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PALLIATIVE CARE CONSIDERATIONS IN
ADVANCED DEMENTIA
PALLIATIVE CARE CONFERENCE
JUNE 6-8, 2014
DR. MICHAEL GORDON MD MSC FRCPC
Dr. Daphna
Grossman
DR. DAPHNA
GROSSMAN
MD CCFP(EM) FCFP
OBJECTIVES
• To understand the role of palliative care in the
care of the patient with dementia
• To explore approaches to behavioural
challenges associated with dementia
• To explore difference between advanced care
planning and goals of care and how it relates
to the care of patients with dementia
• To explore the specific challenges related to
food/drink VS. hydration/nutrition
Meet Mr. S
• Diagnosed with Alzheimer’s dementia 5 years
ago
• Comorbidities
– CAD
– NIDDM
– Hypertension
– Dyslipidemia
– Osteoarthritis
Meet Mr. S
• Dependent in all ADLs
• Aggressive at home
– Hits
– Yells at his wife
– Refuses to be washed
• Can no longer converse coherently
Family is distressed
Question
When would you consider Mr. S. Palliative?
When he was diagnosed with AD?
When he is admitted to LTC?
When he developed difficulty swallowing?
When family no longer wanted active treatment?
D
Y
Acute Care
I
Palliative Care
N
G
Model Of Palliative Care
•
Primary Care
Integrated
Palliative Care
12 months
EOL
1-3
months
WHO 2012
EAPC Position Statement on Palliative
Care and Dementia
• Dementia can realistically be regarded as a terminal
condition… recognizing its eventual terminal nature is
the basis for anticipating future problems and an
impetus to the provision of adequate palliative care.
• Improving quality of life, maintaining function and
maximizing comfort, which are also goals of palliative
care, can be considered appropriate in dementia
throughout the disease trajectory, with the emphasis
on particular goals changing over time.
Van Der Steen et al. Pall Med 2014
Early
EarlyInvolvement
Involvementof
ofPalliative
Palliative Care
Care
• Improves quality of life
• Decreases symptoms of depression and
anxiety
• Less aggressive interventions at end of life
• Live longer
Temel et al. NEJM 2010
Zimmerman et al Lancet 2014
Issues
Issues that
Thatmust
Mustbe
Beexplored…
Explored…
• Approach to Mr. S’s behaviours
• Trajectory of AD – what can be expected?
• Trajectory of comorbidities – what can be
expected?
• Decision making concerning inter-current
illnesses
• Safety at home/ Alternatives to home
• Support for family
• Plans for future
Behaviours
Son asks:
How aggressively
can we treat
the behaviours?
BPSD
Gauthier et al., Int Psychogeriatrics 2010
BPSD - Treatment
Environmental
Psychosocial
• Routine
• Predictability
• Calm
•
•
•
•
“Complementary”
Pharmacological
•
•
•
•
•
•
•
•
•
•
•
•
•
Physical therapy
Massage therapy
Aromatherapy
Light therapy
Pet therapy
Music therapy
Doll therapy
Careijeira et al., Front Neurol 2012
Gauthier et al., Int Psychogeriatrics 2010
Simulated presence
Re-direction/re-orientation
Montessori Method
Caregiver training
Antipsychotics
Antidepressants
Cholinergic Inhibitors
Memantine
Anticonvulsants
ECT
Mr. K’s Behaviours
PC Approach
Decision on how to treat symptoms when they
are refractory depends on:
1. Severity of symptoms
2. Goals of care and Advanced Care Planning
3. Burden of illness (degree of debilitation)
Mr. K’s Behaviours
PC Approach
Decision on how to treat symptoms when they
are refractory to standard treatment depends
on:
1. Severity of symptoms
2. Goals of care and Advanced Care Planning
3. Burden of illness (degree of debilitation)
Behavioural
BehaviouralScales
Scales
• Cohen Mansfield Agitation Index/Inventory
(CMAI)
• DOS (Dementia Observation System)
• “ABC” Charting
• ABID (Agitated Behaviour in Dementia Scale).
Mr. S
? Measured
Hitting
Which Pain Tool Should I Use?
•
•
•
•
•
Dolphus II (1997)
ADD (1999)
CNPI (2000)
PADE (2003)
PAINAD (2003)
• NOPPAIN (2004)
• Abbey Pain Scale
(2004)
• PACSLAC (2004)
• MOBID (2007)
• Faces
Common Pain Behaviours in Cognitively
Impaired Elder Persons
Facial expressions
Slight frown, sad, frightened face, grimacing, wrinkled forehead,
closed or tightened eyes any distorted expression, rapid blinking
Verbalizations, vocalizations
Sighing, moaning, groaning grunting, chanting, calling out, noisy
breathing, asking for help, verbally abusive
Body movements
Rigid, tense body posture, guarding, fidgeting, increased pacing,
rocking, restricted movement, gait or mobility changes
Changes in interpersonal
interactions
Aggressive, combative, resisting care, decreased social interactions,
socially inappropriate, disruptive, withdrawn
Changes in activity patterns or
routines
Refusing food, appetite change, Increase in rest periods, sleep, rest
pattern changes sudden cessation of common routines, increased
wandering
Mental status changes
Crying or tears, increased confusion irritability or distress
AGS Panel JAGS 2002
Pain Assessment Checklist for Seniors w ith Limited Ability to Communicate (PACSLAC)
Facial Expressions
Present
Activity/Body Movement
Present
Social/Personality/Mood
Grimacing
Decreased activity
Upset
Sad Look
Refusing medications
Agitated
Tighter face
Moving slow
Cranky/Irritable
Dirty look
Impulsive Behaviour (e.g.,
Frustrated
Change in eyes (squinting, dull,
repetitive movements)
Other*
bright, increased movement)
Uncooperative/Resistant to care
Pale Face
Frowning
Guarding sore area
Flushed, red face
Pain expression
Touching/holding sore area
Teary eyed
Grim face
Limping
Sweating
Clenching teeth
Clenched fist
Shaking/Trembling
Wincing
Going into foetal position
Cold & clammy
Opening mouth
Stiff/Rigid
Changes in sleep (please circle):
Creasing forehead
Social/Personality/Mood
Decreased sleep or
Screwing up nose
Physical aggression (e.g., pushing
Increased sleep during day
Activity/Body Movement
people and/or objects, scratching
Changes in Appetite (please
Fidgeting
others, hitting others, striking,
Decreased appetite or
Pulling Away
kicking)
Increased appetite
Flinching
Verbal aggression
Screaming/Yelling
Restless
Not wanting to be touched
Calling out (i.e. for help)
Pacing
Not allowing people near
Crying
Wandering
Angry/Mad
A specific sound or vocalisation
Trying to leave
Throwing things
For pain ‘ow’, ouch’
Refusing to move
Increased confusion
Moaning and groaning
Thrashing
Anxious
Mumbling
Grunting
Copyright © Shannon Fuchs-Lacelle and Thomas Hadjistavropoulos The PACSLAC may not be reproduced without permission
For permission to reproduce the PACSLAC, please contact the copyright holders ([email protected])
Present
How do we quantify pain?
Pain Scale
Faces Scale
International Association For The Study Of Pain. 2001
Bieri et al., Pain 1990
PAINAD
Items
0
1
2
Breathing
Normal
Occasional laboured
breathing. Short
period of
hyperventilation
Noisy labored
breathing. Long
period of
hyperventilation
Negative
Vocalization
None
Occasional moan or
groan. Low level
speech with a
negative or
disapproving quality
Repeated troubled
calling out. Loud
moaning or
groaning. Crying
Facial
Expression
Smiling or
inexpressive
Sad. Frightened.
Frown
Facial grimacing
Body
Language
Relaxed
Tense. Distressed
pacing. Fidgeting
Rigid. Fists
clenched. Knees
pulled up. Pulling or
pushing away.
Striking out.
Consolability
No need to
console
Distracted or
reassured by voice
or touch
Unable to console,
distract or reassure
Score
“Potential value of pain meds to decrease antipsychotics in
nursing homes.”
Back to
Mr. S
You feel that pain may be
contributing to his
behaviours.
He is already on maximum
dose of Tylenol.
You are wondering about
opioids.
Opioids
Risks
Dr. Giulia Perri
Benefits
• Tylenol 1000mg tid
Mr. S’s Pain
Control
• Topical Voltaren
• Morphine 2.5mg
2.5mg morphine = Codeine
30mg/T3
Mr. S
IS THIS GOOD
ENOUGH?
Yelling
Mr. K’s Behaviours
PC Approach
Decision on how to treat symptoms when they
are refractory depends on:
1. Severity of symptoms
2. Goals of care and Advanced Care Planning
3. Burden of illness (degree of debilitation)
Advanced
AdvancedCare
CarePlanning
Planning
Questions we ask:
 DNR – Do Not Resuscitate
 Feeding Tubes
 Transfusions
 Antibiotics
Challenges
ACP
Advanced
Careof
Planning
 Individuals have difficulty predicting what
they would want in future circumstances
 Patients treatment preferences and values
change with change of health
 Discussion focuses on intensive therapies
Prepare for “In The Moment Decisions” by ongoing
discussions about goals of care in the clinical context
Sudore et al Ann Intern Med 2010
Goals Of
of Care
Goals
Care
6 Practical Comprehensive Goals:
1.
2.
3.
4.
5.
6.
Be cured
Live longer
Improve/maintain function/ QOL/ independence
Be comfortable
Provide support for family or caregiver
Achieve life goals
a.
b.
c.
d.
e.
Preparation for death
Remain in home
Address spiritual needs
Strengthen relationships
Achieve personal goals
Kaldjian et al Am J Hosp and Pall Med 2009
Which goals are achievable?
Does the patient understand?
Does the family understand?
Dementia Progression
Prioritization Of Goals
Van Der Steen et al Palliat Med 2013
Mr. K’s Behaviours
PC Approach
Decision on how to treat symptoms when they
are refractory depends on:
1. Severity of symptoms
2. Goals of care and Advanced Care Planning
3. Burden of illness (degree of debilitation)
Palliative Performance Scale
Disease Trajectory
Trajectory ofCancer
Malignant Illnesses
PPS = 40-50%
PPS = 40%
Prognosis < 3 months
Prognosis < 3 months
MMedical Care of the Dying 2006
Trajectory
of
Disease
Trajectory of Illness in Dementia
Dementia
Medical Care of the Dying 2006
Can live for
years with
PPS = 40%
Prognosis
with
PPS = 20%
Prognostic Indicators of 6-month Mortality in Advanced
Dementia
Brown et al. P.Medicine 2012
TREATMENT OF AGITATION
Treatment with
antipsychotics
Dr. Giulia Peri
•
•
•
•
•
Benefits
Risks
Prognosis
Goals of Care
Religious and Cultural
Beliefs
Pharmacological
PharmacologicalApproaches
Approach
1. Antipsychotics
• Haloperidol
• Atypical Antipsychotics
• Phenothiazine
(Methotrimeprazine)
2. Benzodiazepines
• Lorazepam
• Midazolam
EPS
Anticholinergic
Increase risk of Cardiac event,stroke, death
Sedating
Confusion
Falls
Goals of Care
Risks
Dr. Giulia Perri
Benefits
How aggressive should we be in
Treatment
of
Agitation
treating agitation?
PPS 60%
Walking
PPS 50%
PPS 40%
Sitting/In bed
PPS 30%
Mostly in bed
PPS 20%
PPS 10%
Actively Dying
Severity of Symptoms and Goals of Care
Dr. Giulia Perri
Inter-current Illness
Son asks:
Do we need to keep treating the aspiration
pneumonias?
Trajectory
of
Disease
Treatment of Inter-current Illness
Dementia
Medical Care of the Dying 2006
Inter-current
illness
Advanced Dementia and
Inter-current Illness
Over 18 months: The Incidence of:
Pneumonia: 41%
Febrile Episode:
53%
Eating problems:
86%
If the Complication Developed: 6 Month Mortality
Pneumonia
Mortality: 47%
Febrile Illness
Mortality: 44%
Eating problems
Mortality: 39%
Mitchell et al. NEJM 2009
Dr. Giulia Perri
How aggressive should we be in
Treatment
of
Inter-current
Illness
treating agitation?
PPS 60%
Walking
PPS 50%
PPS 40%
Sitting/In bed
PPS 30%
Mostly in bed
PPS 20%
PPS 10%
Actively Dying
Severity of Symptoms and Goals of Care
TREATMENT OF
INTER-CURRENT ILLNESSES
Treatment of intercurrent illness?
•
•
•
•
Goals of Care
Chance of recovery
Current status
Religious and Cultural
Beliefs
You have the right to refuse or withdraw life prolonging treatment
You don’t need to treat underlying illness to achieve symptom control!
Dr. Giulia Perri
Dementia and Palliative Care
• Dementia is seldom recognized as a terminal illness or as being
at high risk for death.
• Pneumonia, Febrile Episodes, and Eating Problems are frequent
complications in patients with advanced dementia, associated
with high 6-month mortality rates.
• Advanced Dementia is associated with a life expectancy similar
to that of metastatic breast cancer and stage IV heart failure.
Mitchell et al J Palliat Med 2004
Sachs et al., J Gen Intern Med 2004
Mitchell et al., NEJM 2009
Dementia
andPalliative
PalliativeCare
Care
Dementia and
•
•
•
•
•
•
Uncontrolled symptoms
Feeding problems
Weight loss
Caregiver stress
Increased frequency of ER visits
Advance care planning/Goals of care
Cultural importance of eating: Does a
feeding tube address this dilemma?
Context (1)
• Food is a universal source of comfort, love,
hospitality, connectivity and lastly nutrition
• All cultures world-wide place food at a very
high level of importance in terms of their
identity
• At the most basic level, food exemplifies a
desire to express love, caring, nurturing and
devotion
Context (2)
• Within the medical context, in almost all
situations the provision of food is bound up
with the total provision of care even when
medical “cure” is no longer possible
• Modern medicine introduced the ability to
provide some sort of “feeding” when the
person was not able to eat in the “normal”
way, usually as a stop-gap until the ability to
eat returned
Context (3)
• Using tubes for feeding patients goes back at
least 3500 years to ancient Greek and
Egyptian civilizations.
• Papyrus evidence suggests that Egyptian
physicians used reeds and animal bladders to
rectally feed patients things like wine, milk,
whey, broth and so on to treat a range of
complaints.
Context (4)
• Rectal feeding would remain the artificial feeding
method of choice for many thousands of years
because: difficulties in accessing the upper GI
tract without also killing the patient
• In 1790 a physician Dr. John Hunter (the
KnifeMan) was doing oral-gastric feeding using a
whale bone covered in eel skin attached to a
bladder pump to feed his nutrient solutions. He is
reported as using mixtures of jellies, beaten eggs,
sugar, milk and wine
Context (5)
• ~1910, two things were notably
happening at roughly the same time.
Dr. Einhorn was experimenting with
nasally-inserted feeding tubes going
into the jejunum (what we would call
now an NJ tube): past the stomach
and into a part of the upper
intestines
Context (6)
• In the 1930s doctors were starting to pioneer
the use of hydrolysate-based formulas in NJ
feeding for those whose stomachs were
compromised in one way or another.
• Mixtures used casein hydrolysate; essentially
skim milk treated and fortified with acid,
pepsin, salt, bicarbonate soda, dextrose and
various vitamins
Context (7)
• One of the big issues with percutaneous
gastrostomies – was the problem of infection
• Until the 1940s there were no really effective
antibiotics: a disincentive to do a gastrostomy
when an NG tube, although a slightly horrible
experience for the patient, could do the job
• With the advent of modern antibiotics: an
explosion in the sorts of surgeries that would be
attempted, and would eventually become
commonplace—along with the safety of PEGs
Context (8)
• Patients taking their nutrition via tube do not
really have a problem with how the solution
tastes, and as more and more advances were
made in materials for tubes, tube placement
surgery and feeding formulas, the formulas
derived from the NASA-led research became
the standard for tube feeding nutrition
Context (9)
• Something else was going on in the 60's and 70's
that related to tube feeding also – far fewer
people were dying: a slow cultural change that
had been gathering pace over the century
• We seemed to become a lot less comfortable
with allowing death to happen if it was at all
avoidable, regardless of circumstances, in much
of Western civilization: a very large factor was
technological
Context (10)
• The miracles of antibiotics, amazing
new drugs, advanced diagnostic and
surgical techniques all combined to
allow us to save lives that we never
before would have been able to save
Context (11)
• Since the last few decades of the 20thcentury,
we've seen an explosion in the number of
feeding tubes placed right across the world,
most pronounced in countries like the USA
• Tube placements have continued to grow
faster than the population, so it would be
reasonable to think currently there might be
half a million to a million people using feeding
tubes in the USA alone
Context (12)
To go along with the boom in numbers of tubefed patients, we now have commercially
available enteral formulas in hundreds of
different variations; many are very similar, just
made by different manufacturers and to
different calorie densities
There are others designed with specific diseases
and patient needs in mind
Context (13)
• With these technological advances in the
ability to provide “nutrition” through one
form of feeding tube or another with relative
comfort and safety the questions ethical and
human questions arises,
• “Should we do this, and if so for whom, and if
so for how long, and what does it say about
the idea of using food as a demonstration of
love, nurturing and affection?”
Case (1)
• 86 year old female with a 6 years history of
progressive dementia, and a previous stroke
which left mildly aphasic and in need of as
PSW for all of her ADLs
• But, was normally alert and able to cooperate
in certain domains
• Able to eat if food cut into small pieces are
soft texture
Case (1)2
• While in Florida for her yearly winter there
with her PSW who had been with her for years
she choked while eating
• PSW tried to administer upper abdominal
compression to now avail
• Paramedics eventually dislodged the bolus of
food but she had by this time suffered brain
damage
Case (1)3
• While in hospital, when it became clear that
she was not going to recover, with the
agreement of her son and daughter (joint
SDMs) she had a gastrostomy tube inserted
• Eventually returned to Toronto and then
transferred to Baycrest for CCC
• She was in minimally conscious state with a
PEG in place
Case (1)4
• Within in a few days after arrival the son
“discovered” an advance directive written 10
years previously. He and sister claim they were
never made aware of it
• AD indicates that she would not want an
“artificial” treatments to keep her alive and
focus of care if she were not to recover should
be “comfort”
• She never discussed with family
Case (1)5
• This discovery triggered a discussion with the
family about what the staff felt their duty
would be to respect her wishes.
• Family agreed to DNR order but other than
that would not agree to curtail and other
inter-current treatments (as for infection)
• Would not agree to stop using PEG
Case (1)6
• Son and daughter indicated that “they could
not live with such a decision”
• Referral to Consent and Capacity Board CCB)
which after thorough review including
witnesses (lawyer who made out the AD)
agreed with Baycrest
• Family appealed decision of CCB
Case (1)7
• Eventually referred to Ontario Superior Court of
Justice
• Witnesses called on both sides
• Ruling found “errors” in the decision by the CCB
(could not be certain that patient truly
understood the implications of her AD)
• CCB ruling overturned
• Patient continues with PEG, has had two
infections treated, has not awakened to any
significant level
Case (2)
• 88 year old male, admitted to palliative care
unit for terminal disease care with a
background of advanced dementia and
metastatic pancreatic cancer with significant
symptoms of pain, and abdominal discomfort
• Came from another PC unit in a facility less
convenient for family to visit
Case (2)
• During first 24 hours after admission, minor
changes made in medication as patient
appeared to be uncomfortable and was
agitated
• Cumulative dose of both analgesics and
neuroleptics not significantly different from
those received in previous facility, other slight
change in neuroleptic
Case (2)3
• On day three eldest daughter and dominant
SDM (shared responsibility) complained
bitterly to nursing director that “we are killing
her father” claiming that “he has been asleep
since he has been here”
• Met to discuss with family
• “Prior to his admission he was fine”
• “He was eating fine and that is how we want
him”
Case (2)4
• Appeared to overlook or deny records we
received from previous setting including
agreement to principles of palliative and “end of
life” care
• Accused of us of wanting him to die “so we could
have the bed and save money”
• Attending physician had only spoken to family
over the phone an not in person. Claims she
“explained” everything clinically to them and how
she was titrating his medications
Case (2)5
• Decision had been made over the phone
when contacted top administer
Narcan®(naloxone) even though last dose of
opiates was 8 hours previously
• All neuroleptics held
• IV fluids provided
• Long discussion with family vis a vis goals of
palliative care
• They were furious and threatening
Case (2)6
•
•
•
•
Patient gradually became more alert
Daughter was able to feed him
Appeared to be in discomfort
Daughter slept next to his bed over-night- next
morning claimed she could not sleep as he was very
“restless”
• Agreed reluctantly to allow us to give “small” doses
of neuroleptics but wanted to be called before each
dose
Case (2)7
• All communications with family whether in person or
on the phone (had a very loud voice) focused on
whether he ate anything or not (she brought in food
from home)
• He became more agitated and clearly expressed
physical discomfort: could no longer swallow food
without choking
• Many meetings: very reluctantly agreed to more
opiates and neuroleptics
Case (2)8
• Died in comatose state with family
present
• No carry through on threats to “report”
the doctors, nurses and facility to the
“authorities” and the media
Case (3)
• 79 year old female transferred from acute care
to Baycrest
• Massive stroke, 2 years after minor stroke with
good recovery
• PEG inserted when clear patient would not
recover ability to eat
• Minimal consciousness: could recognize family
Case (3)2
• After three months in hospital with no
improvement in any domain approached by
son
• “We have to take out the tube; This is not
what we had hoped for or what she would
have wanted”
• Family meeting arranged
Case (3)3
• Son and daughter and senior nursing and SW
staff and “ethicist”- primary care MD could
not attend
• “We had hoped she would improve as she did
after the previous stroke. We do not believe
knowing her that she would have wanted to
be like this”
• Staff agreed that the PEG feeding would be
discontinued
Case (3)4
• When plan communicated to staff they were
“shocked”
• “Why—she is no worse than she has been
since admission—no pressure ulcers, no
discomfort”
• “Isn’t this against the law or nursing
regulations?”
• “Isn’t this equivalent of euthanasia?
Case (3)5
• Could not quiet turmoil despite explaining the
Health Care Consent act and SDM’s duties and
rights to act on
• Attending physician felt “uncomfortable”
about writing the order “for personal and
religious” reasons
• How to resolve?
Case (3)6
• Patient transferred to palliative care unit after
all the information explained
• Patient treated in palliative manner with D/C
of tube feedings and comfort measures
provided
• Death in 10 days in complete comfort
• Family forever grateful
Case (3)7
• Debriefing of staff revealed they felt that “it
happened to fast” and that “they had not
heard directly from the family”
• Felt that had they had enough time they
would have accepted decision and been able
to carry out their duties and commitment to
this patient and family
Lessons learned (1)
• End-of-life and palliative care must be
prepared for before there is a crises
• Must be a deliberate discussion between
affected person and SDMs
• SDMs must agree that they will be able to and
be comfortable to carry out wishes from
either verbal or written directions
Lessons learned (2)
• Discussions (the conversation) likely to require
more than one focused meeting
• Best to be a process of discussion
• If advance directive is written should be with
help of someone (i.e. lawyers) who is
knowledgeable with concepts, concepts and
language so there are no ambiguities should
there be disagreement after the fact
Lessons learned (3)
• Choice of and communication with SDMs very
important
• Choice may require a non-family third party to
avoid family conflict and life-long guilt
• Specific issue of food and Artificial Nutrition
and Hydration must be part of conversation
• Physicians can help by bringing up issue as
part of normal clinical encounters and
discussions
Lessons learned (4)
• Creative ways to deal with the importance of
food within the culture and the comfort of the
person should be sought from knowledgeable
professionals
• Must always recognize the importance of food
and drink in human existence and ANH is not
really the same
Conclusion
• End-of-life and palliative care often have a
component of focus on food and drink and Artificial
Nutrition and Hydration
• Must not minimize their importance
• Must provide honest and knowledgeable information
about all aspects of ANH and support families who
will face the challenge and potential guilt of carrying
out such decisions; even when they know it is the
right decision
“To cure sometim
To relieve often
To comfort alway
Thank You