Understanding Advance Care Planning in the Irish Context

Report
Understanding Advance Care
Planning in the Irish Context
Dr Joan Cunningham
Consultant in Palliative Medicine
26th November 2010
What is Advance Care Planning?

Is a process enabling a patient to express wishes
about his/her future health care in consultation with
their health care providers, family members or
significant others

Based on the ethical principle of patient autonomy

Helps to ensure patient’s wishes are respected if the
patient becomes incapable of participating in
treatment decisions
Understanding Advance Care Directives in
the Irish Context
Advance Care Planning assists the patient
to:





understand their medical condition & potential future
complications
understand the options for future medical care
reflect upon their goals, values & personal beliefs
consider the benefits & burdens of current & future
treatments
discuss choices with family/important others &
health providers & document these choices
Understanding Advance Care Directives in
the Irish Context
Advantages of Advance Care Planning



Improves end of life care
Improves family satisfaction
Reduces stress, anxiety and depression in
surviving relatives

“The impact of advance care planning on end of life care
in elderly patients: randomised controlled trial”
BMJ 2010; 340:c1345 KM Detering et al
Understanding Advance Care Directives in
the Irish Context
In Ireland


Advance care planning with patients common
practice in palliative care setting
Patients encouraged to communicate their
wishes for future care:



“I don’t want to go back to hospital”
“I don’t want antibiotics or blood transfusions”
Important to accurately document such wishes in
medical chart & review them at later stage to
ensure wishes have not changed
Understanding Advance Care Directives in
the Irish Context
Advance Care Directive Definition

A term to describe an advanced expression of
wishes by a person at a time when they have the
capacity to express their wishes, about certain
treatment that might arise at a future time when they
no longer have capacity to express their wishes
(Law Reform Commission 2009)

A statement made by a competent adult relating to
the type and extent of medical treatments he/she
would or would not want to undergo in the future if
unable to express consent or dissent at that time
(Irish Council of Bioethics 2007)
Understanding Advance Care Directives in
the Irish Context
Essential Components of an Advance
Care Directive

Patient decides what treatment they want/don’t want in
the event of becoming incompetent

Accurately articulate & lucidly state that preference

Must be available to those making decisions when time
comes to refer to Advance Care Directive

Healthcare professional must be able to understand &
implement directive’s instructions
Understanding Advance Care Directives in
the Irish Context
Legal Validity of Advance Care Directive
in Ireland

Currently no legislation in Ireland in relation to
Advance Care Directives

To date an Advance Care Directive in Ireland has
never been judicially challenged

Many organisations have made recommendations or
called for legislation
Understanding Advance Care Directives in
the Irish Context
Law Reform Commission

Independent statutory body

2009 published report on Bioethics: Advance
Care Directives

46 specific recommendations & a draft
Mental Capacity (Advance care Directives)
Bill
Understanding Advance Care Directives in
the Irish Context
Main recommendations of Law Reform
Commission on Advance Care Directives

A legislative framework should be enacted

Informed decision making should be a guiding
principle

An advance care directive should be applied if the
treatment is specified in it, all circumstances outlined
are present & no evidence that author changed their
mind

A code of practice drafted to provide guidance on
the creation & execution of Advance Care Directives
Understanding Advance Care Directives in
the Irish Context
Advance Care Directives in the USA

Legally valid many years:

Patient Self Determination Act 1990

Estimated that 20% hospital population have written
advance care directive

High uptake:
 Terminally ill, higher income, college education, female,
white
Poor uptake:
 Ethnic minorities, high school education, lower
socioeconomic groups

Understanding Advance Care Directives in
the Irish Context
Are there potential problems with Advance
Care Directives?

How can a lay person document a specific preference for
a future medical event which they may have little
understanding or previous experience of

Vague statements may lead to problems with
interpretation:

“If my condition is deemed terminal or it is determined
that I will be permanently unconscious that I be allowed
to die & not kept alive through life support system”
Understanding Advance Care Directives in
the Irish Context
“Medical Directive”

Avoid problem of vague statements by writing a
more specific type of medical directive

Focuses on discrete diagnostic & therapeutic
interventions

Format clinical scenarios e.g in coma, altered
mental state, terminal illness, followed by various
medical interventions

Patient marks which management plans/treatments
are acceptable
Understanding Advance Care Directives in
the Irish Context
Medical Directive

Aims to communicate information about
patient’s values, goals & treatment
preferences

Aims to provide evidence to base medical
decisions on, when patient lacks capacity
Understanding Advance Care Directives in
the Irish Context
Are choices stable over time?

An Advance Care Directive could have been
written years previously

There may have been significant developments in
treatment options since the Advance Care
Directive was written

Do preferences change with time or with changes
in health or emotional status?
Should there be an expiry date on Advance Care
Directive?

Understanding Advance Care Directives in
the Irish Context
In Ireland

Little written or published in relation to Advance
Care Directives in Ireland:


In 2004 an IHF study on attitudes to death & dying
suggested a 14% uptake of Advance Care Directives
In 2006 a study by Butler et al in IMJ “Dissatisfaction with
Do Not Attempt Resuscitation Orders: a nationwide study of
consultant physician practices”

47/173 (27%) had experience of caring for patient with an
Advance Care Directive
Understanding Advance Care Directives in
the Irish Context
“Irish Views on Death and Dying: a
National Survey”
J McCarthy et al Journal of Medical Ethics 2010;36:454-458


Telephone survey: 667 participants
Asked about their:



Experience & understanding of death
Awareness of end of life terminology
Decision making
Understanding Advance Care Directives in
the Irish Context
“How much do you know about Advance
Directives?”

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
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Know a great deal
Know a fair amount
Know just a little
Heard of but know nothing
Never heard of

1% (10%)
2% (15%)
13% (28%)
13% (15%)
71% (31%)
Also asked “How much do you know about living
wills?”
Understanding Advance Care Directives in
the Irish Context
What to do if presented with an Advance
Care Directive from a now incompetent
patient:

In first instance satisfy yourself that:



there is no reason to believe the patient was
incompetent when writing their advance care
directive,
he fully understood the consequences
there is no question of undue influence
Understanding Advance Care Directives in
the Irish Context
What to do if presented with an Advance
Care Directive from a now incompetent
patient:

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Assess if current situation matches that envisaged
by patient
Is there any evidence of change of heart?
Consider if there have been medical developments
in between making the directive & its activation
which may have swayed the maker?
Consider seeking advice from colleagues/ethics
committee/indemnity organisation or institution’s
legal advisers
Understanding Advance Care Directives in
the Irish Context
Summary




Public education on advance care directives
is essential
Actively encourage patients to participate in
advance care planning
Encourage patients to discuss their wishes
with their families
Wishes should be documented & available
Understanding Advance Care Directives in
the Irish Context

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