Advance Care Planning in
End Stage Renal Disease
Mike Harlos MD, CCFP, FCFP
Medical Director, WRHA Palliative Care
Medical Director, St. Boniface Hospital Palliative Care
http://palliative.info
Advance Care Planning
Advance Care Planning is the process of dialogue,
knowledge sharing, and informed decision-making that
needs to occur at any time when future or potential
end-of-life treatment options and preferences are being
considered or revisited.
The primary goal of Advance Care Planning is to seek
consensus on care plans that reflect the best interests
of clients/patients/residents.
Advance Care Planning
Process to determine the general
direction of care choices…
“Which way is the
wind blowing in
the approach to
care?”
Manitoba Health Care Directives Act
 Must be competent, aged 16 yrs old or more
 A directive must be in writing and dated (witness not required
unless physically incapable of signing)
 “No person is required to inquire into the existence of a directive
or of a revocation of a directive”
 “No action lies against a person who administers or refrains from
administering treatment to another person by reason only that the
person
a) has acted in good faith in accordance with the wishes
expressed in a directive or in accordance with a decision
made by a proxy; or
b) has acted contrary to the wishes expressed in a directive if
the person did not know of the existence of the directive or its
contents.
Substitute Decision Makers
The following, in order of priority, may act as substitute decision-makers:
1. A proxy named in a Health Care Directive.
2. A Court-Appointed Committee appointed under section 75(2) of the
Mental Health Act, or a Substitute Decision-Maker for Personal Care
appointed under the Vulnerable Persons Living with a Mental Disability
Act. A Committee or a Substitute Decision-Maker for Personal Care
may be an individual(s) or the Public Trustee. Some Orders of
Committeeship were previously known as “Orders of Supervision”.
Existing Orders of Supervision are treated as Orders of Committeeship
under the Mental Health Act.
3. Others, including family and/or friends.
Family/Friends as Substitute Decision Makers
• likely to be the most common scenario.
• For ACP, must have the support of all interested and
available parties.
• usually, but not necessarily, a close relative, who speaks
for all.
• may, however, be a supportive friend
• Power of Attorney does not entitle its holder to make
health care decisions however…
 on occasion, an existing power of attorney may be
most appropriate to fulfill this role, since such an
individual, although limited to property decisions,
has obviously been placed in a position of trust.
Obtaining Substituted Judgment
You are seeking their thoughts on what
the patient would want, not what they feel
is “the right thing to do”.
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 that to do under these circumstances, what
would it say?”
Advance Care Plan 1
This is often referred to as palliative or comfort care. It
focuses on aggressive relief of pain and discomfort. There is
no CPR (intubation, assisted ventilation, defibrillation, chest
compressions, advanced life support medications). There
are also no life sustaining or curative treatments such as
ICU, tube feeds, transfusions, dialysis, IV’s, and certain
medications. All available tests and treatments necessary for
palliation are done, including medications and transfer to
hospital if necessary.
Advance Care Plan 2
This provides palliative and comfort care, but also allows for
treatment of reversible conditions (e.g. pneumonia, blood
clot) that may have developed. There is no CPR.
ICU, all available tests, and treatments for reversible
conditions are offered, based on medical assessment, except
for CPR. Certain tests and treatments for any reversible
conditions may be refused based on your values (e.g., tube
feeds, dialysis, ICU, transfusions, IV’s, certain medications,
certain tests, transfer to hospital, etc.)
Advance Care Plan 3
This provides any necessary palliative and comfort care as
above, plus available treatment of all conditions, both
reversible and nonreversible, with no restrictions, except for
CPR. There is no CPR.
As above, a person may elect to refuse any tests or
treatments for both nonreversible and reversible conditions. If
so, they should be listed:
Advance Care Plan 4
This plan provides for all available treatment
of all conditions, and includes full CPR.
Communication Considerations
 Consider the patient & family as a culture new to you
 If you don’t know how things work, it’s best to
observe and inquire.
 Don’t make assumptions about how things work in
this family (“micro-culture”) based on ethnicity or
religion (“macro-culture”)
 How much does the patient want to know, and how to
inform (directly, or through family)?
 With the unresponsive patient, ask family where they
would like to hold discussions… in front of patient, or
privately
Considerations in End-of-Life Decisions
 What does / would the patient want done?
 What is actually possible to address?
 What is the “domino effect” of the test or
intervention (where will it take you, and what
will you do about it?)
 What is the “ripple effect” on others?
Choices and Non-Choices
Treatment Considered:
Are Goals Achievable?
Possible
Review:
• hopes and goals of treatment
– what they are and whose
they are
• expected course with and
without
• potential burdens and
benefits
Impossible
Discuss, but do not present as
an option only to be withdrawn
as such when asked for…
Rather, explain why this will not
be pursued / attempted
Eg: “You might be wondering
why we can’t just…”
Useful Approaches in Considering Options
 Put the decision in the context of the last month or so:
 Momentum of functional decline
 Quality of life
 For substituted decisions: have there been recent
comments reflecting a probable approach?
 “I’ve had enough… I wish this would end soon”
 Consider the difference between prolonging living and
making someone take longer to die.
 A concept that depends on interpretation of the
quality of life… need input from patient / family
Treatment / Intervention Considerations
 What are the goals of the treatment?
 Whose goals are they, and are they consistent with
those of the patient?
 Is it possible to achieve the goals?
 What are the:
 Positive effects vs. Side effects (clinical
assessment by health care team)
 Benefits vs. Burdens (experiential interpretation by
patient / family)
 Is there enough reserve to tolerate the treatment?
Benefits
Positive Effects
(experiential assessment)
(clinical assessment)
Burdens
Side Effects
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?”
First, let’s talk about what you should not
expect.
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, I 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?
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.