Aging & Advance Care Planning

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

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.

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.)

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.

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.

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

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?

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.

Source: End of life care: definitions & decisions. Re-used with permission from
Leslie Blackhall, MD.

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
– Who will make decisions on your behalf?
• 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, and
“Handbook for Mortals” by Joanne Lynn MD.

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

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

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

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.

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 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?

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

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
(An excerpt from California’s POLST is on next slide)

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

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!)

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.

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

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.

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.
• 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

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.

Aging & Advance Care Planning

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