Block 12 - part 3 Flashcards
5 categories for significant impaired decision making ability
lack of insight cognitive impairment presence of psychosis severe depressive symptoms learning disability
importance of supporting patient’s decision making
patient generally happier if can make decisions, enables patients to have self-determination and autonomy, likely to facilitate other positive goods (pt dr relationship), professional requirement, legal requirement (mental capacity act 2005)
how might doctors assist patients in making decisions
different form of communication, providing more accessible info, treating medical condition which affects capacity, strutured programme to improve peroson’s capacity
act which determines capacity
mental capacity act (2005)
according to mental capacity act 2005, when does a person lack capacity
unable to: understand info relevant to decision, including consequence, retain info even for a short time, use or weigh info to make decisions, communicate decision
5 key principles of the MCA
presumption of capacity,
right to be supported to make their own decisions, right to make eccentric or unwise decisions, best interests, least restrictive intervention
MCA definition of presumption of capacity
a person must be assumed to have capacity until otherwise established
MCA ways to support people without capacity to make decisions
use different forms of communications, provide information in different formats, treat a condition that is impacting capacity thus restoring capacity
MCA view on right to make eccentric or unwise decisions
person not to be treated as unable to make decisions merely because decision is unwise
how many people in the UK have dementia
850,000
early presentations of dementia noticed by pt
forgetfulness, difficulty with names and finding right word, embarrassment in social situations
early presentations of dementia noticed by family and friends
repetitive, forgets social arrangements, skills deteriorating, withdrawing
impact of diagnosis of dementia on a pt
denial (with or without insight) - pt attributes problems to old age, anger at suggestion anything is wrong,
grief reaction
acceptance/positive coping strategies
things that determine response of pt to diagnosis of dementia
insight and stage of illness, type of dementia, previous personality, relationship and support
impact of diagnosis on carers
confirmation of something they have long suspected, fear, anger, grief
things that determine response of carer to diagnosis of dementia
understanding of the illness, patients reaction, nature of relationship with patient and what else is happening
benefits of dementia diagnosis
know what dealing with, access to treatment and support services, information/education, planning for future, assess and manage risks
effects of dementia on patient
loss of self esteem, may find communication difficult, loss of independance
effects of dementia on partner
relationship becomes skewed, practical, emotional, financial, strained relationship with family/friends
effects of dementia on child
role reversal, competing demands, conflict between family members, effect on young children, previous relationship
effects of dementia on carers
stress, physical care, poor sleep, constant vigilance, loss of support, unable to take time off sick
how much of the cost of dementia is paid by people with dementia and their families
2/3rds - £17.4 billion
what percentage of carers dont receive enough support
43%
why are people with dementia at higher risk of elder abuse
more vulnerable, may struggle to discuss feelings and experiences or remember what happened to them, can be hard to detect abuse
examples of advanced care planning
advanced statement of wishes (treatment they would like) (not legally binding),
advanced decisions/directives (decision to refuse treatment) (LEGALLY BINDING)
advanced directives
extends patients autonomy to apply in situations where they don’t have capacity as defined under the MCA 2005, a valid AD which refuses treatment should always be followed
when are advanced directives valid and applicable
patient is 18+ and lacks capacity at time of treatment but had capacity at time of making AD, properly informed patient and statement is clear and applicable to current situations
what can ADs not be used to refuse
basic care, e.g. food/water
Ulysses arrangement
advanced directive for bipolar disorder
pros of advanced directives
respect patient autonomy
encourages forward planning
patient will be less anxious about unwanted treatment
may lower healthcare cost as people opt out for less aggressive treatments
cons of advanced directives
difficult to verify if patient’s opinion has changes since AD, difficult to ascertain whether current circumstances are what patient foresaw when making AD, possibility of coercion, possible wrong diagnosis, can patients imagine future situations sufficiently vividly to make own current decisions adequately informed?
5 examples of research atrocities in history
Nazi medical experiments (nuremberg code), willowbrook study, tuskegee syphilis study, alder hey, wakefield
willowbrook study
injected children with hep b to develop vaccine
tuskegee syphilis study
african american men given syphilis but not antibiotics as researchers wanted to see disease progression
alder hey scandal
retained human tissue including children’s organs in 1988-1995 - lead to human tissue act 2004
wakefield scandal
andrew wakefield published in the lancet that MMR vaccine leads to autism
nuremberg code (1947)
resulted form Nuremberg trials, early code for research ethics principle including need for voluntary consent, avoid all unnecessary physical and mental suffering and injury, conducted only by scientifically qualified persons
helenski declarations 1964
requires that any human research is subject to independant ethical review and oversight by properly convened committee
useful research ethics principles
usefulness, necessity, risks, consent, confidentiality, fairness, approval (from research ethics committee)
Valid consent
voluntary, informed, patient is competent
voluntary consent
not putting pressure on pts or volunteers, not offering inappropriate (financial) inducements, not threatening/imposing sanctions if they don’t take part
what should patients be given to inform consent
info sheets, presentation of info (no jargon), summary of key points, oppportunity to ask questions, time to decide (at least 24 hours)
confidentiality
state of keeping or being kept secret or private
importance of confidentiality
patient trust and ensuring valid results, all patient info is confidential
how to increase level of confidentiality
limit access to identifyable info, securely store data documents, assign security codes to computerised records, proper disposal of study data/documents, encrypt identifyable data
ethics comittee
body responsible for ensuring that medical experimentation and human research are carried out in an ethical manner in accordance with national and international law
why do we need ethics approval
participant protection, no harm to researchers, researcher not covered if claim regarding research made against them, publications won’t accept research that was not ethically approved, funders will not support w/o ea
when is ethics approval needed
human participants, confidential info included in research, research involves biological material (embryos, stem cells, etc.)
5 examples of research ethics committees
NHS research ethics committees, higher education institution (HEI) research ethics committee, gene therapy advisory committee, social care research ethics committee, ministry of defence research ethics committee
Human tissue act (2004) statements about research
consent for storage and use of tissue for ‘scheduled purposes’ is required for tissues from living or deceased persons,
these purposes include research in connection with disorders, or the functioning of the human body,
however, consent is not required to use tissue obtained from living patients if the tissue is anonymous to the researcher and the project has research ethics approval
