Suffering in Silence: Improving Care for Persons with Dementia and Their Caregivers

1. Suffering in Silence: Improving Care for Persons with Dementia and Their Caregivers R. Sean Morrison, MD Director, National Palliative Care Research Center Director, Hertzberg Palliative Care Institute Hermann Merkin Professor of Palliative Care Professor, Geriatrics and Medicine BrookdaleDepartment of Geriatrics & Palliative Medicine Mount Sinai School of Medicine New York, NY sean.morrison@mssm.edu www.npcrc.org

2. The Case of A.S. A.S. was an 85 year old woman with advanced dementia who was admitted to Mount Sinai Hospital in 3/94 from a nursing home with urosepsis. She had no known family and had been living in the nursing home for approximately 5 years. On admission, she was extremely agitated and combative. Over the next 48 hours, she responded well to antibiotic treatment but her behaviour became more disruptive. She displayed marked sleep wake cycle disturbances, resisted all attempts to transfer or reposition her, refused to eat, and was treated with escalating doses of haloperidol and physical restraints. On hospital day 3, a geriatric consultation was called to assist with the management of her “behavioural disorder”.

3. The Case of A.S. On exam the geriatric consult team noted a large 4 by 5 cm left breast mass. Palpation of her ribs and shoulders elicited withdrawal and groaning. A.S. was started on intravenous morphine sulfate. With escalating doses of morphine, her agitation resolved, as did her sleep wake cycle disturbance, her anorexia, and her resistance to movement. Major tranquilizers and physical restraints were discontinued. Skeletal survey revealed widespread bone metastases. She was discharged to the nursing home with hospice on oral morphine sulfate where she lived comfortably for the next 18 months.

4. The needs of an aging society Sources of suffering in advanced dementia The challenges of improving care Summary and discussion

5. Median Life Expectancy in Years 15,000 BCE 1,000 BCE 2013 30,000 BCE

6. U.S. Life Expectancy in 2013 • Median age of death is 78 years. • Among survivors to age 65, median age at death is 82 years. • Among survivors to age 80, median age at death is 88 years

7. Canada Population Projections

10. Mixed Dementia • Type II DM • Oxygen dependent COPD • CHF • OA • Dependent in ADLs

12. Prevalence of Alzheimer’s Disease in Canadians Over Age 65 Canadian Study on Health & Aging

13. Alzheimer Disease & Related Dementias • Affects 30-40% of patients over 85 (50% in advanced stages) • Two thirds of newly admitted nursing home residents have a diagnoses of dementia • Currently costs $37,000/person/year in caregiver, nursing home, and medication costs ($5.5 billion per year in Canada and $183 billion/year in the U.S.) • Projected 750,000 Canadians will suffer from advanced dementia by 2030 • There is no cure and disease modifying therapies are marginally effective at best

14. Advanced Dementia • Profound memory deficits • Speech limited to less than 5 words • Total functional dependence • Incontinence • Inability to ambulate Mitchell S L et al. Ann Intern Med 2012;156:45-51

15. Dementia is Different Gill T et al. N Engl J Med 2010;362:1173-1180

16. Clinical Course of Advanced Dementia • CASCADE: Prospective study of 323 nursing home residents with advanced dementia from 22 nursing homes over 18 months • Overall mortality rate of 53% • 41% developed pneumonia • 6 month mortality of 47% • 53% had a febrile episode • 6 month mortality of 45% • 86% an eating problem • 6 month mortality of 39% Mitchell S L et al. N Engl J Med 2009;361:1529-1538

17. The Burden of Dementia... • Financial and emotional costs to families and family caregivers • >90% have a family caregiver (>70% are women) • 20-40% of caregivers report depression • Caregivers reporting strain have a 1.5 fold increased risk of death • Years of slowly progressive dependency • Loss of work, family network, social supports, health, and savings. • Untreated physical symptoms and burdensome iatrogenic interventions

18. Prevalence of Distressing Symptoms in Dementia Mitchell S L et al. N Engl J Med 2009;361:1529-1538

19. Is Pain Different in Dementia? • Tolerance to acute pain possibly increases but pain threshold does not appear to change(Benedetti et al,, Pain 1999, 2004) • Dementia may blunt autonomic nervous system’s response to acute pain(Rainero et al, Euro J Pain, 2000) • Cognitive impairment maydecreaseperceived analgesic effectiveness(Benedetti et al, Pain, 2006) • No evidence that dementia results in the loss of the ability to feel pain

20. Analgesic Prescribing in Hip Fracture Patients with Advanced Dementia • 76% of cog. intact patients rated their average pre-operative pain as moderate-severe • 68% of cog. intact patients rated their average post-operative pain as moderate to severe Morrison & Siu, JPSM, 2000

21. Analgesic Prescribing For Dementia Patients Following Hip Fracture Repair Morrison & Siu, JPSM, 2000

22. Undertreatment of Pain in Nursing Home Residents With Dementia • Pain is documented less frequently for dementia residents, even with similar numbers of painful diagnoses as less impaired residents (Sengstaken & King, 1993) • Less analgesic is prescribed/administered for dementia residents, despite similar numbers of painful diagnoses (Horgas & Tsai, 1998) • Only ¼ of demented residents who are identified as having pain receive any analgesic therapy (Scherder et al, 1999; Bernabei et al, 1998; Won et al, 1999)

23. Why is Pain Undertreated in Dementia? -An Anonymous Reviewer, Ann Intern Med

24. Delirium • Incidence & Costs • 7% - 10% of all persons over age 65 years develop delirium annually • Complicates hospital stay for > 2.2 million persons/year • Estimated costs: > $8 billion/year • Outcomes: •  LOS •  Complication rate •  Mortality •  D/C to SNF •  Cognitive decline •  Risk major depression •  Loss of ADLs • Functional recovery

25. Pain, Opioids, and Delirium • Two studies* have reported a significant association between opioid use and delirium • Neither study controlled for pain • All patients received meperidine • Five studies† have reported a significant association between uncontrolled pain and delirium • No relationship found between opioid use/dose and delirium in 4 studies • Opioids found to reduce the risk of delirium in 2 studies *Marcontonio et al, JAMA 1994, Schor et al, JAMA 1992 • †Egbert et al, Arch Intern Med 1990 ,Duggleby & Lander, JPSM 1994, Lynch et al, AnesthAnalg 1998; Morrison et al, J of Gerontology: Medical Sciences, 2004

26. Risk Factors For Delirium in Hip Fracture Patients • Subjects able to self-report pain • Severe pain prior to delirium • OR 9.0, 95% CI 1.8-45, P=0.01 • Low doses of opioids (<10 mg of parenteral milligrams of mso4/day) • OR 4.4, 95% CI 0.3-68.6, P=0.03 • Received meperidine (NS) • Increase in opioid dose after pain detected (NS) • Subjects unable to self-report pain • Low doses of opioids (<10 mg of parenteral milligrams of mso4/day) • OR 4.0, 95% 1.6-10.2, P=0.004 • Received meperidine • OR 3.4, 95% 1.6-6.9, P=.001 Morrison et al, J Gerontol Med Sci, 2003

27. Sources of Suffering: Iatrogenic Interventions

28. Severe (8-10) Arterial blood gas Moderate (4-7) Central line placement Nasogastric tube Peripheral IV insertion Phlebotomy Mild (1-3) IM/SC injection Urethral catheter Mechanical restraints Movement from bed to chair None (0) IV catheter Chest x-ray Vitals signs Transfer to a procedure Waiting for a test or procedure PO medications Pain Ratings For 16 Common Hospital Procedures For 165 Subjects Morrison et al, JPSM 1998

29. Severe (8-10) Nasogastric tube Mechanical ventilation Mechanical restraints Central line placement Moderate (4-7) Arterial blood gas Urethral catheter Mild (1-3) IV insertion Phlebotomy IV catheter IM/SC injection Waiting for procedures Movement from bed to chair Chest X-ray None (0) Transfer to a procedure Vitals signs PO medications Discomfort Ratings For 16 Common Hospital Procedures For 165 Subjects Morrison et al, JPSM 1998

30. Prevalence of Painful/Uncomfortable Procedures in Hospitalized Dementia Patients Morrison et al, JAMA 1998

31. Burdensome Interventions in Nursing Home Residents • Over last 18 months of life… • 34% treated with parenteral therapies • 17% hospitalized • 10% taken to the emergency department • 8% were tube fed • 22% referred to hospice • 96% of proxies stated that comfort should be the primary goal Mitchell S L et al. N Engl J Med 2009;361:1529-1538

32. Burdensome Transitions Prior to Death 474,829 nursing home decedents (2000-2007) Burdensome Transition: Hospital transfer within 3 days of death, lack of nursing home continuity after hospitalization in last 90 days of life, multiple hospitalizations in last 90 days of life. • 19% of decedents had a burdensome transition (2.1% in Alaska to 38% in Louisiana) • Burdensome transitions associated with: • Increased risk of feeding tubes (rr=3.38) • ICU admissions (rr=2.10) • Stage IV pressure ulcers (rr=2.28) • Late referrals to hospice (3 days prior to death) (rr=.17)

33. Additional Sources of Suffering in Dementia • Loss of identity and personhood • Loss of control • Loss of meaning and purpose • Burden on loved ones (physical, financial, emotional, spiritual)

34. The Challenge of Improving Care Although the world is full of suffering, it is also full of the overcoming of it. …Helen Keller, Optimism 1903

35. Pain Assessment in Verbally Responsive Dementia Patients • Focus on present pain • Find a scale that works and use it consistently • Scheduled assessment and assessment during potentially painful procedures • Dressing changes, turning/repositioning, PT • Use verbal reports and observations • Assess reliability by asking about pain at a different time (when pain is expected to be more severe, e.g., during movement)

36. Pain Behaviours in Non-Verbal Dementia Patients Subtle, missed, or mistaken for something else Grimacing, wincing, guarding Changes in activity level Sleeplessness, restlessness Somnolence resulting from exhaustion Resistance to movement Withdrawal/apathy Increased agitation, anger, etc Decreased appetite Vocalizations

37. Approaching Pain and Discomfort in Dementia • “Assume pain or discomfort is present” • Ensure basic comfort needs are met • Establish a routine pain assessment procedure • Use a hierarchy of pain assessment • Patient report (if possible) • Prior pain history/relevant diagnoses • New painful conditions • Behavioral indicators • Observer and caregiver assessment • Use empirical trials and pre-emptive analgesia • Re-assess and Document Ersek, M et al. JPM;8: 556-566

38. Evidence for Attempting Empiric Analgesic Trials • Regular analgesic therapy increased social engagement in NH residents (Chibnall et al, 2005) • Use of standardized assessment and treatment protocol significantly decreased discomfort among demented NH residents (Kovach et al, 1999) • Acetaminophen 650 mg TID: 63% decrease in negative behaviors, 75% of psychotropicsdiscontinued (Douzjian et al, 1998)

39. Dementia and Hospice • Dementia nursing home residents referred to hospice were significantly more likely to: • Receive scheduled opioids for pain • Receive medications for dyspnea • Have caregivers who report fewer unmet needs • But…only 22% of residents were referred and only 11% of U.S. hospice enrollees have a primary diagnosis of dementia Kiely et al. J AmerGeriatr Soc 2010;58:2284-2291

40. “Goodness of Fit” Between Advanced Dementia and Hospice • Hospice model was developed for the cancer patient • Difficulty estimating 6 month survival (survival averages 120-170 days but difficult to predict for individual patient) • Costly custodial care and high family respite needs compared to other hospice patients • Patients cannot participate in care decisions • Change in role for nurses, social workers, and clergy with diminished satisfaction with care • Family “ownership” of patient and refusal of volunteer support • Prolonged dying phase “death by degrees” • Tension between hospice and long term care facilities

41. “Goodness of Fit” Between Advanced Dementia and Nursing Homes • Nursing home developed as a residential model for frail older adults • Reluctance to be seen as a site of death • High personnel requirements if tube feeding is withheld and spoon feeding substituted • Financial incentives that promote hospitalization for acute illness • Staff “ownership” of residents and exclusion of staff from care decisions

42. Advance Care Planning in Dementia • Advance directives are associated with: • Reductions feeding tube placement • Reductions in hospitalizations • Proxy decision making • Proxy knowledge of prognosis and clinical course of dementia is associated with: • Reductions in burdensome treatments • Reductions in hospitalization • Reductions in gastrostomy tube placement • Increases in hospice referrals • Increases in palliative treatments Mitchell S L et al. N Engl J Med 2009;361:1529-1538; Kiely et ela, J AmerGeriatr Soc 2010;58: 2285-2290; Morrison et al, J AmerGeriatr Soc 2005; 53;290-294

43. Decision Nodes • Hospitalization for acute illness • Benefits: ICU care, intravenous therapies, intensive monitoring • Burdens: Disorientation, painful iatrogenic interventions, care team unfamiliar with patient, hazards of hospitalization, increased mortality and functional decline (pneumonia) • Antibiotics for fever • Benefits: Improved survival, Rapid symptom resolution (UTI) • Burdens: No improvement in 6 month survival in late-stage disease, Medication side effects, Colonization and super-infection with antibiotic resistant organisms, antibiotic induced infectious colitis

44. Decision Nodes • Tube Feeding • Benefits: Weight gain, ? reduction in 30 day mortality • Burdens: uncomfortable and painful procedure, Eliminates the attention and human contact of spoon feeding, no oral sensation of food and drink, increased use of chemical and mechanical restraints, no long-term survival benefit

45. In Summary… • Identify chronic conditions associated with known pain or discomfort from medical history/physical exam • Pre-emptive analgesia for uncomfortable procedures • Turning, repositioning, dressing changes • Minimize or eliminate painful/uncomfortable iatrogenic procedures • Empiric analgesic treatment trials • Documented treatment plans for anticipated complications • Hospitalization, feeding disorders, antibiotics • Informal and formal caregiver support and treatment plan

46. Steps Forward and a Research Agenda

47. Some Final Challenges… • Difficulty in finding meaning and value in caring for non-communicative patients • Loss of primary care providers that treated patients prior to the onset of their dementia • Lack of advocates/surrogates for dementia patients • 50% of dementia subjects admitted to hospital lacked a functioning surrogate who could consent for medical treatment (Baskin et al, J AmerGeriatri Soc, 1998)