Dementia Near the End of Life

Dementia Near
the End of Life
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Healthcare Corporation to be confidential.

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Goal
Describe and document the factors that qualify
dementia patients as hospice-eligible.

By the end of this presentation, you should be
able to:
• Define the most common etiologies of dementia
• Describe the complications that contribute to the
underlying cause of death for patients with dementia
• Describe the differences between Alzheimer’s
disease and other forms of dementia
• Identify the value of advance care planning
(ACP) and how to bill for it
Objectives

Changes in Death Rates for Major Diseases
114.2
13
214.9
21.4
130.5
137.1
139.7
148
1149.1
1163.6
1723.6
14
12.9
14.3
21.5
31
37.6
40.9
49.4
152.5
165
731.9
0 100 200 300 400 500 600 700 800
Suicide
Kidney disease
Influenza and pneumonia
Diabetes
Alzheimer disease
Stroke
Chronic lower repiratory diseases
Unintentional injuries
Cancer
Heart Disease
All causes
Deaths per 100,000 U.S. standard population
2017 2018
1
Statistically significant decrease in age-adjusted death rate from 2017 to 2018 (p < 0.05).
2Statistically significant increase in age-adjusted death rate from 2017 to 2018 (p < 0.05).
Xu, J., et al. (2020) Mortality in the United States, 2018. NCHS Data Brief, no 355. Hyattsville, MD: National Center for Health Statistics. Retrieved from: https://www.cdc.gov/nchs/data/databriefs/db355-h.pdf

2020 US estimate: 5.8 million currently
living with Alzheimer’s
• 3.6 million women, 2.2 million men
Alzheimer’s cases projected for 2050:
13.8 million
• Between 2000-2018, Alzheimer’s-related
deaths increased 146%
• Someone new develops dementia every
65 seconds in the US
Background: Dementia Epidemiology
Alzheimer's Association. (2020). 2020 Alzheimer’s Disease Facts and Figures. Retrieved from https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

• One million people with advanced dementia lack meaningful
communication and are functionally dependent
• 1 in 3 seniors dies with Alzheimer’s or another dementia
• Diagnosis of dementia cuts one’s life expectancy in half
• Dementia is the sixth-leading cause of death in persons
over the age of 65
• 2/3 of dementia patients are admitted to a nursing
home (NH) near end of life
– 67% of all dementia deaths occur in a NH
• More than 500,000 dementia deaths a year in the
US are attributed to dementia
Background: Dementia Near the End of Life
Hebert, L., et al. (2003). Alzheimer Disease in the US Population: Prevalence Estimates Using the 2000 Census. Archives of Neurology, 60(8), 1119-1122.
Xu, J., et al. (2020) Mortality in the United States, 2018. NCHS Data Brief, no 355. Hyattsville, MD: National Center for Health Statistics. Retrieved from: https://www.cdc.gov/nchs/data/databriefs/db355-h.pdf

Dementia Trajectory
ADL
Dependency
High
Slow Decline Over Time
Low
ADL Dependency and Disease-Related Complications
Disease-related
complications include,
but are not limited to:
• UTI
• Sepsis
• Febrile episode
• Delirium
• Pneumonia
• Hip fracture
• Difficulty eating or
dysphagia
• Dehydration
• Feeding tube (decision)
Disease-related
complication;
dependence in
5/6 ADLs
Death
Disease-related
complication;
dependence in
2/6 ADLs
Disease-related
complication;
dependence in
1/6 ADLs
Hospice-Eligible
• Dependence in 3/6 ADLs (bathing,
dressing, feeding, continence,
ambulation, transferring)
• Disease-related complication
within last 6 months

Number of Hospice Decedents by Principal Diagnosis for 2017 and 2018
National Hospice and Palliative Care Organization. (2020). NHPCO Facts and Figures: Hospice Care in America.
Hospice Use by Primary Diagnosis
2018
Cancer
Circulatory/Heart
Dementia
Other
Respiratory
Stroke
Chronic Kidney Disease
336,307
196,971
177,490
166,848
124,407
107,439
25,221
2017
332,718
194,512
172,643
153,963
122,004
103,684
24,953
15.6% 15.6%

Alzheimer’s Association. Differentiating Dementias. In Brief for Healthcare Professionals. Issue 7. Retrieved from https://www.alz.org/media/Documents/inbrief-differentiating-dementias.pdf
Common Forms of Dementia

Alzheimer’s disease
• Amyloid plaques and
neurofibrillary tangles
Mixed: cerebral
atherosclerosis and
Alzheimer’s disease
• Combination of Alzheimer’s
disease and cerebral
atherosclerosis (vascular)
Lewy body dementia
• Alpha-synuclein protein
Cerebral atherosclerosis
• Vascular dementia, cortical
infarcts, subcortical
infarcts, and leukoaraiosis
Frontotemporal dementia
• Tau protein
Pathophysiologies of Dementia
Alzheimer’s Association. Differentiating Dementias. In Brief for Healthcare Professionals. Issue 7. Retrieved from https://www.alz.org/media/Documents/inbrief-differentiating-dementias.pdf

Neuritic plaque
Neurofibrillary tangle
Protein Deposition in Alzheimer’s Disease

• Key factors increase the risk of
death after a dementia diagnosis.
They include:
– Worse cognition
– Male gender
– Higher number of medications
– Institutionalization
– Age
Adjusted risk of morality is lowest
in patients with Alzheimer’s and
highest in those with
frontotemporal dementia
Dementia Mortality by Diagnosis
Garcia-Ptacek, S., et al. (2014). Mortality Risk After Dementia Diagnosis by Dementia Type and Underlying Factors:
a Cohort of 15,209 Patients Based on the Swedish Dementia Registry. Journal of Alzheimer's Disease, 41(2), 467-477.

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 and/or trauma Immobility/Atrophy
Osteoporosis
Hip fracture
Other fracture
Vascular disease Inflammation
Amyloid deposition
Seizure
Stroke
Dementia as the Cause of Death

Hospice Patient
• More likely to die at home (76% vs. 38%)
• Less likely to die in the hospital (7% vs. 45%)
• Improved pain and symptom management
• Fewer end-of-life transitions
Caregiver
• Increased satisfaction with care
• Decreased burden
• Decreased anxiety and depression
• Improved overall health
Hospice and Dementia
Gozalo, P., & Miller, S. (2007). Hospice Enrollment and Evaluation of its Causal Effect on Hospitalization of Dying Nursing Home Patients. Health Services Research, 42(2), 587-610.
Casarett, D., et al. (2005). Improving the Use of Hospice Services in Nursing Homes: A Randomized Controlled Trial. JAMA, 294(2), 211-217.
Shega, J., et al. (2008). Patients Dying with Dementia: Experience at the End of Life and Impact of Hospice Care. Journal of Pain and Symptom Management, 35(5), 499-507.
Sternberg, S., et al. (2019). Home Hospice for Older People with Advanced Dementia: a Pilot Project. Israel Journal of Health Policy Research, 8(1), 42.

Hospice Care’s Impact on Caregiver Health
Irwin, S., et al. (2013). Association Between Hospice Care and Psychological Outcomes in Alzheimer’s Spousal Caregivers. Journal of Palliative Medicine, 16(11), 1450-1454.

A 2019 study involving caregivers of older patients with Alzheimer’s
found clear benefits from physical, emotional, and spiritual
hospice care:
• Decreased caregiver burden, from 12.1 to 1.4, with lower
scores representing less burden
• Improved symptom burden (38.3 to 33.8)
• Increased satisfaction with care, fewer medications
prescribed, and prevented hospitalizations
• Caregivers reported "that they felt more comfortable caring
for their loved one at home, suffering had been decreased, and
that they learned more about the trajectory of dementia.”
Hospice Care Reduces Caregiver Burdens
Sternberg, S., et al. (2019). Home Hospice for Older People with Advanced Dementia: a Pilot Project. Israel Journal of Health Policy Research, 8(1), 42.

Reisberg, B. (1988). Functional Assessment Staging (FAST). Psychopharmacology Bulletin, 24(4), 653-659.
FAST Scale (Functional Assessment Staging)
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
Alzheimer’s Progression: Function
7. A. Speaking ability limited to five
words or less
B. All intelligible vocabulary lost
C. Loss of ambulation
D. Inability to sit
E. Inability to smile
F. Inability to hold head up

Hospice Eligibility Reference Guidelines: Alzheimer’s Disease
Dementia of sufficient severity to limit activity FAST 7a
Centers for Medicare & Medicaid Services. Local Coverage Determination (LCD): Hospice Alzheimer's Disease & Related Disorders (L34567).
Retrieved from https://www.cms.gov/medicare-coverage-database/details/lcd-details.aspx?LCDId=34567
Significant Comorbidity
• CHF
• COPD
• CAD
• Diabetes
Clinical Complications
• Pneumonia
• Pyelonephritis/UTI
• Sepsis
• Febrile episode
• Difficult eating
or dysphagia
• Delirium
• Poor nutritional status
• Dehydration
• Pressure sores
• Hip fracture
• Recurrent hospitalizations
or ED visits

Dementia Types
• Alzheimer’s
• Multi-infarct
• Lewy body
• Frontotemporal dementia
• Parkinson’s-related
• Head trauma/CTE
• Alcohol
Dementia Diagnoses
Most dementia diagnoses stem from a combination of pathological processes
Medical Conditions
• Delirium
• Liver disease
• Renal failure
• Depression
• Sleep apnea
• Polypharmacy/anticholinergic
Alzheimer's Association. (2019). 2019 Alzheimer’s Disease Facts and Figures. Alzheimer's & Dementia, 15(3), 321-387.

Functional Disability–Progressive
• 3/6 activities of daily living (ADL) dependency
Retreived from https://www.cms.gov/medicare-coverage-database/details/lcd-details.aspx?LCDId=34567
Considerations for Hospice in Dementia
Significant Comorbidity
• CHF
• COPD
• CAD
• Diabetes
Clinical Complications
• Pneumonia
• Pyelonephritis/UTI
• Sepsis
• Febrile episode
• Difficulty eating
or dysphagia
• Delirium
• Poor nutritional status
• Dehydration
• Pressure sores
• Hip fracture
• Recurrent hospitalizations
or ED visits

87-year-old female, with progressive mixed dementia, secondary
to vascular dementia and Alzheimer’s disease, diagnosed four
years ago. Now presents to the ED with a change in mental
status and low-grade fevers to 100 degrees. No infection
was identified, but RA was dehydrated
Past Medical History: HTN, normal EF HF, atrial fibrillation,
osteopenia, hospitalized four months ago for pneumonia
Medications: diltiazem, lisinopril, aspirin, calcium, vitamin D,
acetaminophen as needed
Social History: Daughter is RA’s primary caretaker with
support from church. RA is homebound
Case of RA

• Get stronger
• Better nutritional status
• Less confused and more awake
• Avoid burdensome interventions
• Return home
• Live as long as possible
Goals-of-Care Conversation
Allen, L., et al. (2012). Decision Making in Advanced Heart Failure: a Scientific Statement from the American Heart Association. Circulation, 125(15), 1928-1952.
Survival
Costs/Burden
Direct Medical Costs
Indirect Costs
Lost Opportunities
Caregiver Burden
Outcomes
Relevant to
an Individual
Patient
Quality of Life
Symptoms
Physical Function
Mental
Emotional
Social

Nutrition: 7-lb. weight loss over 6 months (7%), BMI 22;
increased dysphagia on pureed diet
Function: 3/6 ADL-dependence (bathing, continence, and transferring)
with recent decline; requires assistance with dressing and ambulation,
eats independently with set-up; PPS 40; homebound
Cognition: Increased sleepiness with hospitalization; oriented
to person and recognizes family
Healthcare Utilization: Second hospital admission in last 4
months, previous for pneumonia
Symptoms: Sleepier (delirium), some pain; spends more time
in bed
Case of RA (cont.)

Evidence Supports the Benefits
of Hospice for Patients With
Dementia and Their Caregivers2
Patient:
• 50% reduction in
hospitalizations
• More likely to die at home
• Greater satisfaction with care
• Better pain and symptom
management
• Fewer care transitions
Caregiver:
• Less depression and anxiety
• Better health
1Mitchell, S., et al. (2009). The Clinical Course of Advanced Dementia. New England Journal of Medicine, 361(16), 1529-1538.
2Shega, J., et al. (2008). Patients Dying with Dementia: Experience at the End of Life and Impact of Hospice Care. Journal of Pain and Symptom Management, 35(5), 499-507.
Prognostication Factors and Hospice Eligibility
Overall mortality and the cumulative incidences of pneumonia, febrile
episodes, and eating problems among nursing home residents with
advanced dementia (3/6 ADLs).1
Clinical
Complication
6-Month
Mortality
Eating problem 39%
Febrile 45%
Pneumonia 47%
Death 25%
Median survival was 478 days;
55% died within 18 months.

Cabre, M., et al. (2010). Prevalence and Prognostic Implications of Dysphagia in Elderly Patients with Pneumonia. Age and Aging, 39(1), 39-45.
Dysphagia and Survival
Mortality with dysphagia
30-day: 22.9%
1-year: 55.4%

Masterson Creber, R., et al. (2019). Use of the Palliative Performance Scale to Estimate Survival Among Hospice Patients With Heart Failure. ESC Heart Failure, 6(2), 371-378.
Survival by Palliative Performance Score (PPS) at
Acute-Care Hospital
PPS
Score
Ambulation
Activity and
Evidence
of Disease
Self-Care Intake
Conscious
Level
60 Reduced
Unable to do
hobby/housework
Significant disease
Occasional
assistance
necessary
Normal
or
reduced
Full or
confusion
50 Mainly sit/lie
Unable to do
any housework
Extensive disease
Considerable
assistance
required
40 Mainly in bed
Unable to do
most activities
Extensive disease
Mainly
assistance
Full or
drowsy +/-
confusion
30
Totally
bedbound
Unable to do
any activities
Extensive disease
Requires total
care
• Patients with a PPS score of ≤ 50 are generally hospice-eligible;
some patients with a higher PPS may also be eligible

Boyd, C., et al. (2008). Recovery of Activities of Daily Living in Older Adults After Hospitalization for Acute Medical Illness. Journal of the American Geriatrics Society, 56(12), 2171-2179.
Hospitalization, ADL Change, and Death
83.3
33.5
80
37.4
73.3
36.5
67.0
30.1
13.5
53
12.9
40.2
14.9
32.4
15.2
28.6
2.7
13.5
7.1
22.4
11.4
31.2
17.8
41.3
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Discharged at
baseline
function
Discharged with
a new or
additonal
disability in ADL
Discharged at
baseline
function
Discharged with
a new or
additonal
disability in ADL
Discharged at
baseline
function
Discharged with
a new or
additonal
disability in ADL
Discharged at
baseline
function
Discharged with
a new or
additonal
disability in ADL
Baseline Decline Death
3-Month Outcome 6-Month Outcome 12-Month Outcome
1-Month Outcome
41% of patients who had functional decline during hospitalization died within the next year.

Gill, T., et al. (2019). Days Spent at Home in the Last Six Months of Life Among Community-Living Older Persons. The American Journal of Medicine, 132(2), 234-239.
Taking to Bed Supports Hospice Eligibility
Bed rest increases as death approaches:
24 months before death: 12.4%
5 months before death: 19.0%
1 month before death: 51.6%
The number of days of bed rest increases
as death approaches:
24 months before death: 3 days of bed rest
4 months before death: 7 days of bed rest
• Almost 90% of patients
take to the bed prior to
death, with a similar
increase in the number
of days in bed
• Increases in the last 3-5
months of life suggest
that the burden of bed
rest may be an indicator
that death is approaching
• Hospice should be
considered:
– If patients are spending
50% or more of their
time in bed
– If ordering a hospital
bed is being discussed

Pneumonia
Six-month mortality
• 53% Impaired
• 13% Intact
Survival After Acute Illness: Severe Dementia
vs. Cognitively Intact
Morrison, R., & Siu, A., (2000). Survival in End-Stage Dementia Following Acute Illness. JAMA, 284(1), 47-52.
Hip Fracture
Six-month mortality
• 55% Impaired
• 12% Intact

• Adjusted survival over 180 days
for those with two or more
complications that define
a burdensome transition was
significantly lower when compared
with overall survival (476 days):
– Pneumonia, 95 days
– UTI, 146 days
– Dehydration or
malnutrition, 111 days
– Septicemia, 89 days
• Those who did not survive
30 days beyond the initial
event were excluded
Teno, J., et al. (2013). Survival After Multiple Hospitalizations for Infections and Dehydration in Nursing Home Residents with Advanced Cognitive Impairment. JAMA, 310(3), 319-320.
Two or More Complications Among NH Residents
With Dementia in One Year

Inouye, S., et al. (1990). Clarifying Confusion: the Confusion Assessment Method: a New Method for Detection of Delirium. Annals of Internal Medicine, 113(12), 941-948.
Delirium: Under-Detected
Acute Onset and Fluctuating
Course + Inattention,
plus either
Altered LOC
Disorganized
Thinking
DELIRIUM

Zipprich, H., et al. (2020). Outcome of Older Patients with Acute Neuropsychological Symptoms Not Fulfilling Criteria of Delirium. Journal of the American Geriatrics Society, 68:1469-1475.
Declining Mental Status Increases Risk of Mortality
Changes in mental status that
may prompt an evaluation
of delirium
Confusion Assessment
Method (CAM)
Features of Delirium:
1. Acute onset of changes
or fluctuation in mental status
2. Inattention
3. Disorganized thinking
4. Altered level of consciousness
• Delirium is diagnosed when
features 1 and 2, plus either
feature 3 or 4, are present
• Exhibiting only 2 of the 4 CAM
features indicates symptoms
of delirium

• IV fluids initiated and oral
intake improves over 2 days
• Physical therapy consult
for deconditioning
– RA is now dependent
with dressing, maximal
assistance with ambulation
• Speech therapy consult
for dysphagia
– Continues pureed diet
• Cognition improves somewhat
as RA is more awake, but
sleeping more than usual and
exhibiting poor attention
• Daughter states that mom has
always been more comfortable
at home
Case of RA (cont.): Hospital Course

Skilled Nursing Facility
• 24-hour care provided,
PT/OT/speech
Home Health
• Nursing support at home,
usually twice a week;
PT/OT/speech
Hospice
• Nurse, social worker,
chaplain, aide, volunteer
– Palliative therapy services:
PT, OT, speech, nutrition
No services
at all
Care Transition Options

Restorative Potential and Goals of Care (GOC)
Poor Restorative
Potential
Need for GOC
Discussion
Pressure ulcers
Consider age, motivation,
ability to learn/participate
Tolerate < 20 minutes
of therapy a day,
6-7 days/week
Advanced age,
multiple comorbidities,
progressive dementia
Ongoing decline
anticipated and
unavoidable
Ultimate discharge
plan to LTC or
24-hour care
Significant functional
debility, low likelihood of
return to independence
Custodial needs >
skilled needs

• Participates in OT/PT/Speech
– Not much progress as still
dependent in dressing; now
dependent in 4/6 ADLs, and
ambulation requires assistance
– Ongoing mild dysphagia and
on pureed diet
• Delirium continues to improve
but attention still not back
to baseline
• GOC/advance care planning
conversation held, RA remains
full code
• Discharge planning initiated and
daughter elects home health
over hospice (SNF discharge
planner convinces her that
mom should continue to
receive therapy services)
Case of RA (cont.): Skilled Facility Course

0
10
20
30
40
50
1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007
Adjusted
Prevalence
of
SNF
Admission
(%)
Year of Death
65 - 74yr 75 - 84yr ≥ 85yr
Aragon, K., et al. (2012). Use of the Medicare Posthospitalization Skilled Nursing Benefit in the Last 6 Months of Life. Archives of Internal Medicine, 172(20), 1573-1579.
SNF Use in Older Adults During the Last 6 Months of Life
Only 1.5% enrolled in hospice at day of discharge from SNF

• Missed opportunity to revisit goals of care and introduce hospice services
Case of RA: Pathway #1
Week 2:
• Episode of coughing with eating
• Spikes fever, becomes lethargic, and
experiences shortness of breath
• Transferred to the ED, admitted to
ICU, and placed on ventilator for airway
protection and respiratory distress
Week 1: Transitions from rehab to home
with home health services
• Continues functional decline, increasing
weakness, RA is in chair/bed 50%
of the day. Remains dependent in 4/6
ADLs and requires significant assistance
with ambulation
• Ongoing dysphagia and weight loss but
tolerating pureed diet (consuming 50%-70%)
• Not responding to restorative
OT/PT/speech plan
• RA’s attention still not “back to normal”
with periods of increased sleepiness

Teno, J., et al. (2016). Association of Increasing Use of Mechanical Ventilation Among Nursing Home Residents with
Advanced Dementia and Intensive Care Unit Beds. JAMA Internal Medicine, 176(12), 1809-1816.
Mechanical Ventilation Use in Advanced Dementia
and 1-Year Mortality

• Remains on ventilator for
6 days while being treated
for pneumonia and was
not able to be weaned off
• Hypoactive delirium
recurs and persists
• NG feedings initiated but
RA develops Stage III
pressure sore on coccyx
• Now dependent in 6/6 ADLs
• Daughter wants to focus on
comfort for RA
• Decision for comfort care
– DNR approved by daughter
– Patient is extubated in
ICU and dies 30 minutes later
• Family receives no bereavement
post-death

Week 1: Transitions from rehab to home
with home health (HH) services
• Continues functional decline, increasing
weakness, RA noted in chair/bed 50%
of the day. Remains dependent in 4/6
ADLs and requires significant assistance
with ambulation
• Not responding to restorative
OT/PT/speech plan
• Ongoing dysphagia and weight loss,
but tolerates pureed diet (consuming
50%-75%)
• RA’s attention still not “back to normal”
with periods of increased sleepiness
• Ongoing functional decline, not
responsive to restorative PT
therapies. HH RN contacts
RA’s PCP
• PCP orders hospice consult to
facilitate a GOC/ACP conversation
• Hospice GOC/ACP identifies that
daughter wants to keep RA at
home and that comfort is imperative
• Daughter requests PT evaluation.
Hospice provides PT for comfort and
safety, and speech evaluation
for dysphagia

• Following GOC meeting, RA’s PCP is
notified, hospice referral is made, and
home health agency is informed
• RA is admitted to hospice with PT
for comfort and safety. RN visits
weekly, and hospice aide visits 3x
per week; chaplain, social worker, and
music therapist are included in plan
of care
– Education regarding PT for
caregiver to assist RA
• RA is notably less agitated over the
next 3 weeks and daughter is much
more comfortable in providing care
to her mother
• Over the next month, RA begins to
have more difficulty eating despite
careful feeding techniques. RA
becomes completely bedbound
with significant weight loss.
• Hospice obtains a nutritionist consult
for safe feeding techniques with
HH agency
• 12 weeks after hospice admission,
RA develops fever, shortness of
breath, and agitation, likely
related to aspiration

• Daughter calls hospice’s on-call
services, and RN is dispatched
• RN and on-call hospice physician
order continuous home care (CHC)
– Physician conducts telehealth visit.
Option discussed for an antibiotic
trial and explains RA is likely
actively dying
– Daughter opts to forgo treatment
with antibiotics and focus on comfort
– Opioids for pain and shortness of
breath, risperidone for agitation, and
oxygen are ordered for RA
• The next day, the hospice
physician visits RA, who now
has respiratory secretions.
Physician modifies RA’s
medications, explains these
changes, and prognosis
with daughter
• By the next morning, RA is
comfortable and dies 6 hours
later with daughter at bedside
• Daughter receives 13 months
of bereavement support from
the hospice team

• Pattern recognition is important
as RA endured multiple
burdensome transitions
• No clear ACP conversation
that addressed key factors and
preferences in Pathway #1
– Natural history of dementia,
including clinical complications
– Understood relationship between
clinical complications and
poor prognosis
• Caregiver experienced substantial
distress after RA’s death due to
the late referral to hospice
• Pathway #2 highlights ability of
hospice to support the daughter’s
goal for therapy services
– Distress was prevented and
patient’s wish to be home was
honored with an earlier, timelier
referral to hospice
Case of RA: Clinical Indicators of Poor Prognosis

• Functional Disability–Progressive
– 3/6 ADL dependency
Retreived from https://www.cms.gov/medicare-coverage-database/details/lcd-details.aspx?LCDId=34567
Considerations for Hospice in Dementia
• Clinical Complications
– Pneumonia
– Pyelonephritis/UTI
– Sepsis
– Febrile episode
– Difficulty eating or dysphagia
– Poor nutritional status
– Feeding tube (decision)
– Pressure sores
– Hip fracture
– Delirium at time of
hospital discharge
– Recurrent hospitalizations for
disease-related complications

Wang, S., et al. (2017). End-of-life Care Transition Patterns of Medicare Beneficiaries. Journal of the American Geriatrics Society, 65(7), 1406-1413.
Transitions: Last 6 Months of Life
49
• Over 80% of Medicare
beneficiaries aged ≥ 66
experienced at least one
healthcare transition within
final 6 months of life
• About 33% had four or
more transitions within
final 6 months
• About 20% of patients
died without any transition,
including to home
hospice care
• Hospice can reduce
transitions in accordance
with patients’ care goals

• Basis for high-quality, person-centered care
• Opportunity to discuss wishes/preferences and
care choices before crises arise
• Serves as an open and continuous
dialogue to match preferences
with care received
– Code status/power of attorney
for healthcare
– Role of hospice vs. emergency
department/hospital
• In a retrospective outcomes analysis
of 1,818 deceased patients with
treatment-limiting POLSTs:
– Treatment-limiting POLSTs were
associated with significantly lower
rates of ICU admission
– 38% of patients with treatment-limiting
POLSTs received intensive care
that was potentially discordant with
their POLST
• Hospice acts as a safeguard to honor
advance directives/ACP and ensure
goal-concordant care
Value of Advance Care Planning
Lee, R., et al. (2020). Association of Physician Orders for Life-Sustaining Treatment with ICU Admission Among Patients Hospitalized Near the End of Life. JAMA, 323(10):950-960.
50

• Eligible providers
– Physician
– Nurse practitioner and physician assistant
• Medicare Part A and Part B benefit
Cover Overview
Advance Care Planning Codes
CPT Code Description
99497
Advance care planning including the explanation and discussion of advance directives such as standard forms
(with completion of such forms, when performed), by the physician or other qualified health care professional;
first 30 minutes, face-to-face with the patient, family member(s), and/or surrogate.
99498
Advance care planning including the explanation and discussion of advance directives such as standard forms
(with completion of such forms, when performed), by the physicians or other qualified health care professional.

Mitchell, S., et al. (2009). The Clinical Course of Advanced Dementia. New England Journal of Medicine, 361(16), 1529-1538.
Proxy Appreciation of Disease Trajectory Impacts Care
Proxy’s Understanding of Prognosis
and Expected Complications
Residents Who Died During
18-Mo Study Period (N = 177)
Residents Who Underwent Any
Burdensome Intervention During
Last 3 Mo of Life
Odds Ratio for Burdensome Intervention
During Last 3 Mo of Life (95% CI)
no. (%) no./total no. (%) Unadjusted Adjusted
Believed resident had < 6 months to live
Yes 46 (26.0) 14/46 (30.4) 0.45 (0.19–1.04) 0.34 (0.14–0.81)
No 131 (74.0) 58/131 (44.3) Reference category Reference category
Understood expected clinical complications
Yes 146 (82.5) 52/146 (35.6) 0.30 (0.15–0.62) 0.33 (0.17–0.63)
No 31 (17.5) 20/31 (64.5) Reference category Reference category
Believed resident had < 6 months to live and
understood expected clinical complications
37 (20.9) 10/37 (27.0) 0.13 (0.04–0.44) 0.12 (0.04–0.37)
Either believed resident had < 6 months to live
or understood expected clinical complications,
but not both
118 (66.7) 46/118 (39.0) 0.23 (0.10–0.57) 0.25 (0.13–0.49)
Neither believed resident had < 6 months to live
nor understood expected clinical complications
22 (12.4) 16/22 (72.7) Reference category Reference category

Comprehensive Services
Service VITAS Home Health
Palliative Care
Physician Support
Yes No
Nurse Frequency
of Visits
Unlimited based
on patient need
Diagnosis-
driven
RT/PT/OT/Speech Yes Yes
Equipment Included Yes No
After Hours Staff
Availability
Yes No
Levels of Care 4 Levels Home
Care Plan Review Weekly Variable
Targeted Disease-
Specific Program
Yes Variable
Bereavement Support Yes No
Service VITAS Home Health
Eligibility • Physician-certified prognosis
< 6 months, if disease runs
normal course
• Hospice prognosis must be
re-certified periodically
• Patient agrees to palliative, not curative,
plan of care
• Plan of care determined by initial and
ongoing doctor/team assessment,
combined with patient/family wishes
• Not required to be homebound
• Must require skilled level of care and
a specific plan of care confirming
need, frequency, and duration
of visits
• Skilled nursing care need must be
re-certified periodically
• As skilled needs change, approved
services change
• Must be homebound, except for
short durations
Length of Care Unlimited number of visits based on
patient need, if prognosis remains 6
months or less
• Limited number of visits
• Must document progress within the
length of service allowed
Medications
Included
VITAS provides Rx and OTC medications
related to hospice diagnosis at no charge
to the patient
Medications are not covered under the
Medicare Home Health Benefit

Download the VITAS app now.
Explore interactive assessment tools on the VITAS app
PPS and BMI resources provide eligibility guidance
at your fingertips.
• Disease-specific Palliative Performance Scale (PPS):
– Assess activities of daily living on a sliding scale
– Offers immediate insight into hospice eligibility
• Body-Mass Index (BMI) tool
• View and share disease-specific hospice
eligibility guidelines
Take the Guesswork Out of
Hospice Eligibility

Allen, L., et al. (2012). Decision Making in Advanced Heart Failure: a Scientific Statement from the American Heart Association.
Circulation, 125(15), 1928-1952.
Alzheimer's Association. (2019). 2019 Alzheimer’s Disease Facts and Figures. Alzheimer's & Dementia, 15(3), 321-387.
Alzheimer’s Association. Differentiating Dementias. In Brief for Healthcare Professionals. Issue 7. Accessed February 27, 2020:
https://www.alz.org/media/Documents/inbrief-differentiating-dementias.pdf
Aragon, K., et al. (2011, May). Medicare Post-Hospitalization Skilled Nursing Benefit in the Last Six Months of Life.
Journal of General Internal Medicine (26), 181-182.
Boyd, C., et al. (2008). Recovery of Activities of Daily Living in Older Adults After Hospitalization for Acute Medical Illness.
Journal of the American Geriatrics Society, 56(12), 2171-2179.
Cabre, M., et al. (2010). Prevalence and Prognostic Implications of Dysphagia in Elderly Patients with Pneumonia. Age and Ageing,
39(1), 39-45.
Casarett, D., et al. (2005). Improving the Use of Hospice Services in Nursing Homes: A Randomized Controlled Trial. JAMA,
294(2), 211-217.
Centers for Medicare & Medicaid Services. Local Coverage Determination (LCD): Hospice Alzheimer's Disease & Related
Disorders (L34567). Accessed February 27, 2020: https://www.cms.gov/medicare-coverage-database/details/lcd-details.aspx?
LCDId=34567
Garcia-Ptacek, S., et al. (2014). Mortality Risk After Dementia Diagnosis by Dementia Type and Underlying Factors: a Cohort
of 15,209 Patients Based on the Swedish Dementia Registry. Journal of Alzheimer's Disease, 41(2), 467-477.
References

Gill, T., et al. (2019). Days Spent at Home in the Last Six Months of Life Among Community-Living Older Persons.
The American Journal of Medicine, 132(2), 234-239.
Gozalo, P., & Miller, S. (2007). Hospice Enrollment and Evaluation of its Causal Effect on Hospitalization of Dying Nursing
Home Patients. Health Services Research, 42(2), 587-610.
Hebert, L., et al. & Evans, D. A. (2003). Alzheimer Disease in the US Population: Prevalence Estimates Using the 2000 Census.
Archives of Neurology, 60(8), 1119-1122.
Inouye, S., et al. (1990). Clarifying Confusion: the Confusion Assessment Method: a New Method for Detection of Delirium.
Annals of Internal Medicine, 113(12), 941-948.
Irwin, S., et al. (2013). Association Between Hospice Care and Psychological Outcomes in Alzheimer’s Spousal Caregivers.
Journal of Palliative Medicine, 16(11), 1450-1454.
Lee, R., et al. (2020). Association of Physician Orders for Life-Sustaining Treatment with ICU Admission Among Patients
Hospitalized Near the End of Life. JAMA.
Masterson Creber, R., et al. (2019). Use of the Palliative Performance Scale to Estimate Survival Among Hospice Patients
With Heart Failure. ESC Heart Failure, 6(2), 371-378.
McCusker, J., et al. (2002). Delirium Predicts 12-month mortality. Archives of Internal Medicine, 162(4), 457-463.
Mitchell, S., et al. (2009). The Clinical Course of Advanced Dementia. New England Journal of Medicine, 361(16), 1529-1538.
Xu, J., et al. (2020) Mortality in the United States, 2018. NCHS Data Brief, no 355. Hyattsville, MD: National Center for Health
Statistics. Retrieved from: https://www.cdc.gov/nchs/data/databriefs/db355-h.pdf
References

Morrison, R., & Siu, A. (2000). Survival in End-Stage Dementia Following Acute Illness. JAMA, 284(1), 47-52.
National Hospice & Palliative Care Organization. Facts & Figures. Revised 2020. Accessed February 8, 2021:
https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2020-edition.pdf
National Vital Statistics Report, National Center for Health Statistics. Deaths: Leading Causes for 2017. (2019).
Retrieved from: https://www.cdc.gov/nchs/data/nvsr/nvsr68/nvsr68_06-508.pdf
Reisberg, B. (1988). Functional Assessment Staging (FAST). Psychopharmacology Bulletin, 24(4), 653-659.
Shega, J., et al. (2008). Patients Dying with Dementia: Experience at the End of Life and Impact of Hospice Care.
Journal of Pain and Symptom Management, 35(5), 499-507.
Sternberg, S., et al. (2019). Home Hospice for Older People with Advanced Dementia: a Pilot Project. Israel Journal
of Health Policy Research, 8(1), 42.
Teno, J., et al. (2016). Association of Increasing Use of Mechanical Ventilation Among Nursing Home Residents with
Advanced Dementia and Intensive Care Unit Beds. JAMA Internal Medicine, 176(12), 1809-1816.
Wang, S., et al. (2017). End-of-life Care Transition Patterns of Medicare Beneficiaries. Journal of the American
Geriatrics Society, 65(7), 1406-1413.
Xu, J., et al. (2018). Deaths: final data for 2016. National Vital Statistics Report, 67(5): 1-76. Available from:
https://www.cdc.gov/nchs/data/nvsr/nvsr67/nvsr67_05.pdf
References

This document contains confidential and proprietary business information
and may not be further distributed in any way, including but not limited to
email. This presentation is designed for clinicians. While it cannot replace
professional clinical judgment, it is intended to guide clinicians and
healthcare professionals in establishing hospice eligibility for patients
with advanced Alzheimer's and dementia. It is provided for general
educational and informational purposes only, without a guarantee of the
correctness or completeness of the material presented.

Dementia Near the End of Life

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