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Palliative Care Overview
Feb. 19, 2014
Mike Harlos MD, CCFP, FCFP
Professor and Section Head, Palliative Medicine, University of Manitoba
Medical Director, WRHA Adult and Pediatric Palliative Care
Clinical Lead, Canadian Virtual Hospice
Fred Nelson BA, MSW, RSW
Psychosocial Specialist, WRHA Palliative Care
Janice Nesbitt RN, MN
Clinical Nurse Specialist, WRHA Adult and Pediatric Palliative Care
http://palliative.info
The presenters have no
conflicts of interest to
disclose
Objectives
• To provide an overview of various elements of palliative
care, including communication and decision making,
symptom management, supporting families, and self care
• Consider unique challenges in your specific care setting
• Review challenging cases, considering potential
approaches to care
Communication In
Palliative Care
A Foundation For Approaching Care
Anticipating Predictable Issues
• Most palliative clinical issues & patient/family concerns are very
predictable and can be addressed proactively rather than
reactively
• don’t assume that silence = no concerns
• engaging patients/families proactively conveys your
understanding of their concerns and an ability to address them,
e.g.:
 functional decline (weakness, transfer problems, risk of
falls) – pretty much 100% of patients
 decreased food/fluid intake – virtually all patients affected
and all families become concerned
 are the meds causing the sleepiness, or the decline?
 would care be managed differently somewhere else?
 how long can this go on? what will things look like?
Potential Ways To Start Conversations
• “You might be wondering why your Mom is…
• “Many people in these type of situations wonder
about…”
“Is this something you’d like to talk about?”
Be Clear
“The single biggest problem in communication is the illusion
that it has taken place.”
George Bernard Shaw
• people often speak “around” difficult topics
• messages need to be clear, though not brutally blunt.
• you can start with a “vague and gentle”, paced approach
– however you may need to be increasingly direct
• intuitive approach to how blunt and direct you need to be
Suggested Framework For Responding To
Difficult Questions
1.
Acknowledge/Validate and Normalize
“That’s a very good question, and one that we should talk about. Many
people in these circumstances wonder about that…”
2.
Is there a reason this has come up?
“I’m wondering if something has come up that prompted you to ask this?”
3.
Gently explore their thoughts/understanding
• “It would help me to have a feel for your understanding of your
condition, and what you might expect”
• “Sometimes when people ask questions such as this, they have an idea
in their mind about what the answer might be. Is that the case for you?”
4.
Respond, if possible and appropriate
• If you feel unable to provide a satisfactory reply, then be honest
about that and indicate how you will help them explore their
concerns
12
The Perception of the “Sudden Change”
Even in the context of a slowly progressive disease, when
the reserves are depleted there is a sudden change, which
to the family can seem shockingly abrupt
That
was
fast!
Melting ice = diminishing reserves
Day 1
Day 2
Day 3
Final
Helping Families At The Bedside
 physical changes of dying (colour, breathing
patterns) can be upsetting
 do family members might want individual time
alone?
 can they hear us?
 missed the death
Framing Decisions For Substitute Decision Makers
• Rather than asking family what they want done for their loved
one, ask what their loved one would want for themselves if
they were able to say (“If he could tell us…”)
• may seem like life-and-death decisions – however 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.”
Pain Assessment &
Management
TYPES OF PAIN
NOCICEPTIVE
Somatic
•
•
•
•
•
•
•
bones, joints
connective tissues
muscles
sharp
dull & aching
can localize site
may be worse with
movement
(“incident pain”)
Visceral
NEUROPATHIC
• difficult to describe; not a
typical “pain”
• numb; burning; tingling;
crawling; stabbing; etc
• allodynia
• consider it as a possible
element of any difficult
pain syndrome
• Organs –
heart, liver,
pancreas, gut,
etc.
• may be crampy, or
dull & aching
• referred pain
• difficult to localize
Palliative Approach To Bone Mets
• Prevent SREs – zoledronate (may also help pain)
• consider spinal cord compression in back pain
• Analgesia
- RadTX
- Perhaps acetaminophen, though likely not potent enough
- NSAIDs – cautiously
- Opioids – consider renal function in selection
- Neuropathic adjuvants for neuropathic or challenging pain
- Perhaps corticosteroids
• Fracture risk?
- Plain films of involved areas
- Consider orthopedic opinion RE fracture risk, prophylactic
surgery
Approach To Pain Control in Palliative Care
1. Thorough assessment
• History – including detailed description of pain;
psychosocial, spiritual, & cultural context; concerns
about what the pain means; medication history
• Physical Examination – don’t forget neuro exam
2. Pause here - discuss with patient/family the goals of care,
hopes, expectations, anticipated course of illness. This will
influence consideration of investigations and interventions
3. Investigations – X-Ray, CT, MRI, etc - if they will affect
approach to care
4. Treatments – pharmacological and non-pharmacological;
interventional analgesia (e.g.. Spinal)
5. Ongoing reassessment and review of options, goals,
expectations, etc.
A Visual Analogue Scale Developed For Nonverbal
Children – May Be Used In Nonverbal Adults
Strong Opioids
• most commonly use morphine, hydromorphone, fentanyl,
methadone, oxycodone
• codeine not used; high variability in metabolizing to
morphine
• usually reasonable to start with morphine, unless significant
renal impairment
• caution when switching opioids – incomplete cross
tolerance; consider dividing calculated dose by half
• usually divide by half when changing from oral to parenteral
• use short-acting drugs in unstable pain (or dyspnea)
• tolerance, physical dependence ≠ addiction
• prescribe laxatives concurrently
“Start Low, Go Slow”
Fast”
• If you start cautiously with an anticipate ineffective dose,
be prepared to titrate up quickly
• “first-dose survival test”
• Reassess early (perhaps later that day even), and
consider increasing to a more “usual” dose
• Of course, rapid upwards titration of long acting drugs
such as methadone or the fentanyl patch would be
inappropriate; short-acting opioids are used to rapidly
achieve analgesia
Opioid Dosing Considerations
• doses proportionate to the degree of distress are safe
• anticipate and preempt predictable (“incident”) pain
• dose increases 10% - 100%, depending on the context; usually
should achieve steady state between increments
• breakthrough doses are 10-20% of total daily dose
• correct dose = “the one that works” within accepted adverse effects
for both the regular and the breakthrough doses
 somewhere between “not enough” and “too much”; empirically
titrated to effect
• 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 # doses, do so by keeping a reasonable
interval (allowing “stacking”), but limit the # doses over a period
Spectrum of Opioid-Induced Neurotoxicity
Opioid
tolerance
Mild myoclonus
(eg. with sleeping)
Delirium
Opioids
Increased
Severe myoclonus
Seizures,
Death
Hyperalgesia
Agitation
Misinterpreted
as Pain
Opioids
Increased
Misinterpreted
as Disease-Related Pain
Adjuvant Analgesics
 drugs which primarily have non pain indications but
which may provide or potentiate analgesia in certain
circumstances
 used in pain poorly-responsive to opioids (eg.
neuropathic pain), or to lower the total opioid dose and
thereby mitigate opioid side effects
 General / Non-specific: corticosteroids
 Neuropathic Pain: gabapentin; antidepressants (TCAs;
SNRIs- venlafaxine, duloxetene); ketamine; clonidine;
cannabinoids
 Bone Pain: bisphosphonates
Gabapentin
 Common Starting Regimen
– 300 mg hs Day 1, 300 mg bid Day2, 300
mg tid Day 3, then gradually titrate to effect
up to 1200 mg tid
 Frail patients
– 100 mg hs Day 1, 100 mg bid Day 2, 100
mg tid Day 3, then gradually titrate to effect
Palliative Care In The
Final Days
Final Common Pathway
Progressive Illness
•cancer,
•neurodegenerative illness
•organ failure (heart,
kidney, lung, liver)
Sudden Health Conditions
•non-survivable brain injury
(CVA, anoxia, trauma)
•sepsis
•inoperable surgical conditions
(ischemic gut or limbs)
• bedridden
• weak, swallowing impaired, poor airway
protection, can’t clear secretions;
pneumonia – dyspnea, congestion
• delirium – agitation
Considerations In The Final Hours
1. Are there preexisting medical conditions needing
attention in the final hours?
 not typically necessary to continue ongoing medical
management of underlying illnesses, with the possible
exception of seizure disorder
2. What new symptoms might arise (typically dyspnea,
congestion, agitated delirium – 80-90%), and related
medication needs?
 Uncommon for pain to arise as a new symptom in final
hours
 What are the available routes of medications
administration?
3. Anticipated concerns of family
Role of the Health Care Provider
• Anticipate changes
• Prepare a care plan for predictable issues, including:



plan for addressing loss of mobility, self-care, food/fluids
medications by appropriate routes for potential symptoms
Health Care Directive and/or Advance Care Plan, and
Letter of Anticipated Home Death for patients at home
• Preempt concerns/questions:







what can we expect?
how long can this go on? what will things look like?
not eating/drinking; sleeping too much
are medications causing the decline?
how do we know they are comfortable?
can they hear us?
don’t want to miss being there at time of death
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
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
SUBCUTANEOUS MORPHINE IN
TERMINAL CANCER
Bruera et al. J Pain Symptom Manage. 1990; 5:341-344
100
90
80
Pre-Morphine
70
Post-Morphine
60
50
40
30
20
10
0
Dyspnea
Pain
Resp. Rate
(breaths/min)
O2 Sat (%)
pCO2
Common Concerns About Aggressive Use
of Opioids at End-Of-Life
• How do you know that the aggressive use
of opioids for dyspnea 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
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
What Makes A Delirium Irreversible
At End Of Life?
1. Clinical factors:


Refractory to available interventions, eg. recurrent
hypercalcemia after multiple bisphosphonate
treatments
No therapeutic options available – eg. end-stage
liver failure
2. Directive from patient/proxy that no further
investigations be done and that interventions focus
strictly on comfort
3. Limitations of care setting chosen by patient/family –
e.g. a steadfast commitment to remain at home to die
Sedation Considerations
● Meds titrated to effect… the correct dose is “the one that works”
● Tend to use a neuroleptic +/- benzodiazepine; subcutaneous route is
most common, but can use SL
● Methotrimeprazine (Nozinan®) commonly used, as haloperidol is
less sedating… however be aware that its anticholinergic effects
may potentially aggravate the delirium
● Can add a benzodiazepine such as sublingual lorazepam
● Commonly need regular intermittently scheduled doses (eg. q4h or
q6h) plus a prn dose of q1h prn
● prn medication orders must allow “stacking” doses… i.e. repeating a
dose once its empirical effect should have occurred, yet before it has
begun to lose effect
38
Examples of Sedation Orders in Final Hours
Note:
•these are conservative starting doses… may need higher
•some patients may just need prn dosing
● Neuroleptics
 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
39
Supporting Families When Sedation Is Chosen
● 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”
40
Understanding Families
 Communication Patterns
 Boundaries
 Role flexibility
 Alliances
 Family rules
Resilient Families
 Family Belief Systems: adversity perceived as a shared
challenge; normalize distress as part of life, avoid
blame
 Organization Patterns: flexibility, ability to coordinate,
support one another
 Communication: elicit and share accurate information,
tolerate and encourage open emotional expression
Zaider & Kissane(2007)
What Do Families Need?
 Acknowledgement
 Understanding
 Trusting relationship
 Communication
 Teamwork
 Healthy Caregivers
Reflective Activity
 Am I taking care of myself well enough to do this
kind of work?
 Do I offer myself the same kind of compassion that
I offer those in need?
 When do I sit down to just sit with the reality of my
vulnerability?
Chris Marchand (2008)
Exploring Obstacles to Self Care
 Self care is selfish and that if you act selfishly you
should feel guilty
 Everyone else’s needs should be met first and
then if you have time or energy left over you can
look after yourself
 Self care is a luxury for the rich and famous that
requires huge amounts of time and money
Katherine Murray (2009)
Ask Yourself
Write down your favourite belief/reason for not taking
care of yourself and then ask:
 Is this belief true?
 Does this make sense?
 Is this how I want things to be?
 Does this belief serve me well?
Katherine Murray (2009)
Self Care Begins with Self Awareness
“When we do not feel valued it is hard for us to value
others.
When we feel invisible, it is hard for us to see and
acknowledge others.
When our own spirits are dying of starvation, with no sign of
nourishment in sight, it is impossible for us to feed and
nurture the bodies and spirits of those in our care who are ill
or dying.
We have nothing to give if we are literally running on
empty.”
Elizabeth Causton
Exquisite Empathy
 Highly present
 Sensitively attuned
 Well-boundaried
 Heartfelt empathic engagement
 Invigorated rather than depleted by connections
Kearney et al (2009)
Resources
• WRHA Palliative Care Physician Consultants are available 24/7
for physician-to-physician consults through St. Boniface
Hospital Paging (204)-237-2053
• Canadian Virtual Hospice: http://virtualhospice.ca
• Hospice & Palliative Care Manitoba: http://manitobahospice.ca
• http://palliative.info - resources/presentations
• WRHA Palliative Care Education Rounds
• Telehealth- every second Tuesday from 12:00-13:00
• Call 204-235-3929 if questions