Patient’s Problems
Pain (80%)
Fatigue (90%)
Weight Loss (80%)
Lack of Appetite (80%)
Nausea, Vomiting (90%)
Anxiety (25%)
Shortness of Breath (50%)
Confusion-Agitation (80%)
PC Assessment

Tumor Mass

Somatic nerves

Tumor Function

Autonomic
nervesTumor
byproducts

Host immune
cells

Cytokines

BRAIN

FatigueAnorexia
Pain
Depression
DeliriumDyspnea

PC Assessment

42 y.o. Woman, advanced
NSCC Lung
Admitted to hospital
cc: pain, nausea, confusion
Measurements:- vitals twice/shift
RN- neuro vitals q/shift- ins & outs
PC Assessment

PC Assessment

PURPOSE OF ADMISSION
Symptom control; no antineoplastic treatment
Pall. Care Consult: Day 12

Pain intensity monitoring (6  analgesic changes)
NO

Nausea vomiting (3  antiemetics)

Cognitive monitoring (“confusion worse”)

PC Assessment

Experience/Memory

 SYMPTOM FUNCTION

Spirituality

Social/Cultural

Patient

M.D.

Meaning
Sickness

DiseaseDiagnosis

Personality

Treatment

Loss of Job
Lung Cancer

Emotional Burden

Divorce

Patient
Sickness

Targeted
Therapy

SWB
 ESAS• Utilization, satisfaction• Invasive procedures• ER visits, admissions, ICU

WHAT DO WE NEED TO
ASSESS?
 Symptom Intensity
 Cognition
 Mood Knowledge
 Communication Preference Family structure and function

PC Assessment

PC Assessment

PC Assessment

Physical Assessment
Card No. 9 - Vomit
To the Patient: “Which of these situations best represents
your present condition?”

PC Assessment

Physical Assessment
Card No. 4 - Diarrhea
To the Patient: “Which of these situations best represents
your present condition?”

PC Assessment

PC Assessment

Why should we use tools?
1. We find more symptoms ( median of 9
Vs 2)
2. We are able to follow up over time
3. We are able to conduct quality control

PC Assessment

PC Assessment

PC Assessment

PC Assessment

ESAS: No copyright!
 MMSE: after >100 studies by our team,
Folstein lawyers want 1 $ per assessment !!
 Computer software deals for symptom tools!
 All “Edmonton” tools: ESAS, EFAT, ESS,
HDAT, etc. had no copyright- For all to use!
 Most common tool in cancer and Pall Care

PC Assessment

Lessons from ESAS
develoment
 Clinically actionable items ( worse, average,
least, interferences- ?). No action: delete
 Extremely short and free
 No need for computer or patient training
 RNs and MDs need to see how this will help
clinically to adopt.
 Instrument development cartels: not validated
yet in tall people, or soccer fansWhy patient reported outcomes(PROs)?

PC Assessment

PC Assessment

PC Assessment

PC Assessment

PC Assessment

Schema of Symptom Construct
1. PRODUCTION/CONSTRUCT
2. PERCEPTIONMODULATIONCOGNITIVE STATUS
MOOD

3. EXPRESSIONBELIEFSCULTURALBIOGRAPHY

TREATMENTPC Assessment

Pain is a multidimensional
constructWhat’s in a name? PAINWhat’s in a number? 0-10

PC Assessment

Pain Intensity 8/10
Patient #1
Nociception
85%
Somatization
5%
Coping Chemically
5%
Tolerance
5%
Incidental Pain
0%100%

PC Assessment

Patient #2
30%
20%
30%
0%
20%
100%

Fatigue 8/10
Patient 1

Patient 2

Depression

 60%

 10%

Cachexia

 10%

 50%

Anemia

10%

 30%

Opioids 20%

Autonomic

 0%

 10%

PC Assessment

0%WHAT IMPACTS PAIN INTENSITY
0-10?
1. Afferent Nociception
2. Meaning (Cancer, Osteoporosis?)
3. Personality (Stoic, Histrionic?)
4. Experience/Memory (Father died in pain)
5. Alcoholism/Drugs (Chemical coping)
6. Intelligence/Education (Understands pain & treatment)
7. Culture (Pain expression OK?)
8. Spirituality (Pain Good? Punishment?)
9. Secondary Gain (Attention from family)
10. Depression/Anxiety (Somatization)
11. Delirium (Disinhibition)
12. Trust In Doctors (Adherence, Placebo!)

PC Assessment

Cancer Related
Tumor Growth

Infection

Ischemia

Fracture PainIntensity
Mood
ChangeChemical
CopingDelirium

OpioidTolerance

Patient Related
PC Assessment

Prognostic factors
Incident painNeuropathic pain
Alcohol/drugs
Somatization
TolerancePrevious dose- not independent
Cognitive failure- not independent
PC Assessment

Cancer 2015

Methods
Compared ESAS symptom intensity
between 1st and 2nd visit
Asked pts their perception of overall
improvement (better, same, worse) for
each symptomDiscussion
MCID is 1 for improvement or
deterioration for ALL symptoms
More than one visit needed to control
symptoms
Some pts deteriorate by the 2nd visit
MCID is not the Personalized symptomgoal11/05/2012

Pain Relief:  2/10 or  33%
Relief: 9 – 7?
What is the patient’s goal?

11/05/2012

465 Patients seen at Supportive
Care Center by a Palliative
Medicine Specialist with follow-up
in 1 – 6 weeks
ESAS
CAGE
MDAS

11/05/2012

Objetivo personalizado dedolor 445 cancer patients at Supportive Care Center Median followup 14 days

Dalal et al. Cancer 2012

11/05/2012

11/05/2012

Personalized Pain Goal
A Tale of Two Patients

Patient 1

Patient 2

At what level of pain would YOU feel comfortable?

Dalal et al. Cancer 2012

ESAS Scores at Baseline & Follow Up Visits

Impact of Palliative Care Consultation – Yennurajalingam S, et al JPSM 2010

Impact of Palliative Care Consultation – Yennurajalingam S, et al JPSM 2010

Personalized symptom goal in
ESAS728 patients with advanced cancer
5 centers worldwide
ESAS + “ at what level would you feel
comfortable with this symptom ?”Follow up response in symptom andstability of PSG

PC AssessmentPatient understandingAddiction
Pain escalation in the futureOpioids as the cause of deathFear of side effects
Regular Vs prn

PC Assessment

Opioid

MOR Nociceptive
Pathway
Nociceptive
Input Fast

Excitatory
Slow !Amino Acids

!


PAIN

+

Opioid

MOR limbic
Fast ! System
Distresss +Fast !

Non
OpioidPathways

Somatizati
on

Nociceptive
Input

Personality
Genetic
Risk

PAIN

Depression/AnxietySocialSituation

OPIOD
THERAPY
80%
Adherence

15%
Chemical
Coping5%Addiction(carefuluse)Coping chemically75% of individuals regular alcohol intake
7-9% alcoholics (CAGE
questionnaire,etc)
20% CAGE + hospitalizedAdvanced head and neck CA: 47% +Breast 18% CAGE +Endorphin mediation of ETOH reward
PC Assessment

CAGE (AID) Questionnaire Have you ever felt that you should cut downon your drinking (or drugs)?
 Have you ever been annoyed by people
criticizing your drinking (or drugs)?
 Have you ever felt bad or guilty about yourdrinking ( or drugs)?
 Have you ever had a drink first thing in themorning or a drink ( or drugs) to get rid of ahangover (eye-opener)?

Frequency of Diagnosis of Alcoholism# Patients

1989 (%)
100

1992 (%) “p” Value
100

Evaluable for assessment
Diagnosis of alcoholism

100 (100)
28 (28)66 (66)18 (27)PC Assessment

0.9Results…5: Addiction History (Aa, Ao, Ax)
Aa

Ao

Ax

Tel-Av Hos

0

100

0

Auck-Hos

2.7

89.3

8

Calg-PCU

9.3

84.5

6.2

Edm-Acu

10

86.3

3.8

Auck-Acu

10.1

72.2

17.7

Hou-OuPt

11.1

79.8

9.1

Melb-Acu

12

66.3

21.7

Hou-InPt

12.9

76.5

10.6

Dub-Hos

15.9

74.4

9.8

Edm-TPCU

18.6

78.4

3.1

Dub-Acu

20.3

59.5

20.3

12th June 2010

EAPC Glasgow

Fainsinger et al.
Eur J Cancer 201063

Dev R et al, Oncologist 2012
 100/ 598 pts were CAGE+ (17%).
CAGE+ patients > males and younger .
Male patients and patients with lung tumors
were significantly more likely to have a historyof tobacco use.
CAGE + patients > smoke history !!

Table 2. Documentation of Alcoholism prior to
Palliative Care Consult among CAGE+ patients(n=100)Pain during primary treatment
Cancer related (65%)
SurgeryRadiation/ chemotherapy mucositis
Chemotherapy induced neuropathyPre- existing conditions (15%)

Head and neck curative RT
70 patients referred to supp care center. 3 months disease freeNo treatment after completion of RT

Opioid discontinuation after
treatment
44/70 ( 63%) on opioids >3 months
23/70 (33%) on opioids > 6 months
18/44 non stoppers CAGE + ( 41%)
3/26 stoppers CAGE + ( 12%) p=0.014
Median opioid days 261 CAGE+ Vs 93
CAGE – (p=0.008)

Conclusions on opioids forsurvivors
Regular assessment of CAGE/
addiction history
Meticulous follow up and avoid refilling
medication without assessment.

What does this mean to yourpractice?
Approximately 20% of cancer pts
screen positive for alcohol (Vs 8% for
population)
We miss 80% of patients!!
Alcohol predicts opioid chemical coping!
The profile of smoking has changed (due to decrease from 40% to 22%)
Always screen with CAGE. Alcoholquestions do not work

What do we do with theinformation?
Alcohol makes us feel good. 90% drink,
8% maladaptive (20% in cancer)
CAGE +: opioids reduce suffering.
Difference with pain

Somatization
“total pain”, “total suffering”.
Diagnostic criterion for affective
disordersMeaning of pain for the patientAggravated by stressors
High intensity expression (10/10)
Multiple symptoms (“all black graph”)
PC Assessment

Causes of somatization
 Personality ( functional disorders!!!) Depression/ anxiety
 Spiritual pain ( Delgado-Guay JPSM)
 Cultura! “pain in the neck” (or somewhereelse), “ad nauseam”
 Physical Signof somatization? Mass on theflank Patients at high risk of medical attack
Function better than intensity expressioncomplain can be adaptive

COGNITIVE FAILURE IN
CANCER PATIENTS
71 PATIENTS APPROACHED
67 CONSENTED
13 (19%)MMSE <24/30

54 (81%)
MMSE  24/30

8/13 (62%)*
DROP OUT BEFORESTUDY COMPLETED

6/54 (11%)*DROP OUT BEFORESTUDY COMPLETED* p,0.01, 2 Test

Bruera et al, Lancet, 1993
PC Assessment

Delirium85% cancer pts before deathMulticausal
80% of brain is GABA
Disinhibition: expression of symptoms
and emotions

PC Assessment

Tumorbyproducts
and host
cytokines
Metabolic Na,
Ca, Creat

OPIOIDS and otherdrugs (psych!!)Chemo

SepsisDelirium
CNS
Involvement
Dehydration

COGNITIVE FAILURE IN
CANCER PATIENTS
71 PATIENTS APPROACHED
67 CONSENTED
13 (19%)MMSE <24/30

54 (81%)
MMSE  24/30

8/13 (62%)*
DROP OUT BEFORESTUDY COMPLETED

6/54 (11%)*DROP OUT BEFORESTUDY COMPLETED* p,0.01, 2 Test

Bruera et al, Lancet, 1993
PC Assessment

DeliriumOpioids can cause- dose escalation!!
Increased pain: hyperalgesia /delirium
Screening!! MMSE, hallucinations,agitation

PC Assessment

PC Assessment

Delirium and symptom expression( Delgado- Guay)60 yo man, advanced small cell prostateca,lumbar adenophathies and bone mts
 Chemo + lumbar RT
Referred stat due to severe pain
Admission: Ca 12.44, creat 1.6
Pain 9, MDAS 14
Bedridden
PC Assessment

ESAS Findings at Admission

Delgado-Guay MO, Yennu S, Bruera E JPSM 2008; 36(4):442-449
PC Assessment

PC Assessment

Delirium recall study• Adult inpatients with advanced cancer• Diagnosis of delirium and complete < 3 days before
study entry

99 Patients

Delirium recall

Data collection

Caregivers

BedsidenursesSymp frequency• Disorientation• Hallucinations• Delusions• Agitation

Self reported distress• Disorientation• Hallucinations• Delusions• Agitation

Average daily neuroleptic dose usedduring delirium

Bruera et al. Cancer 2009

Palliative carespecialists

Patient & Family Caregiver Characteristics

Bruera E, Bush SH, et al Cancer 2009;115:2004-12

Patient Distress Level (0-5)

Bruera E, Bush SH, et al Cancer 2009;115:2004-12

The source of conflict!

Bruera E, Bush SH, et al Cancer 2009;115:2004-12

Delirium recall andmanagement lessons
Patient and caregiver reported
outcomes useful!
MD/ RNs frequently overestimate theirability to assess
Management is more MD/RN based
and less patient/ family based

MDAS
Memorial Delirium Assessment Scale
ITEM 1 – REDUCED LEVEL OF CONSICIOUSNESS (AWARENESS): 0: none 1: mild 2: moderate 3: severe
ITEM 2 – DISORIENTATION: 0: none 1: mild 2: moderate 3: severe
ITEM 3 – SHORT-TERM MEMORY IMPAIRMENT: 0: none 1: mild 2: moderate 3: severe

ITEM 4 – IMPAIRED DIGIT SPAN: 0: none 1: mild 2: moderate 3: severe
ITEM 5 – REDUCED ABILITY TO MAINTAIN AND SHIFT ATTENTION 0: none 1: mild 2: moderate

3: severe

MDAS
Memorial Delirium Assessment Scale
ITEM 6 – DISORGANIZED THINKING 0: none 1: mild 2: moderate 3: severe
ITEM 7 – PERCEPTUAL DISTURBANCE: 0: none 1: mild 2: moderate 3: severe
ITEM 8 – DELUSIONS: 0: none 1: mild 2: moderate 3: severe
ITEM 9 – DECREASED OR INCREASED PSYCHOMOTOR ACTIVITY: 0: none 1: mild 2: moderate 3: severe
ITEM 10 – SLEEP-WAKE CYCLE DISTURBANCE (DISORDER OR AROUSAL): 0: none 1: mild 2: moderate 3: severe
TOTAL __________MEMORIAL DELIRIUM ASSESSMENT SCALE (MDAS)
INSTRUCTIONS: Rate the severity of the following symptoms of delirium based on current interaction withsubject or assessment of his/her behavior or experience over past several hours (as indicated in each time.)
ITEM 1-REDUCED LEVEL OF CONSCIOUSNESS (AWARENESS): Rate the patient’s current awareness ofand interaction with the environment (interviewer, other people/objects in the room; for example; ask patientsto describe their surroundings).
 0: none(patient spontaneously fully aware of environment and interacts appropriately) 1: mild(patient is unaware of some elements in the environment, or not spontaneously interacting
appropriately with the interviewer; becomes fully aware and appropriately interactive when
prodded strongly; interview is prolonged but not seriously disrupted)
 2: moderate(patient is unaware of some or all elements in the environment, or not spontaneouslyinteracting with the interviewer; becomes completely unaware and inappropriatelyinteractive when prodded strongly: interview is prolonged but not seriously disrupted)
 3: severe(patient is unaware of all elements in the environment with no spontaneous interaction ofawareness of the interviewer, so that the interview is difficult-to-impossible even withmaximal prodding)
ITEM 2-DISORENTATION: Rate current state by asking the following 10 orientation items: date, month day,year, season, floor, name of hospital, city, state, and country.
 0: none(patient knows 9-10 items)
 1: mild(patient knows 7-8 items)
 2: moderate(patient knows 5-6 items)
 3: severe(patient knows no more than 1 item)
ITEM 3-SHORT-TERM MEMORY IMPAIRMENT: Rate current state by using repetition and delayed recall of
3 words [patient must immediately repeat and recall words 5 min later after an intervening task. Use alternate
sets of 3 words for successive evaluations (for example, apple, table, tomorrow, sky, cigar, justice)].
 0: none(all 3 words repeated and recalled) 1: mild(all 3 words repeated, patient fails to recall 1 of 3) 2: moderate(all 3 words repeated, patient fails to recall 2 of 3) 3: severe(patient fails to repeat 1 or more words)

PC Assessment

Number & Percentage of Correct
Diagnosis for Each Patient

PC Assessment

Number & Percentages of Correct
Diagnosis According to HealthCare Professional

PC Assessment

Relatives and Nurses Perceptions of Discomfort in
Unresponsive Terminally Ill Cancer Patients

60 unresponsive, actively dying patients
One relative and one nurse for eachpatient evaluated:- patient’s discomfort level 0-10 scale,- frequencies of 6 observed behaviors
0 – 4 scale
Bruera E, JPSM 2003
Communication

Results
 20/60 (33%) relatives rated discomfort (DL)as moderate or severe  3/10
 20/60 (33%) hospice nurses rated DL as
moderate or severe  3/10
 Correlation in rating of DL poor (0.25)
 Relatives rated frequency of observed
behaviors (OB) higher than nurses(p<0.0001).

Communication

Correlation between behaviors
observed by relatives and nurses
Variable

Frequency
relatives (%)

Frequency
nurse (%)

Kappa

Overall discomfort≥3/10
Grimacing ≥1/4

20 (33)20 (33)0.25

40 (67)29 (48)0.34

Groaning ≥1/4

34 (57)23 (38)

0.10

Shouting ≥1/4

8 (13)

1 (2)

0.20

Touch rubbing an
area ≥1/4
Purposelessmovement ≥1/4

22 (36)

7 (12)

0.11

27 (45)20 (33)0.26

PC Assessment

Results
 20/60 (33%) relatives rated discomfort (DL)as moderate or severe  3/10
 20/60 (33%) nurses rated DL as moderate orsevere  3/10
 Correlation in rating of DL poor (0.25)
 Relatives rated frequency of observed
behaviors (OB) higher than nurses(p<0.0001)
 Rating of at least one OB 3/4 by nurse
significantly associated with rating DL  3/10
(p<0.05). Not for relatives.
PC Assessment

PC Assessment

ASSESSMENT TOOLS
ESAS
CAGE
MDAS
Constipation

PC Assessment

Tertiary Palliative
Care Unit

HOME
Cancer Center
Acute Care

Inpatient
HospicePATIENT FLOWASSESSMENT AT SCPC/MOBILE TEAM/HOME
Low Distress,
High Support

High Distress

Low Distress, Low Support

HOME

INPATIENT MDACC

+ PCU

REGIONAL CARE UNIT

High Support 

Low Distress

Low Support

Main Difference with Hospice: 1) All patients will remain in contact with their primary oncologist and will
qualify for phase I and Research treatments; 2) Patients will remain as UT MDACC patients.

PC Assessment

10 most Common Very Important Wishes at
First and Second Test

Physical findings < = 3 days oflife( Cancer, Oncologist 2015)

357 consecutive pts admitted to PCU
Twice a day exams until d/c or death38 % deaths < = 3 days

PC Assessment

Signs of Impending Death
Likelihood Ratio for Death in 3 Days
Sign
Inability to close eye lids
Grunting of vocal cords
Resp. w. mand. movement
Death rattle
Drooping of nasolabial fold
Hyperextension of neck
Palliative PS 20%
Inability to clear secretions
Non-reactive pupils
Cheyne Stokes breathing response to verbal stimuli
 response to visual stimuli
Apnea periods
Speech abnormalities
Withdrawal
Pulselessness of radial artery
Urine output <200cc/d
Peripheral cyanosis
Cool skin temperature
Mottling

Cardiovascular signs

PrevalenceN (%)
93 (46)
86 (43)92 (46)110 (54)137 (68)73 (36)176 (87)
155 (77)
53 (26)61 (30)118 (58)
121 (60)
71 (35)143 (70)
72 (35)57 (28)48 (49)99 (49)59 (29)71 (35)

Sensitivity(95% CI)21.4 (20.9-21.8)
19.5 (19-19.9)
22 (21.5-22.4)
22.4 (21.8-22.9)
33.7 (33.2-34.3)
21.2 (20.6-21.7)
64 (63.4-64.7)
46.1 (45.6-46.7)
15.3 (14.9-15.7)
14.1 (13.6-14.5)
30 (29.4-30.5)
31.9 (31.4-32.4)
17.6 (17.1-18)
42.6 (42-43.2)
10.6 (10.2-11)
11.3 (10.9-11.8)
24.2 (23.2-25.1)
26.7 (26.1-27.3)
13.6 (13.2-14)
17.1 (16.6-17.6)

Specificity(95% CI)97.9 (97.7-98.1)
97.9 (97.7-98.1)
97.5 (97.3-97.6)
97.1 (96.9-97.3)
95.5 (95.3-95.8)
96.7 (96.5-96.9)
81.3 (80.9-81.7)
84.9 (84.5-85.3)
99 (98.8-99.1)
98.5 (98.4-98.7)
96 (95.8-96.3)
94.9 (94.6-95.1)
95.3 (95.1-95.6)
90.2 (89.8-90.5)
96.8 (96.5-97)
99.3 (99.2-99.5)
98.2 (98-98.5)
94.9 (94.7-95.2)
96.8 (96.6-97)
95.8 (95.5-96)

Neurological signs

Negative LR(95% CI)
0.8 (0.8-0.81)
0.82 (0.82-0.83)
0.8 (0.8-0.81)
0.8 (0.79-0.81)
0.69 (0.69-0.7)
0.82 (0.81-0.82)
0.44 (0.43-0.45)
0.64 (0.63-0.64)
0.86 (0.85-0.86)
0.9 (0.9-0.9)
0.73 (0.72-0.74)
0.72 (0.71-0.72)
0.86 (0.86-0.87)
0.64 (0.63-0.64)
0.92 (0.92-0.93)
0.89 (0.89-0.9)
0.77 (0.76-0.78)
0.77 (0.77-0.78)
0.89 (0.89-0.9)
0.87 (0.86-0.87)

Positive LR(95% CI)13.6 (11.7-15.5)
11.8 (10.3-13.4)
10 (9.1-10.9)9 (8.1-9.8)
8.3 (7.7-8.9)
7.3 (6.7-8)
3.5 (3.4-3.6)
3.1 (3-3.2)
16.7 (14.9-18.6)
12.4 (10.8-13.9)
8.3 (7.7-9)
6.7 (6.3-7.1)
4.5 (3.7-5.2)
4.4 (4.3-4.6)
3.9 (3.3-4.5)
15.6 (13.7-17.4)
15.2 (13.4-17.1)
5.7 (5.4-6.1)
4.9 (4.4-5.3)
4.4 (4.1-4.6)

Neuromuscular signs

Signs of actively dying
1. Non reactive pupils
2. Decreased resp visual stimuli
3. Inability to close eyelids
4. Hyperextension of the neck
5. Mandibular breathing
6. Decreased nasolabial fold
7. Decreased verbal response
8. Death rattle
9. Grunting of vocal cords
10. Cheyne Stokes respirations

PC Assessment

Signs of actively dying
Very specific: admission + grunting=
88% death <3 days
Not sensitive! Absence does not ruleout

PC Assessment

“The perfect is the enemy of
the good”
Voltaire

PC Assessment