integrating palliative care throughout the continuum · 2019-11-18 · palliative care • seeks to...
TRANSCRIPT
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?
11
A thought experiment first, please
Picture your death
Where? How?
12
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
16
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?
17
Getting permanently sick
• Means loss of definition of myself• Means everything is uncertain• Makes the sun seem clouded over• Makes the nights longer
18
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
19
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
20
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
21
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
23
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
24
But do we talk about it?
25
Whose job is it to talk about this stuff?
26
What if the patient asks YOU?
27
Our discomfort is palpable to those people we care for
28
• 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?
29
• Service• Compassion• Presence• Honesty• Questions
answered• Lights illuminating
the path of darkness
But they don’t listen
30
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?
31
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
32
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
35
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
36
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
37
The time to talk is when the patient asks, “When am I getting better?”
OR
When you’re truly worried
38
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
39
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?
40
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?
41
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
43
“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
45
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
46
Your thoughts?
47
