Ethical issues in Memory Clinics: Ref Nuffield Council on Bioethics Report

1. Ethical issues in Memory Clinics: Ref Nuffield Council on Bioethics Report Rosemary Clarke and David Jolley

2. An ethical frameworkDementia: Nuffield Council of Bioethics 2009 • Case based • The nature of dementia • Quality of life • Best interests • Solidarity • Personhood and value • www.nuffieldbioethics.org/fileLibrary/pdf/Nuffield_Dementia_short_guide_FINAL.pdf • 64 detailed points in summary and 20 recommenations • www.dca.gov.uk/legal-policy/mental-capacity/mca-cp.pdf

3. Component 1: A ‘case-based’ approach to ethicaldecisions • 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.

4. Component 2: A belief about the nature of dementia • Dementia arises as a result of a brain disorder, and is harmful to the individual.

5. Component 3: A belief about quality of life withdementia • With good care and support, people with dementia can expect to have a good quality of life throughout the course of their illness.

6. Component 4: Promoting the interests both ofthe person with dementia and of those who carefor them • 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.

7. 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.

8. Component 6: Recognising personhood, identityand 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.

9. 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?

10. 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?

11. 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?

12. 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?

13. 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?

14. 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.

15. 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?