The murky issue of whether the public supports assisted dying

Katherine Sleeman, King’s College London

The High Court has rejected a judicial review challenging the current law which prohibits assisted dying in the UK. Noel Conway, a 67-year-old retired lecturer who was diagnosed with Motor Neurone Disease in 2014, was fighting for the right to have medical assistance to bring about his death. Commenting after the judgement on October 5, his solicitor indicated that permission will now be sought to take the case to the appeal courts.

Campaigners are often quick to highlight the strength of public support in favour of assisted dying, arguing that the current law is undemocratic. But there are reasons to question the results of polls on this sensitive and emotional issue.

There have been numerous surveys and opinion polls on public attitudes towards assisted dying in recent years. The British Social Attitudes (BSA) Survey, which has asked this question sequentially since the 1980s, has shown slowly increasing public support. Asked: “Suppose a person has a painful incurable disease. Do you think that doctors should be allowed by law to end the patient’s life, if the patient requests it?” in 1984, 75% of people surveyed agreed. By 1989, 79% of people agreed with the statement, and in 1994 it had gone up to 82%.

Detail of the question matters

But not surprisingly, the acceptability of assisted dying varies according to the precise context. The 2005 BSA survey asked in more depth about attitudes towards assisted dying and end of life care. While 80% of respondents agreed with the original question, support fell to 45% for assisted dying for illnesses that were incurable and painful but not terminal.

A 2010 ComRes-BBC survey also found that the incurable nature of illness was critical. In this survey, while 74% of respondents supported assisted suicide if an illness was terminal, this fell to 45% if it was not.

Wording counts.
from http://www.shutterstock.com

It may not be surprising that support varies considerably according to the nature of the condition described, but it is important. First, because the neat tick boxes on polls belie the messy reality of determining prognosis for an individual patient. Second, because of the potential for drift in who might be eligible once assisted dying is legalised. This has happened in countries such as Belgium which became the first country to authorise euthanasia for children in 2014, and more recently in Canada where within months of the 2016 legalisation of medical assistance in dying, the possibility of extending the law to those with purely psychological suffering was announced.

It’s not just diagnosis or even prognosis that influences opinion. In the US, Gallup surveys carried out since the 1990s have shown that support for assisted dying hinges on the precise terminology used to describe it. In its 2013 poll, 70% of respondents supported “end the patient’s life by some painless means” whereas only 51% supported “assisting the patient to commit suicide”. This gap shrank considerably in 2015 – possibly as a result of the Brittany Maynard case. Maynard, a high-profile advocate of assisted dying who had terminal cancer, moved from California to Oregon to take advantage of the Oregon Death with Dignity law in 2014.

Even so, campaigning organisations for assisted dying tend to avoid the word “suicide”. Language is emotive, but if we want to truly gauge public opinion, we need to understand this issue, not gloss over it.

Information changes minds

Support for assisted dying is crucially known to drop-off simply when key information is provided. Back in the UK, a ComRes/CARE poll in 2014 showed 73% of people surveyed agreed with legalisation of a bill which enables: “Mentally competent adults in the UK who are terminally ill, and who have declared a clear and settled intention to end their own life, to be provided with assistance to commit suicide by self-administering lethal drugs.” But 42% of these same people subsequently changed their mind when some of the empirical arguments against assisted dying were highlighted to them – such as the risk of people feeling pressured to end their lives so as not to be a burden on loved ones.

This is not just a theoretical phenomenon. In 2012, a question over legalising assisted dying was put on the ballot paper in Massachusetts, one of the most liberal US states. Support for legalisation fell in the weeks prior to vote, as arguments against legalisation were aired, and complexities became apparent. In the end, the Massachusetts proposition was defeated by 51% to 49%. Public opinion polls, in the absence of public debate, may gather responses that are reflexive rather than informed.

The ConversationPolls are powerful tools for democratic change. While opinion polls do show the majority of people support legalisation of assisted dying, the same polls also show that the issue is far from clear. It is murky, and depends on the responder’s awareness of the complexities of assisted dying, the context of the question asked, and its precise language. If we can conclude anything from these polls, it is not the proportion of people who do or don’t support legislation, but how easily people can change their views.

Katherine Sleeman, NIHR Clinician Scientist and Honorary Consultant in Palliative Medicine, King’s College London

This article was originally published on The Conversation. Read the original article.

New discriminatory NHS policy is bad for your health, whoever you are

File 20170928 1440 1wn352h
Imran’s Photography/Shutterstock

Jessica Potter, Queen Mary University of London

When I first qualified as a doctor more than ten years ago, it was simple – my duty was to provide the best possible care to the patient in front of me. Evidence and clinical experience were my guides. Unlike in a commercialised health system, such as the US or India, I was not torn between doing the right thing and demands from a profit-making paymaster, or concerns over whether my patient could afford the care.

Identity checks at the front door and upfront charging have changed all that. They compromise my duty to “show respect for human life” by prioritising British lives over all others, regardless of the wider implications.

According to the NHS constitution, healthcare should be “available to all irrespective of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status”. It is a service that provides care “based on need, not an individual’s ability to pay”. It is these first two fundamental principles that I, along with many other NHS staff, am so proud of.

For the first time since its inception, Jeremy Hunt has said “we should all expect to be asked questions that confirm our eligibility for free healthcare”. This statement came as part of the Migrant and Visitor Cost Recovery Programme, first rolled out in 2014. It sets in place a series of policies that restrict access to healthcare for those not born in the UK. The NHS cannot be available to all, as the constitution states. A line must be drawn somewhere, and that line is the UK border.

An immigration health surcharge has been one of the least controversial measures introduced, attached to the visa application process for long-term non-European Economic Area migrants and students.

However, the second part of the cost recovery programme has been to incentivise NHS trusts to identify ineligible patients and charge them 50% more than the actual cost of their care. Critics argue that the cost of managing this scheme does not justify the 0.3% dent in the annual NHS budget attributable to health tourism. Furthermore, there have been reports of patients wrongfully billed. This would be stressful in itself, but more concerning are the reports of racial profiling that has been used to aid the identification of chargeable patients. With the introduction of charges upfront in an NHS that is already running on empty, snap decisions on who will actually be asked to provide identification are likely to be based on identifiers of difference, such as skin colour or accent.

To add to this hostile environment for migrants, in February this year the assumption of confidentiality – a sacred cornerstone of medical practice and a foundation of the trust that is so vital to the doctor-patient relationship – was placed on shaky ground with an agreement that patient details could be passed on to the Home Office. This memorandum of understanding, along with a hotline which charged the NHS 80 pence per minute (just to add insult to injury), is aimed at identifying people for deportation.

A public health risk

Despite the Department of Health’s claim that evidence is lacking, there is a significant body of knowledge that demonstrates that charging and data-sharing deter people from seeking help when they are unwell. These barriers to obtaining health – which, by the way, the UK government has signed up to protect as part of the EU convention on human rights – extend way beyond those who, in the eyes of the law, are ineligible for care. From a public health perspective, delaying diagnosis and treatment of infectious diseases increases the risk of spread to the wider community. Bacteria, I assure you, pay no heed to arbitrary notions of birth rights and citizenship.

From an economic perspective, prevention is better than cure. Those deterred from accessing healthcare by these policies are the least able to pay. By the time their treatment is life-threatening, you can be sure that, had we treated them sooner, the outcome would be better and cheaper for all. It will be those who look different, sound different, or dress differently from an “average British citizen” (in the head of the person in front of them) who will be caught in the wider net of eligibility checks.

The ConversationThese policies do not protect human rights. They are not in line with my General Medical Council duties as a doctor or with NHS principles. They are not economically sound. They will not protect the health of the public. These policies feed a narrative that the NHS crisis has been caused by migrants – not the rich people who broke the banks and heralded in a period of austerity. We must look up and hold those people in power to account and look around at our fellow human beings with compassion and kindness.

Jessica Potter, MRC Doctoral Clinical Research Fellow, Queen Mary University of London

This article was originally published on The Conversation. Read the original article.

Will future parents need a license?

I ran into a discussion on Kialo, to which I quickly contributed the first paragraph below and penned what I have added below, all within about five minutes. I later edited it a bit, to make it easier to read.

I am so pleased someone started this discussion. I promote non-discrimination of embryos and fetuses. A child is not a consumer product but a human being who must be loved and encouraged to flourish. How can you love one child but not another if the latter is non-mainstream? I’ve been thinking about that and it’s made me wonder if it actually means that the parents aren’t fit to be parents. I haven’t dared say that out loud yet, but this discussion clears the road for me.

So yes, maybe parents-to-be should require vetting.

Within a few decades, we will no longer require sex to create babies, but will make our offspring in the lab, possibly on the basis of skin cells from each of the parents. We’ll probably look after our little gestating (incubating) children as if they are rare orchids that we want to bring to bloom.

(So by that time, women will no longer have a need for abortions and they won’t have to menstruate and experience PMS any longer either.)

I can imagine very well that you will require a license in the future in order to have a child. Somehow, that feels like an automatic consequence of the possibilities we will have then.

And also, indeed, why should adoptive parents be scrutinized but are natural parents free to do whatever they want?

And after all, in that distant future, anyone who wants can probably have a child (technically speaking). Even adoption may slowly become a thing of the past, that is, if we get to the point that we no longer succumb to illnesses and accidents and maybe even can choose when our lives end.

I hasten to add that at the moment, natural parents are not always free to do as they please either, of course. For example, in countries with a great deal of inequality, the state may step in on the basis of what is no more than prejudice in practice.

Nowadays, some children suffer horribly, either because of their parents or because of someone else. Sometimes before children are removed from their parents and sometimes afterward.

In practice, perhaps it won’t be an actual license but a training program that must be completed with good results. If that training is tough and long enough, that alone will already sort committed parents from parents who aren’t ready for a child.

Would they have to get a license or go through some kind of training program every time they want to have a child? Yes, I think so. Insights change.

It’s even possible that parenting will eventually become a profession.

PS
Unfortunately, Kialo may not work very well with Linux. I was able to post my contribution, but seem unable to comment on other people’s contributions. Maybe it’s part of the learning curve, but I did see the intro video and the comment option mentioned in it simply does not seem to exist for me.

Foreign criminals’ deportation scheme ruled unlawful — UK Human Rights Blog

R (Kiarie) v Secretary of State for the Home Department; R (Byndloss) v Secretary of State for the Home Department [2017] UKSC 42 In a nutshell The Government’s flagship scheme to deport foreign criminals first and hear their appeals later was ruled by the Supreme Court to be incompatible with the appellants’ right to respect for […]

via Foreign criminals’ deportation scheme ruled unlawful — UK Human Rights Blog

Human rights for just a few, that’s discrimination. Human rights apply to all human beings.

It has just been the 6th anniversary of an important human rights case, that of Mark and Steven Neary. Steven, who is autistic, was detained in local authority care for over a year before his dad used the Human Rights Act to get him home. RightsInfo has made a powerful short film to mark the […]

via A powerful new human rights film  — UK Human Rights Blog

Equality: the Black Pete debate

Sinterklaas! Tomorrow! And today is pakjesavond, for those who don’t have the southeastern Dutch tradition that I grew up with. I never knew pakjesavond. As a child, I would come downstairs to breakfast on 6 December and find the table covered with gifts and goodies, and the chairs too.

flower bulb fieldsUnless you’ve been living on Mars, you likely are aware of the hot debate surrounding the Netherlands’ Black Petes.

(Thank you, Independent, for the quotation marks around ‘racist’ in that headline.)

Continue reading