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Measuring the quality of end-of-life care. David J Casarett MD MA Division of Geriatrics University of Pennsylvania. Did this patient receive good care?. 84 year old man with heart failure and pneumonia. Admitted to the hospital, treated with antibiotics and oxygen. Discharged 3 days later.

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measuring the quality of end of life care

Measuring the quality of end-of-life care

David J Casarett MD MA

Division of Geriatrics University of Pennsylvania

did this patient receive good care
Did this patient receive good care?
  • 84 year old man with heart failure and pneumonia.
  • Admitted to the hospital, treated with antibiotics and oxygen.
  • Discharged 3 days later.
how do you measure the quality of care for pneumonia
How do you measure the quality of care for pneumonia?
  • Patient received:
    • Antibiotics
    • Oxygen
    • Intravenous fluids
  • Patient was discharged from the hospital alive
did this patient receive good care5
Did this patient receive good care?
  • A 69 year old man with severe heart failure.
  • Admitted to the hospital with pneumonia, and treated with antibiotics and oxygen.
  • Despite the best treatment, his condition becomes worse.
  • He dies 3 days later.
measuring the quality of care for dying patients
Measuring the quality of care for dying patients:
  • Why measure the quality of end-of-life care?
  • A framework for measurement
    • Structures of care
    • Processes of care
    • Outcomes
  • Measuring outcomes
    • Prospective data
    • Retrospective data
  • One example: Measuring pain management
good end of life care includes palliative care
Good end-of-life care includes palliative care:
  • Palliative care is patient and family-centered care that focuses upon effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs, and culture(s). (NCCN)
why measure the quality of end of life care
Why measure the quality of end-of-life care?
  • Benchmarking
  • Quality improvement
  • Identification of best practices
benchmarking
“Benchmarking”
  • Identifying goals and targets for high quality
  • Examples:
    • We should assess the pain of all patients
    • We should use strong opioids (morphine) for severe pain in all patients
quality improvement
“Quality improvement”
  • Interventions to improve the quality of care that patients receive.
  • Examples:
    • Training for physicians and nurses about how to assess pain
    • Reminders to assess pain in all patients
    • Pharmacy suggestions about which opioids to use
best practices
“Best practices”
  • Procedures and rules that lead to better care
  • Examples:
    • One hospital uses a pain assessment form as part of the admissions process, ensuring that all new patients have their pain assessed
    • One hospital created rules to guide physicians in using strong opioids (morphine) when appropriate.
measuring quality of end of life care
Measuring quality of end-of-life care
  • Measuring quality of end-of-life care makes it possible to do benchmarking, quality improvement, and to identify best practices.
  • But: How do we measure the quality of end-of-life care?
3 ways to measure quality
3 ways to measure quality
  • Structures of care
  • Processes of care
  • Outcomes of care
structures processes and outcomes
Structures, Processes, and Outcomes

STRUCTURES

PROCESSES

OUTCOMES

structures of care
“Structures of care”
  • Aspects of the health care system that contribute to better quality of care
  • Examples:
    • Staffing
    • Training
    • Protocols
    • Procedures
what structures would lead to better quality end of life care
What structures would lead to better quality end-of-life care?
  • Staffing—Dedicated physicians and nurses for palliative care
  • Training of all staff in palliative care
  • Palliative care teams
  • Protocols for pain management
  • Procedures for pain assessment
advantages of measuring structures
Advantages of measuring structures
  • Easily measured through surveys or existing data
  • Easy to compare hospitals
  • Quick indicators of needs/problems
disadvantages of measuring structures
Disadvantages of measuring structures
  • Not usually responsive to change
  • Not always related to quality
  • Generally not sufficient to demonstrate effectiveness or success
processes
Processes

STRUCTURES

PROCESSES

OUTCOMES

processes of care
“Processes of care”
  • Care that is delivered to patients in order to improve the quality of care
  • Examples:
    • Assessing pain and other symptoms
    • Prescribing medications
    • Prescribing non-medical treatment
what processes would lead to better quality end of life care
What processes would lead to better quality end-of-life care?
  • Assessing pain
  • Having patient seen by a palliative care service
  • Prescribing opioids (morphine)
  • Using a bowel regimen alongside opioids
advantages of measuring processes
Advantages of measuring processes
  • Easily measured (in some settings)
  • Responsive to improvement efforts/funding
disadvantages of measuring processes
Disadvantages of measuring processes
  • May be more associated with better care in some hospitals than others
  • Positive results may offer false sense of improvement
  • Processes not always associated with better care*
processes and outcomes
*Processes and outcomes
  • One physician prescribes morphine to all of his patients with cancer
  • Another physician prescribes morphine to half of his patients with cancer
  • Which physician is providing better care?
  • ?
outcomes
Outcomes

STRUCTURES

PROCESSES

OUTCOMES

outcomes of care
“Outcomes of care”
  • The effect that structures and processes have on the patient
  • Examples
    • Control of symptoms
    • Quality of life
    • Comfort
    • Being with family
what outcomes of care are important to patients near the end of life
What outcomes of care are important to patients near the end of life?
  • Pain
  • Other symptoms
  • Adequate control over health care decisions (patient’s perspective)
  • Family adjustment after death
advantages of measuring outcomes
Advantages of measuring outcomes
  • Ideal measure of needs
  • Measured from the patient’s perspective
disadvantages of measuring outcomes
Disadvantages of measuring outcomes
  • Change may be slow
  • Positive/negative results may be due to other factors
  • Accurate measurement is often:
    • Difficult
    • Expensive
which outcomes are most important
Which outcomes are most important?
  • The patient’s spiritual and psychological well-being
  • Continuity of care across providers and care settings
  • The patient’s physical comfort
  • Information and control over treatment
  • Family adjustment after death
  • Family psychological, spiritual, and social well-being
the patient s physical comfort
The patient’s physical comfort
  • Pain
  • Nausea
  • Pruritis
  • Constipation
  • Dyspnea
  • Thirst
  • Dry mouth
the patient s spiritual and psychological well being
The patient’s spiritual and psychological well-being
  • Psychological:
    • Depression
    • Anxiety
    • Confusion
  • Spiritual/emotional
    • Peacefulness
    • Sense of community
    • Reconciliation with friends/family
information and control over treatment
Information and control over treatment
  • Culturally appropriate understanding of treatment options
  • Culturally appropriate understanding of prognosis and illness trajectory
  • Treatment consistent with preferences
  • Site of death consistent with patients’ and families’ goals
family psychological spiritual and social well being
Family psychological, spiritual, and social well-being
  • Family’s acceptance of death
  • Reconciliation
  • Caregiver burden
  • Provisions for family members and children
continuity of care across providers and care settings
Continuity of care across providers and care settings
  • Continuity of information
  • Continuity of treatment
  • Continuity of health care providers
family adjustment after death
Family adjustment after death
  • Adjustment
  • Contribution of grief support (formal/informal)
  • Guilt/acceptance
prospective vs retrospective measurement
“Prospective” vs. “Retrospective” measurement?
  • Prospective: Going forward
  • Retrospective: Asking patients or families to remember
prospective data advantages and disadvantages
Prospective data: Advantages and disadvantages
  • Advantages:
    • “Gold standard” of data collection (from patients)
  • Disadvantages:
    • Challenges of identifying patients near the end of life
    • Challenges of data collection
what proportion of patients near the end of life can provide data
What proportion of patients near the end of life can provide data?
  • 65% (Fowler 1999)
  • 65% (Lynn 1997)
  • 50-63% (Hospice)(Casarett 2004, Casarett 2005, Rickerson 2005)
  • Declines over time (Stromgren 2005)
      • 82% at baseline
      • 70% at week 1
      • 69%-52% at weeks 2 – 13
retrospective patient level data advantages and disadvantages
Retrospective (patient-level) data: Advantages and disadvantages
  • Advantages:
    • Does not require interaction with patients who are seriously ill
    • “end-of-life” patients are already defined
    • Best way to assess family’s experience, especially after patient’s death
    • Economical
  • Disadvantages:
    • Biased/inaccurate responses
    • Not all patients have surrogates
how accurate are families recollections of care
How accurate are families’ recollections of care?
  • Ahmedzai (1988) poor agreement (patient-family pre-death) in all symptoms except dyspnea. (Higher scores from families)
  • Milne (2005) better agreement for physical symptoms than for psychosocial well-being (pre-death)

----------------------------------------------------------------------------

  • Higginson (1996) better agreement (pre- vs. post- death) for service provision and communication than for symptom control.
  • Klinkenberg (2003) better agreement for physical symptoms than for psychological symptoms (pre- vs. post-death)
  • Hinton (1996) Patient-family ratings during illness and then after death (families). Good agreement about incidence, less for severity of physical/psychological symptoms.
finding a surrogate
Finding a surrogate
  • No surrogate
    • Not available
    • Moved/no forwarding address
    • None
  • “Wrong” surrogate
  • Changing surrogate
finding a surrogate48
Finding a surrogate

Consent: 55%

Knowledgeable: 64%

Reachable: 70%

Surrogates: 85%

Patient deaths

finding a knowledgeable surrogate
Finding a knowledgeable surrogate
  • 79% (Klinkenberg 2003)
  • 37% (Curtis 2002)
  • 90% (Casarett 2004)
  • 69% (Seale 1995)
  • 38%(?) (Teno 2003)
potential response bias patients with surrogates
Potential response bias? Patients with surrogates:
  • Differences:
    • Older
    • Fewer ADL dependencies
    • More likely to be white
    • More likely to have private insurance and/or Medicare
  • BUT: Generally small effect
outline
Outline:
  • Why measure the quality of end-of-life care?
  • A framework for measurement
    • Structures of care
    • Processes of care
    • Outcomes
  • Measuring outcomes
    • Prospective data
    • Retrospective data
  • One example: Pain measurement
outcome measurement pain
Outcome measurement: Pain
  • Pain is often undertreated
  • Pain is often not recognized
  • Pain reduces quality of life and is an important source of discomfort
measuring pain
Measuring pain
  • For which patients should pain be measured?
  • How should we measure pain?
how should we measure pain
How should we measure pain?
  • Is the patient cognitively impaired?
    • No
    • Mild
    • Moderate
    • Severe
is the patient cognitively impaired
Is the patient cognitively impaired?
  • Mild impairment (Mini Mental State score of >22 out of 30)
    • Some problems with memory or complex tasks
    • Often impairment is not noticeable
  • Moderate impairment (Mini Mental State score of 12-22 out of 30)
    • Knows name/location
    • Able to follow commands
    • Impaired memory
  • Moderate or severe impairment (Mini Mental State score of <12 out of 30)
    • May not know name/location
    • Limited understanding
    • Able to follow simple commands only
    • Severely impaired memory
cognitive function and pain assessment
Cognitive function and pain assessment
  • Mild impairment
    • No different assessment techniques
  • Moderate impairment
    • Additional teaching
    • Use simple scales with pain descriptions
  • Moderate or severe impairment
    • Use scale, but also rely on behaviors
    • Include assessments of family members and caregivers
slide59

1

2

3

4

6

7

8

9

10

Worst

possible

pain

0

No

pain

5

Numeric rating scale: acceptable for mild impairment

assessing pain in patients with moderate cognitive impairment
Assessing pain in patients with moderate cognitive impairment
  • Rely on patient
  • Surrogate report only if patient cannot reliably communicate
  • Use terms synonymous with pain
  • Use standard pain scale:
    • 0-10 Numeric Rating Scale
    • Better: Verbal Descriptor/Pain Thermometer
assessing pain in patients with moderate cognitive impairment61
Assessing pain in patients with moderate cognitive impairment
  • Ask about present pain
  • Ensure understanding of tool use
    • Do a “practice” assessment
    • Compare pain now with best and worst pain
    • Check for discrepancies between pain rating and function to identify possible underreporting of pain
verbal descriptor scales
Verbal Descriptor Scale (VDS)

___ Most Intense Pain Imaginable

___ Very Severe Pain

___ Severe Pain

___ Moderate Pain

___ Mild Pain

___ Slight Pain

___ No Pain

(Herr et al., 1998)

Present Pain Inventory (PPI)

0 = No pain

1 = Mild

2 = Discomforting

3 = Distressing

4 = Horrible

5 = Excruciating

(Melzack & Katz, 1992)

Verbal Descriptor Scales
pain thermometer

Pain as bad as it could be

Extreme pain

Severe pain

Moderate pain

Mild pain

Slight pain

No pain

Pain Thermometer

(Herr and Mobily, 1993)

assessing pain in patients with severe cognitive impairment
Assessing pain in patients with severe cognitive impairment
  • Ask the patient
  • Also ask:
    • Family members
    • Caregivers
  • Particular attention to factors that could increase pain (movement, bathing, transfers, dressing changes)
  • Use simple scale and/or behaviors to assess severity
facial pain scales
Facial Pain Scales

Faces Pain Scale

Bieri D et al. Pain. 1990;41:139-150.

behaviors and non verbal clues
Behaviors and non-verbal clues

Direct Observation or History from Caregiver for evidence of pain-related behaviors(during movement, not just at rest)

  • Facial expressions of pain (grimacing)
    • Less Obvious: slight frown, rapid blinking, sad/frightened face, any distorted expression
  • Vocalizations (crying, moaning, groaning)
    • Less obvious: grunting, chanting, calling out, noisy breathing, asking for help)
  • Body movements (guarding)
    • Less obvious: rigid, tense posture, guarding, fidgeting, increased pacin, rocking, restricted movement, gait/mobility changes such as limping, resistance to moving
the importance of recognizing changes as clues to pain
Changes in Interpersonal Interactions

Combative/ aggressive

Resisting care

Decreased social interactions

Socially inappropriate

Disruptive

Withdrawn

Changes in Activity Patterns/Routines

Sudden cessation of common routines

Increased wandering

Difficulty sleeping

Increase in rest periods

Refusing food/appetite change

The importance of recognizing changes as clues to pain

Changes in Mental Status

  • Irritability or distress
  • Increased confusion
  • Agitation
  • Crying or tears
algorithm for assessing pain in severe cognitive impairment
Algorithm for assessing pain in severe cognitive impairment
  • Unusual behavior should trigger assessment of pain as a potential cause

But: Some patients exhibit little or no pain-related behaviors associated with severe pain

  • Are Comfort Needs Being Met?
  • Evidence of pathology that may be causative (e.g. infection, constipation, fracture)?
  • Assess patient report (if possible)
  • Assess behaviors
  • Attempt an analgesic trial
    • If in doubt, analgesic trial may be diagnostic
    • Acetaminophen 500mg TID, (titrate up to 3-4G/day)
summary of pain measurement
Summary of pain measurement
  • Overview
  • Challenges and approaches
    • Mild to moderate cognitive impairment
    • Moderate to severe cognitive impairment
  • Examples of tools to assist assessment
    • Intensity Scales
    • Interview Guide
    • Pain-related Behaviors
    • Approach to Nonverbal Cognitively-Impaired Older Adult
outline70
Outline:
  • Why measure the quality of end-of-life care?
  • A framework for measurement
    • Structures of care
    • Processes of care
    • Outcomes
  • Measuring outcomes
    • Prospective data
    • Retrospective data
  • One example: Pain measurement