Tier 2: Ethical & Legal Issues in Dementia Care

1. Tier 2: Ethical & Legal Issues in Dementia Care

2. Aims of webinar session • Human rights based approaches to dementia care. • Mental capacity • Duty of care • Decision-making • Safeguarding Vulnerable Adults • The Mental Capacity Act 2005 • Deprivation of Liberty Safeguarding (DoLs) • Power of Attorney and Court of Protection • Advanced Care Planning @NHS_HealthEdEng

3. Case Study: James & Annie James and Annie first came to see you in June. They are both 72 years of age and have been married for 50 years. Annie had become increasingly concerned about her husband as he was becoming steadily becoming more forgetful, which she had put down to him ‘just getting older’. There had been a series of seemingly unrelated incidents, which Annie had only recently connected together, and as a result of seeing changes in James’s character and behaviour. There was the time when he had gone around a roundabout the wrong way, muddled up an arrangement with a long-time friend, which led to a breakdown in the relationship, and was no-longer able to play ‘bridge’ which he had done for most of his adult life. Annie had finally persuaded James to come to your surgery after he began spending long periods of time just ‘staring into space’ and struggling to find the words to use during conversations. You had referred James for neurological examinations and he was subsequently diagnosed with an Alzheimer’s-type dementia. Annie has now arranged a follow-up appointment with you to discuss James’s diagnosis. She is concerned that James should not be told about his diagnosis as she does not want to cause him more distress, but she is also concerned that she will not be able to cope with his increasing agitation and frustration, and she may also need support. What information, advice, guidance, and support can you offer James and Annie as you support them following James’s diagnosis? @NHS_HealthEdEng

4. Pause for a poll Which of James’ presenting signs of dementia is most likely to raise concerns about his cognition? • Increasingly forgetful • Changes in character and behaviour • Issues with driving • Problems with language • Problems with concentration @NHS_HealthEdEng

5. Maintaining Social Connections The goal of person-centred care is to provide a supporting and positive environment, which values people with dementia, sees the world from their perspective, and treats them as an individual. @NHS_HealthEdEng

6. Prime Minister’s Challenge (2020) These rights are enshrined in the Equality Act, Mental Capacity legislation, Health and care legislation and International Human Rights law. We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it. We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness. We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live. We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future. We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part. @NHS_HealthEdEng

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10. Person-centred ethical approach People with dementia are human beings and have the right to have their autonomy respected; however, this must be balanced with operating in their best interests. Empowerment Safeguarding @NHS_HealthEdEng

11. Mental Capacity Having mental capacity is about having the ability to make informed decisions. This requires them to be able to: • Understand the information they have been given • Retain the information long enough to be able to make a decision • Weigh up the information to be able to make a decision • Communicate their decision to other people. @NHS_HealthEdEng

12. Lacking Capacity If someone is deemed to lack capacity to make decisions over their financial and healthcare affairs, there are a number of safeguards which can be applied to ensure decisions are made in their best interests. These include: • Duty of Care • Safeguarding • Power of Attorney • Court of Protection @NHS_HealthEdEng

13. Duty of Care All staff working with people with dementia have a moral or legal obligation to ensure their safety and wellbeing. They must always act in the best interests of the person with dementia, particularly when they are unable to make decisions for themselves. @NHS_HealthEdEng

14. Decision-making People with dementia have said that they want to have personal control and choice over the decisions that affect them. (DoH 2012) Ideally, receiving an early diagnosis enables the person with dementia to plan for the future while they still have capacity to do so. The Care Act 2014 states that people with dementia must be involved in decisions about their own care. @NHS_HealthEdEng

15. Safeguarding Vulnerable Adults There are 6 principles which underpin the safeguarding of vulnerable adults. They are: • Empowerment • Prevention • Proportionality • Protection • Partnership • Accountability @NHS_HealthEdEng

16. Does the MCA (2005) help or hinder? 5 Principles which underpin the MCA: • You must always assume a person has capacity unless it is proved otherwise • You must take all practical steps to enable people to make their own decisions • You must not assume incapacity simply because someone makes an unwise decision • Always act, or decide, for a person without capacity in their best interests • Carefully actions to ensure the least restrictive option is taken @NHS_HealthEdEng

17. Deprivation of Liberty Safeguards (DoLS) • The Deprivation of Liberty Safeguards can only be used if the person will be deprived of their liberty in a care home or hospital. In other settings the Court of Protection can authorise a deprivation of liberty. • Care homes or hospitals must ask a local authority if they can deprive a person of their liberty. This is called requesting a standard authorisation. • There are six assessments which have to take place before a standard authorisation can be given. @NHS_HealthEdEng

18. Proposed Deprivation of Liberty (DOLS) Replacement Bill On 3 July 2018, a Bill to amend the Mental Capacity Act ("the Bill") was introduced into the House of Lords for a first reading. This is likely to have a significant impact on healthcare providers in the public and private sectors, as well as on commissioners in health and social care. The DOLS framework will be replaced by a new administrative scheme known as the Liberty Protection Safeguards ("LPS"). @NHS_HealthEdEng

19. Power of Attorney Pre-October 2007- Enduring Power of Attorney are still valid if prepared before this date. Post-October 2007- There are two types of Lasting Power of Attorney: • Dealing with financial affairs • Dealing with welfare @NHS_HealthEdEng

20. Court of Protection A deputy can be any relative or friend over the age of 18. They have the same role as an attorney. A judge determines if the person with dementia has capacity, and if it is in their best interests to have a deputy. @NHS_HealthEdEng

21. Advanced Care Plans • Choosing the preferred place of future care i.e. Care home • Choosing if they wish to receive treatments or not • If they wish to be resuscitated • Where they wish to die @NHS_HealthEdEng

22. Pause for a poll Which of the following would you prioritise to discuss with the person with dementia and their family, following a diagnosis? • Safeguarding • Power of attorney • Advanced care planning • Carer’s health assessment @NHS_HealthEdEng

23. Resources and useful links • https://www.alzscot.org/campaigning/rights_based_approach • Ann Craft Trust, Six Principles of Adult Safeguarding - https://www.anncrafttrust.org/resources/six-principles-adult-safeguarding/ • Department of Health, The Care Act - https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/365345/Making_Sure_the_Care_Act_Works_EASY_READ.pdf • Gov.uk, Deputies: make decisions for someone who lacks capacity - https://www.gov.uk/become-deputy • Gov.uk, Make, register or end a lasting power of attorney - https://www.gov.uk/power-of-attorney • Health Education England, dementia training resources - https://www.hee.nhs.uk/our-work/dementia-awareness/resources-tier-one-two-three • Health Education England, Dementia guide for carers and care providers e-book, available from: iBooks, the Kindle Store, and Smashwords. It is also available as a standalone app through the Apple App Store. @NHS_HealthEdEng

24. Resources and useful links • Care Quality Commission (CQC) (2014) ‘Monitoring the use of the Mental Capacity Act Deprivation of Liberty Safeguards in 2012/2013’, London: CQC • Department for Constitutional Affairs (2007) ‘Mental Capacity Act 2005: Code of Practice’, London: The Stationery Office.  • House of Lords (2014) ‘Select Committee on the Mental Capacity Act 2005, 2014: Post-legislative scrutiny’, summary, p 1, London: The Stationery Office. • https://www.alzscot.org/assets/0000/2678/Charter_of_Rights.pdf • Law Commission, Mental Capacity and Deprivation of Liberty - https://www.lawcom.gov.uk/project/mental-capacity-and-deprivation-of-liberty/ • Legislation.gov.uk, Care Act 2014: - http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted • Legislation.gov.uk, Mental Capacity Act 2005 - https://www.legislation.gov.uk/ukpga/2005/9/contents • http://www.scottishhumanrights.com/media/1409/shrc_hrba_leaflet.pdf • Ministry of Justice (2008) ‘Mental Capacity Act 2005: Deprivation of Liberty Safeguards - Code of practice to supplement the main Mental Capacity Act 2005 Code of Practice’ London: The Stationery Office.  @NHS_HealthEdEng

25. Resources and useful Links • Scottish Human Rights (2018) Protecting human rights for everyone in Scotland - www.scottishhumanrights.com • Social Care Institute for Excellence (SCIE) (2013) ‘Report 66: Deprivation of Liberty Safeguards: Putting them into practice’, London: SCIE.  • Social Care Institute for Excellence, Advance care planning in dementia - https://www.scie.org.uk/dementia/supporting-people-with-dementia/decisions/advance-care-planning.asp • Social Care Institute for Excellence, Deprivation of Liberty Safeguards (DoLS) - https://www.scie.org.uk/mca/dols/at-a-glance • Social Care Institute for Excellence, Mental Capacity Act - https://www.scie.org.uk/mca/introduction/mental-capacity-act-2005-at-a-glance • University of Nottingham, Improving Dementia Education and Awareness (IDEA) - https://idea.nottingham.ac.uk/resources @NHS_HealthEdEng

26. References • Ann Craft Trust (2018) Six Principles of Adult Safeguarding. https://www.anncrafttrust.org/resources/six-principles-adult-safeguarding/ • Brechling B, Schneider C. (1993) Preserving Autonomy in Early Stage Dementia. Journal of Gerontological Social Work; 20(1-2):17-33. • Brooker, D. & Latham, I (2015) Person-centred Dementia Care: (2nd Edition) Making Services better with the VIPs Framework. London, Jessica Kingsley Publishers • Dening K, Jones L, Sampson E. Preferences for end-of-life care: A nominal group study of people with dementia and their family carers. Palliative Medicine. 2012;27(5):409-17. • Department of Health (2013). A state of the nation report on dementia care and support in England. London: Department of Health, • Department of Health (2014Tthe Care Act. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/365345/Making_Sure_the_Care_Act_Works_EASY_READ.pdf • Department of Health (2012) Health and Social Care Act London, The stationary Office • Department of Health (2013) The NHS Constitution: the NHS belongs to us all, London, the Stationary Office. • Department of Health (2013a) Patients First and Foremost: The initial Government Response to the Mid Staffordshire NHS Foundation Trust Public Inquiry, London, The Stationary Office. @NHS_HealthEdEng

27. References • Dickinson C, Bamford C, Exley C, Emmett C, Hughes J, Robinson L. (2013) Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning. International Psychogeriatrics. 25(12):2011-21. • Fazel S, Hope T. (1999) Assessment of competence to complete advance directives: validation of a patient centered approach. British Medical Journal; 318(7182):493-7. • Hirschman K, Kapo J, Karlawish J. Identifying the factors that facilitate or hinder advance planning by persons with dementia. Alzheimer Disease and Associated Disorders 2008;22(3):293-98. • Kitwood, T. (1997) Dementia Reconsidered: People Come First.. Buckingham, Open University Press • Karel M, Moye J, Bank A, Azar A (2007). Three methods of assessing values for advance care planning: comparing persons with and without dementia. Journal of Ageing and Health. 7;19(1):123-51. • Law Commission (2017) Mental Capacity and Deprivation of Liberty. https://www.lawcom.gov.uk/project/mental-capacity-and-deprivation-of-liberty/ • Legislation.gov.uk (2014) Care Act 2014. http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted • Legislation.gov.uk (2005) Mental Capacity Act 2005. https://www.legislation.gov.uk/ukpga/2005/9/contents • Lynn J, Teno J, Dresser R, Brock D, Nelson H, Nelson J, et al.(1999) Dementia and advance-care planning: perspectives from three countries on ethics and epidemiology. Journal of Clinical Ethics; 10(4):271-85. @NHS_HealthEdEng

28. References • Marin D, Rudin E, Fox B, Neugroschl J, Brickman A, Northrop J, et al.(1999) Feasibility of a healthcare proxy counselling program for patients with Alzheimer's disease. Journal of Palliative Medicine; 2(3):323-29. • Mezey M, Mitty E, Bottrell M, Ramsey G, Fisher T.(2000) Advance directives: older adults with dementia. Clinical Geriatric Medicine;16(2):255-68. • Musa I, Seymour J, Conroy S. (2014) A Survey Of Older Peoples’ Attitudes Towards Advance Care Planning. Age Aging. 44(3):371-6. • Poppe M, Burleigh S, Banerjee S. (2013) Qualitative Evaluation of Advanced Care Planning in Early Dementia (ACP-ED). PLOS One; 8(4):e60412. • Rempusheski V, Hurley A (2000). Advance directives and dementia. Journal of Gerontological Nursing; 26(10):27-34. • Robinson L, Dickinson C, Rousseau N, Beyer F, Clark A, Hughes J, et al.(2012) A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age and Ageing;41(2):263-69. • Ryan T, Gardiner C, Bellamy G, Gott M, Ingleton C. (2012) Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff. Palliative Medicine, 2;26:879. • Sampson EL, Gould V, Lee D, Blanchard MR. (2006) Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age Ageing; 35(2):187-9. @NHS_HealthEdEng

29. References • Sampson E, Jones L, Thune-Boyle I, Kukkastenvehmas R, King M, Leurent B, et al. (2011) Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliative Medicine; 25(3):197-209. • Social Care Institute for Excellence (2056), Advance care planning in dementia. https://www.scie.org.uk/dementia/supporting-people-with-dementia/decisions/advance-care-planning.asp • Social Care Institute for Excellence (2016), Mental Capacity Act (MCA). https://www.scie.org.uk/mca/introduction/mental-capacity-act-2005-at-a-glance • Social Care Institute for Excellence (2017), Deprivation of Liberty Safeguards (DoLS).https://www.scie.org.uk/mca/dols/at-a-glance • van der Steen JT, van Soest-Poortvliet MC, Hallie-Heierman M, Onwuteaka-Philipsen BD, Deliens L, de Boer ME, et al. (2014) Factors Associated with Initiation of Advance Care Planning in Dementia: A Systematic Review. Journal of Alzheimer's Disease. 40(3):743-57. • Volandes A, Paasche-Orlow M, Barry M, Gillick M, Minaker K, Chang Y, et al.(2009) Video decision support tool for advance care planning in dementia: randomised controlled trial. British Medical Journal. 338: b2159. @NHS_HealthEdEng