Advance Care Planning in

End Stage Renal Disease

Mike Harlos MD, CCFP, FCFPMedical Director, WRHA Palliative CareMedical Director, St. Boniface Hospital Palliative Care

http://palliative.info

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

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.

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.

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.

Family/Friends as Substitute Decision Makers

Obtaining Substituted Judgment

You are seeking their thoughts on what

the patient would want, not what they feel

is “the right thing to do”.

“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?”

Phrasing Request: Substituted Judgment

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 1

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 2

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 3

This plan provides for all available treatment

of all conditions, and includes full CPR.

Advance Care Plan 4

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

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?

Considerations in End-of-Life Decisions

Choices and Non-Choices

Treatment Considered:Are Goals Achievable?

Treatment Considered:Are Goals Achievable?

PossiblePossible Impossible Impossible

Review:

• hopes and goals of treatment – what they are and whose they are

• expected course with and without

• potential burdens and benefits

Review:

• hopes and goals of treatment – what they are and whose they are

• expected course with and without

• potential burdens and benefits

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…”

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…”

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

Useful Approaches in Considering Options

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?

Burdens

Side EffectsPositive Effects

Benefits

(clinical assessment)

(experiential assessment)

“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?”

TALKING ABOUT DYING

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.