Ethical Challenges in Dementia in Long Term Care
Transcript of Ethical Challenges in Dementia in Long Term Care
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Ethical Challenges in Dementia in Long Term Care
Joseph W. Shega, MD
Regional Medical Director
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Objectives
• Identify clinical choice points that indicate a poorer prognosis in dementia
• Integrate evidence-based medicine when discussing feeding tube decisions with families of loved ones with dementia
• Appreciate the benefits of hospice enrollment for patients dying from dementia
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Dementia: Epidemiology
• Current estimate: 4 million in US
• Projected for 2050: 16 million
• 1 in 3 women will develop dementia during her lifetime
• Almost half of people over age 85 have dementia
• Someone new develops dementia every 68 seconds in the US
Evans DA, Scherr PA, Smith LA, et al. Aging 1990;2(3):298-302.
Alzheimer’s Association. Available at http://www.alz.org/news_and_events_rates_rise.asp,
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Dementia at the End of Life
• 1 in 3 patients who die have a diagnosis of dementia
• 5th leading cause of death in persons over the age of 65
• A diagnosis of dementia on average decreases ones life expectancy by about 50%
• 2/3 of dementia patients admitted to a NH near end of life
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Percentage Change in Select Causes of Death 2000 to 2010
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Dementia as the Cause of Death
Complication Cause of
Death Mode of Death
Acute Infection
Malnutrition
Muscle weakness
Immobility
Pneumonia
Urinary tract infection
Swallowing
Difficulties
Malnutrition
Dysphagia
Aspiration pneumonia
Electrolyte imbalance
Injuries
Trauma
Immobility/Atrophy
Osteoporosis
Hip fracture
Other fracture
Vascular disease
Inflammation
Amyliod deposition
Seizure
Stroke
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Dementia Mortality by Diagnosis
(Garcia-Ptacek, et al, 2014)
7
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Mitchell, et al. Arch Intern Med 2004;164:321-326.
Less likely to have advance directives
More likely to receive non-palliative treatments
Less pain, SOB, constipation
More infections
More antipsychotic medication
End of Life Experience IN Persons Dying From Dementia
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Symptoms Terminal Dementia
Mitchell SL et al. N Engl J Med 2009;361:1529-1538
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Case of AF
• 83 y/o female with advanced Alzheimer’s dementia diagnosed 6 years ago
• Admitted from home to hospital with pneumonia • Minimally verbal • Fair appetite with some weight loss over last 6
months • IADL- dependent • ADL- baseline able to walk from the chair to the
bed with a walker; self feed with her hands; incontinent of urine and stool
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Case AF Cont….
• Medications- None
• SH- lives with daughter who is primary caretaker
• Has not seen a physician in several years as patient has been essentially homebound
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AF Hospital Course
• Antibiotics and IVF initiated
• Patient with poor oral intake
• Increased confusion and more sleepy (delirium)
• Unable to really participate in physical therapy
• ADL Now- Not able to get out of bed without assistance, needs to be fed, incontinent bladder and bowel
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Elements Important To Goals of Care Conversations
Shared Decision-Making
Allen L A et al. Circulation 2012;125:1928-1952
Get stronger Better nutritional Status Less confused and more awake Avoid burdensome interventions Get back home Live as long as possible
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Disease Trajectory Stage Cognition Function
Mild
(MMSE >20)
Short-term memory Driving
Finances
Moderate
(MMSE 20-10)
Memory, Word finding,
Comprehension
Bathing
Dressing
Severe
(MMSE <10)
Language and
Comprehension limited
Continence
Walking
Endstage
MMSE 0
Utter few words
No family recognition
Eating
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Death Trajectory Typical in Chronic Illness
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Median survival was 478 days, 24.7% within 6 mos
54.8% died, 93.8% in NH
6 mo mortality 38.6%
6 mo mortality 44.5%
6 mo mortality 46.7%
Sentinel events (42) rarely caused death:
•Seizures (14)
•GI bleeding (11)
•Hip / bone fracture (7)
•Stroke (3)
•PE (1)
•MI (1)
•Other (5)
Natural History of Dementia
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Survival Acute Illness Outcomes Severe Dementia vs Cognitively Intact
Pneumonia
6 month mortality
53% Impaired
13% Intact
Hip Fracture
6 month mortality
55% Impaired
12% Intact
• Only 24% of dementia patients had standing order for analgesia.
• No opioid was associated with an increased risk of delirium
Morrison et al. JAMA 2000;284
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Hospitalization, ADL Change, & Death
(Boyd, et al, 2008)
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Hospital Delirium & Subsequent
Mortality
12-month
mortality
Delirium 41.6%
Non-delirium
14.4%
(van Zyk, et al, 2003)
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Dementia-related Complications or Secondary Conditions
• Pneumonia • Pyelonephritis/UTI • Sepsis • Febrile episode • Difficulty eating • Poor nutritional status • Feeding tube (decision) • Pressure sores • Hip fracture • Hospitalization with ADL decline or persistent
delirium
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Proxies’ belief and knowledge were important to reduce burdens
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Case of AF Cont…
• Care team discussed post-acute care options
– Skilled facility
– Home Health
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Case AF Skilled Facility Day 20…
• Delirium resolved as patient more awake and interactive, still mostly non-verbal.
• Participating in physical therapy but not making much progress
• Completes course of antibiotics • Appetite fair with overall poor oral intake and some
dysphagia with choking- speech pathology consulted • Care plan meeting discuss transition back to home-
home health • That night patient aspirates at dinner and is re-
admitted to the hospital
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Re-Hospitalization Rates from Skilled Facilities Nursing Facility
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Reason for Hospital Admission from Nursing Home
Krueger K et al. Nursing Research and Proactive 2011
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Case of AF Hospital 2 Cont…
• Aspiration pneumonia with antibiotics initiated along with IVF
• Delirium recurs
• Minimal oral intake
• Not able to participate in therapy and recommendation of NPO by speech pathologist with placement of feeding tube
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Don’t recommend percutaneous feeding
tubes in patients with advanced dementia;
instead offer oral assisted feeding.
Don’t recommend percutaneous feeding
tubes in patients with advanced dementia;
instead, offer oral assisted feeding.
Don’t insert percutaneous feeding
tubes in individuals with advanced
dementia. Instead, offer oral assisted
feedings
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Reasons Cited for Feeding Tube Placement
prevent aspiration pneumonia?
prevent malnutrition?
decrease the mortality rate?
prevent pressure sores or hasten their healing?
improve patient comfort?
improve functional status?
Shega et al. Journ Pall Med 2003
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Do Feeding Tubes Prevent Aspiration Pneumonia - No
• No RCT of the intervention has been done
• No data shows feeding tubes decrease the risk of aspiration pneumonia
• Still have aspiration of oral secretions
• Not shown to reduce the risk of regurgitated gastric contents
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Effect of History of Aspiration Pneumonia in Tube Fed Patients
Aspiration pneumonia rates in tube fed patients by history of prior aspiration or not:
Study Pts F/U + History - History
Jamagin 60 6mo 37.5% 11.1%
Weltz 100 Death 11.1% 7.3%
Cogen 109 Var 40.7% 17.0%
Hassett 87 54mo 62.1% 29.3% Finucane TE, et al. Use of Tube Feeding to Prevent Aspiration Pneumonia. Lancet 1996
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Why Tube Feeding May Not Decrease
Aspiration Pneumonia
• Cricopharyngeal incoordination
• Decreased esophageal motility
• Altered esophageal sphincter tone
• Impaired gastric emptying
• Ineffectiveness of elevation of head of bed
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Reasons Cited for Feeding Tube Placement
prevent aspiration pneumonia?
prevent malnutrition?
decrease the mortality rate?
prevent pressure sores or hasten their healing?
improve patient comfort?
improve functional status?
Shega et al. Journ Pall Med 2003
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Studies of Tube Feeding and Malnutrition
• 40 LTC residents lost weight and depleted lean body mass over 1 year despite tube feeding
• Despite adequate formula, micronutrient and protein malnutrition existed
• Pressure ulcer number unchanged
• Chronic disease, immobility, and neurologic deficits probably undermine nutritional support
Henderson C et al. Prolonged TF in LTC: Nutritional status and Clinical Outcomes J Am Coll of Nurs 1992
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Studies of Tube Feeding and Malnutrition
• 126 pts receive a PEG, 75% neurologically impaired and dependent in ADLs
• Over 1 year, improvement in albumin of 1g/dl occurred in only 13.4% of pts; 5% had a decline
• No significant improvement in any nutritional parameters
Callahan C. Et al. Outcomes of PEG Among Older Adults in a Community Setting. JAGS 2000
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Why Tube Feeding May Not
Improve Nutritional Status
• Advanced dementia associated with chronic underlying inflammatory state which may limit ability of body to appropriately utilize nutrients.
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Reasons Cited for Feeding Tube Placement
prevent aspiration pneumonia?
prevent malnutrition?
decrease the mortality rate?
prevent pressure sores or hasten their healing?
improve patient comfort?
improve functional status?
Shega et al. Journ Pall Med 2003
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Does Tube Feeding Prolong Survival Significantly - No
• No published studies suggest tube feeding prolongs survival in dementia patients with dysphagia
• Mortality rates following PEG placement in older adults with significant neurologic burden remains consistently high – 30-day 20-40%
– 6-month 50%
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Survival Between Residents With and Without Feeding Tube
Mitchell SL et al, Arch Intern Med 1997
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Reasons Cited for Feeding Tube Placement
prevent aspiration pneumonia?
prevent malnutrition?
decrease the mortality rate?
prevent pressure sores or hasten their healing?
improve patient comfort?
improve functional status?
Shega et al. Journ Pall Med 2003
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PEG Tubes and Pressure Ulcers in Advanced Cognitive Impairment
• Compared to patients without PEG tubes placed, those with PEG tubes
– 2.27 times more likely develop pressure sore
– 0.70 times less likely to have existing sore heal
Teno J et al. Arch Int Med 2012
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Why Not?
• Tube fed patients can have increased incontinence which can increase risk of pressure ulcers
• Tube fed patients produce more urine, stool, and upper airway secretions
• Tube fed patients are more likely to be restrained
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Reasons Cited for Feeding Tube Placement
prevent aspiration pneumonia?
prevent malnutrition?
decrease the mortality rate?
prevent pressure sores or hasten their healing?
improve patient comfort?
improve functional status?
Shega et al. Journ Pall Med 2003
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Does Tube Feeding Increase Patient Comfort – No
• Unable to communicate with advanced dementia patients, so one must extrapolate from others
• In hospice literature, only transient hunger and thirst in patients who stop eating – can be relieved with ice chips and swabs
• Cancer patients feel worse with enteral feeding
• Older adults impaired thirst mechanism McCann R et al. Comfort Care for Terminally Ill Patients: The Appropriate use of Nutrition and
Hydration. JAMA, 1994
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Decision-Making and Outcomes after PEG
• 71.6% reported no conversation about tube
• Risks not discussed 1/3 cases
• Discussion shorter 15 minutes
• 51.8% thought MD strongly in favor tube
• 12.6% felt pressure by MD to place tube
• Worse end of life care
• Improved QOL 32.9%
• Patient bothered 39.8%
• Physical restraint 25.9%
• Chemical restraint 29.2% – Either 34.9%
• ED due to tube 26.8%
• Feelings related to tube – Regret 23.4%
– Right decision 61.9%
Decision Itself Adverse Outcomes
Teno J et al. JAGS 2011
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Feeding Tube Complication
• PEG short-term
• Local irritation
• Infection 4-16%
• Peg Occlusion 2-34%
• Aspiration 0-66%
• Bleeding
• Reflux
• Diarrhea 12%
• Tube migration
• PEG long-term
• Restraint use
• Diminished QOL
• Frequent replacement/removal
• No oral intake
• Limit socialization
• Poor mouth care
Teno J et al. JAGS 2011
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The Alternative: Overcoming Eating Difficulties
• Search for underlying treatable conditions
• Palatable food that like to eat, the sweet stuff
• Puree diet or semi-solid foods
• Make sure they are in the sitting position
• Slow hand feeding- swallow after each spoonful
• Cueing and gently stroking throat
• Diet modifications not supplements
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Decision-Making
1. Review the clinical situation 2. Establish the Goals of Care 3. Present options to manage feeding problem 4. Weighing risks and benefits with values and
preferences 5. How is the decision affecting the family member 6. Offer additional sources of decisional support 7. Provide ongoing support and recognize the
need to revisit the decision Cervo et al. Geriatrics 2006
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Financial Incentives Improperly Aligned
• Initial placement $2,200/person
• Complications year after insertion $2449/person
• New feeding tubes qualify for 100 days of Medicare skilled nursing benefits
• Medicaid per diem reimbursement higher for persons with TF ($190 vs. $151/day)
Mitchell SL JAGS 2003; Callahan CM et al. J Am Geriatr Soc 2001
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Case of AF Hospital 2 Cont…
• Daughter elects not to proceed with a feeding tube
• Initiate another goals of care conversations with daughter
• Care team recommends skilled facility with goals
– Resolve delirium
– Able to ambulate with walker again
– Decrease aspiration risk with speech pathology
– Improve nutritional status
– Complete course of antibiotics
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Case of AF Skilled 2
• Transferred back to the nursing home – Patient a little more alert and interactive
– No progress physical therapy as non-ambulatory and needs some assistance with feeding
– Some dysphagia and coughing with feeding
– Nutritional status continues to decline
– Antibiotics completed
• Nurse and social work want to discuss upcoming care planning meeting for discharge – Home Health recommended
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SNF Use Older Adults Last 6 months of life
Only 1.5% enrolled in hospice at discharge
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Case of AF Skilled 2 cont…
• Patient discharged planned for later in week with home health
– 2am patient spikes fever
– Transferred to ED
– Recurrent pneumonia
– Dies in ED several hours later
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Hospice Use and SNF
• 1 in 11 die while on the SNF benefit
– 3.2% one week
– 7.2% one month
• SNF benefit and die 19% enrolled in hospice
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What about hospice?
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Comprehensive Services
Service VITAS Home Health
Nurse 24 hours day Yes Variable
Nurse frequency of visits Unlimited Diagnosis Driven
Palliative Care Physician Support Yes No
Medications Included Yes No
Equipment Included Yes No
Levels of Care Home Inpatient Respite Continuous Home
Home
Bereavement Support Yes No
Primary Care/Specialty visits Yes Yes
Targeted CHF program Yes Variable
Care Plan Review Weekly Variable
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Outcome Hospice Nursing Home
Home Health
Hospital
Not Enough Help with Pain, %
18.3 31.8 42.6 19.3
Not Enough Help Emotional Support, %
34.6 56.2 70 51.7
Not always Treated with Respect, %
3.8 31.8 15.5 20.4
Enough Information Dying, %
29.2 44.3 31.5 50
Quality Care Excellent, % 70.7 41.6 46.5 46.8
Last Place of Care Experience
Teno et al. Family Perspectives on End of Life Care. JAMA 2004
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57
Where do patients spend their last days?
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Medicare Hospice Utilization
NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA:
National Hospice and Palliative Care Organization, October, 2012.
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Hospice Guidelines: Alzheimer’s Disease
FAST scale 1. No difficulties 2. Subjective forgetfulness 3. Decreased job functioning and
organizational capacity 4. Difficulty with complex tasks, instrumental
ADLs 5. Requires supervision with ADLs 6. Impaired ADLs, with incontinence 7. A. Ability to speak limited to six words
B. Ability to speak limited to single word C. Loss of ambulation D. Inability to sit E. Inability to smile F. Inability to hold head up
Complication Pneumonia Urinary tract infection Recurrent fever despite antibiotics Hip fracture Weight loss Other considerations: Rapid functional decline Recurrent hospitalizations Aspiration with eating Recurrent falls Progression of other medical conditions
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Dementia Diagnosis
Dementia Types – Alzheimer disease
– Multi-infarct
– Lewy Body
– Frontotemporal dementia
– Parkinson related
– Previous head trauma
– Alcohol
– B12 deficiency
Medical Conditions
• Delirium
• Liver disease
• Renal failure
• Depression
• Sleep apnea
Majority of dementia diagnoses stem from a combination of pathological processes
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Considerations Hospice in Dementia
• Functional disability- progressive – 3/6 ADL dependency
• Disease related complication – Pneumonia – Pyelonephritis/UTI – Sepsis – Febrile episode – Difficulty eating – Poor nutritional status – Feeding tube (decision) – Pressure sores – Hip fracture
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Hospice and Dementia
• Fewer hospitalizations (40-50% reduction)
• More likely to die in location of choice and out of hospital
• Greater satisfaction with care
• Better pain and symptom management
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Hospice vs. Non-Hospice (n=135)
Variable Adjusted Odds Ratio
95% Confidence Interval
Died in hospital 0.04 (0.01 – 0.18)
Died in location of choice 9.67 (2.57 – 37.0)
Caregiver rated care as
excellent or very good 5.65 (2.61 – 10.34)
Pain at moderate level or higher 0.58 (0.22 – 1.54)
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Hospices Impact on Caregiver Health
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Case AF Continued…
• Daughter elects home hospice care • Goal to keep mom out of hospital and free from
discomfort • Discussed uncertainty around prognosis but likely
less than 6 months • Ongoing decline despite outstanding care from
daughter and support hospice • Two weeks later starts to actively die • Continuous care initiated and peacefully passes
several days later at home