Advance Care Planning (ACP)

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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 individuals 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 societys desire
  to value individuals 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 statementspreviously
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 LPAA 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 LPAA 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
  patients 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 persons 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 complaintsIn a significant
amount of cases our advisors found that poor
communication limited a patients sense of
empowerment and their ability to make an informed
decision about their careHealth 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 didnt 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?

• 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 isnt 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
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  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