SUPPORTIVE CARE FOR SUPPORTIVE CARE FOR THE CANCER PATIENTTHE CANCER PATIENT

Kathryn M. Kash, Ph.D.Thomas Jefferson University

Psychiatry & Human Behavior

Standards for Psychosocial Care Standards for Psychosocial Care in Oncologyin Oncology

The Central Role of Nursing inThe Central Role of Nursing in

Establishing and Implementing Establishing and Implementing StandardsStandards

Psychosocial Standards for Psychosocial Standards for Outpatient CareOutpatient 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 forStandards forPsychosocial CarePsychosocial 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 AddressedThe Issues to be Addressed

What is the problem & is there a need?

What are the barriers?

How do we improve psychosocial care?

The ProblemThe Problem

Why do so many patients with Why do so many patients with distress go unrecognized in distress go unrecognized in

current outpatient cancer care?current outpatient cancer care?

SCREENING FOR DISTRESS – 1SCREENING FOR DISTRESS – 1

N = 4,496 Patients by Brief Symptom Inventory (BSI)Overall prevalence = 35%

Zabora, et al., 2001

By Site:

Lung 43%

Brain 42%

Pancreas 36%

Head & Neck 35%

Liver 35%

SCREENING FOR DISTRESS - 2SCREENING 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 NEEDTHE NEED

The Current SituationAll Cancer Patients

50%45%

10%

50%

10% of distressed patientsproperly referred forpsychosocial care

All distressed patientsproperly referred forpsychosocial care

25-45%significantlydistressed

The GoalAll Cancer Patients

What are the BARRIERS What are the BARRIERS to psychosocial care?to psychosocial care?

PATIENTS WITH PATIENTS WITH CANCERCANCER FEAR FEARRISKING THE SECOND STIGMA RISKING THE SECOND STIGMA

OF A OF A PSYCHIATRIC/PSYCHOLOGICALPSYCHIATRIC/PSYCHOLOGICAL

DISORDERDISORDER

ATTITUDINAL BARRIERS TO ATTITUDINAL BARRIERS TO Dx AND Rx OF DISTRESSDx AND Rx OF DISTRESS

Patient-derived

Physician-derived

Institution-derived

PATIENT-DERIVED BARRIERSPATIENT-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-DERIVEDPHYSICIAN-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-DERIVEDINSTITUTION-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 How Do We Improve Psychosocial Care?Psychosocial Care?

PANEL ONMANGEMENT OF

PSYCHOSOCIAL DISTRESSOF THE

NATIONAL CANCER CENTERS NETWORK (NCCN)*

*19 COMPREHENSIVE CANCER CENTERS

PANEL TASKPANEL 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 DistressCauses 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 CONTINUUMDISTRESS CONTINUUM

NormalDistress

FearsWorriesSadness

SevereDistress

DepressionAnxietyFamily

Spiritual

NCCN Panel on Management NCCN Panel on Management of Psychosocial Distress 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, 1997Revised, 2005

STANDARDS OF CARE FOR STANDARDS OF CARE FOR MANAGEMENT OF DISTRESS - 1MANAGEMENT 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. DistressNormal 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 EVALUATION/TREATMENT GUIDELINE IN ONCOLOGY CLINICGUIDELINE IN ONCOLOGY CLINIC

WAITINGROOM

ONCOLOGYOFFICE

Referral

Mod - Severe

distress

MentalHealth

Social Work

PastoralCounseling

Oncology Team

Mild Distress

Brief screenfor distressandproblem list

Assessmentby PrimaryOncology Team Oncologist Nurse Social Worker

REFERRAL

SCREENING TOOLS FOR MEASURING DISTRESSSCREENING 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

10

9

8

7

6

5

4

3

2

1

0

Instructions: First please circle the number (0-10) that best describes how much distress you have been experiencing in the past week including today.

ExtremeDistress

NoDistress

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 FORSTANDARDS OF CARE FORMANAGEMENT OF DISTRESS - 2MANAGEMENT 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 FORSTANDARDS OF CARE FORMANAGEMENT OF DISTRESS — 3MANAGEMENT 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 FROMBENEFITS FROMRECOGNITION AND REFERRALRECOGNITION AND REFERRAL

OF PATIENTS WITH DISTRESS — 1OF 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 FROMBENEFITS FROMRECOGNITION AND REFERRALRECOGNITION AND REFERRAL

OF PATIENTS WITH DISTRESS — 2OF 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 PopulationsDiverse 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

RESOURCESRESOURCES www.cancer.gov

PDQ summaries for supportive care www.nccn.org

Guidelines for supportive care Websites Libraries Mental Health Professionals Organizations

ConclusionsConclusions

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.