# Presentation: 538641

## 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:
-  	Lung	43%
-  	Brain	42%
-  	Pancreas	36%
-  	Head & Neck	35%
-  	Liver	35%

## 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 patientsproperly referred forpsychosocial care

- All distressed patientsproperly referred forpsychosocial care

- 25-45%significantlydistressed

- _The Goal_
- All Cancer Patients

## What are the BARRIERS to psychosocial care?

- PATIENTS WITH CANCER FEARRISKING THE SECOND STIGMA
- OF A PSYCHIATRIC/PSYCHOLOGICALDISORDER

## 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

- NormalDistress
- Fears
- Worries
- Sadness

- SevereDistress
- 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

## 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.

- 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 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

- _[www.cancer.gov](http://www.cancer.gov/)_
- PDQ summaries for supportive care
- _[www.nccn.org](http://www.nccn.org/)_
- 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.