Proposed End of Life Choices (Scotland) Bill

Introduction

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist services such as day care, home support and carer support (through training programmes and support groups) in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website and our wide range of publications.

We welcome the opportunity to comment on the proposed End of Life Choices (Scotland) Bill. This is a complex ethical issue that raises strong emotions and divisions of opinion. In acknowledging people with dementia will have a broad range of views on this very personal issue, our response does not attempt to unravel the ethical issues or examine moral considerations. Instead our response raises the concerns we have with the implications of the proposed Bill.

We have not responded directly to the consultation questions, as they presume support in principle for the introduction of legislation to permit physician assisted dying in Scotland.

This response is in line with our Rights and Legal Protection policy paper; we consulted with our Council and inter-disciplinary Rights and Legal Protection Committee on the formulation of the policy paper.

General points

The main aim of the Bill is to propose a major change to Scottish law which would result in the legalisation of voluntary euthanasia and physician assisted dying. The title of the consultation paper is therefore misleading, as end of life choices are not discussed.

The consultation paper claims consistency with palliative care. However, the change of law it proposes is at odds with the widely accepted World Health Organisation definition of palliative care which intends neither to hasten nor postpone death.

The consultation paper draws a parallel between a request for no resuscitation to be attempted following stroke or other health occurrence and a physician administering medication that would end life. Whilst the outcomes may be the same there is a key difference, the former is inaction to allow death to occur naturally, whereas the latter requires an action to be taken to hasten death.

People with dementia

Dementia is the progressive loss of the powers of the brain; gradually over a period of years most functions of the brain will be affected. People with dementia gradually lose the capacity to make decisions. Advance statements, advance directives and living wills provide people with dementia an opportunity to make known their wishes and preferences about future care and medical treatment which they may not be able to communicate later on. The consultation paper does not cover these end of life choices.

The Bill proposes patients enjoying otherwise satisfactory health but with degenerative, irreversible conditions would make their wishes known to an attending physician, qualified and registered as someone willing to help terminate life at the patients request. This would include people with dementia in the early stages of the illness. The stigma attached to dementia and the lack of support services may influence any decision the person may make to die.

Consistent with the Disability Discrimination Commission position statement on euthanasia and assisted suicide , Alzheimer Scotland is against legislation to legalise voluntary euthanasia at this time because service provision to provide high quality palliative care throughout the illness is poor for people with dementia.

The infrastructure to provide appropriate palliative care and end of life care does not exist. There is lack of support, inadequate planning and gross under funding, which results in unnecessary distress for people with dementia and carers. Until these inequalities are addressed people with dementia do not have a balanced view of the options; end of life choices do not exist. We therefore could not support legislation at this time.

The unintended impact of proposals to change the law may have the effect of endorsing discrimination and adversely affect investment in dementia care services. We promote the human rights of people with dementia, including their right to appropriate care and support from diagnosis until the end of their journey. People with dementia should never be made to feel they are a burden on others; their human rights must be maintained.