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P5. Legal and ethical issues in dementia

Detailed Programme, abstracts and presentations

P5. Legal and ethical issues in dementia (Friday, 5 October, 14.00-15.30, Europa 5)

P5.1. How do carers decide for their relatives with dementia?

Kritika Samsi, Jill Manthorpe

The Mental Capacity Act 2005 (MCA), implemented in England and Wales in 2007, provides frameworks for people with dementia to make their own decisions and in setting up proxy decision-makers to make decisions on their behalves. These may include major decisions about care, treatment and finances, as well as everyday decisions. We wanted to explore the relevance of the MCA on everyday decision-making for people with dementia who lived in their own homes with their family carers. We conducted around 3 or 4 qualitative interviews with 12 dyads (comprising person with dementia and carer) over 9-12 months to explore their accounts of everyday decision-making over the course of 2011-2012. We analysed types of decisions made, who made the decisions, how joint decisions were arrived at, and what (if any) sources of support were sought. Findings revealed a range of decision-making approaches. Although most people with dementia felt they should and were able to make their own everyday decisions, they were often happy to leave it to their trusted carer. Spouse carers appeared more likely to rely on knowledge of their relative’s personality and preferences when making a decision for them, while adult children carers relied on past conversations. Some carers talked of using the best-interests principle of the MCA in terms of weighing up the significance of the decision being made and whether it was necessary to involve their relative with dementia. However challenges persist in understanding how these decisions can be best weighed up, especially if the well-being of one depends on the well-being of another.

Carers found proxy decision-making frustrating and everyday conversations were often used to contextualise decision-making. In many cases carers talked of making decisions on behalf of their relative with dementia without making any attempt to involve them. Such carers were confident that their proxy decision reflected their relative’s choice. Understanding how and when people with dementia are able to make decisions or have these made for them is becoming crucial to health care systems and practices. This can inform everyday care as well as long-term care needs.

P5.2. License to steal? Preventing abuse of powers of attorney.

Ariadne Van den Broeck

In many European countries, adults can anticipate possible future insufficiency of personal faculties caused by dementia by granting a power of attorney. This is a mandate given by a capable adult with the purpose that it shall remain in force, or enter into force, in the event of the granter’s incapacity. The adult can choose a person to take care of his personal welfare and/or the administration of his assets and indicate in advance how this task must be fulfilled. Powers of attorney are therefore becoming a preferred alternative in Europe to court decisions on representation. They lift the adult’s autonomy to a higher level as he (and not the judge) is the one that outlines the further development of his own life. However, through the delegation of powers, the granter also increases his vulnerability. As soon as he has lost capacity, he will no longer be able to control the execution of the power of attorney. This problem is particularly relevant when the adult has delegated powers over his property and affairs. His loss of control creates a risk of abuse. It will no longer be guaranteed that the attorney uses his powers in accordance with the granter’s wishes and in his best interests.

In its Recommendation on principles concerning continuing powers of attorney and advance directives for incapacity (2009), the Council of Europe expressed its concern about this issue and encouraged states to provide for adequate protection for abuse. Several strategies are conceivable to achieve this aim. In this presentation, I will give an overview of private and public safeguards used in European states to prevent abuse of powers of attorney. These methods will be evaluated in the light of what should be the main concern of every measure of protection: striking a fair balance between the right to autonomy and the right to protection. In conclusion, the most appropriate system of supervision will be selected and specified.

The relation between the fundamental right to autonomy and the right to protection is especially strained when it comes to the issue of the provision for judicial intervention in the operation of powers of attorney. Some states, like Switzerland, France, England and Wales, provide involvement of public authorities with duties to investigate. To ascertain a legitimate use of the power of attorney, they can ask the attorney for accounts and regular reports. In other states, like Austria and Germany, no judicial supervision is provided at all, on behalf of the adult’s right to autonomy. He can establish a private monitoring system himself by appointing a third person to supervise the attorney. He can also nominate two attorneys and decide that unanimity is a prerequisite for every act. But one can ask himself whether it is justified to leave the task of control exclusively in hands of the granter. When his well-being and dignity is at stake, his right to protection warrants a judicial intervention. This will not necessarily be a detriment for the adult’s autonomy, as it can secure that his estate will be administered in the way he had imagined it. However, the interference in the adult’s life should never go further than necessary. It should not erode the power of attorney as an instrument of self-determination. A careful elaboration of the system of supervision, such as the competence of the authorities and their methods of intervention, is therefore required.

P5.3. Ethical considerations and challenges when working with people with dementia and their carers

Jane Youell, Dr. Jackie Parkes

This abstract will explore the ethical issues, challenges, and considerations needed when working with people with mild to moderate dementia and their carers specifically when discussing intimacy.  The discussion will incorporate pragmatic issues around the use of advocacy, consent, interviewing those with dementia and safeguarding.  Discussion will also be given to the decisions needed to negotiate a research proposal through the NHS ethics process, the importance of reflexive practice and support for the researcher.

This abstract comes from an ongoing PhD study which aims to explore the impact on intimate, caring relationships affected by dementia. Care at home is not just a pragmatic solution to a social and economic problem – it is a lived relationship. As intimacy also includes a sexual connotation, a further strand of this PhD work is to have a better understanding of the complexities of sexual relationships when one partner has dementia which will help support workers formulate appropriate strategies and discussion when working with couples.

P5.4. Ethical aspects of physician-assisted suicide in Alzheimer’s patients

Jakov Gather, Jochen Vollmann

Recent international studies indicate that physician-assisted suicide (PAS) is mostly requested by patients in terminal stages of an incurable somatic disease. However, PAS is also performed on patients who primarily suffer from psychiatric disorders.

The aim of our presentation is to discuss ethical arguments for and against PAS in the special case of Alzheimer’s patients who do not want to undergo the pervasive personality changes in the course of the dementia process and therefore ask their physician for a lethal drug.

From an ethical perspective the patient’s competence represents a significant precondition for assisted suicide in general. For this reason we discuss conceptual and empirical findings concerning competence assessment in dementia patients in detail. Subsequently, we examine potential risks of the manipulation of the patient’s will, e.g. the possibility, that patients might feel directly or indirectly coerced to commit suicide by third parties. 

In the end, we argue that PAS can be regarded as ethically justified if several conditions are met. From a clinical perspective a thorough differential diagnosis and patient information seem essential. Besides, the patient and his or her relatives should be provided with best medical and psychosocial support. If after, due deliberation, a patient still requests PAS, a transparent and documented competence assessment should be conducted by a professional psychiatrist in any case.






Last Updated: Thursday 15 November 2012