What information needs
do we have?
What issues arise for patients seeking
to make an informed choice?
• How do we find out what it is that we don’t
know, that we need to know, before we can
make an informed choice?
• How do we find out what information is sound?
• How do we find out who we can trust?
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Moving from Informed Consent
to Informed Choice
When asked about the Duke of Edinburgh going into
hospital for an exploratory operation, a Royal
spokesman replied, “The best way to get better is
to do what the Doctor says.”
A study of women with breast cancer showed that
44% wanted to be involved in joint decision
making about their treatment plan, 22% wanted
time alone to consider the options, whereas 34%
wanted their doctor to make the choice for them.
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Nota Bene
When thinking about shared decision making we need
to restrict our focus to options for treatment, probable
outcomes, risks, special tests, care management and
support packages
Our main interest here is not about choice of facilities,
service providers, hospitals, consultants’ performance
or hospital league tables or how good the parking is!
Unfortunately much work does not make this
distinction clearly enough –
(e.g. An Anatomy of GP Referral Decisions – King’s Fund 2007)
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How do we feel about choice at
times when making such
decisions
1. Are we in “our right minds” at such times?
2. Can we absorb information we are given?
3. How best can such information be given to
us?
4. How do our own beliefs affect such choices?
5. Who do we believe?
4
The case of Mr C
Mr C was a patient in a Broadmoor hospital who had
chronic paranoid schizophrenia with grandiose delusions
of being a world famous doctor. He developed gangrene
in his right foot. He refused to consent to amputation of
his right leg below the knee. He sought an injunction to
restrain his doctors from amputating the leg without his
express consent. In granting the injunction, Justice
Thorpe held that C sufficiently understood the nature,
purpose, and effects of the proposed amputation, and
that he retained capacity to consent to, or refuse, medical
treatment. Justice Thorpe laid out the criteria for capacity,
which were subsequently cited in other cases, and have
become generally known as “the Re C test”
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The Requirements for Informed Choice
The High Court held that an adult has capacity to consent [or
refuse consent] to medical treatment if he or she can:
• understand and retain the information relevant to the decision
• believe that information, and
• weigh that information in the balance to arrive at a choice
Therefore to demonstrate capacity, individuals should be able to:
1.
2.
3.
4.
5.
understand in simple language what the medical treatment is, its
purpose and nature and why it is being proposed
understand its principal benefits, risks and alternatives
understand in broad terms what will be the consequences of not
receiving the proposed treatment
retain the information for long enough to make an effective
decision, and
make a free choice (i.e. free from pressure)
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What defines our competence to
engage in critical decision-making?
• Rational belief system – in the context of
NHS commitment to equality & diversity
• Sensible attitude to health and wellbeing
• Intelligent understanding in our attribution
of the causes of illness
• Well-balanced emotional response to
bad news or shock
• Supportive family or social network
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Working through our defences
when time is of an essence
• My coronary artery disease - radiological evidence before me
that I could understand – wish to be a good patient – happy
to adopt learned helplessness position - trust of cardiologist
overshadowed any fear of risks – good level of knowledge
helped – chose CABG
• Bob’s multiple myeloma – Low confidence in allopathic
medicine – preference for alternative therapies – asked to
record Registrar’s advice on Dictaphone – declined chemo
• Gill’s breast lump – biopsy unclear but suggested tissue
unhealthy - ? Pre-cancerous – we easily shared consultant’s
risk aversive position – if cancer was developing, best deal
with it sooner rather than later – chose lumpectomy
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What did I learn from these experiences?
• Trust in physicians is still pretty strong for all of us
despite cultural shift toward consumerism
• Knowledge and clear information reduces fear
• Confidence to ask questions helps – inability to take
in answers doesn’t
• Time pressure is often a critical factor in making
choices relating to life-threatening situations
• Paradoxically, the crisis or the point of decision
making is often the worst time to actually make it
NB It is not the time to debate the ethics of blood transfusion with a Jehovah’s Witness when
a family member is critically ill in A & E!
• Pain, fear, denial, affect us all very differently
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On what kind of data do GPs advise us?
4 factors influence the degree to which GPs support patient choice:
1. The availability and quality of formal and informal information about
services
2. GPs’ views of their professional role (many see no benefits for their
patients)
3. Patient preferences
4. Local PCT (now CCG) policies that may restrict choice
Most GPs distrusted official sources of information (waiting list
data etc) preferring to rely on soft, informal sources of information –
(my surgeon’s reputation was that he was the fastest seamster in the business!)
“When making choices about themselves or a relative, GPs often seek out
informal information about different services to inform their personal
decisions, with a particular emphasis on clinical quality.”
Anatomy of GP Referral Decisions – King’s Fund 2007
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Does more information increase our trust?
• “From the state of current knowledge, around 13% of
all treatments have good evidence, and a further 21%
are likely to be beneficial”.
Ben Goldacre 2008
Q. Are Randomised Controlled Trials the holy grail
of evidence based medicine – Prophylactic beta
blockers use following heart disease? CBT for
agoraphobia?
• In her Reith lecture, the philosopher, Baroness O’Neill
presents cogent arguments as to how information and
transparency can diminish our trust in “expert”
opinion.
Q. How many of us place trust in everything the
pharmaceutical industry tells us?
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“Perhaps it is not then surprising that public distrust has
grown in the very years in which openness and
transparency have been so avidly pursued.
Transparency certainly destroys secrecy: but it may
not limit the deception and deliberate misinformation
that undermine relations of trust. If we want to restore
trust we need to reduce deception and lies rather than
secrecy.”
“We place and refuse trust not because we have torrents
of information (more is not always better), but because
we can trace specific bits of information and specific
undertakings to particular sources on whose veracity
and reliability we can run some checks. Well-placed
trust grows out of active enquiry rather than blind
acceptance”
Onora O’Neill 2002
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What sort of information do we need?
• Access to basic anatomy and physiology
learning tools – including the models and
skeletons found lurking around in store
cupboards of medical schools!
• Easy to use jargon-busters and glossaries of
medical terms
• Decision-making aids
• Access to on-line journals and search tools
with library staff assistance where needed
• Lists of support groups and organisations that
produce information media
13
Have I answered my questions?
• We find out what it is that we need to know by asking
questions of our GPs, consultants, friends or relatives
involved in healthcare, by talking with others who have
been through what we may be facing, by joining support
groups and maybe seeking advice through library services
• We make judgements (mostly unscientific) about how much
we trust information based upon the informants personal
attributes, our own biases, the political milieu, and whether
we feel we have been properly listened to
• Much depends upon hearsay, the experience of others,
how much we really want to know, whether we read the
Mail, the Sun or the Guardian, lastly whether we would
prefer to leave it to somebody else (“the professionals”)
whether or not we truly believe what they are telling us
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Final comments
• Shared decision-making may be merely a
euphemism for Drs talking their patients
around to accepting their prescription!
• It is only of real benefit where there are
genuine alternative ways forward in our
medical journey
• We must not assume that in making choices
we all become entirely self-centred –
consideration of family, friends and carers
often has much sway in some of the most
difficult decisions we have to make
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