Transcript Welcome to St Christophers

Advance Care Planning
(ACP)
Deborah Holman
End of Life Care Specialist Nurse
Gold Standards Framework Facilitator
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‘Our lives begin to end the
day we become silent about
things that matter.’
-- Martin Luther King, Jr.
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What is ACP?
 ACP is a process that aims to initiate conversations
between individuals and their care providers.
 Usually in the context of an anticipated deterioration in the
individual’s condition in the future.
 According to personal preference an individual may or may
not involve family and friends.
 It is a tool for individuals to register their views and
maintain their autonomy given that most elderly people
have already given some thought to the end of their life.
 It has the advantage of enabling individuals to influence
their provision of care and shape the end of their lives
according to their personal preferences and choices.
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The key underpinning principals in this
process include:
 The process is voluntary and therefore no one is
obligated to take part in this process.
 Confidentiality must be respected.
 The process is a reflection of society’s desire to
value individual’s autonomy.
 All health and social care workers should be
open to any discussions that may be instigated
by an individual and acquire the appropriate
training to communicate effectively and
understand the legal and ethical issues involved.
 Each person must be aware of their own
limitations and understanding.
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 Discussion should focus on the views of a
competent individual even if family or carers are
invited to participate. The discussion should only
be instigated if it is in the best interests of the
individual.
 The individual must have the capacity to
understand, discuss options and agree to
whatever is planned. Individuals must be able to
make informed decisions.
 Agreement must be documented as must
refusals to treatment.
 Documented information should be made
available to out of hours service providers to
enable continuity.
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Mental Capacity Act April 2007
 To have “mental capacity” means that a person is able to make
decisions for themselves. The legal definition says that
someone who lacks capacity cannot do one or more of the
following four things:
• Understand information given to them.
• Retain that information long enough to be able to
make a decision.
• Weigh up the information available to make a decision.
• Communicate their decision. This could be by any
possible means, such as talking, using sign language or
even simple muscle movements such as blinking an eye
or squeezing a hand.
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The mental capacity act has
five main principles:
 Assume a person has capacity unless proven otherwise
 Do not treat a person as incapable of making a decision
unless every attempt to help them has been made
 Do not treat a person as incapable of making a decision
because their decision may seem unwise
 When making decisions for people without capacity always
do so in their best interest
 Before doing something to someone or making a decision
on their behalf, consider whether you could achieve the
outcome in a less restrictive way
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Advance decisions and statements;
previously known as living wills.
 Living will is a legal document that spells out the types of
medical treatments and life-sustaining measures you do
and don't want.
Living wills became a “catch all” for general statements
about persons wishes, preferences and specific refusals
of treatment.
Not generally a term used by professionals now.
 An Advance Decision allows you to record your wish to
refuse certain types of medical treatment‚ and will be
binding on the people providing your care if you lose the
capacity to make the decision at the relevant time.
 An Advanced Statement allows you to record your
personal wishes, preferences and views. It can relate to
any part of your life and include your values and beliefs.
It must be taken into account when making “best
interest” decisions but is not legally binding.
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It is still possible to make a advance decision if a person is
diagnosed with a mental illness, as long as they can show
that they understand the implications of what they are doing.
They need to be competent to make the decision in question,
not necessarily to make other decisions.
Therefore it is preferable for such a person to put their
wishes in writing and explain:
 why they have made their decision about how they
do/don't want to be treated
 what they understand about the treatment they are
agreeing to or refusing
 why they are making these decisions now
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Limitations on advance decisions
 A person cannot use an advance decision to:
 ask for their life to be ended
 force doctors to act against their professional judgment
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Lasting Power of Attorney (LPA)
You can create two types of LPA:
 Property and Affairs LPA
A Property and Affairs LPA allows you to choose someone
to make decisions about how to spend your money and
the way your property and affairs are managed.
 Personal Welfare LPA
A Personal Welfare LPA allows you to choose someone to
make decisions about your healthcare and welfare. This
includes decisions to refuse or consent to treatment on
your behalf and deciding where you live. These decisions
can only be taken on your behalf when the LPA is
registered and you lack the capacity to make the decisions
yourself.
 LPA only be used after it is registered with the Office of
Public Guardian.
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The role of ACP in Gold Standard
Framework (GSF).
 Improving the pre-planning of care has been found to be
one of the most important ways that we can ensure
reliable patient-focused care.
 GSF incorporates this ‘thinking ahead’ approach as part of
the process of best care.
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The DNR question (Do Not Resuscitate)
 Resuscitation is a medical procedure which seeks
to restore cardiac and/or respiratory function to
individuals who have sustained a cardiac and/or
respiratory arrest.
 The medical establishment supports the use of
DNR orders on the basis either that these have
been requested by the patient, or because the
patient’s state of health is so poor that
resuscitation would be futile.
 However DNR should not be interpreted to mean
‘do not treat’.
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Legally it is important to consider the
following:
 Resuscitation is to be considered a treatment like any
other.
 If a person is incompetent to discuss the issue the doctor
must make a ‘best interest’ decision based on his and
other family/carer knowledge of the person’s previous
wishes.
 A doctor is not obliged to provide futile treatment even if a
person requests it.
 A competent adult can refuse resuscitation.
 No one can give or withhold consent for resuscitation on
behalf of an incompetent adult. In particular family
members can neither refuse nor demand such treatment.
However, good medical practice dictates that a family
should be involved in these discussions to maintain
confidence and clarify, if necessary the persons likely
wishes in the light of previous family discussion.
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Palliative care complaints
In a significant amount of cases our
advisors found that poor communication
limited a patient’s sense of empowerment
and their ability to make an informed
decision about their care
Health Care Commission
Spot light on complaints 2008
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Research
 Very little in the UK, mostly USA, Canada, Australia.
 Views on elderly people on living wills: interview study.
Schiff et al 2000
 Study of 74 people revealed that most elderly people have clear
views on issues raised in living wills and 92% did not want their
lives prolonged by medical intervention.
 Planning for the end of life: the views of older people
about advance care statements.
Seymour et al 2003
 Study of 32 people revealed that such a document could help
families and that they should be involved. Emphasis was made
that a trusting relationship between participant and doctor was
needed. However it was evident that ACP was better as a
process rather than a “once and for all” decision.
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 ACP in care homes for older people: a survey of
practice. Froggatt et al
2008
 This study showed that whilst many people were in
favour of ACP and thought it was important the evidence
that it happened was limited.
 It also recommended that ACP be used on a wider scale
i.e. primary care, public health.
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Dilemmas
 The process of ACP is highlighted as one of the most
difficult areas for health care professionals.
 Why? ……when patients have a moral right to information
that concerns them, and doctors have no right to withhold
such information?
 We can rationalize why we shouldn't do it on the basis that
withholding information is justified on the ethical grounds
of beneficence.
 There is evidence to prove that when patients were asked,
most of them wanted full disclosure and most were
dissatisfied when they didn’t get it.
 Will the unrealistic expectations of patients or families
influence our decision making?
 Whose responsibility is it to discuss end of life decisions
anyway?
 How open and honest should we be? Does it really matter?
 Does it challenge our own mortality?
 Difficult conversations need to be had – we need to have
the courage to have them.
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They may forget what you
said, but they will never
forget how you made them
feel.
- Carl W. Buechner
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Why is communication in EoLC different?
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The subject can be taboo and not normally talked about
Emotions can run high and be unfamiliar and powerful
There are lots of players involved
The speed of events can make communication
overwhelming
The finality of the subject matter
What is communicated is “bad”
The role can be unfamiliar to the nurse/carer
There needs to be a number of health care professionals
involved
Partnership and permission needs to be created bringing
trust into the relationship
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The most important thing
about communication
is to hear what isn’t being
said.
Peter F. Drucker
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Blocks to communication
Behaviours/attitudes we should avoid include:
 Changing the subject - this blocks communication
 Giving meaningless reassurance - this is not goal directed
 Giving stereotypical replies - this confuses communication
 Giving advice when not asked for - this is often not beneficial
 Talking about yourself - this is irrelevant
 Showing disapproval - this blocks communication
 Passing judgement - this makes meaningful communication
impossible
 Speaking and acting inconsistently - this confuses communication
 Asking closed questions - this blocks communication
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"Remember that silence is
sometimes the best
answer."
- Dalai Lama
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“How people die remains in the memory of
those who live on”
Dame Cicely Saunders
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