SUPPORTIVE CARE FOR THE CANCER PATIENT

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SUPPORTIVE CARE FOR THE CANCER PATIENT

• Kathryn M. Kash, Ph.D.
• Thomas Jefferson University
• Psychiatry Human Behavior

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Standards for Psychosocial Care in Oncology

• The Central Role of Nursing in
• Establishing and Implementing Standards

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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

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Standards forPsychosocial Care

• Managed care creates a situation in busy clinics
  which allows little attention for psychosocial
  problems
• The Dont Ask, Dont Tell policy
• Doctors dont ask patients dont tell

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The Issues to be Addressed

• What is the problem is there a need?
• What are the barriers?
• How do we improve psychosocial care?

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The Problem

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

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SCREENING FOR DISTRESS 1

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

By Site Lung 43 Brain 42 Pancreas 36
Head Neck 35 Liver 35
Zabora, et al., 2001
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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
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THE NEED

• The Current Situation
• All Cancer Patients

The Goal All Cancer Patients
50 45
50
25-45significantlydistressed
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10 of distressed patientsproperly referred
forpsychosocial care
All distressed patientsproperly referred
forpsychosocial care
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What are the BARRIERS to psychosocial care?
PATIENTS WITH CANCER FEARRISKING THE SECOND
STIGMA OF A PSYCHIATRIC/PSYCHOLOGICALDISORDER
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ATTITUDINAL BARRIERS TO Dx AND Rx OF DISTRESS

• Patient-derived
• Physician-derived
• Institution-derived

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PATIENT-DERIVED BARRIERS

• Im too embarrassed to tell the doctor
• The doctor will think Im a wimp
• Those drugs may get me addicted
• Theyll think Im crazy
• These are real problems nothing will help

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PHYSICIAN-DERIVED

• Ill be here for hours if I ask
• Its Pandoras Box how will I turn it off?
• Psychological stuff doesnt work anyway
• Im doing science not touchy-feely
• Patients will tell me when theyre upset

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INSTITUTION-DERIVED

• Were here to treat disease, not psychosocial
  stuff
• Its all unscientific well be criticized to
  focus on this
• How can we evaluate you cant measure feelings
  or outcome
• Its too expensive and all they do is talk how
  do we know it helps?

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

• FIRST Find an encompassing word for
  psychological, social, spiritual concerns
• CHOSEN WORD DISTRESS

• 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

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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

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DISTRESS CONTINUUM
SevereDistress Depression Anxiety Family Spiri
tual

• NormalDistress
• Fears
• Worries
• Sadness

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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

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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

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Normal Reactions vs. Distress

• Excessive worries
• Abnormal fear
• Extreme sadness
• Depression
• Unclear thinking
• Despair
• Severe family problems
• Spiritual crisis

• 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

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EVALUATION/TREATMENT GUIDELINE IN ONCOLOGY CLINIC
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SCREENING TOOLS FOR MEASURING DISTRESS
Instructions First please circle the number
(0-10) that best describes how much distress you
have been experiencing in the past week including
today.
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

• 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

ExtremeDistress
NoDistress
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STANDARDS OF CARE FORMANAGEMENT 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
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STANDARDS OF CARE FORMANAGEMENT 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
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BENEFITS FROMRECOGNITION AND REFERRALOF
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

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BENEFITS FROMRECOGNITION AND REFERRALOF
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

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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

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RESOURCES

• www.cancer.gov
• PDQ summaries for supportive care
• www.nccn.org
• Guidelines for supportive care
• Websites
• Libraries
• Mental Health Professionals
• Organizations

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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.