supportive care for the cancer patient kathryn m. kash, ph.d. thomas jefferson university psychiatry...
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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.
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