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Considerations For Palliative
Care In Dementia
Dec. 3, 2014
Dr. Mike Harlos
Professor and Section Head, Palliative Medicine, University of Manitoba
Medical Director, WRHA Adult and Pediatric Palliative Care
http://palliative.info
Objectives
•
To review the clinical challenges that arise in the
progression of dementia
•
To explore the implications of these predictable
clinical challenges with regards to Advance Care
Planning
•
To review approaches to symptom management
and communication issues in providing palliative
care during the final hours or days for patients
with dementia
The presenter has no conflicts of
interest to disclose
Source: CIHR
Prevalence of Dementia Types
• Alzheimer disease most common – 50-80%
depending whether “pure” or “mixed” cases are
included
• Vascular dementia 20-30%
• frontotemporal dementia 5-10%
• dementia with Lewy bodies 4–7.5%
Challenges/Barriers In LTC Setting
Staff Challenges
• staffing ratios
• increasing patient needs as
death nears – may be rapid
• training/comfort with palliative
meds
• difficult conversations with
families
System/Administrative
• availability of medications
• policy/procedure support
• overall resources to support
comprehensive end-of-life
care
MD Challenges
• comfort with aggressive use of
opioids for dyspnea, pain
• familiarity with current palliative
approaches to variety of issues (e.g.
alternate medication routes,
complex pain, opioids in renal
insufficiency, bowel obstruction)
• availability for contact by staff and
family, timely responsiveness, onsite assessment 24/7
• time commitment for discussions
with patient/family
Patient/Family Issues
• “treat the treatable” approach
• may have unrealistic expectations
• addressing goals of care
Role of the Health Care Team
• Anticipate changes and challenges
• Communicate with patient/family regarding potential concerns:
 What can we expect? What are the options?
 Not eating/drinking; sleeping too much
 How do we know they are comfortable?
 Are medications making things worse?
 Would things be different in hospital?
• Prepare a plan for addressing predictable issues, including:
 Health Care Directive / Advance Care Plan, particularly
addressing:
1. artificial nutrition and hydration?
2. treatment of life-threatening pneumonia at end of life
3. transfer to acute care
 Medications by appropriate routes for potential symptoms
WRHA ACP Levels
C
M
R
Comfort Care - Goals of Care and interventions are directed
at maximal comfort, symptom control and maintenance of
quality of life excluding attempted resuscitation
Medical Care - Goals of Care and interventions are for care
and control of the Patient/Resident/Client condition The
Consensus is that the Patient/Resident/Client may benefit
from, and is accepting of, any appropriate investigations/
interventions that can be offered excluding attempted
resuscitation
Resuscitation - Goals of Care and interventions are for
care and control of the Patient/Resident/Client condition
The Consensus is that the Patient/Resident/Client may
benefit from, and is accepting of, any appropriate
investigations/ interventions that can be offered including
attempted resuscitation
The three ACP levels are simply starting
points for conversations about goals of care
when a change occurs
Comfort
Medical
Resuscitation
Displacing the Decision Burden
“If he could come to the bedside as healthy as he was a
month ago, and look at the situation for himself now,
what would he tell us to do?”
Or
“If you had in your pocket a note from him telling you
that to do under these circumstances, what would it
say?”
Life and Death Decisions?
• when asked about common end-of-life choices, families may
feel as though they are being asked to decide whether their
loved one lives or dies
• It may help to remind them that the underlying illness itself is
not survivable – no decision can change that…
“I know that you’re being asked to make some very difficult choices
about care, and it must feel that you’re having to make life-and-death
decisions. You must remember that this is not a survivable condition,
and none of the choices that you make can change that outcome.
We know that his life is on a path towards dying… we are asking for
guidance to help us choose the smoothest path, and one that reflects an
approach consistent with what he would tell us to do.”
● Tube feeding will rarely be appropriate as it does not prevent
aspiration, prolong life or improve function
● Continuing careful and adapted oral feeding is probably as
safe, maintains food enjoyment and social interaction during
meals and will be the most appropriate course in most cases.
- This may not meet conventional nutritional requirements
● Patients should not be made ‘nil by mouth’ if they wish to try to
eat
Recommendations:
● Feeding tubes are not recommended for older adults with
advanced dementia. Careful hand feeding should be
offered;
- hand feeding is at least as good as tube feeding for the
outcomes of death, aspiration pneumonia, functional status,
and comfort.
- tube feeding is associated with agitation, greater use of
physical and chemical restraints, greater healthcare use due
to tube-related complications, and development of new
pressure ulcers.
AGS Position Statement Recommendations ctd:
2. Efforts to enhance oral feeding by altering the environment and
creating individual-centered approaches to feeding should be part of
usual care for older adults with advanced dementia
3. Tube feeding is a medical therapy that an individual’s surrogate
decision-maker can decline or accept in accordance with advance
directives, previously stated wishes, or what it is thought the
individual would want
4. It is the responsibility of all members of the healthcare team caring
for residents in long-term care settings to understand any previously
expressed wishes of the individual (through review of advance
directives and with surrogate caregivers) regarding tube feeding and
incorporate these wishes into the care plan
5. Institutions such as hospitals, nursing homes, and other care
settings should promote choice, endorse shared and informed
decision-making, and honor individuals' preferences regarding tube
feeding. They should not impose obligations or exert pressure on
individuals, or providers to institute tube feeding
Overall Clinical Approach As Death Nears
1. Are there preexisting medical conditions needing attention
in the final hours?
 e.g. seizure disorder
2. What new symptoms might arise (typically dyspnea,
congestion, agitated delirium – not common for pain to
arise as a new and progressive symptom near death),
3. What are the anticipated medication needs?
 available drugs, including after hours / weekends
 available routes of administration
 staff knowledge, skill, comfort and support in administering
 family understanding of reasons for use
 family and potentially staff misunderstanding about opioid
risks
A Visual Analogue Scale Developed For Nonverbal
Children – May Be Used In Nonverbal Adults
Symptom Prevalence In Final Days
• Dyspnea: 80% +
• Congestion: reported as high as 92%
• Delirium: 80% +
• compromised oral intake – pretty much 100%
• Families who would be grateful for support and
information: must be near 100%
When these issues arise at end-of-life, things
haven’t “gone wrong”… they have gone as they
are inclined to.
Management of Symptoms
Symptom
Drug
Non-Oral Route(s)
Dyspnea
opioid
• sublingual (SL) – small volumes of high
concentration; same dose as oral
• subcutaneous – supportable in most
settings; same dose as IV = ½ po dose
• IV – limited to hospital settings
• intranasal – fentanyl – lipid soluble
opioid; use same dose as IV to start
• Note: Transdermal not quickly titratable
Pain
opioid
see above
Secretions
scopolamine
• subcutaneous
• transdermal (patches; compounded gel)
glycopyrrolate
• subcutaneous
Agitated
Delirium
neuroleptic
• SL– use same dose for all routes
(methotrimeprazine; • subcutaneous (most settings); IV
haloperidol)
(hospital)
lorazepam
• SL – generally use with neuroleptic
Using Opioids/Sedatives In The Final Hours/Days:
Slow”
“Start Low, Go Fast”
• If you start cautiously with an anticipated ineffective dose,
be prepared to titrate up quickly
• “prepared” means attentive, proactive, vigilant, available
(i.e. don’t assume things are fine if nobody calls you)
• “first-dose survival test”
• Reassess early (perhaps later that day even), and
consider increasing to a more “usual” dose
Determining The Correct Opioid Dose
Somewhere in here
Not
Enough
Too
Much
i.e. the opioids are titrated proportionately to achieve
the desired effect
Breakthrough / prn Doses
• breakthrough doses are usually 10-20% of total daily
dose, or equal to the q4h dose
• the correct dose is the one that works – this may vary for
an individual patient, and might be substantially different
between patients
• prn interval for breakthroughs should reflect
pharmacology –i.e. when is it reasonable to repeat?
(enteral 1 hr; subcut 30 min; IV 10-15 min; transmucosal
10-15 min)
• if you want to limit the # breakthrough doses due to
safety concerns, do so by limiting the # doses over a
period, but keep the reasonable interval
Stacking Doses
Opioid
Level
Time
Common Concerns About Aggressive Use
of Opioids at End-Of-Life
• How do you know that the aggressive use
of opioids doesn't actually bring about or
speed up the patient's death?
• “I gave the last dose of morphine and he
died a few minutes later… did the
medication cause the death?”
1. Literature: the literature supports that opioids
administered in doses proportionate to the degree
of distress do not hasten death and may in fact
delay death
2. Clinical context: breathing patterns usually seen in
progression towards dying (clusters with apnea,
irreg. pattern) vs. opioid effects (progressive
slowing, regular breathing; pinpoint pupils)
3. Medication history: usually “the last dose” is the
same as those given throughout recent hours/days,
and was well tolerated
Medications Needed
1. Opioid: pain, dyspnea
2. Antisecretory: congestion
3. Sedative (neuroleptic +/- benzodiazepine):
agitated delirium
Plus
whatever condition-specific medications are
needed (e.g. anticonvulsants)
Dyspnea
● subjective experience of an uncomfortable awareness
of breathing rather than an observation of increased
work of breathing
● diverse potential causes - treat reversible causes, if
appropriate
● oxygen can help in awake patients
● opioids:
o main drug intervention
o uncertain mechanism
o comfort achieved before resp compromise; rate
often unchanged
o may need rapid dose escalation in order to keep up
with rapidly progressing distress
Congestion in the Final Hours
("Death Rattle”)
• Positioning
• ANTISECRETORY:
− scopolamine 0.3-0.6 mg subcut q2h prn
− glycopyrrolate 0.2-0.4 mg subcut q2h prn (less
sedating than scopolamine)
• Consider suctioning if secretions are:
− distressing, proximal, accessible
− not responding to antisecretory agents
Irreversible Agitated Delirium At End-of-Life
• should be considered a medical emergency due to profound
impact on quality of life, dignity, family experience and
memories of the death
What Makes An End-of-Life Delirium Irreversible?
1. Clinical factors:
 no therapeutic options available – e.g.. end-stage liver
failure
 rapid time course
2. Directive from patient/proxy that no further investigations be
done and that interventions focus strictly on comfort
3. Limitations of care setting – e.g. remaining at home to die
 family must be aware that the patient is not likely to be
awake and calm/settled again
 preemptively address potential concerns (family and staff)
that the sedation is speeding up or contributing to the
dying… perhaps more so when continuous infusions are
used
 This concern may not be overtly expressed, however it is
important enough to strongly consider preemptive
discussions
“Sometimes people may be concerned that the
medications are speeding things up, and contributing to
the dying process… is that something that you had
wondered about? Would it be helpful to talk about that?”
The literature indicates that proportionate palliative sedation
does not hasten the dying process when death is imminent
due to the underlying condition1,2,3
1.
Claessens P, Menten J, Schotsmans P, Broeckaert B.; Palliative
sedation: a review of the research literature.; J Pain Symptom
Manage. 2008 Sep; 36(3):310-33
2.
Morita T, Tsunoda J, Inoue S, et al. Effects of high dose opioids on
survival in terminally ill cancer patients. J Pain Symptom Manage
2001;21:282–9
3.
Sykes N, Thorns A. The use of opioids and sedatives at the end of
life. Lancet Oncol 2003;4:312–8.
Palliative Sedation vs. Euthanasia
Palliative Sedation
Euthanasia
Overall Goal
Of The
Intervention
Decrease suffering
Decrease suffering
Immediate
Intent of the
intervention
To Sedate
To Kill
Process
Administration of sedating
drug doses, titrated to effect
Administration of a lethal drug
dose
Immediate
Outcome
Decreased level of
consciousness
Death
Cause of
Death
Underlying Condition (if
guidelines/ standard of care
followed)
The intervention
Helping Families At The Bedside
•
physical changes – skin colour; breathing
patterns
•
individual time alone with patient
•
can they hear us?
•
how do you know they’re comfortable?
•
missed the death
WRHA Symptom Management
Guidelines For Long Term Care
For Pain Or Dyspnea:
Resident on opioids already?
YES
• On PRN only: add scheduled
q4h short-acting opioids
• If on LA oral opioids, switch to
equivalent dose scheduled
short-acting opioids.
• Increase frequency of scheduled
short-acting opioids – Max q4h
• Increase opioid dose by a factor
of 20-100% depending on
clinical context
NO
• Morphine 2.5-5mg PO/SL q4h &
q1h PRN or
• Morphine 1.25mg-2.5mg subcut
q4h & q1h PRN or
• Hydromorphone 0.5mg-1mg
PO/SL q4h & q1h PRN or
• Hydromorphone 0.25-0.5mg
subcut q4h & q1h PRN
(In renal insufficiency, consider hydromorphone rather than morphine)