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Aging & Advance Care Planning

How Older Adults and Family Caregivers Can Plan for Health Crises and End-of-Life Care.

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Aging & Planning
for (Possible) End-of-Life:
Tips for Older Adults & Family Caregivers
Leslie Kernisan, MD MPH
Geriatrician & Caregiver Educator
BetterHealthWhileAging.net
These Slides Will Cover
• Overview of advance care planning for end-of-
life
– What it means & how to approach
– Tools to help you plan
• Why you should talk to the doctors before
completing/updating your planning
• Managing health crises (possible end-of-life)
in aging adults
– Common challenges & how to approach
www.BetterHealthWhileAging.net
“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
www.BetterHealthWhileAging.net
What I tell patients & families
We always want to hope for the
best.
 And, we should prepare for the
likely, as well as the quite
possible.
www.BetterHealthWhileAging.net
A more technical (wordy) definition
“Advance care planning (ACP) is an ongoing process in
which patients, their families, and their healthcare
providers
– reflect on the patient’s goals, values, and beliefs,
– discuss how they should inform current and future medical
care, and ultimately,
– use this information to accurately document their future
health care choices, ideally after an exploration of the
patient and caregiver’s knowledge, fears, hopes, and
needs.”
Source: K Detering & M Silveira. Advance care planning and advance directives. In:
UpToDate, Post TW (Ed), UpToDate, Waltham, MA. (Accessed on April 7, 2017.)
www.BetterHealthWhileAging.net
In other words…
• There is more to health planning than a legal
statement regarding “end-of-life wishes”
• Advance care planning is an ongoing process
of planning for future medical care, including
possible health crises and end-of-life
situations.
• Exploring, reflecting, learning, and conversing
should come before legal documenting.
www.BetterHealthWhileAging.net

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Aging & Advance Care Planning

  • 1. Aging & Planning for (Possible) End-of-Life: Tips for Older Adults & Family Caregivers Leslie Kernisan, MD MPH Geriatrician & Caregiver Educator BetterHealthWhileAging.net
  • 2. These Slides Will Cover • Overview of advance care planning for end-of- life – What it means & how to approach – Tools to help you plan • Why you should talk to the doctors before completing/updating your planning • Managing health crises (possible end-of-life) in aging adults – Common challenges & how to approach www.BetterHealthWhileAging.net
  • 3. “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 www.BetterHealthWhileAging.net
  • 4. What I tell patients & families We always want to hope for the best.  And, we should prepare for the likely, as well as the quite possible. www.BetterHealthWhileAging.net
  • 5. A more technical (wordy) definition “Advance care planning (ACP) is an ongoing process in which patients, their families, and their healthcare providers – reflect on the patient’s goals, values, and beliefs, – discuss how they should inform current and future medical care, and ultimately, – use this information to accurately document their future health care choices, ideally after an exploration of the patient and caregiver’s knowledge, fears, hopes, and needs.” Source: K Detering & M Silveira. Advance care planning and advance directives. In: UpToDate, Post TW (Ed), UpToDate, Waltham, MA. (Accessed on April 7, 2017.) www.BetterHealthWhileAging.net
  • 6. In other words… • There is more to health planning than a legal statement regarding “end-of-life wishes” • Advance care planning is an ongoing process of planning for future medical care, including possible health crises and end-of-life situations. • Exploring, reflecting, learning, and conversing should come before legal documenting. www.BetterHealthWhileAging.net
  • 7. Caveats Preparing for health crises and end-of-life is NOT just about medical issues. Emotional & spiritual & relationship aspects are VERY important. But these slides focus on medical, since people often don’t do as much as they could. www.BetterHealthWhileAging.net
  • 8. What‘s the Likely to Prepare For? Includes: • Being so sick or impaired that you can’t make your own medical decisions • Being so sick that you need machines to help keep you alive • Dying www.BetterHealthWhileAging.net
  • 9. What‘s the Likely to Prepare For? Complexities that come up in real life: • Being so sick or impaired that you can’t make your own medical decisions – What if temporary? What if permanent? What if we’re not sure which it is?? • Being so sick that you need machines to help keep you alive – Temporary? Permanent? Unclear?? • Dying – What if you aren’t clearly , definitely, dying? www.BetterHealthWhileAging.net
  • 10. Key Thing to Know • Many older adults experience health crises that *could* be terminal – Common in advanced heart failure, COPD  The last weeks-months of life are easy to identify in hindsight, but often hard to identify as we are in the midst of them. www.BetterHealthWhileAging.net
  • 11. www.BetterHealthWhileAging.net Source: End of life care: definitions & decisions. Re-used with permission from Leslie Blackhall, MD.
  • 12. 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 www.BetterHealthWhileAging.net
  • 13. Advance Care Planning Involves (slide 2) • Choosing a surrogate decision-maker – Who will make decisions on your behalf? • Written documentation  Advance directive, power of attorney for healthcare, POLST/MOLST www.BetterHealthWhileAging.net
  • 14. 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, and “Handbook for Mortals” by Joanne Lynn MD. www.BetterHealthWhileAging.net
  • 15. Benefits of Advance Care Planning • Helps a very ill person 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 www.BetterHealthWhileAging.net
  • 16. Challenges in Planning • Reluctance of aging adult, & of caregivers • Can be hard to understand health conditions and what to expect • Some older adults may be too impaired to make decisions (e.g. dementia) – Can still consider preferences www.BetterHealthWhileAging.net
  • 17. 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 in writing 4. Re-assess preferences and plans periodically www.BetterHealthWhileAging.net
  • 18. Step 1: Understanding Health Conditions • Understanding any chronic conditions is key: – Ex: heart failure, heart disease, COPD, cancer – Know which are likely to cause health crises • In aging adults, health crises can easily become end-of-life situations. www.BetterHealthWhileAging.net
  • 19. 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?” www.BetterHealthWhileAging.net
  • 20. 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. www.BetterHealthWhileAging.net
  • 21. Step 2: Preferences & Values for Future Care • What does the aging person 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? www.BetterHealthWhileAging.net
  • 22. Tools to help consider preferences • PrepareForYourCare.org – Great easy-to-use online resource with videos, creates an action plan. • Toolkit for Health Care Advanced Planning – Comprehensive resource from the American Bar Association’s Commission on Law & Aging • TheConversationProject.org • Five Wishes – Creates a living will valid in several states www.BetterHealthWhileAging.net
  • 23. 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. www.BetterHealthWhileAging.net
  • 24. 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 www.BetterHealthWhileAging.net
  • 25. 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 (An excerpt from California’s POLST is on next slide) www.BetterHealthWhileAging.net
  • 27. 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: • Full treatment (hospitalization including ICU care if needed?) • Limited additional interventions? (IV antibiotics and fluids? Hospitalization?) • Comfort focused treatments only? • POLST can be revised if health status and/or preferences change www.BetterHealthWhileAging.net
  • 28. 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 – After a significant improvement in health (this does happen!) www.BetterHealthWhileAging.net
  • 29. Reassessing Preferences (cont) • Realize that benefits & burdens of certain medical interventions change as people decline – 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. www.BetterHealthWhileAging.net
  • 30. Key Points on Advance Care Planning • Hope for the best but prepare for the quite possible – Learn what kinds of health crises to expect from chronic conditions • Family conversation on preferences & goals helps reduce later stress & anxiety • Preferences & plans regarding care often evolve over time www.BetterHealthWhileAging.net
  • 31. 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 patients can benefit from palliative approach, but may be hard to find. www.BetterHealthWhileAging.net
  • 32. 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. www.BetterHealthWhileAging.net
  • 33. Resources Recommended Reading: –Knocking on Heaven’s Door, by Katy Butler –Handbook for Mortals, by Dr. Joanne Lynn & Janice Lynch Schuster www.BetterHealthWhileAging.net
  • 34. Advance Care Planning Resources • PrepareForYourCare.org – Great easy-to-use online resource with videos, creates an action plan. • Toolkit for Health Care Advanced Planning – Comprehensive resource from the American Bar Association’s Commission on Law & Aging • TheConversationProject.org • Five Wishes – Creates a living will valid in several states www.BetterHealthWhileAging.net
  • 35. About Leslie Kernisan, MD MPH and BetterHealthWhileAging.net Dr. Kernisan is a practicing geriatrician who believes it should be easier for older adults to have the best possible health and quality of life as they age. She has a special interest in helping family caregivers. Visit BetterHealthWhileAging.net to find more useful articles on senior health, family caregiving, and helping older parents. You can also join us by listening to our free podcast. www.BetterHealthWhileAging.net