Ethical issues in Memory Clinics: Ref
Nuffield Council on Bioethics Report
Rosemary Clarke and David
Jolley
An ethical framework
Dementia: Nuffield Council of Bioethics 2009
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Case based
The nature of dementia
Quality of life
Best interests
Solidarity
Personhood and value
www.nuffieldbioethics.org/fileLibrary/pdf/Nuffield_Demen
tia_short_guide_FINAL.pdf
• 64 detailed points in summary and 20 recommenations
• www.dca.gov.uk/legal-policy/mental-capacity/mca-cp.pdf
Component 1: A ‘case-based’ approach to ethical
decisions
• Ethical decisions can be
approached in a three
stage process:
• • identify the facts that are
relevant to the specific
case;
• • interpret and apply
appropriate ethical values
to those facts; and
• • compare the situation
with other similar
situations to find ethically
relevant similarities or
differences.
Component 2: A belief about the nature of
dementia
• Dementia arises as a
result of a brain
disorder, and is
harmful to the
individual.
Component 3: A belief about quality of life with
dementia
• With good care and
support, people with
dementia can expect
to have a good quality
of life throughout the
course of their illness.
Component 4: Promoting the interests both of
the person with dementia and of those who care
for them
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It is generally accepted that autonomy
and well-being are important aspects
of our lives. This is just as true for
people with dementia.
Autonomy is often defined as the
freedom to make your own choices,
but people rarely make decisions in
isolation.
Autonomy can be promoted in people
with dementia by encouraging
relationships that are important to the
person, and by supporting the person
in maintaining their sense of self and
expressing their values.
A person’s well-being includes both
their moment-to-moment experience of
pleasure, and more objective factors
such as their level of mental ability.
The separate interests of carers must
be recognised and promoted.
Component 5: Acting in accordance with solidarity
• Component 5: Acting in
accordance with
solidarity
• We are all dependent to
some extent on one
another (a concept often
referred to as ‘solidarity’)
and people with dementia
are fellow citizens.
• We therefore have a
responsibility to support
peoplewith dementia,
both within families and in
society as a whole.
Component 6: Recognising personhood, identity
and value
• The person with
dementia remains the
same, equally valued
person throughout the
course of their illness,
regardless of the
extent of the changes
in their mental
abilities and other
functions.
Gladys is a 75 year married woman living with her
husband of longstanding. Both she and her husband are
aware that her memory is not as good as it was but see
this as an inevitable consequence of age.
Their daughter has begun to help with some routines and
particularly with remembering bills. She has heard about
Alzheimer’s disease and is convinced this is what is wrong
with mother. She has persuaded her parents to attend a
Memory Clinic for assessment and advice.
Gladys’s MMSE is 21/30 and other investigations support
the diagnosis of Alzheimer’s disease.
How do you proceed?
Gladys
• Gladys is a 75 year married woman living with her
husband of longstanding. Both she and her husband are
aware that her memory is not as good as it was but see
this as an inevitable consequence of age.
• Their daughter has begun to help with some routines
and particularly with remembering bills. She has heard
about Alzheimer’s disease and is convinced this is what
is wrong with mother. She has persuaded her parents to
attend a Memory Clinic for assessment and advice.
• Gladys’s MMSE is 21/30 and other investigations
support the diagnosis of Alzheimer’s disease.
• How do you proceed?
Gordon 1
• Gordon is an 83 year man who lives with his second
wife. He worked as a bus driver and has always been
proud of his ability to drive better than most other people.
He has experienced two minor strokes over the past
three years but made good recoveries but his memory
has become variable and he is sometimes muddled
about names and places. His wife’s children feel he
should stop driving for their mother’s safety and for the
safety of others. Neither she nor Gordon agree with this
and say it would ruin their lives.
• Gordon’s MMSE is variable between 17 and 23. A
diagnosis of vascular dementia has been made.
• How do you proceed?
Gordon 2
• Gordon is an 83 year man who lives with his second
wife. He has experienced two minor strokes over the
past three years but made good recoveries but his
memory has become variable and he is sometimes
muddled about names and places. Day to day he and his
wife are comfortable and have help from the family with
the weekly shop, there are no problems beyond
prompting and tidying with self care
• Gordon’s MMSE is variable between 17 and 23. A
diagnosis of vascular dementia has been made and
shared with Gordon and the family.
• They are now to be discharged without follow up from
the clinic
• Is that OK?
Margaret
• Margaret is 78 years old. She has lived alone in Lichfield for some
years, having separated from her husband after 26 years of
marriage. Formerly a teacher of domestic science it is becoming
clear to her two sons and their wives (who live one couple in
London, the other in Manchester) that she isn’t coping well. The
house is becoming untidy and sometimes smelly. Food they
purchase for her on fortnightly shopping expeditions is to be found in
the fridge many days beyond its sell-by date. Shelves accumulate
unnecessary quantities of Jaffa Cakes. Neighbours and people from
church would be helpful but she is very proud and independent
minded.
• Having come to the clinic for assessment she declares from the start
that she does not want the findings to be shared with her family.
• What can you do?
Peter and Jane
• Peter and Jane are married. They have run a small business
together but are now in their late sixties, have retired and are
making plans for their future. They want to be as sure as possible
that they will not become a burden to their children or to society in
general. Nor do they want to suffer the sort of deterioration and
dependency which they have seen in their mothers both of whom
became demented in their seventies and went on to die in distress in
Nursing Homes.
• Both Peter and Jane describe difficulty with remembering names of
people and recalling details of events and arrangements. Both score
in the high 20s on MMSE. CamCogs are 90 (peter) and 93 (Jane).
Peter’s CT scan shows minor vascular changes. Jane’s CT is
reported as showing mild atrophic changes ‘in keeping with her age’.
• They want to know about Power of Attorney, Advanced Directives
and Advanced Care Plans.
Ethel
• Ethel, now in her eighties and quite severely demented but he is
happy in a Nursing Home. Earlier in the course of her dementia she
completed an Advanced Directive which specified that she would not
wish to have treatment which might prolong her life in case of an
infection or acute heart condition when her dementia had
progressed. In the event several of her family members feel that
though she lacks capacity to reverse the Advanced Directive,
everything about her says she is pleased with the life she has and
would not wish to hasten from it. Others feel that the views she
expressed when more competent must be respected and prevail.
• They have returned to the clinic for advice as it was here that the
original plans were made. How can you proceed?