Assessment and management of pain near the end of life

1. Assessment and management of pain near the end of life David Casarett MD MA University of Pennsylvania

2. Goal: • To describe an evidence-based approach to pain management near the end of life, with a focus on: • Assessment • Defining goals for care and enpoints of pain management • Use of opioids • Appropriate use of opioids • Managing opioid-related side effects • Beyond pain management: the role of hospice in long term care

3. Audience: • Clinicians in long term care: • Physicians • RNs • Advance Practice Nurses • Surveyors • Quality Improvement leaders

4. Case: • Mr. Palmer is an 84 year old man with moderate dementia (MMSE=15), severe peripheral vascular disease and coronary artery disease. • He currently lives in a nursing home, where he is dependent on others for most activities of daily living. He is able to speak in short sentences and can participate in health care decisions in a limited way. His daughter discusses his care with him, but ultimately makes all decisions for him.

5. Case, part 2 • He suffers a fall that results in a fracture of the left hip and is evaluated in a hospital emergency room. • Because of his other medical conditions, high operative risk, and poor quality of life, his daughter decides with Mr. Palmer that he would not want to undergo surgery and instead would prefer to be kept comfortable. • He returns to the nursing home with a plan for comfort care, with an emphasis on pain management.

6. Outline • Scope of the problem: pain near the end of life in nursing homes • Assessment • Background • Principles of assessment • Management • Establishing goals of care • Defining endpoints of pain management • Opioids-the mainstay of pain management near the end of life • Use of opioids • Management of side effects • Beyond pain management: the role of hospice in the nursing home

7. Scope of the problem: pain near the end of life in nursing homes • Defining the “end of life” • No established definition • 6 month prognosis (hospice eligibility) not useful • Arbitrary • Difficult to determine accurately • Instead: A resident is near the end of life if he/she has a serious illness that is likely to result in death in the foreseeable future • Operationalize as: “Would I be surprised if this resident were to die in the next year?” (Joanne Lynn) • Mr. Palmer: Would not be surprised—peripheral vascular disease, coronary artery disease, dementia, recent hip fracture.

8. Scope of the problem: Common serious illnesses in the nursing home • Cancer* • Dementia* • Stroke* • Peripheral Vascular Disease* • Falls/Hip fracture* • Congestive Heart Failure • Chronic Obstructive Pulmonary Disease • Cirrhosis *Associated with pain

9. Prevalence of pain (all diagnoses) • Depends: • Surveys: 30-71% • Medication audits: 25-50% • Hospice (Pain requiring intervention) • 25% (Casarett 2001)

10. What is the primary cause of pain? • Low back pain 40% • Previous fractures 14% • Neuropathy 11% • Leg cramps 9% • DJD (knee) 9% • Malignancy 3% (Ferrell et al JAGS 1990)

11. What are the characteristics of pain in the nursing home? (Ferrell et al JAGS 1990)

12. Room for improvement? • Undetected in 1/3 (Sengstaken and King 1993) • Undertreated (Bernabei et al 1998) • Both (cognitively impaired) (Horgas and Tsai 1998)

13. Pain assessment Adapted from AGS Persistent Pain Guidelines

14. Comprehensive pain assessment: History • Evaluation of Present Pain Complaint • Self-report • Provider/family reports • Impairments in physical and psychosocial function • Attitudes and beliefs/knowledge • Effectiveness of past pain-relieving treatments • Satisfaction with current pain treatment/concerns

15. Comprehensive pain assessment:Objective data • Careful exam of site, referral sites, common pain sites • Observation of physical function • Cognitive impairment • Mood • Limited role for imaging • May be useful • Often will not change management

16. Special situations: Mild to moderate cognitive impairment • Direct query • Surrogate report only if patient cannot reliably communicate • Use terms synonymous with pain (“hurt” “sore”) • Ensure understanding of tool use • Give time to grasp task and respond and repetition • Ask about present pain • Ask about and observe verbal and nonverbal pain-related behaviors and changes in usual activities/functioning • Use standard pain scale, if possible • 0-10 Numeric Rating Scale • *Verbal Descriptor/Pain Thermometer • Faces Pain Scale

17. 1 2 3 4 6 7 8 9 10 Worst possible pain 0 No pain 5 Numeric Rating Scale

18. 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 1999) Verbal Descriptor Scales

19. 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)

20. Advantages of verbal descriptor scales • Data suggest that patients may be more likely to be able complete verbal descriptor scales (Ferrell 1995;Closs 2004) • May be less sensitive to cognitive impairment/visual impairment • But, no “one size fits all” scale

21. Facial Pain Scales Faces Pain Scale Bieri D et al. Pain. 1990;41:139-150.

22. Principles of assessment: mild/moderate cognitive impairment • The “best” assessment method is the one that the patient can use • This is often, but not always, a verbal descriptor scale • Use the same instrument/scale consistently • Use it in the same way

23. Special situations:Moderate to severe cognitive impairment Direct observation or history for evidence of pain-related behaviors(during movement, not just at rest) • Facial expressions of pain (grimacing) • Less specific: slight frown, rapid blinking, sad/frightened face, any distorted expression • Vocalizations (crying, moaning, groaning) • Less specific: grunting, chanting, calling out, noisy breathing, asking for help • Body movements (guarding) • Less specific: rigidity, tense posture, fidgeting, increased pacing, rocking, restricted movement, gait/mobility changes such as limping, resistance to moving

24. Moderate to severe cognitive impairment • Unusual behavior should trigger assessment of pain as a potential cause • Caveat: Some patients exhibit little or no pain-related behaviors associated with severe pain • Always consider whether basic comfort needs are being met • “Pre-test probability” Evidence of pathology that may be causative (e.g. infection, constipation, fracture)? • Attempt an analgesic trial • If in doubt, analgesic trial may be diagnostic • Acetaminophen 500mg TID, (titrate up to 3-4G/day)

25. Principles of assessment: moderate/severe cognitive impairment • No single optimal method (no “gold standard”) • Assessment requires several sources of information (observations of several providers, family) • Many “pain-related behaviors” are non-specific • If no known cause of pain, trial of acetaminophen can be useful • If reason for pain, empirical treatment is appropriate

26. Pain management

27. Principles of pain management • Defining goals of care • Defining endpoints of pain management • Opioids-the mainstay of pain management near the end of life • Use of opioids • Management of side effects • Beyond pain management: the role of hospice in the nursing home

28. Individualized care planning:Defining goals of care • Highly variable goals for care: • Comfort • Function • Survival • Highly variable preferences about: specific management choices • Site of care • Treatment preferences (e.g. DNR, transfer to hospital) • Site of death • Optimal balance of pain, sedation, and other medication side effects

29. Cure of disease Maintenance or improvement in function Prolongation of life Treating pain in a resident with these goals….

30. Relief of suffering Quality of life Staying in control A good death Support for families and loved ones Or treating pain in a resident with these goals….

31. Cure of disease Maintenance or improvement in function Prolongation of life Relief of suffering Quality of life Staying in control A good death Support for families and loved ones The importance of defining goals of care

32. Individualized care planning:2 examples • Mr. Palmer’s daughter accepts that there are no further treatment options available to extend life. She says it is most important for her father to avoid pain or discomfort. • Aggressive pain management • Family support • Hospice • Mr. Palmer’s daughter says that he would want any treatment that might improve his survival and maintain the function he has left. She says he wants aggressive treatment even if it results in discomfort. • Surgical intervention • Aggressive physical therapy

33. Curative / Life-prolonging Therapy Course of illness Relieve Suffering (Palliative Care and hospice)

34. Challenges of defining goals of care accurately • Interpreting resident statements • Multiple disciplines=multiple interpretations • (Importance of clear documentation) • Conflicting resident/family goals • Uncertainty about resident decision-making capacity • Changes in goals over time (resident and family) • Inconsistent preferences or goals (e.g. extending life but no transfer to acute care)

35. Defining goals of care: principles • Broad categories are most useful (survival, function, comfort, others that are resident-defined) • Goals rather than treatment preferences (e.g. resuscitation status) • Useful guides (not mutually exclusive): • Prolonging survival • Preserving function/independence • Maximizing comfort

36. Case: Goals for care • Mr. Palmer’s daughter accepts that there are no further treatment options available to extend life. She says it is most important for her father to avoid pain or discomfort. • This plan is communicated to other family members and staff, and is clearly documented in the medical record

37. Defining endpoints of pain management • The optimal plan of pain management is one that: • Achieves an acceptable (to the patient) level of pain relief • Preserves an acceptable level of alertness and function • Offers an acceptable side effect profile

38. Defining endpoints of pain management • Usually not “no pain” • Depends on: • Goals • Treatment preferences • Tolerance for side effects

39. A note about assessing satisfaction • Advantages: • Simple, easy to assess • Easy to interpret • Often encouraged by facility leadership • Disadvantages: • Ceiling effect • Poor association with pain control • Confounded by other factors (Ward 1996, Desbiens 1996, Casarett 2002, Gordon 1996) • Side effects • prn dosing/control • Ethnicity • Depression

40. Pain management near the end of life: focus on opioids

41. Multiple strategies for the management of pain near the end of life • Heat/cold • TENS units • Counseling • Spiritual support • NSAIDs/Acetaminophen • Agents for neuropathic pain (e.g. tricyclic antidepressants, gabapentin) • Opioids

42. Key principles of management • Opioids are mainstay of management • Use of multiple pharmacological agents is often needed to provide optimal management: • NSAIDs • Tricyclic antidepressants • Corticosteroids • Anticonvulsants • Traditional rules discouraging polypharmacy don’t apply in this setting: importance of individualized management.

43. Why focus on opioids? • Highly effective • Underutilized • Poorly understood by providers and public • Common misconceptions

44. Pain management near the end of life: the role of opioids • The mainstay of effective pain management near the end of life • Appropriate for residents with moderate or severe pain • 4/10 or greater, or • Conditions that are associated with moderate-severe pain (when resident is too cognitively impaired to permit an accurate assessment of severity)

45. Addiction and other concerns about opioids • Addiction: a syndrome of physical and psychological dependence • Very rare in opioid treatment near the end of life • Estimates of risk are <<1% • Except in very unusual circumstances (e.g. history of drug dependence), concerns about addiction are not appropriate in the setting of pain management near the end of life

46. Increases in opioid dose often attributed (incorrectly) to addiction • Tolerance: Gradual decrease in sensitivity to opioid effects (pain relief and side effects) • Results in “dose creep” • Disease progression • Pseudo addiction: Increases in medication requests (particularly prn opioids) out of proportion to pain and/or medication hoarding, in the setting of significant discomfort • Often labeled as addiction/diversion • Much more likely to be due to fear of pain/slow nursing response to requests for prn meds/desire for more control over pain management • Managed by more aggressive pain management not by reducing/controlling opioids

47. Using opioids: strategies for administration • Non-invasive (oral//PEG tube/transdermal) administration is preferred • Sustained release preferred for persistent pain • Virtually all patients receiving sustained release opioids should have prn opioid available for “breakthrough” pain (typically 10% of the 24 SR dose)

48. Strategies for administration • Begin with immediate release preparation • Scheduled (cognitively impaired/severe pain) • prn • Can increase every 6-8 hours (faster if using IV/SC administration) • Titrate up in reasonable (proportional) steps (think in terms of 20-50% increases) • Switch to a long-acting preparation when pain control is adequate but continue access to prn dosing • If continued titration is needed, use prn doses to estimate additional opioid requirements

49. Which opioid? Basic considerations • Morphine: Inexpensive, widely available, and can be administered by multiple routes and schedules • Hydromorphone: More potent, but no SR and limited routes of administration. Advantages in renal insufficiency. • Oxycodone: SR available, also concentrated PO, but no IV. Possibly decreased risk of delirium in older patients. • Methadone: inexpensive, available IV and PO. T1/2 is longer than duration of effect. • Fentanyl patch: Convenient, conversion difficult, poor choice when rapid titration is needed.

50. Which opioid? • Overall, no evidence of one agent’s superiority with respect to: • Effectiveness • Side effects • Choice based on: • Past experience • Clinician’s comfort/experience with an agent • Specific features of a resident’s case (e.g. need for rapid titration)