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

End-of-life Issues in Dementia:Planning & Managing

Leslie Kernisan, MD MPHGeriatrician & 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 writing4. 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

http://www.prepareforyourcare.org/

http://www.theconversationproject.org/

https://fivewishesonline.agingwithdignity.org/

http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf



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

http://www.polst.org/


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

http://katybutler.com/site/

http://altarum.org/about/news-and-events/award-winning-handbook-for-mortals


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

http://www.prepareforyourcare.org/

http://www.theconversationproject.org/

https://fivewishesonline.agingwithdignity.org/



Thank you for your attention!

For more practical tips on better healthcare for aging adults, visit the

Geriatrics for Caregivers Blog

http://geriatricsforcaregivers.net/

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

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