Integrating Palliative Care Throughout the Continuum · 2019-11-18 · Palliative Care • Seeks to...

Integrating Palliative Care Throughout the Continuum

Shelly Garone, MD, FACPKaiser PermanenteNorth Sacramento Valley

Today

• We discuss what people hope for• We remember how people die• We challenge ourselves to be brave

enough to answer the questions of those we care for

• We learn that the guidance we offer when we speak is the primary driving force for us to be in health care

3

As children, we expect …

• To be safe• To grow up• To be healthy• To achieve our goals

4

Never growing up sounds ideal …

5

But then there is this thing called reality

As does aging without physical change

And not truly dying, or perhaps just some day magically ceasing to exist

6

23 y/o s/p GSW to C1

7http://brainstembiometrics.com/sedation/

43 y/o with new diagnosis of stage 4 disease

8http://www.webmd.com/women/ss/slideshow-screening-tests-women

86 y/o with COPD

9

92 y/o with dementia

10

So now what?

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A thought experiment first, please

Picture your death

Where? How?

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Sudden death

13

Time

Func

tion

10–15% of Americans Death

Cancer

14

TimeOnset of incurable cancer

-- Often a few years, but decline usually < 2 months

Func

tion

Death

Functional status is most

predictive

Source: Joanne Lynne20–25% of Americans

Func

tion

Death

~ 2-5 years, but death usually seems “sudden”

Time

20–25% of Americans

Organ system failure

15Source: Joanne Lynne

Begin to use hospital often, self-care becomes difficult

Dementia/Frailty

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Time

Quite variable —up to 6–8 years

Death

Onset could be deficits in ADL, speech, ambulation

Func

tion

40% of Americans

Source: Joanne Lynne

So if you don’t die right away, how do you live?

Better yet, how do you thrive?

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Getting permanently sick

• Means loss of definition of myself• Means everything is uncertain• Makes the sun seem clouded over• Makes the nights longer

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Facing death

• Is normally terrifying• Raises existential angst –

– Is there something after? – Am I good enough to deserve it?

• Raises awareness of challenges in day-to-day practicalities

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What is Palliative Care?

• Palliative Care is simply excellent medical care for folks living with chronic, progressive illnesses that aligns the goals of the patient with his/her medical care plan– Conversation about goals and decisions– Life affirming– Values neutral– Improved quality

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Palliative Care

• Seeks to maximize personhood despite a body getting sicker

• Aims to alleviate suffering• Understands what the owner of the body wants

– I, as a doc, want a normal A1c– My patient, the body’s owner, may want cookies

and accept consequences• Creates care plans aligned to the person’s goals

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Shelly’s definition of Palliative Care

If you have to live sick, how can I help you live well?

22CHA Feb 2016

Preparing for decline

• It is not human nature to prepare for decline

• Without prior thought, families will default to length of life, not quality of life

• Without prior discussion, doctors will default to more tests, more poking, more prodding

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If you must live in a health care facility, odds are• You have a chronic progressive illness• You have progressive loss of function• You are needing more and more care• You may be more symptomatic• Your mortality is more visible than

someone else’s

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But do we talk about it?

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Whose job is it to talk about this stuff?

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What if the patient asks YOU?

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Our discomfort is palpable to those people we care for

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• We are trained to cure• When we cannot, we trained to

speak to what we can do– Correct lytes, give abx

• Our inability to cure is uncomfortable– Which may make us come

across as impersonal, uncaring or, worst of all, rude

What do our patients need?

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• Service• Compassion• Presence• Honesty• Questions

answered• Lights illuminating

the path of darkness

But they don’t listen

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SELF-ACTUALIZATIONmeaning, purpose,

existentialism

ESTEEMpride, dignity,

self control

LOVE & BELONGINGrole in society (job), family

& community

SAFETYenvironment, non-abandonment,

advanced care planning

PHYSICAL ISSUESsymptoms, function, FEN

SELF-ACTUALIZATIONmeaning, purpose,

existentialism

ESTEEMpride, dignity,

self control

LOVE & BELONGINGrole in society (job), family

& community

SAFETYenvironment, non-abandonment,

advanced care planning

PHYSICAL ISSUESsymptoms, function, FEN

Maybe we don’t listen either?

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Tired, hungry, work-life balance

HEDIS, core measures, CMS coding

Seriously, talk-time?

What do they need to hear?

• What’s “normal”• What COULD happen• What IS LIKELY to happen• What IS NOT LIKELY to happen• That the “right” decision is the one that feels

right• That we will create a care plan aligned to

their carefully considered decision

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23 y/o with GSW to C1• New normal is bedbound,

vent dependent, not going home

• A miracle could happen• Infections, bedsores,

autonomic instability are likely

• Walking and being like he was before are NOT likely

• Choices include artificial life prolongation, or comfort and natural death, or something in the middle

33

http://brainstembiometrics.com/sedation/

43 y/o with new diagnosis of stage 4 disease

• New normal is waiting for the other shoe to drop

• Decades of more life could happen

• Treatments, new tumors are likely

• Cure is NOT likely• Choices include attack every

tumor to attempt eradication, or attack the most symptomatic tumors, or look only at comfort measures

34http://www.webmd.com/women/ss/slideshow-screening-tests-women

86 y/o with COPD• Normal is daily cough,

progressive loss of energy and stamina, recurrent exacerbations

• Complete respiratory failure could (or could not) happen

• Recurrent exacerbations and steroid dependence are likely to happen

• Returning to the health enjoyed 10 years ago is not likely

• Choices include looking only at exacerbations without context of larger disease “You’ll be good as new” vs. planning for progressive decline

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92 y/o with dementia• Normal is progressive loss

of person and basic physiological functions

• Slowing of decline could happen

• Falls, infections, malnutrition and weight loss will happen

• Recovery to pre-trauma state will not likely happen

• Choices include denying underlying dementia and just fixing issues in isolation as they arise, or planning for the next decline

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Those conversations don’t have to be physician-driven• Patients question those they most trust• ALL health care professionals can answer some

questions– RTs know COPD is not going to be better in a

year– STs know dysphagia may be permanent– PTs know when walking won’t happen again– OTs know when self-toileting won’t happen again– RNs know when basic physiology is failing– MSWs know stress in a wife’s face when she

recognizes the truth in front of her

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The time to talk is when the patient asks, “When am I getting better?”

OR

When you’re truly worried

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What it boils down to

• Functional decline• Unintentional weight loss• Impaired cognition • Accumulated organ system diseases• Metabolic markers:

– Hyponatremia– Serum prealbumin– Blood cell counts (lymphopenia, then anemia)– Cholesterol

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So what do you say?

• What is your understanding of the situation?

• What potential choices and outcomes do you have?

• What are your fears?• What are your hopes?• What trade-offs are you willing to make?

Not willing to make?

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All health care workers can speak

• You seem less able to do things like you could a few months ago

• I’m worried that you’re still losing weight• Mr. Jones, your wife’s persistent confusion and

forgetfulness worries me• Mrs. Smith, the doctor is seeing some lab

abnormalities that he does not like• If this does not end up the way we’re hoping it will,

do you have a contingency plan? What I call Plan B?

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Your role may simply be firing the warning shot

This lets patient and family know that we are worried …

and that we CARE42

Starting to talk

• Mandates that we follow-up– We cannot say, “I’m worried,” and drop it

• Acknowledges that our patient/family may not be ready to hear us– We cannot abandon them– “Can we see how this next week goes and re-

address my worries afterward, if I still have them?”

• Does NOT condemn the patient to worsen or die

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“I could be wrong …”

44www.projectafterforums.com

My ideal world has charting that shows• Evidence we calmed anxiety• Evidence that we’ve offered some interpretation

of the clinical situation and treatment choices• Evidence that we’ve assessed what the patient

hopes for and how much she’ll give up to get it• Documentation of which treatment choice gets

her closest to her goal• A follow-up plan

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Tomorrow• New diagnoses (or complications) darken our

patients’ paths– Your willingness to give information turns on the

lights• If they are asking you the question, they are

ready for the answer– Tell the truth

• We may not have a choice in what we live with, nor when we’ll die– But we have lots of choice in how well we live

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Your thoughts?

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Thank you

Shelly Garone, MD, FACPKaiser PermanenteNorth Sacramento ValleyShelly.R.Garone@kp.org