Title: Advance Care Planning (ACP)
1Advance Care Planning(ACP)
- Deborah Holman
- End of Life Care Specialist Nurse
- Gold Standards Framework Facilitator
2 Our lives begin to end the day we become silent
about things that matter. -- Martin Luther
King, Jr.
3What 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.
4The 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.
5 - 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.
6Mental 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.
7The 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
8Advance 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.
9It 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
10Limitations 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
11Lasting 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.
12The 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. - Â
13The 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.
14Legally 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.
15Palliative 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
16Research
- 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.
17- 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.
18Dilemmas
- 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.
19 They may forget what you said, but they
will never forget how you made them feel.
- Carl W. Buechner
20Why 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
21 The most important thing about communication
is to hear what isnt being said. Peter F.
Drucker
22Blocks 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
23 "Remember that silence is sometimes the best
answer."Â - Dalai Lama
24- How people die remains in the memory of those
who live on - Dame Cicely Saunders