Our latest blog is by Brian Cairns, a retired teacher and a founding member of the Campaign Against Assisted Dying. He reflects on assisted dying legislation and its unintended consequences - legislation that affects peace of mind. The blog appears by kind permission of Open House magazine, where it can also be found.
As members of the Scottish Parliament consider how they will vote on the Assisted Dying Bill which was introduced in May by Liberal Democrat MSP Liam McArthur, they might do well to reflect on the concerns of Alison McInnes MSP, which she expressed during the 2015 Holyrood debate on Assisted Dying. Her words provide a sobering insight for today’s legislators.
‘I come to this debate as a liberal and a humanist. I do not accept that there is a right to die… autonomy (personal choice) is not absolute, we are not entitled to exercise a freedom that undermines or endangers the freedom of others… We need to have choice with responsibility… In vulnerable people’s minds, the right to die will become a duty to die’.
I am a member of CAAD (Campaign Against Assisted Dying), a small group with a shared concern about assisted dying legislation and its unintended consequences. We have studied evidence, including statements from medical staff, from countries which have changed the law, and discovered that the safeguarding which was put in place does not protect vulnerable people.
For over two years, CAAD has initiated conversations in communities across Scotland with people who are both for and against proposals to legislate for Assisted Dying. We have held conferences and meetings, spoken to individuals and groups, and engaged around 2,000 citizens on the issue. When we shared what we have learned about the impact of legislation in other countries, common responses have been ‘I didn’t realise’; ‘I thought it would only affect a few people’; ‘that’s not fair’.
We realise that this is a very sensitive issue and that people are moved by concern for those who are suffering and for their families. But we believe that we need to look at the whole picture: the challenges posed by end-of-life care and the international evidence of unintended but predictable consequences of assisted dying legislation.
There are clear patterns of change which are causing concern to a growing number of people. These concerns fall into two groups: erosion of safeguarding protection and changes to the nature and practice of healthcare.
Safeguarding
The UN Declaration of Human Rights sets out fundamental human rights to be universally protected, including the right to life (n 3). The life of each person is of equal value. In countries which have legislated in favour of assisted dying, exception is made for individuals who fit specified criteria, and for state employees who are authorised to assist them in various forms of legal assisted suicide. However, people who are not included in the initial criteria have been successful in claiming unequal treatment. This has widened access and eroded the safeguarding promises built into legislation.
Access is further widened by varied interpretation and application of the criteria.
The result is an increase in patients being offered assisted dying, beyond the cohort outlined in initial legislation. Safeguarding promises made, especially to vulnerable people, are unsustainable. It is hard to avoid the conclusion that safeguarding is unsafe.
Changing the nature and practice of health care
Vulnerable patients, including those with disability issues, are often considered eligible for assisted dying according to assisted dying criteria. Many of them have described an increased sense of vulnerability in dealings with medical staff who may offer assisted suicide as a treatment.
An assessment of ‘quality of life’, can also be extremely damaging to patients’ self-esteem. It introduces legal acceptance of the idea that some are worthy of life, while others are not.
Legislation takes no account of the conflicting understanding of the nature of care which it imposes on medical staff. The vast majority of the medical community understand their duty of care to ‘do no harm’.
For medical practitioners tasked with assessment, assisted dying criteria identify patients with illnesses and medical conditions. The final decision, however, involves ethical judgments. The absence of guidance on the appropriateness of ethical sources to assist such a decision is a matter for concern.
The Bill simply requires that the medical practitioner is ‘of the opinion’ that the patient fits the criteria. The decision cannot be challenged thereafter, and there is no requirement to record evidence. This undermines the rights of the patient and family to ensure the very highest standards of care and practice.
We believe that these changes to the nature and practice of health care impact on the needs and rights of patients and medical staff. They follow from the decision to override the rights of many to meet the needs of some. In effect, an intended act of mercy for a few changes health care for all.
The issues described above have emerged in various jurisdictions, and although they may not be present to the same degree in every country which has legislated, this does not mean that they will not happen in the future. No MSP can promise that others who follow them will keep the promises they make today.
Any legislator who is considering support for the proposals before the Scottish parliament should be reasonably expected to explain to the electorate what they will do differently.
We at CAAD believe that legislation is not the answer.
Meanwhile in Westminster, the Prime Minister has been urged not to rush the introduction of assisted dying legislation. The journalist Sonia Sodha, writing in The Observer of 22 September, argues that it is a major reform which is open to potential abuse. Far better, she suggests, to invite a neutral body of experts, such as a royal commission or the Law Commission, to consider the questions it raises.
Palliation not legislation
The documents of the Bill before the Scottish parliament describe the needs that it seeks to meet: a patient who has ‘an advanced progressive illness or condition, who is unable to recover’; and is faced with ‘existential pain, suffering and symptoms associated with terminal illness’.
Palliation, or palliative care as it is commonly known, is highly specialised. It involves the alleviation and treatment of the symptoms of an illness or condition for which there is no cure. To support the patient, palliative care examines the needs of the person and their loved ones. It does so to assist them in developing a care plan that supports the patient in living their life as fully as possible from within the reality that they face.
A national plan?
Scotland and the UK have centres of palliative care whose knowledge and practice are world class. With government planning and support, knowledge and practice can be better distributed around the country. We believe that we need a national plan.
The national network of hospices and other organisations which currently engage with the suffering, pain and fears of those facing illness or conditions with no cure, are at the forefront of best practise and represent a network of excellence. Political leadership is needed to support expansion of this resource.
You can support the campaign against assisted dying by visiting your MSP’s surgery and make your views known in person, or google Write to Them which provides the pathway to message your constituency MSP and 7 list MSPs directly.