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The Final Days
Keeping the Promise
of Comfort
Mike Harlos MD, CCFP(PC), FCFP
Professor and Section Head, Palliative Medicine, University of Manitoba
Medical Director, WRHA Adult and Pediatric Palliative Care
http://palliative.info
Objectives
By the end of this presentation, participants will be
able to:
• understand the common clinical challenges as death
nears due to progressive illness
• be aware of common concerns of families as death nears
• describe the management of dyspnea, delirium, and
congestion in the final days of life
There are no “do-overs”
in managing a death
End of life can arise…
Sudden, immediate death
(seconds/minutes) – little opportunity
for anticipating & managing symptoms
Not so sudden/immediate –
potential for anticipating and
addressing “threats to comfort”
Progressive illness
• cancer
• neurodegenerative illness
• end-stage organ failure
Acute Event
• severe brain injury (CVA, anoxia, trauma)
• sepsis
• inoperable surgical conditions
Final common pathway
• bedridden
• weak, swallowing impaired, poor airway protection, can’t
clear secretions; pneumonia – dyspnea, congestion
• delirium – agitation
Predictable Challenges As Death Nears In
Progressive Terminal Illness
• Functional decline – 100%
• Compromised oral intake (food, fluids, meds) –100%
- Families concerned about this – pretty much 100%
• Congestion: reported as high as 92%
• Dyspnea: 80% + as death nears
• Delirium: 80% +
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 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 a different care setting?
3. Formulate a plan for addressing predictable issues, including:
 Health Care Directive / Advance Care Plan / LAD (if at
home)
 Medications by appropriate routes for potential symptoms
Clinical Considerations As Death Nears
1. Preexisting medical conditions needing attention?
• not usually necessary to continue ongoing medical
management of underlying illnesses, with the possible
exception of seizure disorder
2. Potential new symptoms – typically dyspnea,
congestion, agitated delirium
• Pain not commonly new/escalating in final hrs
• Anticipate loss of oral route
3. Anticipated concerns of family
Medications Most Commonly Needed
1. Opioid: pain, dyspnea
2. Antisecretory: congestion
3. Sedative (antipsychotic +/- benzodiazepine):
agitated delirium
Plus
whatever condition-specific medications are
needed (e.g. anticonvulsants)
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
scopolamine
Secretions
glycopyrrolate
Agitated
Delirium
antipsychotic
(methotrimeprazine;
haloperidol)
lorazepam
• subcutaneous
• transdermal (patches; compounded gel)
• subcutaneous
• SL– use same dose for all routes
• subcutaneous (most settings); IV (hospital)
• SL – generally use with neuroleptic
Dyspnea In The Palliative Patient
• subjective experience of breathing distress rather than an
observation of increased work of breathing
o i.e. it is something experienced rather than diagnosed
• many causes (infection, anemia, pulm. embolism,
hemorrhage, tumour infiltration/obstruction, etc.)
• increasing incidence as death nears; can escalate quickly
• in non-verbal patients, typically look for increased work of
breathing plus signs of distress (frightened appearance,
grimacing, restlessness)
• severe dyspnea in advanced terminal illness usually
portends an imminent death
Approach To Dyspnea In The Final Hours/Days
• if clinically feasible and consistent with goals of care,
consider addressing potentially reversible causes
(uncommon if death is imminent)
• might be helped by repositioning, using a fan, open
window (cool air)
• supplemental O2 – questionable role; depends on
context
• opioids are main pharmacological intervention
• anxiolytics may have a role if there is a strong anxiety
component
Role of O2 In Palliative Patients
•
not a straightforward issue
•
supplemental O2 may prolong the natural dying
process
•
the awake hypoxic patient feels less dyspnea with O2
o often nasal prongs are better tolerated than mask,
regardless of oximetry
•
the unconscious/comatose patient does not likely
experience air hunger – consider discussing tapering
supplemental O2
Opioids in Dyspnea
• Uncertain mechanism
• Comfort achieved before resp compromise; rate
often unchanged
• Often patient already on opioids for analgesia; if
dyspnea develops it will usually be the symptom that
drives the need for titration
• Dosage should be titrated empirically
• May need rapid dose escalation in order to keep up
with rapidly progressing distress
Opioid Use in Final Days/Hours
• doses depend on degree of distress, existing opioid
tolerance
• short-acting opioid in order to respond quickly to
changing symptoms (e.g. dyspnea)
• if patient is on transdermal fentanyl, consider leaving this
as is, and adding short-acting morphine or
hydromorphone, titrating to effect
• the effect of a prn (as-needed) dose will be evident by 1h
by all routes. The interval between prn doses should not
exceed one hour – a longer interval will cause needless
suffering
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. Medication history: usually “the last dose” is the
same as those given throughout recent hours/days,
and was well tolerated
3. Clinical context: breathing patterns usually seen in
progression towards dying (clusters with apnea,
irreg. pattern) vs. opioid effects (progressive
slowing, regular breathing; pinpoint pupils)
Changes not related to opioids…
Cheyne-Stokes
Rapid, shallow
“Agonal” / Ataxic
In circumstances of excessive opioid dosing, there is
virtually always as associated clinical context (aggressive
medication titration, complex opioid conversions) and the
following physical signs:
•
pinpoint pupils
•
gradual slowing of the respiratory rate
•
breathing is deep (may be shallow) and regular
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)
− 1% atropine ophthalmic drops (1-2 drops)
administered SL/buccally may reduce oral secretions
but not likely pulmonary congestion
• Might consider suctioning if secretions are distressing,
proximal, accessible, and 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 treatment options available; 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
Considerations Regarding Aggressive Sedation
● Meds titrated to effect… the correct dose is “the one that works”
within acceptable adverse effects, and is proportionate to the
distress
● Tend to use a antipsychotic +/- benzodiazepine; subcutaneous
route is most common, but can use SL
● Methotrimeprazine (Nozinan®) commonly used; others include
olanzapine, haloperidol
● Can add a benzodiazepine such as sublingual lorazepam
● Commonly need regular intermittently scheduled doses (e.g.
q4h or q6h) plus a prn dose of q1h prn
● prn medication orders must allow “stacking” doses… i.e.
repeating a dose if needed by the time it should have worked
(typically an hour would be the longest time)
Examples of Sedation Orders in Final Hours
Note:
• these are conservative starting doses… may need higher
• some patients may just need prn dosing
● Antipsychotics
 methotrimeprazine (Nozinan®) 2.5 – 5 mg subcut/SL q4-8h
regularly plus q1h prn
 haloperidol 0.5 -1 mg subcut/SL q6-8h regularly plus q1h prn
● Benzodiazepines (not recommended for use without
neuroleptic; may exacerbate agitated delirium)
 lorazepam 0.5 – 1 mg SL q4-6h plus q1h prn
Supporting Families
● effective sedation changes the beside dynamics from
one in which people are afraid to visit and there is no
meaningful interaction to one in which people can talk,
read, sing, play favourite music, pray, tell stories, touch.
● Health care team has a role in facilitating meaningful
visits… family/friends may not know “the right things to
do”
● Individuals may want time alone but be reluctant to ask
others (friends/family) to leave the room. The health care
team can suggest that this might be something that the
family can explore with each other
Supporting Families With Regards To
Sedation
● effective sedation can allow families to talk, read, sing,
play music, pray, tell stories, etc. without causing
agitation.
● health care team has a role in facilitating meaningful
visits… family/friends may not know “the right things to
do”
● individuals may want time alone but be reluctant to ask
others (friends/family) to leave the room. The health care
team can suggest that this might be something that the
family can explore with each other
● can they hear us?
• 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 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 wonder if 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- 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 – cyanosis; breathing patterns
• how do you know they’re comfortable?
• missed the death
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?
• Families may feel as though they are being asked to decide
whether their loved one lives or dies – i.e. to choose life/death
• It may help to remind them that the underlying illness itself is
not survivable – no decision they make 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.”
The Temptation of Treatability
• In general, people do not die of the underlying lifelimiting condition, but from its complications –
pneumonia; sepsis; bleeding; organ failure; etc.
• Families may say “We know he is going to die from his
cancer, but we can’t just let him die from pneumonia –
people don’t die from pneumonia these days”
• You can find yourself being drawn by the “temptation of
treatability” into a course of micromanaging the dying
process that would have otherwise unfolded naturally,
predictably, and usually calmly
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 trivial to the
health care team, but unduly burdensome to the patient