1. Advanced Care Planning & Final Days

2. Objectives Define Advanced Care Planning Describe steps involved
Review limitations
Review final days

3. What is advanced care planning?
A process of reflection and communication about values, beliefs and goals of care
A process of planning for a time when you cannot make your own medical decisions
A process that involves discussion with healthcare professionals and significant others
A process that may result in an advance health care directive
The decision to engage in advance care planning belongs to the individual, not to the organization or facility

4. increases satisfaction with care
increases family/caregiver/substitute decision-maker satisfaction
improves adherence to wishes
improves quality of life and death
can reduce cost of care

5. Legal “Rules” Legislation in all provinces/territories
Laws not harmonized across the country
different forms of written advance directives recognized
health care team responsible for knowing local rules

6. hippocratic oath
manitoba health care directives act 1992
canadian charter of rights and freedoms
right to life, liberty & security of the person
the mental health act
the vulnerable persons living with a disability act 1996
law reform and CPSM proposed statement 2002
withdrawing and withholding life-sustaining treatment - CPSM 2008

7. Steps to ACP discussion
introduce topic
structure discussions
document
review and update

8. Before starting, be aware of your own concerns
Preconceptions
assumptions
expectations
beliefs/culture/values
goals
experiences
fears
what would you choose
language
relationships with patient and/or family

9. The setting Get permission who is proxy? who do they want present?
Do no appear rushed or distracted
be at eye level and in private space
ask for their expectations
explain the situation as you see it
listen and watch
show empathy

10. Introduce topic Most challenging part
most patients welcome the opportunity
determine patient familiarity
explain process
determine comfort level
Determine substitute decision maker

11. Structure Discussions
Establish role of proxy
provide education
elicit patient’s values and goals

12. Substitute decision maker
must be willing, able to take on role
entrusted to speak for patient
involve in discussions
thorough understanding of patient wishes

13. Education Define key medical terms
explain benefits, burdens of treatments
eg: life support may only be short term
any intervention can be refused
recovery cannot always be predicted

14. Goals and values ask about past experiences
describe possible situations
what would the patient do?
suggest writing a letter
respond to emotional reactions

15. Document formalize directives enter directives into medical record
distribute directives
document changes as necessary

16. Review & update Revisit periodically major life events may change plan
discuss, document changes
ensure primary care provider, substitute decision-maker understand
share new preferences appropriately

17. What are we hoping for As a facility you may want a label
as part of a team you hope for guidance in care
for the family we hope it will allow communication between them about short term goals and possible imminent death

18. Why do we do this?
Patients with serious illness generally understand their diagnosis
But:
Not their prognosis
not the likely outcomes of treatment
they overestimate the probability of a cure or long- term survival

19. Known barriers and pitfalls
What is said? What is heard? What is meant? What is understood
Information gaps
Inconsistent information
inaccurate understanding
confusing information
excessive information
genuine uncertainty of prognosis
language/translation/culture
We never tell someone they are dying in our culture.
Language barrier
Subtle meanings of words may not translate

20. family/team dynamics
conflict within family
whose agenda is influencing decision making
concerns re abilities of surrogate
disagreement amongst professionals involved
treatment/goal confusion
Inconsistent treatments and unclear goals
different priorities disease directed vs comfort directed
multiple medical issues

21. relationship between clinician and the patient/surrogate
genuine value differences
past experiences
lack of trust in health care system
emotions
grief, fear/anxiety, guilt, anger, hope

22. What if there is an impasses?
Ask Who, What, Why, How
What do you call the problem?
How do you think the sickness should be treated?
what do you think the illness does?
How do you want us to help you?
What do you think the natural course of the illness is?
Who do you turn to for help?
Who should be involved in decision making?
What do you fear?
Why do you this illness or problem has occurred?

23. What is really being said? (that is not really being spoken)
What is at stake?
Why are these people upset or angry? What is the larger picture? What might people be reacting to?
Is this a clash of expectations / cultures / beliefs?
Is there a common interest or goal?
What effect are you having on the dispute?

24. Pearls
Consistent communication from the team will often avoid conflict
You need to develop trusting relationships and see the world as it occurs for the patient and family
Have a clear conversation about the decision-making process to avoid conflict or perception of unfairness
Make sure everyone knows and agrees with the goals of care. if everyone knows the destination and is on the same page, then the importance of who “drives the bus” is reduced

25. Drop the desire to win
Have a ready access to conflict resolution such as mediation
learn from situations of conflict - debrief
Understand the legal process and remedies available if all else fails

26. Pitfalls
Allowing anger / personal experiences / biases to interfere with conflict resolution
Failing to ask for support when it is needed
Taking direction from the wrong substitute decision-maker for an incapable person
Not knowing the law on advance directives and substitute decision-making in your province / territory
Giving up too easily on dispute resolution (legal avenues are a last resort)

27. Final Days

28. Elements of a “good Death” in modern western culture
Pain-free death
Open acknowledgement of the imminence of death
Death at home, surrounded by family and friends
An “aware” death in which personal conflicts and unfinished business are resolved
Death as personal growth
Death according to personal preference and in a manner that resonates with the person’s individuality

29. Main features of approach to care
Perceptive and vigilant regarding changes
“Proactive” communication with patient and family
anticipate questions and concerns
available
don’t present ‘non-choice’ as choices
Aggressive pursuit of comfort
Don’t be caught off-guard by predictable problems

30. Patient care challenges in the final days
Functional decline - transfers, toileting
Can’t swallow meds - route of administration
Terminal pneumonia - dyspnea, congestion, agitated delirium
Concerns of family and friends

31. Concerns of patients, family, and friends
How could this be happening so fast?
What about food and fluids?
Things were fine until the medicine was started?
Isn’t the medicine speeding this up?
Too drowsy!
Too restless!
We’ve missed the chance to say goodbye
What will it be like? How will we know?

33. Family/friends wanting to intervene with food/fluids
Distinguish between prolonging living and prolonging dying
Parenteral fluids not needed for comfort
Pushing calories in terminal phase does not improve function or outcome
“We can’t just let him die”
‘Not letting him die’ implies that you can ‘make him live’. The living vs dying outcome is dictated by the disease, not by what you or the family decides to do

34. 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?

35. First, let’s talk about what you should not expect.
pain that can’t be controlled.
breathing troubles that can’t be controlled.
“going crazy” or “losing your mind”
If any of those problems come up, we will make sure that you’re comfortable and calm, even if it means that with the medications that we use you’ll be sleeping most of the time, or possibly all of the time.
Do you understand that?
Is that approach OK with you?

36. we won’t let that happen.
You’ll find that your energy will be less, as you’ve likely noticed in the last while.
You’ll want to spend more of the day resting, and there will be a point where you’ll be resting (sleeping) most or all of the day.
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 won’t let that happen.

37. Basic medications in the final days
Opioid - pain, dyspnea
Antisecretory - congestion
Sedative - restlessness, confusion

38. Congestion in the final days/hours “Death Rattle”
Positioning
Antisecretory - Scopolamine
mg SC q1h pro
Transdermal gel 0.25mg/.1mL (.5mg q4h and q1h prn)
Transform V patch 2-3

39. Changes in respiration
Cheyne-stokes
Rapid, shallow
Agonal

40. Two ‘Roads’ to death

41. Decreasing consciousness
‘The usual road…’
Increasing drowsiness
Eventually unarousable
absence of eyelash reflex - profound level of coma

42. Terminal delirium ‘The difficult road…’ Medical management
Neuroleptics: haldol, methotrimeprazine
Benzodiazepines: midazolam
Support for family

43. ?