Ethical Challenges in Dementia in Long Term Care

Ethical Challenges in Dementia in Long Term Care

Joseph W. Shega, MD

Regional Medical Director

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

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,

http://www.alz.org/news_and_events_rates_rise.asp

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

Percentage Change in Select Causes of Death 2000 to 2010

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

Dementia Mortality by Diagnosis

(Garcia-Ptacek, et al, 2014)

7

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

Symptoms Terminal Dementia

Mitchell SL et al. N Engl J Med 2009;361:1529-1538

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

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

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

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

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

Death Trajectory Typical in Chronic Illness

Median survival was 478 days, 24.7% within 6 mos

54.8% died, 93.8% in NH

6 mo mortality 38.6%



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

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

Hospitalization, ADL Change, & Death

(Boyd, et al, 2008)

18

Hospital Delirium & Subsequent

Mortality

12-month

mortality

Delirium 41.6%

Non-delirium

14.4%

(van Zyk, et al, 2003)

19

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

Proxies’ belief and knowledge were important to reduce burdens

Case of AF Cont…

• Care team discussed post-acute care options

– Skilled facility

– Home Health

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

Re-Hospitalization Rates from Skilled Facilities Nursing Facility

Reason for Hospital Admission from Nursing Home

Krueger K et al. Nursing Research and Proactive 2011

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

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

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

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

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

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









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

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

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.









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%

Survival Between Residents With and Without Feeding Tube

Mitchell SL et al, Arch Intern Med 1997









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

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









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

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

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

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

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

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

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

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

SNF Use Older Adults Last 6 months of life

Only 1.5% enrolled in hospice at discharge

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

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

What about hospice?

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

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

57

Where do patients spend their last days?

Medicare Hospice Utilization

NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA:

National Hospice and Palliative Care Organization, October, 2012.

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

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

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

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

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)

Hospices Impact on Caregiver Health

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

Documents

Ethical Challenges in Dementia in Long Term Care