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Palliative care for non-cancer illness:
Pitfalls and strategies for frailty
Paige Moorhouse MD MPH FRCPC MSM
James Downar, MDCM, MHSc (Bioethics), FRCPC
CHPCA Learning Institute, 2016
Objectives
• What is frailty, and why does it matter?
• How does palliative care differ in frailty?
– Analgesia and antipsychotics
– Advance Care Planning
• What are some important pitfalls and
strategies?
– Medication deprescription/rationalization
The game has changed…
• Older adults have higher numbers of chronic
disease and are more vulnerable than ever
before1-2
• We call this complexity “frailty”
• The needs of those with frailty are often at
odds with current models of care
– Including palliative care
1.
2.
CIHI: Canadian Institute for Health Information
Statistics Canada, Census of Population, 2011
3
What is frailty?
• As we age, we accumulate health issues
– Acute/chronic, minor/major, social/physical
– Marbles in the jar
• The issues cost us physiologic reserve
– Reserve allows us to recover and survive
– When we run out of reserve, we die
• Clinically, frailty manifests as:
– Declining mobility, function or cognition
– Unmanageable symptoms
4
Critical Concept
5
Critical Concept
6
Critical Concept
7
Frailty informs prognosis
• Frailty is associated with poor health outcomes across settings,
including:
– ↑ risk of adverse effects from medical/surgical procedures 1
– prolonged hospital length of stay 2
– ↑ risk of institutionalization 3
– functional and cognitive decline 4
– ↓ life expectancy 5
• Frailty therefore tells us:
– how to contextualize risk
– what to expect in the future
– how to plan care
1. Makary MA. J Am Coll Surg 2010; 210:901–908 2. Ekerstad N. Circulation 2011;
124:2397–2404, 3. Rockwood K. CMAJ 2005; 173:489–495. 4. Theou O, Rockwood K.
Aging Health 2012; 8:261–2718., 5. Searle SD. BMC Geriatr 2008; 8:24
Goals of therapy should shift as frailty
progresses
9
The Status Quo
Patients
System
Increasing
prevalence of
frailty & demand
for care
Supply of providers
silo’ed: care is not
coordinated or
continuous
Patients/ caregivers
not understanding
prognosis and
options
Clinical knowledge
of frailty not being
translated into care
Care poorly
matched
to prognosis
Poor Patient
Experience
 Healthcare
Utilization
 Flow
10
How does frailty challenge us?
1. Frailty and dementia are poorly recognized in
single system medicine
– Our understanding of the natural history of frailty
is not refined
2. “Standard of care” approaches can be
harmful
3. We have oversold the benefits of ACP
4. Traditional communication models fall short
5. We’re not set up to address frailty effectively
11
How does frailty challenge us?
Cancer
Frailty
Progressive, accelerating trajectory
Slow progression, inconsistent
Curative/life-prolonging therapies
stopped at transition to PC
No effective disease-modifying Rx, no
clear transition
Prognostication easy in final 3 months
Prognostication challenging
Main concerns- pain, symptoms, fear of Main concerns functional decline,
death
cognitive impairment, weight loss
Younger patient, caregiver
Older patient, caregiver
Single specialist physician manages
care
Single GP or group of specialists
Viewed as life-limtiing
Not viewed as an illness
12
Dependence for ADLs
Teno et al. J Pall Med 2001;4:457-64.
How does frailty challenge us?
• Palliative Care Interventions
• Higher risk of medication AEs
• What do you do for:
–
–
–
–
–
–
Loss of independence
Cognitive impairment
Deteriorating performance status
Slow walking speed
Weight loss, weakness
Exhaustion, Depression
• How long do you expect us to keep this up?
Koller and Rockwood. Cleve Clin J Med 2013;80:168–74.
Kendall et al. JPSM 2015;50:216-24.
14
Frailty is not recognized
15
1. Frailty is not recognized
• Frailty is a syndrome
• It has the prognostic robustness of cancer stage
– Across populations and interventions
• There is no ICD-10 code
– R 53.83 and R 53.81: “Fatigue and malaise”
– R 53.81: “Deconditioning”
– R 54: “Age-related physical debility” is applicable to
frailty, old age
• How are we experiencing it?
– Alternate Level of Care (ALC)
– LOS
16
1. Frailty is not recognized
• CIHI data on length of stay
CMG
Age group
Average cost/pt
Average LOS
Dehydration
60+
4,007
5 days
Lower urinary
tract infection
60-79
80+
5,069
5,140
6.1
7.3
Dementia
60-79
80+
13,895
14,628
13.3
15.5
Heart failure
without cath
60+
7,109
8.5
CABG (without
MI/shock)
60-79
80+
31,007
29,537
17.2
28
CIHI Patient Cost Database (does not include physician costs)
1. Frailty is not recognized
• Those with frailty are characterized by
multiple health care interactions and
transitions
• We lack a common language to achieve
continuity and interpretability
– Multiple tools and measures
– Attempt to use administrative datasets to determine
clinical frailty
18
1. Dementia is not recognized
• Dementia is progressive and terminal
• Dementia is associated with poor end of life care
– It is poorly recognized by clinicians1,2
– Caregivers report feeling unprepared
– Total pain is not considered
• Dementia is a key driver of frailty3
• We need a simple way for non-geriatricians to recognize and
stage dementia
1.
2.
3.
Knopman DS. Am. J. Med. 1998 Apr 27;104(4A):2S–12S; 39S–42S.
Valcour VG Arch. Intern. Med. 2000 Oct 23;160(19):2964–8
Mallery L, Moorhouse P. Respecting Frailty. J Med Ethics 37;2:126
19
Stage
4
Mild
5
Moderate
6
Severe
7
Very
Severe
Memory
Function
C
Current news/
events
I
IADLs
U
US President/
Prime Minister
R
Rewearing clothes
R
Relatives (1st
degree)
A
ADLs
E
Everything
See manual
N
Non verbal
Non ambulatory
20
Frailty and Dementia Stage
Frailty Level
Dementia (FAST) stage
Thriving
No subjective
decline
Normal
Subjective, no
objective decline
Well with treated co-morbid disease
Subjective and
objective decline
Vulnerable
MCI
Help with high level tasks
Mildly Frail: need help with some
IADLs
Mild
Help with some IADLs, Forgets
current events
Moderately Frail
Moderate
Help with all IADLs, cuing for
BADLs
Forgets current events
Severely Frail
Severe
Need help with all BADLs,
Forgets close relatives
Very Severely Frail
Very Severe
Non verbal, non-ambulatory
Reisberg B. Functional assessment staging (FAST). Psychopharmacol Bull. 1988;24:653-659.
Rockwood K, Song X, MacKnight C et al. A global clinical measure of fitness and frailty in elderly people. CMAJ. 2005;173:489-495.
21
Why does dementia matter?
• Even in Mild Cognitive Impairment (MCI), patients have
difficulty with aspects of the consent process1
• With dementia, capacity to make medical decisions is uncertain
• Difficulty imagining future self2
• Impaired short term recall can make it difficult for patients to
compare multiple options and outcomes
• Insight is often limited
• Delirium is common in those with frailty
– Especially during a health crisis (when decision making is
necessary)
1.
Okonkwo OC, Griffith HR, Copeland JN et al. Medical decision-making capacity in mild cognitive impairment: a 3-year
longitudinal study. Neurology. 2008;71:1474-1480.
2.
22
Dening KH, Jones L, Sampson EL. Advance care planning for people with dementia: a review. Int Psychogeriatr. 2011;23:15351551.
Why does dementia matter?
• Dementia has implications for decision making/crisis
management
– Standard of care treatment for other health issues promotes
survival; survival = progression of dementia
– Enhanced recognition of opportunities for a comfortable
death in dementia
• Pneumonia
• Hip fracture
1.
2.
3.
Knopman DS. Am. J. Med. 1998 Apr 27;104(4A):2S–12S; 39S–42S.
Valcour VG Arch. Intern. Med. 2000 Oct 23;160(19):2964–8
Mallery L, Moorhouse P. Respecting Frailty. J Med Ethics 37;2:126
23
Approach to sentinel events in
dementia
Non-ambulatory
Restraints
Dementia
Hip fracture
Surgery
Intensive rehab
24
1. Recognition of frailty and its drivers
• Strategy:
• Advocate for screening for frailty in clinical
settings where the prevalence is high and
invasive interventions are likely to be offered
– CHF, COPD, renal clinic, pre-operative, oncology,
CV surgery
• Train non-experts to identify frailty
– FACT tool
25
26
Pre-palliative era
Withholding information about
diagnosis
Lack of awareness about
palliative care in cancer
Comfort care withheld
Current EOL care for older
adults
Avoid discussions of prognosis
• Lack of awareness of “frailty”
• Lack of recognition of dying
• Inattention to how people die
Comfort care delayed
Culture of cure
• Futile treatments offered
• Specialty-based mandates
Spiritual approach at odds with
medical care
No systematic approach for PC
Insensitivity to needs of dying
System does not support good
27
EOL care
The standard of care may
be harmful
28
2. The standard of care may be harmful
• Treatment according to the standard of care for
each issue can be harmful
– Lack of external validity
– Polypharmacy
• Average frail patient would be on 12 meds1
– Lack of attention to clinical outcomes that matter
to patients
• Fates worse than death
• We routinely sacrifice QoL for presumed
quantity of life
29
1. Boyd JAMA. 2005;294:716-724
Dietary recommendations in diabetes:
Let them eat cake!
30
2. The standard of care can be harmful
• Mr. N: 74M admitted to vascular surgery
– Open AAA repair (6 cm)
– L nephrectomy (2 cm uroepithelial mass at UPJ)
– Spiculated small bowel mass
• Missed octreotide scan and surgery x 2 as off
unit for hours at a time
• Asked geriatrics for cognitive assessment
31
2. The standard of care can be harmful
• Patient refused cognitive assessment
– Had already signed consent form
– BCRS: did not know details of proposed surgery, or recent
living arrangements
– No insight into functional decline or need for help
• Collateral history from son (Ontario)
– 5 years of ↓ STM
– 3 years ago, decreased IADL function
– 2 years ago, new loss of personal hygiene
• Collateral history from community SW
– Unable to set up apartment, or do any BADLs
32
2. The standard of care can be harmful
• Son identified as SDM  phone call with team
• Vascular surgeon presented proposed surgery
– When the aneurysm is over 6 cm, we operate
– 1-2% risk peri-operative death
• PATH presented big picture
– Mod/severe dementia
– Possible carcinoid, renal cancer slow growing
– Surgery would be associated with need to stay on
unit/restraints/sedation: immediate threat to independence
– Surgery would promote survival to progress to next stage
of dementia
• Son declined surgery
33
2. The standard of care can be harmful
• Abdominal aortic aneurysm (AAA) repair for those
aged 80 to 84
- 7% died
- 32% were not discharged home (i.e., to nursing homes,
rehabilitation centers, or other)
- 9% had an MI
• Annual rate of AAA rupture in patients refusing or
unfit for surgical repair
5.5 to 5.9 cm
9.4
6.0 to 6.9 cm
10.2
>/= 7.0 cm
37.5
34
Schermerhorn ML, et al. NEJM 2008;358(5):464-474
We have oversold the
benefits of ACP
35
3. We have oversold the benefits of ACP
• If every physician was committed to having early and
routine conversations with our patients to ensure that they
have advance care plans, we could avoid suffering at the
end of life.1
•
“By
planning in advance, you can be sure that your family,
friends and/or health care providers know your wishes, and
can ensure these wishes are followed”2
1. Howard et al. Can Fam Physic 2015;61:663-556
2. BC My Voice Advance Care planning Guide
Case: Mrs. A
• 83 year old woman: CHF, CKD, COPD, DM
• Admitted to hospital with pneumonia
– She lives alone and reports that she is independent
with all activities of daily living
• While in hospital, develops chest pain
– Consents to cardiac catheterization: 3 vessel disease
• Develops GI bleed with anticoagulation
– Consents to scope
• Develops delirium, team is considering CABG
Mrs. A
• Daughter is called (for the first time)
– She sees her mom daily at home, provides assistance
for all IADLs
– Reports 5 year history of cognitive and functional
decline including repetitive dressing
• Daughter brings in an advance directive
completed 3 years ago with GP
– Appoints her daughter as SDM
– “Full code” and that she does not want to go to LTC
Mrs. A: Challenges
• While in hospital, Mrs. A has “consented” to multiple
interventions
– Presently CABG has been proposed
• Mrs. A has requested to be “Full Code” and avoid LTC
– How do we reconcile the feasibility and appropriateness of this
directive with the present situation?
• Did Mrs. A have capacity when she completed the AD?
• Has ACP maximized her autonomy?
What does the literature say?
• We routinely miss baseline cognitive impairment
– In the community
• Primary care clinicians may not recognize cognitive impairment during
routine history in as many as 76% of patients with dementia or probable
dementia1-5
– In acute care7,8
• 42% of hospital admissions had dementia, < half were diagnosed
• And then there’s delirium…
• We misidentify capacity 58% of the time6
– Identification of capacity is not a routine part of AD programming
1.
2.
3.
4.
5.
6.
7.
8.
Valcour VG Arch. Intern. Med. 2000 Oct 23;160(19):2964–8
Ganguli M. J Am Geriatr Soc. 2004;52:1668-75. [PMID: 15450043]
Holsinger T. JAMA. 2007;297:2391-404. [PMID: 17551132]
Chodosh J.. J Am Geriatr Soc. 2004;52:1051-9. [PMID: 15209641].
Querfurth HW.. N Engl J Med. 2010;362: 329-44. [PMID: 20107219]
Sessums LL. JAMA. 2011 Jul 27;306(4):420–7.
Moorhouse CCD Abstract Oct 2015.
Russ et al. Age Aging
Culture of deference in decision making
• When we understand cognition/capacity: decisions change!
• Data from the Palliative and Therapeutic Harmonization
(PATH) program:
– 57% of referrals had a diagnosis of dementia
– A further 19% diagnosed as part of PATH
• 89% of those changed their decision to decline proposed intervention
after completing PATH process1
• Cognitive/capacity assessment must become a routine part
of care where:
– Procedures are being proposed
– Advance directives are being created/updated
– Discharge is being planned
1. Moorhouse & Mallery JAGS 2012;60:2326-2332.
Strategy: Getting the most out of ACP
• How can we get the most benefit from public
campaigns directed at ACP
• Stop focus on SDM
• Stop focus on statements about treatments
• Start focusing on what every person needs to know
to make an informed health decision
• For themselves
• For another person
• Build decision making skills using a framework
ACP: common pitfalls
• ACP is a procedural skill
• Not every physician is well-positioned in ACP
• ALWAYS involve a second decision maker in the
process (regardless of cognition/capacity)
– Resistance is an opportunity for education
– Helps broker the discussion, contextualize values
• Disclose the limitations of ACP
– Not all wishes are feasible to follow (circle of care)
– Written wishes are only as good as the updates that follow
them– what is “right” today, may be harmful tomorrow
• Close the loop with navigation
• Encourage “just in time decision making” by fostering
skills in the decision maker
PATH Framework for Decision Making
Which health conditions are easily treatable? Which are not?
How will frailty make treatment risky?
How can symptoms be safely and effectively managed?
Will the proposed treatment improve or worsen function or
memory?
Will the proposed treatment require time in hospital? If so, for
how long?
Will the treatment allow more good quality years, especially at
home?
What can we do to promote comfort and dignity in the time left?
44
Identifying Patients for PC Approach
Gold Standards Framework/Prognostic Indicator
Guidance (GSF/PIG) Tool
1. Surprise Question (?)
• Would you be surprised if this patient died in the next
12 months?**
2. General Indicators of Decline
3. Specific Clinical Indicators
Thomas.K et al. Prognostic Indicator Guidance, 4th Edition.
The Gold Standards Framework Centre In End of Life Care CIC, 2011.
**Surprise Question
• 10 studies – 7790 patients
•
•
•
•
•
3 cancer
4 renal failure
1 CHF
1 end-stage lung disease
1 MSICU
• Good response rate when few raters
• Poor response rate among GPs (48-84%)
Downar et al. unpublished
**Surprise Question
• Poor interobserver reliability
• Kappa 0.34-0.41
• Poor-Moderate Accuracy
• Sens 65%, Spec 86%
• Cancer PPV ~50%
• Noncancer PPV 32%
– LR+ 2.4, LR- 0.6
• Up to 78% of patients admitted with CHF (!!) would be
flagged by the SQ
• Provider dependent
Downar J, Goldman R, Pinto R et al. unpublished
General Indicators of Decline
• Advancing disease – unstable,
deteriorating complex
symptom burden
• Decreasing response to
treatments, decreasing
reversibility
• Choice of no further disease
modifying treatment
• General physical decline
• Declining functional
performance status
– Palliative Performance
Scale(PPS) ≤60
– Reduced ambulation,
increasing dependence in
ADLs
• Co-morbidity is regarded as
the biggest predictive indicator
of mortality and morbidity
• Weight loss - >10% in past six
months
• Repeated unplanned/crisis
hospital admissions
• Sentinel event
– Serious fall
– Bereavement
– Retirement on medical
grounds
• Serum albumin <25g/l
Thomas.K et al. Prognostic Indicator Guidance, 4th Edition.
The Gold Standards Framework Centre In End of Life Care CIC, 2011.
Specific Clinical Indicators
•
•
•
•
•
•
Cancer
Lung disease (COPD)
CHF
Renal failure
Liver Disease
Neurological Disease
Clinical Indicators - Frailty
Multiple co-morbidities with impairment:
• Deteriorating performance status
• Combination of at least three of the following
symptoms:
•
•
•
•
•
•
weakness
slow walking speed
significant weight loss
exhaustion
low physical activity
depression
Mississauga Halton Regional Hospice Palliative Care
Early Identification & Prognostic Indicator Guide
Clinical Indicators - Dementia
All of:
•Unable to walk without
assistance
•Urinary and fecal
incontinence
•No consistently meaningful
verbal communication
•Unable to do self-care without
assistance
•Reduced ability to perform
activities of daily living
Plus any of:
• Weight loss
• Urinary tract Infection
• Severe pressures sores (
stage 3 or 4)
• Recurrent fever
• Reduced oral intake
• Aspiration pneumonia
Mississauga Halton Regional Hospice Palliative Care
Early Identification & Prognostic Indicator Guide
Future Direction
• Transition from prognosis/diagnosis-based
triggers to needs-based triggers
• Symptom-based
• Functional-based
• Psychosocial-based
52
Traditional communication
models fall short
53
The trouble with traditional models of
communication
• Ask-Tell-Ask principle
– Begin with open ended questions
– Use answers to frame discussion, confirm understanding
• Examples:
– What is the most important issue for us to talk about today?
– What makes life worth living for you?
– Are there any outcomes that would be “fates worse than
death”
• Responding to emotion/assessing readiness
54
Communication in frailty may be
different
1. Cognitive impairment (dementia/delirium) is prevalent
•
•
•
Capacity is more than just cognition
SDM is often involved from the outset
Advance directives (and their pitfalls) apply
2. Health and treatment options are complex
•
•
Lots of uncertainty in the natural history
Informed decisions require A LOT of information
3. The decisions made will affect the entire circle of care
•
•
“Patient-centered” care must include the caregiver
Autonomy may not be the most important ethical consideration
4. The role of the physician goes beyond diagnosis and
treatment
•
•
The role of recommendations, guidance, navigation
Ability to press on, in the face of conflict
55
High threshold to generate understanding
– Volandes et al.
– Normal subjects, asked to make decisions about
treatment if they had very severe stage dementia
– Detailed verbal narrative
– Then video with same narrative
%
Before
% After
Limited or comfort care
68
97
Life prolonging care
21
0
Uncertain
11
3
Apatira L et al. Annals IM 2008. 149 (12): 861
Volandes AE, et al. Arch Intern Med 2007;167(4):828-833
56
Case: Mr. B
• 78M with dementia and severe COPD
• (FEV1/FVC 25%)
• Lives with wife
• Dysphagia, recurrent aspiration pneumonia
– 4 admissions in 3 months despite modified diet
• Admitted with pneumonia: NPO, ABX, team
considering G tube but concerned about operative
risk/code status
– His wife (SDM) wants “everything done”
Mr. B
• When wife approached about goals of care,
became angry:
– “I don’t understand why you keep asking me this.
I’ve already made my decision. I want everything
done!”
• Are we done here?
Decision making capacity
• SDMs are frequently involved in care planning
by proxy
• Dementia is common in frailty/frail spouses
• But we never assess the cognition/capacity of
an SDM
– “She’s not our patient!”
– We have a duty of care to ensure whoever is
making decisions has capacity
1. Okonkwo et al., Neurology 2008;71:1474-1480.
2. Dening et al., Int Psychogeriatr 2011;23:1535-1551.
Cognition is not sufficient for capacity
• Health crisis is an intensely emotional time
• Emotionality is associated with poor executive
function and inability to cognitively engage
with decision making1
• Learned helplessness2:
– Disengagement, avoidance, withdrawal
1. Mitchell and Phillips. Neuropsychologia 2007;45:617-629
2. Sullivan et al., Chest 2012;142:1440-1446.
Impact of emotionality on provider
• Clinicians are trained to heal
• Our response to feeling helpless1
– Anger, resignation, shame
– Anxiety: we have to do SOMETHING!
• We must reframe, and help our patients
reframe
• Clinician helplessness indicates engagement
• Frank, honest information/recommendations don’t
destroy hope, they reframe it2
1. Back et al., J Pall Med 2015;18:26-30.
2. Coulourides Kogan et al., J Pall Med 2015;18:1-7
Is autonomy leading us astray?
• Has our emphasis on autonomy, under the
auspice of “patient-centred care”
– Insulated us from having to feel helpless?1
– Clouded our ability to appreciate the benefits of a
more nuanced approach to decision making? 2
1. Back et al., J Pall Med 2015;18:26-30.
2. Hamel R. Second Opin 1995;20:75
Strategy
• Be aware of the impact of emotionality and
“helplessness”
– Impact on patient capacity
– Impact on provider micromanagement
• Take autonomy off its pedestal
– Feminist ethics may be better suited to the nuances
of complex decision making
– Enlarge the circle of care
• Consider guided decision making
Mr. B
• Asked wife if there was someone else who could hear
the information and help with decision making
• Discussion with daughter:
“I know they’re both terrified of death. My mom is
worried that refusing resuscitation will mean the staff
will give up on him. He doesn’t want to suffer. He’d be
devastated if he couldn’t go home again”
“I can’t make the decision between life and death for
him”
Mr. B
• Provision of information and recommendations
–
–
–
–
He is in the last chapter of life
A focus on his quality of life (symptoms) is appropriate
Extubation would be difficult
“Recovery” from each health crisis will deliver him to a
state of worsened health
• Daughter decided: no code, no intubation, modified
diet for comfort, antibiotics for now
• Discussion with daughter and wife
– Wife deferred to daughter’s judgment/directive
The burden of decision making
• Being forced to make “life or death” decisions is a
burden
• Patients and SDMs report:
• Confusion: Incomplete information/experience (n = 1)
• Uncertainty: “What if I make the wrong choice?”
• Guilt: “If things get worse, it will be my fault: I have to
consent to whatever they offer”
• The end result:
• Less-informed decision making
• Arguing the intervention instead of the disease as a means of
insulating from guilt
• Fracturing of therapeutic alliance: “we’re not really in this
together”
Strategy
• Reflect on the individualized risks and benefits of
interventions before presenting options to patient
• PATH program includes a structured process to do this
• Is there really a decision to be made?
• What’s medically possible? What’s appropriate?
• What’s socially feasible?
• “Often the truth is that there is no decision to be made;
that the patient’s disease has already made the decision”1
• Litigation is more common when clinicians pursue
aggressive treatments, not when they limit options2
1. Roeland et al., J Pall Med 2014;17:415-420
2. Milani AAA. Wash Lee Law Rev 1997;54: 148-228
Shared decision making
• Shared decision-making continuum1
– Patient-driven care vs provider-driven care
• The clinician is responsible for determining
the appropriate level of patient autonomy
when assessing treatment decisions
– Patient values, culture, personality, limitations of
medical science, the disease itself
– Maladaptive coping necessitates more providerdriven care
1. Kon AA. JAMA 2010;304:903-904
Maladaptive coping cues
• Emotional distress/reactivity:
– “I don’t care what you say…”
– “I don’t know!. You people tell me nothing!”
• Fixation on specific points:
– “But my labs are fine!”
– “We can’t let him die of pneumonia in this day and age!”
• Repetitive questions
– “Why can’t you just take the cancer out?”
• Avoidance:
– “Only god knows. Whatever will be will be”
Palliative Paternalism1
• Clinician directed approach to communication that
– Uses limited open-ended questions
– Uses well-informed discrete options during discussions
– Is grounded in compassion and humility
• Goal is to minimize the burden of choice and avoid nonbeneficial care
• When you experience maladaptive coping, it’s time to
take a more directive approach
– Direction does not close the door to discussion
– Follow up with empathy and assurance
1. Roeland et al., J Pall Med 2014;17:415-420
Strategy
• Identify incapacity beyond cognition
– Embrace and shoulder the emotionality
– Don’t wait for readiness or certainty
• Identify maladaptive coping
• Identify the drivers of unreasonable demands
• Candour and opinion are appropriate
– What is certain
• Reframe hope
– We are going to do everything we can to provide you and
your husband with a comfortable and dignified death
experience
Communication in frailty
Strategy:
1. Assemble the health information
2. Develop your own opinion/recommendation
3. Start with information provision
1. Use clear language
2. Frailty as a life stage
3. Check understanding
4. Discuss current decisions to be made
5. Review “non-decisions” what will not be offered
–
–
Tube feeding in advanced dementia
CPR in advanced frailty
We’re not set up to
understand and respond to
frailty
73
We are not set up to respond to frailty
• Multidisciplinary care
has great potential
• Overlap, duplication,
disorganization, and
expense
• Insufficient
understanding of the
story
• Inappropriate treatment
recommendations
1. This generic phenomenon, widely discussed among team scholars, was described by J. Richard
Hackman in Leading Teams: Setting the Stage for Great Performances
74
74
75
76
Palliative and Therapeutic Harmonization
• The PATH model provides a framework for
identifying frailty and responding to it in a way
that improves patients’ experience and value
for healthcare dollars
• PATH includes:
– Structured clinical models of care
• Primary care, acute care, LTC, rehabilitation
– Change management/training for teams
– Clinical Practice Guidelines for frailty
77
The Principles of PATH
1
Frailty must be at the forefront
2
Information changes medical decision making
3
4
Care planning should be collaborative, guided,
and rigorous
Not all decisions can be made in advance;
guidance during transitions in health is
important
78
PATH Principles in Action
1
Understand
Standardized processes and tools to assemble the
picture of frailty and health trajectory
“What is this patient’s story?”
2
Communicate
Standardized approach to discussion of frailty
and prognosis with the decision-maker (patient
or proxy)
“Did you know?”
Build decision-maker’s skills
3
Plan/empower
“What information do I need to make a
decision?”
Be available during the health crisis.
4
Respond
“Who do I call and when?”
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PATH: Clinical outcomes
• First 420 patients completing the program:
– 225 patients had decisions to make about surgery or
procedures
– 80% of these were cancelled by the patient or their family
• 11% required hospitalization, but were cared for at home
• Ability to respond to health crises prevented ED visits
• Just as important: identifying those who WILL benefit from
interventions
• Misidentified frailty
• High patient/family satisfaction
Moorhouse P, Mallery LH. J Am Geriatr Soc. 2012 Oct 30
80
PATH: Appropriateness
Baseline Measure
OR (95% CI)
Controlled for age
P Value
Frailty (Clinical Frailty Scale)
3.41 (1.39 - 8.38)
<0.005
Dementia Stage (FAST)
1.66 (1.05 - 2.65)
0.03
Ranked Invasiveness of
procedure
1.0 (0.37 - 1.40)
NS
Multivariate analysis: Controlling for baseline age and
frailty, procedure invasiveness showed a trend towards
association with decision to proceed (OR 0.5, 0.2 - 1.0).
Cost Avoidance in Acute Care
•N = 635
Description
Overall cost
avoidance
Frailty Level
Total patient
population
mildly frail
moderately frail
Overall cost severely frail
avoidance by very severely
frailty level
frail
terminally ill
unknown
Intervention
cost
avoided
Avg $
saved
per
patient
$4,566,439
$7,191
44%
635
$1,011,755
$1,416,639
$984,220
$8,502
$10,732
$6,151
44%
54%
51%
119
132
160
$260,900
$3,143
33%
83
$136,736
$3,256
36%
42
$250,231
$9,268
41%
27
Major
intervention
avoided
(%)
Total
#
Patient-specific procedural avoidance dollars and acute care days were estimated by linking the CIHI Patient Costing
82
Database Case Mix Group’s “Estimated Average Costs” and “Average Acute LOS” to the type of procedure avoided,
as recorded in PATH’s clinical outcome database
Themes identified
1. Many procedures are offered that are not indicated
2. Some patients are considered frail, but aren’t
3. Some patients will do well even if forgoing the proposed
intervention
– Others do poorly (most commonly, due to emergence of
other health issues)
4. Some patients and families are relieved at the option of
palliation
– Responding to the health crisis is key to a good
experience
5. Some patients seem very frail while in hospital, but can
improve with physical therapy and appropriate treatments.
With home care and equipment, they can be supported at
home.
6. “Unreasonable” requests for intervention have common
drivers
Case: Mr. C
• 79 M with CLL, severe COPD, CHF, DM, stable
angina, and severe stage vascular dementia
– 3 months earlier: admission to GAU for agitation.
• Precipitated further agitation (prior incarceration)
• Wife brought home AMA
– Now wandering at home, ran into traffic x 2
– Adult Protection: if further episodes, he will be taken
to ER by police for admission
– Wife wants to keep him at home but she is not
sleeping
Mr. C
• Home visit:
• Mildly agitated “trying to get home” with loose
paranoid delusions “I’ve been kidnapped”
• Difficulty understanding instructions
• MMSE 11/30
• No evidence of delirium
• Seroquel 200 mg/d, 5mg olanzepine wafers prn
not helpful
What does the literature say?
• BPSD are prevalent
• BPSD have adverse impacts on function and
caregivers, living arrangements, and costs1
• Although there is modest data for their efficacy in
BPSD (NNTT 5-11)2, there is growing concern
about the risks associated with antipyschotics
(including atypical antipsychotics)
1. AGS Consensus Statement. JAGS 2003;51:1287-1298
2. Banerjee et al. Department of Health, 2009
Risks of antipyschotics
•
•
•
•
•
•
•
Extrapyramidal side effects (EPSE)
Anticholinergic side effects
Alpha blocking: orthostasis
Death: AR = 1% within 3 months
Stroke: AR = 2%
DVT: RR 32%, estimated AR = 0.1% over 1 year
Resulting in Health Canada and FDA warnings and guidelines
that discourage their use
– With the caveat that they may be justified in some patients who are
experiencing extreme distress
1.
2.
3.
4.
5.
CATIE-AD trial. Schneider et al. NEJM 2006;355:1525-1538.
Banerjee S. Department of Health, 2009.
Schneider et al. JAMA 2005;294:1934-1943.
Gill et al. BMJ 2005;330:445.
Parker et al. BMJ 2010;431:4245
• “I think that the rate of use of these is alarming and if
I had an elderly relative in a nursing home, I would
be concerned if they were getting these
medications…”
–Dr. Joel Lexchin
• Suggestions
– Behaviour modification
– Music therapy
88
https://www.thestar.com/life/health_wellness/2013/11/14/antipsychotics_prescribed_to_too_many_seniors_study.html
• High Variability
89
• Use in patients without dementia/psychosis?
90
Pain and suffering re-imagined
• Dame Cicely Saunders
• “Much of our total pain experience is
composed of our mental reaction”1
• “Our goal should be to understand the
experience of suffering in a rounded way”
1. Saunders, C. (1959) Care of the dying 3. Control of pain in terminal
cancer. Nursing Times October 23, 1031-1032, p1032.
Consider
• BPSD are forms of distress in a terminal condition
• Sometimes there is no external antecedent that can
be removed or mitigated
• We are willing to accept the risks associated with
palliative chemotherapy in cancer
– What can we learn from treating cancer pain?
– Constant pain needs constant control: don’t wait for the
pain!
• The current culture regarding these drugs is
impeding our ability to effectively relieve suffering
– The risk may be justified, even if life is shortened
Risk vs. Benefit
• Never consider risk alone
• Atypical antipsychotics are actually effective
• 2 Meta-analyses of RCTs (>7500 patients)
• Heterogeneous results
– Recent reviews
• Atypical mortality risk may be modest (RR 1.06, p=ns)
• Conventional mortality risk same as placebo
Greenblatt and Greenblatt. J Clin Pharm 2016
Tan et al. Alzheimers Res Ther. 2015;7(1):20.
Hulshof et al. J Am Med Dir Assoc. 2015;16(10):817– 24.
93
Other treatment options?
• Pharmacologic
– SSRIs for depression (Class IV evidence)
• Nonpharmacologic
– 40 studies- significant risk of bias
– Effective interventions
• Staff training, Mental health consultation
• Exercise, recreational activities
• Music therapy
– Cost/feasibility?
Sorbi et al. European Journal of Neurology 2012, 19: 1159–1179.
Seitz et al. JAMDA 13 (2012) 503-506.
94
Mr. C
• Discussion with wife
– He has multiple end stage health issues
– Intractable agitation
• Started nozinan 5mg PO TID
– Goal: in bed, or chair. Able to walk with assistance
– Reviewed typical risks but also decreased PO
intake, AKI, DVT or pneumonia associated with
sedation
2 days later
• Docile and sedate
• Difficulty understanding speech, speaking
nonsense
• Caregiver exhaustion/abandonment prompted
urgent inpatient admission
– Nozinan given prn but whenever awake, violent with
staff, persecutory delusions
• Midazolam s/c used prn
– Could not achieve consensus that nozinan should be
given regularly
What is the real issue here?
• Our discomfort with antipsychotics is part of a
bigger problem
• 2015 European Association of Palliative Care
Delphi Panel:
– Could not agree on the applicability of palliative
care in the dementia trajectory
• “Palliative care, with its goals of improving
quality of life, maintaining function, and
maximizing comfort, applies throughout the
full disease trajectory in dementia”
• Unfortunately:
– Most of our patients with dementia have several
other comorbidities that limit life
– We’re terrible at knowing when the end is near
Strategy
• Consider the internal suffering associated with
BPSD (“total pain”)
• Contextualize treatment plan within life stage
and suffering
• Embrace the risk in order to unburden the
family, and ease total pain
• Acknowledge overuse, but also acknowledge a
role for antipsychotics in palliation
Pain management
• Prevalence of pain 72% in age >85
• Pain affects cognitive, emotional pathways
• Association with depression, wandering, aggression,
resistance to care
• Behavioural changes more pronounced in
mild-moderate dementia
• Placebo and expectation effects diminished
• Heterogeneity of dementias?
Achterberg et al. Clin Interven Aging 2013;8:1471-82.
100
Issues with Pain Management
• Poor evidence base
• Assessment challenging, behaviours different
•
•
•
•
•
Somatic vs. Visceral
Neuropathic
Functional
Psychic
Chronic vs. Acute
• Poor training among staff, usual scales
unreliable
Achterberg et al. Clin Interven Aging 2013;8:1471-82.
101
Issues with Pain Management
• Too much pain vs. Too much analgesia
• Dementia patients receive less opioid, low potency
• Possibly more acetaminophen
102
Achterberg et al. Clin Interven Aging 2013;8:1471-82.
Possible strategies
• Small studies, potential for bias
• Consider untreated pain as explanation for
behavioural symptoms
• Stepwise approach
• Acetaminophen
• Increasing doses of opioid
• Targeting to pain behaviours (validated scale)
• Dedicated pain teams
103
Case: Mrs. D.
• 86F Sent from LTC for functional decline
• HTN (130/75), DM2 (HbA1C 7.2%)
• Nonischemic cardiomyopathy (EF 40%)
• Alzheimer dementia (Severe), Severe frailty
• CRF- Creat 130-150
• RFR- Bacteriuria on routine culture
• Meds- ASA, Amlodipine, Atorvastatin,
Alendronate, Glyburide, Insulin sliding scale,
Pantoprazole, Donepezil, Colace, Digoxin,
Multivitamin, Vitamin B12, Iron
Polypharmacy
• Common problem with important
consequences.
• 2/3 of Cdn seniors take >5 meds
• Risk of errors, interactions, ADRs, noncompliance
• Up to 40% of frail elderly given inappropriate meds
• 30% of hospital admissions age >75
Farrell et al. Canadian Family Physician. Dec 2013;59(12):1257-1258.
Scott et al. Medical Journal of Australia. Oct 6 2014;201(7):390-392.
Noncomfort Medication Use
• Review of 70 pts near EOL
• Final week of life
• 40 CM doses
• 41 NC doses
• 3 NC meds stopped
• 4 new NC meds started
– 14% of NC meds stopped on
day of death/discharge to
PCU
Ma and Downar. AJHPM 2013
Background
• Deprescription is widely advocated, but
there are many barriers.
• AGS- Beers Criteria
• Palliative Medication guidelines
• Poor appreciation of harms
• Concerns about precipitating acute event, balancing
risks and benefits
• Messaging- “too sick to benefit from this med”
Reeve et al. Drugs Aging 2013;30:793-807.
MEdication RAtionalization (MERA)
• Pharmacy-focused intervention
• Patients with advanced illness and/or palliative
philosophy
• Deprescription of nonbeneficial medications
• Addition of PRN comfort medications
MERA Process
Intro
MERA
Review
Team
Review
Patient
Review
• Eligible patients are enrolled
• Study is introduced to the patient
• Survey is administered (ESAS, BMQ, PATD)
• MERA team reviews diagnosis, prognosis, goals of care and survey results of patient.
• Then using evidence-based criteria, make recommendation about stopping, changing or
adding medications
• MERA team attends patients rounds/GIM team meeting
• Suggested changes are reviewed and discussed with the team
• MERA team discusses approved recommendation with patient and family, to seek their input
and consent for the changes.
• MERA team notifies GIM team to make patient-approved medication changes in medical
record
• Summary report is given to patient
Results - Intervention
• 54 patients enrolled (40% > age 80)
– Elevated risk of 6 month mortality
– Recommended changes for 96% of patients
• Intervention (average/pt):
• 3.0 medications were stopped
• 0.9 medications changed
• 0.2 medications added
• Very high acceptability to team/pts
• 90% acceptance from GIM team
• 95% acceptance from Patients
Results- Patient Attitudes
I would like to reduce the
number of medications that I am
taking.
If my doctor said it was possible I
would be willing to stop one or
more of my regular medications.
0% 20% 40% 60% 80% 100%
1- Strongly Disagree
2- Disagree
4- Agree
5- Strongly Agree
3- Uncertain
Results
• Total 197 Medications recommended to stop
• Top 5 classes of medications that were stopped.
MERA Medication Class
# of Stopped Medication
Vitamins/Minerals
55 (28%)
Lipid Lowering Agents
20 (10%)
Homeopathic/Herbal
Supplements
14 (7%)
Proton Pump Inhibitors
14 (7%)
Docusate
7 (4%)
• 55% of all stopped medications
Medication References
• Beers Criteria (JAGS 2015;63:2227-2246)
• STOPP/START (Age Ageing 2015;44:213218)
• Choosing Wisely (US)
• Choosing Wisely Canada
Medications to review…
• ASA/Antiplatelets
• 1ry vs. 2ry prevention?
• Digoxin
• Dose >0.125 mg (STOPP/Beers)
• Antihypertensives
• Don’t start if BP <150/90 in elderly (CW USA)
• Lipid-lowering agents
• Not if life expectancy <6mo (CW USA)
Medications to review…
• Acetylcholinesterase inhibitors• Assess for cognitive benefit, GI effects (CW USA, CWC)
• Oral hypoglycemics/Insulin• Not if HbA1C <7.5 (CWC)
• 7.1-8.5 for limited life expectancy, comorbidities… (Cdn
Diabetes Association)
– CW USA
• 7.0 - 7.5% in healthy older adults with long life expectancy
• 7.5 – 8.0% in moderate comorbidity, life expectancy < 10y
• 8.0 – 8.5% in multiple morbidities and shorter prognosis
Medications to review…
• Pantoprazole (PPIs)
• Stop at 8 wks (STOPP) or attempt annually (CWC)
• Bisphosphonates
• Avoid if low risk of fracture (CWC)
• Colace (stool softeners)
• Not alone (CWC)
• Iron
• Avoid high doses (STOPP)
Medications to review…
• Multivitamins
• Not for prevention of CV disease or cancer (CWC)
Case: Mrs. D.
• 86F Sent from LTC for functional decline
• HTN (130/75), DM2 (HbA1C 7.2%)
• Nonischemic cardiomyopathy (EF 40%)
• Alzheimer dementia (Severe), Severe frailty
• CRF- Creat 130-150
• RFR- Bacteriuria on routine culture
• Meds- ASA, Amlodipine, Atorvastatin,
Glyburide, Insulin sliding scale, Pantoprazole,
Donepezil, Colace, Digoxin, Vitamin D, CaCO3,
Vitamin B12, Iron
Other recommendations…
• Don’t use antimicrobials to treat
bacteriuria in older adults unless specific
urinary tract symptoms are present. (AGS)
• Don’t use benzodiazepines or other
sedative-hypnotics in older adults as first
choice for insomnia, agitation or delirium.
(AGS)