How to Plan for End-of-Life Issues in Alzheimers & Dementia

End-of-life Issues in Dementia:
Planning & Managing
Leslie Kernisan, MD MPH
Geriatrician & Caregiver Educator
GeriatricsForCaregivers.net

Today’s Talk Will Cover
• Advance care planning (ACP) for end-of-life in
dementia, including Alzheimer’s
– What it means & how to approach
– Tools to help you plan
• Managing end-of-life (EOL) in dementia
– Common challenges & how to approach

Abbreviations Used in This Talk
• PWD: Person with dementia
• EOL: End of life
• ACP: Advance care planning
• AD: Advance directive
• DPOAH: Durable power of attorney for health
care
• POLST/MOLST: Physicians/Medical Orders for
Life-Sustaining Treatment

Background
• 5-7 million people w/ dementia in US
• Dementia is terminal
– People usually live w/dementia for years
– Many people with dementia (PWD) die of other
illnesses

Background
• Caregivers and DPOAHs usually make medical
decisions at end-of-life for PWD
– Lost thinking capacity or acute illness or both
• Advanced care planning often under-used

“Advance care planning is about
planning for the ‘what ifs’ that
may occur across the entire
lifespan.”
— Joanne Lynn, MD
http://www.cdc.gov/aging/pdf/advanced-care-planning-critical-issue-
brief.pdf

Advance Care Planning Involves:
• Learning what types of decisions often come
up if one is too sick to make decisions for
oneself
• Considering preferences for those situations
• Communicating preferences to one’s family &
doctors

Advance Care Planning Involves
(slide 2)
• Choosing a surrogate decision-maker
• Written documentation
 Advance directive, power of attorney for
healthcare, POLST/MOLST

Tips on Thinking of “End-of-Life”
• Consider planning for “last stages” rather than
last moments of life.
• Many people experience months or years of
declining health before dying.
• Recommended reading: “Knocking on
Heaven’s Door,” by Katy Butler

Benefits of Advance Care Planning
• Helps PWD get the preferred care:
– For those who prefer this: can increase chance of
dying at home, decrease hospitalizations at end of
life
• Reduces decision-making stress for surrogate
decision-maker
• Can reduce family conflicts over what should
be done

Challenges in Planning
• Reluctance of caregivers & person w dementia
• Can be hard to understand health conditions
and what to expect
• PWD may be too impaired to make decisions
– Can still consider preferences

4 steps for advance care planning
1. Understand health conditions and how they
are likely to progress
– Hope for best, prepare for likely crises/declines
2. Articulate values and preferences for future
care
– Includes designating a surrogate decision-maker
3. Document preferences in writing
4. Re-assess preferences and plans periodically

Step 1: Understanding Health
Conditions
• Understanding dementia is key:
– Research found that viewing videos of advanced
dementia changed people’s EOL care preferences
Volandes AE, et al. Video decision support tool for advance care planning in dementia:
randomised controlled trial. BMJ. 2009 May 28;338:b2159.

Understanding Health Conditions
(cont)
• Understanding other health issues is key!
– Ex: heart failure, heart disease, COPD, cancer
– Know which are likely to cause health crises

Understanding Medical “Big Picture”
• Tips for discussing the medical “big picture”
with a health provider:
– Schedule a visit specifically for this purpose
– Review status of major health issues; ask how
things might change over next few years
– “What health crises or declines might we expect
over the next few years?”

Example: Alzheimer’s & COPD
Mrs. A has been diagnosed with early
Alzheimer’s. Mrs. A also has advanced COPD,
uses home oxygen, & has been hospitalized
twice in the past year for difficulty breathing.
 When planning for end-of-life situations, Mrs.
A and her family should discuss her COPD
prognosis, along with her Alzheimer’s.

Step 2: Preferences & Values for
Future Care
• What does person with dementia value?
– What matters most in life?
– What makes life worth living? What sounds worse
than death?
– What would be an ideal last year? An ideal death?
– Feelings about life support? About being
hospitalized? About surgeries? About suffering?
– At what point, if any, should doctors stop trying to
extend life?

Tools to help consider preferences
• PrepareForYourCare.org
– Great easy-to-use online resource with videos,
creates an action plan.
• TheConversationProject.org
• Five Wishes
– Creates a living will valid in several states
• Alzheimer’s Association End-of-Life Decisions
Brochure

Tips to Remember
• You don’t have to sort out just what you’d
want for every – or any – future medical
decision.
– Just reflecting & talking to family helps!
• Assume that things can be changed later.
• Consider giving your surrogate guidelines &
flexibility, rather than detailed instructions.

Step 3: Document Preferences in
Writing
• Print or hand-write key points from the
process of reflecting & discussing
– This information can later help family members &
clinicians
• Complete a state-approved advance directive
– Review with primary care doctor or other clinician
if possible
– Consider appending key information regarding
preferences

Documenting Preferences (Cont)
• Consider POLST/MOLST (Physician/Medical
Orders for Life-Sustaining Care)
– Bright-colored paper, summarizes key preferences
re resuscitation & transfer to hospital
– Meant to guide clinicians during a medical
emergency
– Signed by physician & by patient/DPOAH

Preferences addressed in POLST
• POLST focuses on these key issues:
– If heart stopped & no breathing:
• Allow natural death or attempt CPR?
– If requires urgent medical treatment:
• Comfort measures only?
• Limited additional interventions? (IV antibiotics and fluids?
Hospitalization?)
• Full treatment (hospitalization including ICU care if needed?)
• Families may opt to revise POLST as dementia
progresses

Step 4: Reassess preferences & plans
periodically
• Preferences will change over time, as health
evolves.
• Consider reviewing advance care planning
– After new major diagnosis, such as cancer or
other life-limiting illness
– After major hospitalization
– After significant decline in health or abilities

Reassessing Preferences (cont)
• Benefits & burdens of certain medical
interventions change as dementia gets worse:
– Ex: hospitalization, surgery, invasive procedures
 can be risky/burdensome, often low chance of
benefit
• But medical care that improves comfort &
quality of life always important, often
becomes a higher priority as health declines.

Key Points on Advance Care Planning
• Most people w dementia will undergo years of
declining health
• Family conversation on preferences & goals
helps reduce later stress & anxiety
• Preferences & plans regarding care often
evolve over time

Managing End-of-Life in Dementia
• Common challenges:
– Long slow declines are common
– Can be hard to know when “the end is near”
– Daily care needs become so intensive that PWD
often placed in care home
– Pain and other discomforts (i.e. shortness of
breath) are common

In Very Advanced Dementia
• Person no longer walks or talks
• Person loses ability to smile
• Person doesn’t seem to recognize anyone or
anything
• In the very last stage:
– Person develops difficulty swallowing

When to Expect Death?
• Signs linked to ~50% chance of dying within 6
months:
– Multiple pneumonias or urinary tract infections
– Skin sores that won’t heal
– Weight loss
– Frequent or persisting fevers
– Difficulty swallowing
Mitchell SL et al. The Clinical Course of Advanced Dementia. N Engl J Med 2009; 361:1529-
1538

The Role of Caregivers
• Caregivers often advocate for the comfort &
needs of person with dementia
• Caregivers are often surrogate decision-
makers
• Many families don’t understand how people
with advanced dementia decline & die
– Better understanding linked to fewer
hospitalizations in last 18 months of life

The Role of Palliative Care
• Palliative Care:
– Care focused on symptoms and quality of life
– Providers have special training in communicating
with families and in addressing concerns
– Does not equal hospice, or “giving up” (but
families sometimes choose hospice if preferences
& situation are a good fit)
• All persons w dementia can benefit from
palliative approach, but may be hard to find.

Tips for Managing End-of-Life
• Educate yourself as to what to expect
• Consider palliative care consultation
– Can help maximize quality of life
– Can provide education and conversation about
what to expect, and options for care
• Consider revising care planning if multiple
hospitalizations, or other signs that death
likely within 6-12 months.

Resources
Recommended Reading:
–Knocking on Heaven’s Door, by Katy
Butler
–Handbook for Mortals, by Dr. Joanne
Lynn & Janice Lynch Schuster

Advance Care Planning Resources
• PrepareForYourCare.org
– Great easy-to-use online resource with videos,
creates an action plan.
• TheConversationProject.org
• Five Wishes
– Creates a living will valid in several states
• Alzheimer’s Association End-of-Life Decisions
Brochure

Thank you for your attention!
For more practical tips on better
healthcare for aging adults, visit the
Geriatrics for Caregivers Blog

How to Plan for End-of-Life Issues in Alzheimers & Dementia

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