Neuropalliative Case Laura Koehn Assistant Professor Neurology and - - PowerPoint PPT Presentation

2/13/2015 1

Neuropalliative Case

Laura Koehn

Assistant Professor Neurology and Palliative Care Laura.Koehn@ucsfmedctr.org

No Disclosures

The Case

• Mrs. Smith is a 82 year-old woman brought in by her

daughter, Liz, for memory loss.

Her husband died 5 years ago so she moved to an

assisted living facility closer to her daughter.

One year ago, Liz notices some forgetfulness Three months ago, Liz receives phone calls about her

mother wandering the grounds and occasionally agitated

Case continued

Liz has received phone calls from bill collectors about

various overdue bills, including some for charities

• verseas, which seem to have limited credibility.
• Mrs. Smith then moves in with her daughter who also

has a full time job and appears distressed.

After completing a thorough cognitive evaluation,

depression screen, medical workup including imaging, you diagnose Mrs. Smith with Alzheimer’s Dementia.

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Liz believes in miracles and asks you to heal her mother.

How do you respond to Liz’s statement?

• A. I am sorry, but dementia is incurable.
• B. I do not believe in miracles.
• C. I wish we could cure your mother’s

dementia.

• D. We can both hope scientists will discover a

cure to help your mother soon.

I am sorry, but dementia i... I do not believe in miracles. I wish we could cure yo.. We can both hope scientis..

5% 52% 42% 1%

Hoping for a miracle

Survey of 1006 adult Americans and 774 trauma

professionals regarding preferences of care when life- threatening or fatal injury occurs. 61% believed a person in a persistent vegetative state

(PVS) could be saved by a miracle

20% of trauma professionals believed 57% believed divine intervention from God could save a

person even if the physician told them “futility had been reached.”

Why is this relevant?

Belief in miracles or divine intervention affects medical

decision making (association with CPR)

Many patients want doctors to ask about their spiritual

beliefs

Greater attention to spiritual beliefs can foster a mutual

plan of care for and with patients

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VALUE

Value and appreciate what surrogates communicate Acknowledge their emotions with reflective summary

statements

Listen carefully Understand who the patient is as a person by asking

• pen ended questions

Elicit questions

Hoping for Hope

Expressing hope for a miracle is not an expression of

an expectation.

• Challenge with saying sorry:

Confusion with sympathy or pity Shortcutting a deeper understanding Confusion with apologies Changes the subject from patient and family to physician

I WISH…

• Mrs. Smith

You see Mrs. Smith and Liz every 6 months until 6

years have passed

Her MOCA has declined and is now 6/30 She develops difficulty with swallowing and is admitted

to the ICU for aspiration pneumonia, requiring ventilator support

You are asked to attend a family meeting

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Case continued

During the meeting, the medical teams share their

concerns Mrs. Smith may not survive this hospital stay.

She does not have an advance directive eliciting her

preferences for end of life care.

They make a recommendation regarding her code

status.

What communication technique has been shown to reduce a choice of CPR?

• A. Eliciting goals and values then making a

recommendation based on those values

• B. Making a unilateral decision if CPR would

be medically futile

• C. Attending to emotions during a family

conference

• D. Using language such as “allow natural

death” rather than “do not resuscitate”

E l i c i t i n g g

• a

l s a n d v a l u e s . . . M a k i n g a u n i l a t e r a l d e c i s . . . A t t e n d i n g t

• e

m

• t

i

• n

s d . . . U s i n g l a n g u a g e s u c h a s “ . . .

31% 48% 12% 9%

CPR

Patients overestimate its effectiveness CPR discussions are often brief, do not address risks,

benefits, and outcomes

Doctors rarely address patients’ prognosis, elicit goals

and values, or provide a recommendation

Patients often report that doctors do not understand

their wishes

The framing

Framing it as the patient’s

decision not surrogates

No impact on CPR choice Framing the alternative as

Allow Natural Death

Reduced choice of CPR Framing the decision as the

norm

Reduced choice of CPR

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• Mrs. Smith

You spend time with Liz after the family meeting Liz is distraught that the doctors are “giving up” on her

mother.

When you ask about Liz’s understanding of how the

meeting went, she states “My mother is a fighter and will pull through this.”

During the meeting, the physicians told Liz that her

mother had a 5% likelihood of surviving.

You ask Liz what she understood Mrs. Smith’s likelihood of survival to be. What did she most likely say?

• A. 5%
• B. 10%
• C. 50%
• D. 30%

5 % 1 % 5 % 3 %

7% 5% 86% 1%

Zier, et al 2007

Key Findings: Qualitative Interview

Surrogates Reasons for Optimistic Estimates Need to express optimism

“Even with a 5% chance of survival there is still

• hope. I hold onto hope.”

Belief that patients’ fortitude will lead to

better-than-predicted outcomes

“…a person’s will to live and ability to survive stressful situations can impact whether they will survive or not.”

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Key Findings: Qualitative Interview

Surrogates Reasons for Optimistic Estimates Disbelief in physicians’ ability to

prognosticate

“…I don’t think doctors can really know the % chance of survival...”

Interpretation of prognosis as a “gist”

estimate rather than a precise estimate

“I tend not to trust the number as much as the feeling the doctor is conveying.”

• Mrs. Smith

A week passes and Mrs. Smith gradually improves but

has developed a stage 2 decubitus ulcer during the hospitalization

She is extubated safely and transferred to the acute

floor for further care

She is seen by speech therapy who note dysphagia of

liquids and solids

They recommend Mrs. Smith remain NPO

Liz asks you to order a PEG tube. What is your response?

• A. Yes, artificial nutrition will help Mrs. Smith’s new

ulcer heal

• B. Yes, otherwise she will starve to death
• C. No, I cannot recommend a futile procedure
• D. You withhold judgment until having a further

conversation explaining the risks of the procedure and unclear benefits

Y e s , a r t i f i c i a l n u t r i t i

• n

w i l . . . Y e s ,

• t

h e r w i s e s h e w i l l s t . . . N

• ,

I c a n n

• t

r e c

• m

m e n d . . . Y

• u

w i t h h

• l

d j u d g m e n t u . . .

9% 86% 4% 1%

Key Findings: Survival

Median survival following

development of eating problems for those with PEG was 177 days

No significant difference was

found for those without PEG after adjusting for relevant covariates

Teno et al, Oct 2012 JAGS

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Key Findings: Ulcers

Ulcer Development:

Those with a PEG significantly more likely to develop an ulcer Adjusted odds ratio = 2.27 (95% CI, 1.95-2.65)

Ulcer Improvement:

Those with a PEG significantly less likely to show improvement

in an existing ulcer

Adjusted odds ratio = 0.70 (95% CI, 0.55-0.89)

Each finding confirmed by multiple sensitivity

analyses

Teno et al 2012, Annals of IM

• Mrs. Smith

Over the next days, Mrs. Smith becomes more alert She takes in very small amounts of food by mouth While Liz wants to continue thinking about artificial

nutrition and hydration, she is agreeable to a time trial at home without these interventions.

Now it is time for discharge.

What is your recommendation for care after

• Mrs. Smith is discharged?
• A. Short stay in a rehabilitation facility receiving

intensive PT/ST/OT

• B. Recommendation for a skilled nursing facility

to bridge her to home

• C. Uncertain at this time. You sit down with Mrs.

Smith and Liz to further clarify their goals.

• D. Home with hospice

S h

• r

t s t a y i n a r e h a b i l i t a . . . R e c

• m

m e n d a t i

• n

f

• r

a s k . . . U n c e r t a i n a t t h i s t i m e . Y

• .

. . H

• m

e w i t h h

• s

p i c e

2% 22% 68% 9%

• Mrs. Smith

You sit down with Liz and

clarify her hopes for Mrs. Smith’s care.

She wants to bring her

mother home but continues to have a goal of extending her mother’s life as long as possible by non-invasive means.

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Now what is your recommendation?

• A. Inpatient hospice
• B. Home with hospice
• C. Home with palliative care services
• D. Recommend continued hospitalization

until goals are further clarified

I n p a t i e n t h

• s

p i c e H

• m

e w i t h h

• s

p i c e H

• m

e w i t h p a l l i a t i v e c a r e . . . R e c

• m

m e n d c

• n

t i n u e d . . .

2% 4% 61% 33%

A word about community based palliative care

Palliative care has evolved from a system reliant on

hospices to a model which includes inpatient services at most large hospitals

This leaves many patients unreached Newer models of care have included both outpatient

palliative care services as well as home based palliative care services to help patients throughout the course of their illness.

Dementia Care

Important area of continued development Newer more comprehensive models of care are being

developed internationally (particularly UK, Australia) and more locally: UCLA Alzheimer’s and Dementia Care Program UCSF/UNMC Dementia Care Ecosystem Please contact James Fraser, project manager at

james.fraser2@ucsf.edu for further details and referral placement.