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Transcript
Considerations For Palliative
Care In Dementia
24th Annual Manitoba Provincial Palliative Care Conference
Sept. 17, 2015
Dr. Mike Harlos
Professor and Section Head, Palliative Medicine, University of Manitoba
Medical Director, WRHA Adult and Pediatric Palliative Care
[email protected]
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
Disclosures / Disclaimers:
Dr. Mike Harlos
Relationships with commercial interests
(Grants/Research Support; Speakers
Bureau/Honoraria; Consulting Fees)
None
Commercial Financial Support / In-kind
Support
None
Potential Conflicts of Interest (e.g.
influencing content of presentation)
None
Steps Towards Mitigating Potential Bias
Not Applicable
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%
Metastatic prostate CA: 3.5 yrs
Metastatic breast CA:
3 yrs
Metastatic colorectal CA: 2.5 yrs
Challenges/Barriers In LTC Setting
Staff Challenges
• staffing ratios
• may have rapid increase in
care needs near death
• comfort/experience with
palliative meds
• time needed to support
families
System/Administrative
• availability of medications
• policy/procedure support
• availability of comprehensive
interdisciplinary team
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
Some Challenges Are Quite Predictable
Predictable Challenges As Death Nears In
Progressive Terminal Illness
• Functional decline – 100%
decreasing mobility + poor insight = Falls Risk
• Compromised oral intake (food, fluids, meds) – pretty
much 100%
• Congestion: reported as high as 92%
• Delirium: 80% +
• 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.
Role of the Health Care Team
1. Anticipate predictable challenges
2. Communicate with patient/family
3. Formulate a plan for care
Role of the Health Care Team
1. Anticipate changes and challenges
2. 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?
3. Formulate 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 not end-points in advance
care planning, but starting points for approaching
care once a change occurs
Comfort
Medical
Resuscitation
“It appears that he has developed pneumonia – he may not
survive this. I see that you have discussed an approach to care
before, and have decided for a comfort-focused level of
care…”
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
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.
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 – Can Customize For Nonverbal Adults
Symptom
Drug
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
(methotrimeprazine;
haloperidol)
lorazepam
Non-Oral Route(s)
• SL– use same dose for all routes
• subcutaneous (most settings); IV
(hospital)
• SL – generally use with neuroleptic
Using Opioids/Sedatives In The Final Hours/Days:
Slow”
“Start Low, Go Fast”
• If you start cautiously, with a conservative dose that
may be ineffective, be prepared to titrate up quickly
• “prepared” means attentive, proactive, vigilant,
available (i.e. don’t assume things are fine if nobody
calls you)
• 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
• usually 10-20% of total daily dose, or = 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 should reflect pharmacology – i.e. when is it
reasonable to repeat? (enteral 1 hr; subcut 30 min; IV 1015 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
• e.g. Morphine 2.5 mg po q1h prn. Call MD if 3 consecutive
doses ineffective. Max 3 doses in 8 hour period
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
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
 most commonly use a neuroleptic +/- a benzodiazepine:
1. neuroleptic such as:
 methotrimeprazine (Nozinan®) 2.5 – 5 mg SL/subcut q4h
plus q2h prn (may need increase to 25 mg or more) OR
 haloperidol (though not very sedating) 0.5 – 2 mg
SL/subcut q4h plus q1h prn (may need increase to 5 mg)
2. benzodiazepine – typically lorazepam 1-2 mg SL q4h plus q2h
prn; may use midazolam if setting supports it
 family must be aware that the patient is not likely to be both awake
and calm/settled again
 preemptively address potential concerns (family and staff) that the
sedation might hasten dying – e.g.:
“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?”
Palliative Sedation
(Sedation for Palliative Purposes)
Sedation for Palliative Purposes is the planned
and proportionate use of sedation to reduce
consciousness in an imminently dying patient,
with the goal to relieve suffering that is intolerable
to the patient and refractory to interventions
acceptable to the patient
Palliative Sedation
(Sedation for Palliative Purposes)
Sedation for Palliative Purposes is the planned
and proportionate use of sedation to reduce
consciousness in an imminently dying patient,
with the goal to relieve suffering that is intolerable
to the patient and refractory to interventions
acceptable to the patient
The intention of the intervention is to sedate, rather than
sedation being the undesired yet predictable side effect
of medications such as opioids or antinauseants
Palliative Sedation
(Sedation for Palliative Purposes)
Sedation for Palliative Purposes is the planned
and proportionate use of sedation to reduce
consciousness in an imminently dying patient,
with the goal to relieve suffering that is intolerable
to the patient and refractory to interventions
acceptable to the patient
Medications are titrated to the lowest effective dose.
Respiratory rate and pattern are watched to prevent
medication-related resp. depression
Palliative Sedation
(Sedation for Palliative Purposes)
Sedation for Palliative Purposes is the planned
and proportionate use of sedation to reduce
consciousness in an imminently dying patient,
with the goal to relieve suffering that is intolerable
to the patient and refractory to interventions
acceptable to the patient
Expected natural death within 1-2 weeks from the
underlying life-limiting condition, to avoid hastening the
death through dehydration caused by prolonged sedation
Palliative Sedation
(Sedation for Palliative Purposes)
Sedation for Palliative Purposes is the planned
and proportionate use of sedation to reduce
consciousness in an imminently dying patient,
with the goal to relieve suffering that is
intolerable to the patient and refractory to
interventions acceptable to the patient
The person experiencing the suffering is in the best
position to judge “intolerable”
Palliative Sedation
(Sedation for Palliative Purposes)
Sedation for Palliative Purposes is the planned
and proportionate use of sedation to reduce
consciousness in an imminently dying patient,
with the goal to relieve suffering that is intolerable
to the patient and refractory to interventions
acceptable to the patient
Proposed interventions may seem minor or routine to the
health care team, but unduly burdensome to the patient
The literature indicates that proportionate palliative sedation
does not hasten the dying process when death is imminent
due to the underlying condition1-4
1.
Maltoni, M., et al. (2009). Palliative sedation therapy does not hasten
death: results from a prospective multicenter study. Annals of Oncology,
20(7), 1163-1169.
2.
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
3.
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
4.
Sykes N, Thorns A. The use of opioids and sedatives at the end of life.
Lancet Oncol 2003;4:312–8.
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