Keeping the Promise

1
The Final Days
Keeping the Promise of Comfort
2
Cancer
Discontinued Dialysis
End-StageLung Disease
Stroke
Post-99 Ischemic Encephalopathy
Neuro- Degenerative

• Bedridden
• Cant clear
• secretions
• Pneumonia
• Dyspnea, Congestion,
• Agitated Delirium

3
Main Features of Approach to Care

• Perceptive and vigilant regarding changes
• Proactive communication with patient and
  family
• anticipate questions and concerns
• available
• dont present non-choices as choices
• Aggressive pursuit of comfort
• Dont be caught off-guard by predictable problems

4
Predictable Challenges in the Final Days

• Functional decline- transfers, toileting
• Cant swallow meds- route of administration
• Terminal pneumonia
• dyspnea
• congestion
• deliriumgt 80 At times agitation
• Concerns of family and friends

5
Concerns of Patients, Family, and Friends

• How could this be happening so fast?
• What about food fluids?
• Things were fine until that medicine was started!
• Isnt the medicine speeding this up?
• Too drowsy! Too restless!
• Confusion hes not himself, lost him already
• What will it be like? How will we know?
• Weve missed the chance to say goodbye

6
Which Came First....The Med Changes or the
Decline?
Steady decline
7
The Perception of the Sudden Change
When reserves are depleted, the change seems
sudden and unforeseen. However, the changes had
been happening.
That was fast!
Melting ice diminishing reserves
Day 1
Day 3
Day 2
Final
8
Family / Friends Wanting to InterveneWith Food
and / or Fluids

• discuss goals
• distinguish between prolonging living vs.
  prolonging dying
• parenteral fluids generally not needed for
  comfort
• pushing calories in terminal phase does not
  improve function or outcome

9
Consider Concerns About Food And Fluids
Separately
Conflicting evidence regarding effect on thirst
in terminal phase cannot be dogmatic in
discouraging artificial fluids in all situations
Strong evidence base regarding absence of benefit
in terminal phase
10
Time that death would have occurred without
intervention
Patients Lifetime
Extending the final days in terminal
illness Prolonging life or prolonging the dying
phase? Consider carefully the rationale of
trying to prolong life by adding time to the
period of dying
11
OBTAINING SUBSTITUTED JUDGMENT
You are seeking their thoughts on what the
patient would want, not what they feel is the
right thing to do.
12
PHRASING REQUEST SUBSTITUTED JUDGMENT
If he could come to the bedside as healthy as he
was a year 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 what to do under these circumstances, what
would it say?
13
TALKING ABOUT DYING
Many people think about what they might
experience as things change, and they become
closer to dying. Have you thought about this
regarding yourself? Do you want me to talk about
what changes are likely to happen?
14

• First, lets talk about what you should not
  expect.
• You should not expect
• pain that cant be controlled.
• breathing troubles that cant be controlled.
• going crazy or losing your mind

15
If any of those problems come up, I will make
sure that youre comfortable and calm, even if it
means that with the medications that we use
youll be sleeping most of the time, or possibly
all of the time. Do you understand that? Is that
approach OK with you?
16
Youll find that your energy will be less, as
youve likely noticed in the last while. Youll
want to spend more of the day resting, and there
will be a point where youll be resting
(sleeping) most or all of the day.
17
Gradually your body systems will shut down, and
at the end your heart will stop while you are
sleeping. No dramatic crisis of pain, breathing,
agitation, or confusion will occur -
we wont let that happen.
18
Basic Medications in The Final Day(s)
SYMPTOM MEDICATION
Pain Opioid
Dyspnea Opioid
Secretions Scopolamine
Restlessness Neuroleptic (haloperidol or methotrimeprazine) / benzodiazepine
19
DYSPNEA An uncomfortable awareness of breathing
20
DYSPNEA ...the most common severe symptom in
the last days of life
Davis C.L. The therapeutics of dyspnoea Cancer
Surveys 1994 Vol.21 p 85 - 98
21
National Hospice Study Dyspnea Prevalence
Reuben DB, Mor V. Dyspnea in terminally ill
cancer patients. Chest 198689(2)234-6.
22
End-of-Life Care in Cystic FibrosisTreatments
Received in Last 12 Hours of Life
Robinson,WM et al, Pediatrics 100(2) Aug.1997
Only 11 were noted to have titration of opioids
at end of life specifically for dyspnea
23
HOW WELL ARE WE TREATING DYSPNEA IN THE
TERMINALLY ILL?
Addington-Hall JM, MacDonald LD, Anderson HR,
Freeling P. Dying from cancer the views of
bereaved family and friends about the experience
of terminally ill patients. Palliative
Medicine 1991 5207-214.

• n 80 Last week of life
• severe / very severe dyspnea 50
• less than ½ of these were offered
• effective treatment

24

Multiple And Diverse Potential Causes Of Dyspnea

• Lung
• parenchyma tumour, infection, fibrosis
  (radiation, chemotherapy)
• pleura (effusion, tumour)
• lymphangitic carcinomatosis
• airway obstruction
• Vascular pulmonary embolism, superior vena cava
  obstruction, vessel erosion with hemoptysis
• Pericardial effusion, restriction by tumour
• Cardiac cardiomyopathy (eg. adriamycin,
  cyclophosphamide)
• Anemia
• Metabolic hypokalemia, hyponatremia
• Neuromuscular neurodegenerative disease,
  cachexia, paraneoplastic myesthenic syndromes
  (Eaton-Lambert)
• Intra-abdominal ascites, organomegaly, tumour
  mass

25
Approach To The Dyspneic Palliative Patient

• Two basic intervention types
• Non-specific, symptom-oriented
• Disease-specific

26
Simple Non-Specific Measures In Managing Dyspnea

• calm reassurance
• patient sitting up / semi-reclined
• open window
• fan

27
Non-Specific Pharmacologic Interventions In
Dyspnea

• Oxygen - hypoxic and ? non-hypoxic
• Opioids - complex variety of central effects
• Chlorpromazine or Methotrimeprazine - some
  evidence in adult literature caution in children
  due to potential for dystonic reactions
• Benzodiazepines - literature inconsistent but
  clinical experience extensive and supportive

28
TREAT THE CAUSE OF DYSPNEA - IF POSSIBLE AND
APPROPRIATE

• Anti-tumor chemo/radTx, hormone, laser
• Infection
• Anemia
• CHF
• SVCO
• Pleural effusion
• Pulmonary embolism
• Airway obstruction

29
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 leads the need for titration
• Dosage should be titrated empirically may easily
  reach doses commonly seen in adults
• May need rapid dose escalation in order to keep
  up with rapidly progressing distress

30
CONGESTION IN THE FINAL HOURS Death Rattle

• Positioning
• ANTISECRETORY Scopolamine, glycopyrrolate
• Consider suctioning if secretions are
• distressing, proximal, accessible
• not responding to antisecretory agents

31
A COMMON CONCERN ABOUT AGGRESSIVE USE OF
OPIOIDS IN THE FINAL HOURS
How do you know that the aggressive use of
opioids doesn't actually bring about or speed up
the patient's death?
32
SUBCUTANEOUS MORPHINE IN TERMINAL CANCER
Bruera et al. J Pain Symptom Manage. 1990
5341-344
33
Typically, With Excessive Opioid Dosing One
Would See

• pinpoint pupils
• gradual slowing of the respiratory rate
• breathing is deep (though may be shallow) and
  regular

34
COMMON BREATHING PATTERNS IN THE FINAL HOURS
35
DOCTRINE OF DOUBLE EFFECT
Wilkinson J. Oxford Textbook of Palliative
Medicine 1993 p 497-8
Where an action, intended to have a good effect,
can achieve this effect only at the risk of
producing a harmful/bad effect, then this action
is ethically permissible providing

1. The action is good in itself.
2. The intention is solely to produce the good
   effect (even though the bad effect may be
   foreseen).
3. The good effect is not achieved through the bad
   effect.
4. There is sufficient reason to permit the bad
   effect (the action is undertaken for a
   proportionately grave reason).

36
Mount B., Flanders E.M. Morphine Drips,
Terminal Sedation, and Slow Euthanasia
Definitions and Fact, Not Anecdotes J Pall
Care 124 1996 p 31-37
The principle of double effect is not confined to
end-of-life circumstances
Good effects
Bad effects
37

• The difference in aggressive opioid use in
  end-of-life circumstances is that the bad
  effect Death

• The doctrine of double effect exists to support
  those health care providers who may otherwise
  withhold opioids in the dying out of fear that
  the opioid may hasten the dying process
• A problem with the emphasis on double effect is
  that there in an implication that this is a
  common scenario. in day-to-day palliative care
  it is extremely rare to need to even consider its
  implications

38
DONT FORGET...For death at home

• Health Care Directive no CPR
• Letters (regarding anticipated home death) to
• Funeral Home
• Office of the Chief Medical Examiner
• Copy in the home
• physician not required to pronounce death in the
  home, but be available to sign death certificate