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 ?
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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?
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.
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)
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”
The High Court held that an adult has capacity to consent [or refuse consent] to medical treatment if he or she can:
Therefore to demonstrate capacity, individuals should be able to:
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!
4 factors influence the degree to which GPs support patient 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
Q. Are Randomised Controlled Trials the holy grail of evidence based medicine – Prophylactic beta blockers use following heart disease? CBT for agoraphobia?
Q. How many of us place trust in everything the pharmaceutical industry tells us?
“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