creates a situation in busy clinics which allows little attention for psychosocial problems: The “Don’t Ask, Don’t Tell” policy Doctors don’t ask; patients don’t tell

The Issues to be Addressed  What is the problem & is there a need?  What are the barriers?  How do we improve psychosocial care?

The Problem Why do so many patients with distress go unrecognized in current outpatient cancer care?

SCREENING FOR DISTRESS – 1 N = 4,496 Patients by Brief Symptom Inventory (BSI) Overall prevalence = 35% Zabora, et al., 2001 By Site: Lung43% Brain42% Pancreas36% Head & Neck35% Liver35%

SCREENING FOR DISTRESS - 2 N = 4,496 Patients by BSI Predictors of High Distress:  Tumor with poorer prognosis  Younger age  Lower income  Less social support (single) Zabora, et al., 2001

THE NEED The Current Situation All Cancer Patients 50% 45% 10% 50% 10% of distressed patients properly referred for psychosocial care All distressed patients properly referred for psychosocial care 25-45% significantly distressed The Goal All Cancer Patients

What are the BARRIERS to psychosocial care? PATIENTS WITH CANCER FEAR RISKING THE SECOND STIGMA OF A PSYCHIATRIC/PSYCHOLOGICAL DISORDER

ATTITUDINAL BARRIERS TO Dx AND Rx OF DISTRESS  Patient-derived  Physician-derived  Institution-derived

PATIENT-DERIVED BARRIERS  “I’m too embarrassed to tell the doctor”  “The doctor will think I’m a wimp”  “Those drugs may get me addicted”  “They’ll think I’m crazy”  “These are real problems; nothing will help”

PHYSICIAN-DERIVED  “I’ll be here for hours if I ask”  “It’s Pandora’s Box — how will I turn it off?”  “Psychological stuff doesn’t work anyway”  “I’m doing science — not touchy-feely”  “Patients will tell me when they’re upset”

INSTITUTION-DERIVED  “We’re here to treat disease, not psychosocial stuff”  “It’s all unscientific — we’ll be criticized to focus on this”  “How can we evaluate — you can’t measure feelings or outcome”  “It’s too expensive and all they do is talk — how do we know it helps?”

How Do We Improve Psychosocial Care? PANEL ON MANGEMENT OF PSYCHOSOCIAL DISTRESS OF THE NATIONAL CANCER CENTERS NETWORK (NCCN)* *19 COMPREHENSIVE CANCER CENTERS

PANEL TASK  A more acceptable term that sounds “normal”  Less stigmatizing and embarrassing than the label of “psychiatric”, “psychosocial”, “emotional”  Can incorporate the physical, psychological and spiritual  FIRST: Find an encompassing word for psychological, social, spiritual concerns  CHOSEN WORD: DISTRESS

Causes of Distress  Physical symptoms (pain, fatigue)  Psychological symptoms (fears, sadness)  Social concerns (for family and their future)  Spiritual concerns – seeking comforting philosophical, religious or spiritual beliefs  Existential concerns – seeking meaning in life while confronting possible death and its meaning

DISTRESS CONTINUUM Normal Distress Fears Worries Sadness Severe Distress Depression Anxiety Family Spiritual

NCCN Panel on Management of Psychosocial Distress Developed the FIRST  Standards for psychosocial care with algorithm for referral for supportive services  Treatment guidelines for disciplines giving supportive services (mental health, social work and pastoral counseling) Oncology, 1997 Revised, 2005

STANDARDS OF CARE FOR MANAGEMENT OF DISTRESS - 1  Distress should be recognized, monitored, documented and treated promptly at all stages of disease  All patients should be screened for distress at their initial visit and as clinically indicated  Screening should identify the level and nature of the distress  Distress should be assessed and managed by clinical practice guidelines Adapted, NCCN

Normal Reactions vs. Distress  Concerns about illness  Sadness about loss of usual health  Anger, feeling out of control  Poor sleep  Poor appetite  Poor concentration  Preoccupation with thoughts of illness and death   Excessive worries   Abnormal fear   Extreme sadness   Depression   Unclear thinking   Despair   Severe family problems   Spiritual crisis

EVALUATION/TREATMENT GUIDELINE IN ONCOLOGY CLINIC WAITING ROOM ONCOLOGY OFFICE Referral Mod - Severe distress Mental Health Social Work Pastoral Counseling Oncology Team Mild Distress Brief screen for distress and problem list Assessment by Primary Oncology Team  Oncologist  Nurse  Social Worker REFERRAL

SCREENING TOOLS FOR MEASURING DISTRESS YES NO Practical problems   Child care   Housing   Insurance/Financial   Transportation   Work/school YES NO Family problems   Child care   Housing   Insurance/Financial   Transportation   Work/school YES NO Emotional problems   Depression   Fears   Nervousness   Sadness   Worry   Loss of interest in usual activities YES NO   Spiritual/religious concerns Instructions: First please circle the number (0-10) that best describes how much distress you have been experiencing in the past week including today. Extreme Distress No Distress Second, please indicate if any of the following has been a problem for you in the past week including today. Be sure to check YES or NO for each. YES NO Practical problems   Appearance   Bathing/dressing   Breathing   Changes in urination   Constipation   Diarrhea   Eating   Fatigue   Feeling Swollen   Fevers   Getting around   Indigestion   Memory/concentration   Mouth Sores   Nausea   Nose dry/congested   Pain   Sexual   Skin dry/itchy   Sleep   Tingling in hands/feet

STANDARDS OF CARE FOR MANAGEMENT OF DISTRESS - 2  Multidisciplinary institutional committees should provide oversight of distress management  Educational programs for medical staff on recognition and management of distress  Mental health professionals and pastoral counselors with experience in cancer must be available  Health care insurance/contracts must include (not exclude) management of distress Adapted, NCCN

STANDARDS OF CARE FOR MANAGEMENT OF DISTRESS — 3  Clinical outcomes must include the psychosocial domain  Patients and families should know that management of distress is part of their medical care  Quality improvement studies must address management of distress; seek review by regulatory bodies (JCAHO; HEDIS) Adapted, NCCN

BENEFITS FROM RECOGNITION AND REFERRAL OF PATIENTS WITH DISTRESS — 1  Enhanced satisfaction with care and quality of life  Improved staff-patient communication/trust in relationship  Reduced telephone calls and visits resulting from anxiety

BENEFITS FROM RECOGNITION AND REFERRAL OF PATIENTS WITH DISTRESS — 2  Better understanding of and adherence to treatments regimens  Better treatment outcomes  Fewer patients who become highly disturbed  Lower distress levels and burnout in the primary oncology team

Diverse Populations Simple, attractive ethnocentric materials Sensitivity to the specific culture Caring yet professional approach for each ethnic group RESPECT! Key informant participation Involvement of the ethnic population

RESOURCES   PDQ summaries for supportive care   Guidelines for supportive care  Websites  Libraries  Mental Health Professionals  Organizations

Conclusions  Determine levels of distress in all cancer patients and find the best ways to intervene.  Help patients make informed decisions about their healthcare.  Provide patients and physicians with the appropriate tools and resources.