Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.
End-of-life Issues in Dementia:
Planning & Managing
Leslie Kernisan, MD MPH
Geriatrician & Caregiver Educator
GeriatricsFo...
Today’s Talk Will Cover
• Advance care planning (ACP) for end-of-life in
dementia, including Alzheimer’s
– What it means &...
Abbreviations Used in This Talk
• PWD: Person with dementia
• EOL: End of life
• ACP: Advance care planning
• AD: Advance ...
Background
• 5-7 million people w/ dementia in US
• Dementia is terminal
– People usually live w/dementia for years
– Many...
Background
• Caregivers and DPOAHs usually make medical
decisions at end-of-life for PWD
– Lost thinking capacity or acute...
“Advance care planning is about
planning for the ‘what ifs’ that
may occur across the entire
lifespan.”
— Joanne Lynn, MD
...
Advance Care Planning Involves:
• Learning what types of decisions often come
up if one is too sick to make decisions for
...
Advance Care Planning Involves
(slide 2)
• Choosing a surrogate decision-maker
• Written documentation
 Advance directive...
Tips on Thinking of “End-of-Life”
• Consider planning for “last stages” rather than
last moments of life.
• Many people ex...
Benefits of Advance Care Planning
• Helps PWD get the preferred care:
– For those who prefer this: can increase chance of
...
Challenges in Planning
• Reluctance of caregivers & person w dementia
• Can be hard to understand health conditions
and wh...
4 steps for advance care planning
1. Understand health conditions and how they
are likely to progress
– Hope for best, pre...
Step 1: Understanding Health
Conditions
• Understanding dementia is key:
– Research found that viewing videos of advanced
...
Understanding Health Conditions
(cont)
• Understanding other health issues is key!
– Ex: heart failure, heart disease, COP...
Understanding Medical “Big Picture”
• Tips for discussing the medical “big picture”
with a health provider:
– Schedule a v...
Example: Alzheimer’s & COPD
Mrs. A has been diagnosed with early
Alzheimer’s. Mrs. A also has advanced COPD,
uses home oxy...
Step 2: Preferences & Values for
Future Care
• What does person with dementia value?
– What matters most in life?
– What m...
Tools to help consider preferences
• PrepareForYourCare.org
– Great easy-to-use online resource with videos,
creates an ac...
Tips to Remember
• You don’t have to sort out just what you’d
want for every – or any – future medical
decision.
– Just re...
Step 3: Document Preferences in
Writing
• Print or hand-write key points from the
process of reflecting & discussing
– Thi...
Documenting Preferences (Cont)
• Consider POLST/MOLST (Physician/Medical
Orders for Life-Sustaining Care)
– Bright-colored...
Preferences addressed in POLST
• POLST focuses on these key issues:
– If heart stopped & no breathing:
• Allow natural dea...
Step 4: Reassess preferences & plans
periodically
• Preferences will change over time, as health
evolves.
• Consider revie...
Reassessing Preferences (cont)
• Benefits & burdens of certain medical
interventions change as dementia gets worse:
– Ex: ...
Key Points on Advance Care Planning
• Most people w dementia will undergo years of
declining health
• Family conversation ...
Managing End-of-Life in Dementia
• Common challenges:
– Long slow declines are common
– Can be hard to know when “the end ...
In Very Advanced Dementia
• Person no longer walks or talks
• Person loses ability to smile
• Person doesn’t seem to recog...
When to Expect Death?
• Signs linked to ~50% chance of dying within 6
months:
– Multiple pneumonias or urinary tract infec...
The Role of Caregivers
• Caregivers often advocate for the comfort &
needs of person with dementia
• Caregivers are often ...
The Role of Palliative Care
• Palliative Care:
– Care focused on symptoms and quality of life
– Providers have special tra...
Tips for Managing End-of-Life
• Educate yourself as to what to expect
• Consider palliative care consultation
– Can help m...
Resources
Recommended Reading:
–Knocking on Heaven’s Door, by Katy
Butler
–Handbook for Mortals, by Dr. Joanne
Lynn & Jani...
Advance Care Planning Resources
• PrepareForYourCare.org
– Great easy-to-use online resource with videos,
creates an actio...
Thank you for your attention!
For more practical tips on better
healthcare for aging adults, visit the
Geriatrics for Care...
Upcoming SlideShare
Loading in …5
×

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

1,914 views

Published on

Practical information on addressing end-of-life planning, in the context of dementia including Alzheimer's disease.

The first part is about healthcare and end-of-life planning in general; the second part includes advice about end-of-life in Alzheimer's.

This talk was designed for family caregivers, and was part of a webinar with Family Caregiver Alliance in Nov 2013.

From Dr. Kernisan's Geriatrics for Caregivers project.

Published in: Health & Medicine
  • DOWNLOAD FULL BOOKS, INTO AVAILABLE FORMAT ......................................................................................................................... ......................................................................................................................... 1.DOWNLOAD FULL. PDF eBook here { https://tinyurl.com/y3nhqquc } ......................................................................................................................... 1.DOWNLOAD FULL. EPUB eBook here { https://tinyurl.com/y3nhqquc } ......................................................................................................................... 1.DOWNLOAD FULL. doc eBook here { https://tinyurl.com/y3nhqquc } ......................................................................................................................... 1.DOWNLOAD FULL. PDF eBook here { https://tinyurl.com/y3nhqquc } ......................................................................................................................... 1.DOWNLOAD FULL. EPUB eBook here { https://tinyurl.com/y3nhqquc } ......................................................................................................................... 1.DOWNLOAD FULL. doc eBook here { https://tinyurl.com/y3nhqquc } ......................................................................................................................... ......................................................................................................................... ......................................................................................................................... .............. Browse by Genre Available eBooks ......................................................................................................................... Art, Biography, Business, Chick Lit, Children's, Christian, Classics, Comics, Contemporary, Cookbooks, Crime, eBooks, Fantasy, Fiction, Graphic Novels, Historical Fiction, History, Horror, Humor And Comedy, Manga, Memoir, Music, Mystery, Non Fiction, Paranormal, Philosophy, Poetry, Psychology, Religion, Romance, Science, Science Fiction, Self Help, Suspense, Spirituality, Sports, Thriller, Travel, Young Adult,
       Reply 
    Are you sure you want to  Yes  No
    Your message goes here

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

  1. 1. End-of-life Issues in Dementia: Planning & Managing Leslie Kernisan, MD MPH Geriatrician & Caregiver Educator GeriatricsForCaregivers.net
  2. 2. 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 GeriatricsForCaregivers.net
  3. 3. 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 GeriatricsForCaregivers.net
  4. 4. 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 GeriatricsForCaregivers.net
  5. 5. 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 GeriatricsForCaregivers.net
  6. 6. “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 GeriatricsForCaregivers.net
  7. 7. 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 GeriatricsForCaregivers.net
  8. 8. Advance Care Planning Involves (slide 2) • Choosing a surrogate decision-maker • Written documentation  Advance directive, power of attorney for healthcare, POLST/MOLST GeriatricsForCaregivers.net
  9. 9. 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 GeriatricsForCaregivers.net
  10. 10. 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 GeriatricsForCaregivers.net
  11. 11. 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 GeriatricsForCaregivers.net
  12. 12. 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 GeriatricsForCaregivers.net
  13. 13. 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. GeriatricsForCaregivers.net
  14. 14. 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 GeriatricsForCaregivers.net
  15. 15. 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?” GeriatricsForCaregivers.net
  16. 16. 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. GeriatricsForCaregivers.net
  17. 17. 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? GeriatricsForCaregivers.net
  18. 18. 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 GeriatricsForCaregivers.net
  19. 19. 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. GeriatricsForCaregivers.net
  20. 20. 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 GeriatricsForCaregivers.net
  21. 21. 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 GeriatricsForCaregivers.net
  22. 22. 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 GeriatricsForCaregivers.net
  23. 23. 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 GeriatricsForCaregivers.net
  24. 24. 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. GeriatricsForCaregivers.net
  25. 25. 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 GeriatricsForCaregivers.net
  26. 26. 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 GeriatricsForCaregivers.net
  27. 27. 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 GeriatricsForCaregivers.net
  28. 28. 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 GeriatricsForCaregivers.net
  29. 29. 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 GeriatricsForCaregivers.net
  30. 30. 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. GeriatricsForCaregivers.net
  31. 31. 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. GeriatricsForCaregivers.net
  32. 32. Resources Recommended Reading: –Knocking on Heaven’s Door, by Katy Butler –Handbook for Mortals, by Dr. Joanne Lynn & Janice Lynch Schuster GeriatricsForCaregivers.net
  33. 33. 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 GeriatricsForCaregivers.net
  34. 34. Thank you for your attention! For more practical tips on better healthcare for aging adults, visit the Geriatrics for Caregivers Blog

×