Why doctors need to improve the way we discuss assisted dying

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Paul Teed, University of Bristol

Assisted dying can be a divisive and polarising subject. But there is one aspect on which most people probably agree – the need to improve the conversations people have about death.

At the moment, there is uncertainty in the UK regarding what people – especially health professionals – can and cannot say when the topic of assisted dying comes up. Conversation can become especially stilted when it turns to patients obtaining the medical documentation required for an assisted death abroad.

The situation requires clarification. Currently, if a doctor in the UK writes a specific report to help with an assisted death abroad (three organisations in Switzerland accept UK citizens), the General Medical Council (GMC) may view this as a “fitness to practice” issue.

However, if a doctor provides copies of medical records, even with the knowledge that they will be used for an assisted death, it is not a fitness to practice issue. The GMC’s position is that this would be “too far removed from the act of suicide to constitute encouragement or assistance”. Yet the doctor can still refuse this request for documentation. (The patient can then appeal to the information commissioner under the Data Protection Act 1998, but this may be unsuccessful.)

The desire to hasten death affects a significant proportion of dying people – not just the small proportion who undergo an assisted death. In places where a form of assistance to die is legal, such as the US state of Oregon, just 10-20% have their request agreed to. The ability to talk about these desires and the presence of an option can “make the future feel navigable”.

It is hard to measure how common a desire to hasten death is. One study revealed it was up to 11% within people in a UK hospice. The meaning behind this desire is varied, ranging from an avenue to begin talking about dying more generally through to wanting greater control.

I started my own research after noticing two major barriers in the conversations about assisted dying between doctors and patients. First, the Swiss organisations advise applicants not to divulge the reason for a request for medical documents due to the risk of refusal. Second, the uncertainty surrounding professional guidance means patients are not telling doctors about their plans or fears (and they may not be asked about them).

These barriers are affecting the crucial therapeutic alliance between doctor and patient. They also remove opportunities to highlight the specific needs of the dying. The fact that people change their mind about hastening their death is a reason to address their fears upfront – not push them away or ignore them. Yes, end-of-life care needs more funding, but this is of no use if those that need it do not feel they can be heard.

‘Travel plans’ often go undiscussed.
Dignity in Dying

Sadly, this is what is borne out in Dignity in Dying’s recent publication The True Cost: How the UK Outsources Death to Dignitas. The report revealed a large discrepancy between those who felt they should be able to discuss these desires (82%) with those who felt that they would (32%). One respondent commented:

I wish there was somebody that was medical that you could talk to and [who could] explain … I just wish there were people you could talk to.

Another recalled a doctor saying: “You know you can’t talk about this sort of thing.”

Dying to talk

Throughout the publication runs a desire for openness to be able to talk about thoughts they are having, researching and acting upon. Instead, people encounter systemic obstruction, disapproving prejudgement and arbitrary practices. At its worst, the document highlights active silencing of these voices – people being told they mustn’t talk about assisted dying with anyone involved in their care.

Being able to talk openly about a desire to hasten death serves a vital palliative and therapeutic function. The opportunity to discuss perceptions of dying on the patient’s – rather than the profession’s – terms would help people to consider what it means (for them) to die. It could also serve to reaffirm social bonds, empower self-identity and give a voice to suffering.

Yet currently, people are possibly going abroad to die without ever talking to a healthcare professional about it.

Everyone wants to work towards getting our only experience of death right. For this to occur, the medical profession must avoid its dominance over end-of-life discussions, and seek instead to address the concerns of the dying – whatever they are. If not, the harm caused by the current fudge of legislative and professional guidance will not only go unrecognised, it will grow.

Listening and discussing requests to hasten death is not remotely illegal. The GMC itself states that doctors should “be prepared to listen and to discuss the reasons for the patient’s request”.

The ConversationImproving these conversations is an urgent middle ground that both sides of the assisted dying debate can surely agree on. It is vital that the voices of the dying are heard.

Paul Teed, PhD candidate, School of Population Health Sciences, Bristol Medical School, University of Bristol

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

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The menopause: dreaded, derided and seldom discussed

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Sign of caution – or celebration?
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Author: Isabel de Salis, University of Bristol

Women experience the menopause between the ages of around 45 and 55, but their experiences of this significant stage of life are diverse. Each woman’s menopause is unique.

Common themes run through women’s stories, however. From our research talking with women in midlife, we found that they often talk about menopause as a normal, inevitable and natural process, which of course, it is. Seeing menopause in this way allows women to minimise symptoms and behave stoically. “It’s no big deal,” one woman told us. “You just get on with it.”

But this positive approach can also be a rebuttal of a common perception in society of the menopause as a negative event – a view which leads to denigrating women who react differently to the menopause. Continue reading

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To break Brexit talks deadlock the EU must agree ‘sufficient progress’ has been made – what does that mean?

The next stage of the Brexit negotiations hinges upon two words: “sufficient progress”.

European Council meeting, 20-21 October 2016. European Council Flickr  CC BY-NC-SA 2.0

At the European Council meeting on October 19 and 20, leaders of the EU27 will review developments in the Brexit negotiations and establish whether they believe enough progress has been made in the first phase of talks to move on to the second phase. That would allow discussions to begin on the future relationship between the UK and the EU.

The term “sufficient progress” is embedded within the European Council’s negotiating guidelines for Article 50 – the part of the EU treaty which governs how a state leaves the bloc. It is born out of the EU’s phased approach to the Brexit negotiations, which was later confirmed by both the EU and the UK in June 2017.

The ongoing first phase of Brexit negotiations is focused on finding solutions to three key issues: the status of UK citizens in the EU and EU citizens in the UK, the border between the Republic of Ireland and Northern Ireland, and the settlement of the UK’s financial obligations.

Agreeing whether there has been been sufficient progress means solving these three key problems. What the agreed solution ought to look like, however, is more elusive. Continue reading

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North-South Free trade Agreements – Trade, Policy and Europe

At the University of Bristol Law School, we are investigating the dynamics of negotiation, implementation, and enforcement of North-South trade agreements.

The following is a record of the findings of the panels speaking at an event held on 4 October 2017. The first panel (Clair Gammage, Maria Garcia and Tonia Novitz, chaired by Phil Syrpis) examined the external policies of the European Union (EU) particularly in the context of regionalism and free trade agreements (FTAs). The second panel (Emily Jones, Sophie Hardefeldt and Gabriel Siles-Brügge, chaired by Tonia Novitz) examined how the UK could – in the event of Brexit – depart from or improve on the practices of the EU.

EU policy relating to North-South trade agreements

Clair Gammage (Bristol) discussed the transformation of the EU’s relationship with its trade partners across the African, Caribbean, and Pacific regions and was able to point to the surprising small victories that low-income countries in the Global South had achieved when negotiating trade agreements with the EU. Continue reading

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Policy makers do not need to introduce formal structures to achieve political innovation

Informal governance can be defined as a means of decision-making that is un-codified, non-institutional and where social relationships play crucial roles. Research evidence suggests that an analysis of informal governance is essential if we are to fully understand how political innovation occurs.

Dr Sarah Ayres, Centre for Urban and Public Policy Research

The issue of informality in policy-making is particularly timely as public managers seek to manage multifaceted policy problems within contested and uncertain environments. One view is that political decision-making has increasingly moved away from the national level of government to a more spatially diverse, temporal and fluid set of arrangements. From this perspective, policy-making is increasingly taking place in arenas where there is no generally accepted rules and norms according to which politics is to be conducted. Some argue that it is the surge of ‘wicked problems’ that have prompted this type of leadership, as multiple actors come together to solve complex policy problems. These developments raise important questions about how informal governance operates in this transforming policy landscape and the impact it has on political innovation. Yet, there is comparatively little research on the role of informality in policy-making, partly because of the complexity of studying it.

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Multimorbidity could cause a healthcare crisis – here’s what we can do about it

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Older patients often suffer from multiple conditions.
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Professor Chris Salisbury profile picture

Professor Chris Salisbury, Primary Health Care, University of Bristol

Multimorbidity is one of the biggest challenges facing healthcare. In recent years, a succession of research studies have shown that people with multiple health problems are more likely to have a worse quality of life, worse mental health and reduced life expectancy. The more health problems someone has, the more drugs they are likely to be prescribed and the more frequently they are likely to consult a GP or be admitted to hospital.

You might think this is all rather self-evident – it’s hardly a surprise that sick people get ill, take medicines and go to doctors more often than healthy people.

So why has multimorbidity become so prominent in discussions about healthcare over the last decade?

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Statins and venous thromboembolism: should statins use extend beyond lowering cholesterol?

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Dr Setor Kunutsor, Research Fellow in Evidence Synthesis/ Epidemiologist, School of Clinical Sciences, University of Bristol

Statins are well known and established for their role in the prevention of cardiovascular disease (heart attack, strokes, or angina) and this is based on their ability to lower levels of cholesterol in the blood.

However, there is evidence to suggest that statins have multiple effects and these include potential beneficial impacts on other disease conditions.

Venous thromboembolism is a condition involving the formation of blood clots in the veins of the lungs and lower limbs. It affects millions of people globally and is a preventable cause of hospital-related deaths.

Standard techniques for the prevention of venous thromboembolism include the use of elastic stockings, compression devices, patient mobility and rehabilitation, and anticoagulant therapy (blood thinning medications).

Blausen 0290 DeepVeinThrombosis

Deep Vein Thrombosis. Blausen.com staff (2014). “Medical gallery of Blausen Medical 2014“. WikiJournal of Medicine 1 (2). DOI:10.15347/wjm/2014.010.  ISSN 2002-4436

Evidence now suggests that statins also have the ability to reduce inflammation in the body and prevent the formation of blood clots. Based on these properties, there have been suggestions that statins may prevent venous thromboembolism.

Several studies have investigated this, however the evidence has not been conclusive until now.

We decided it was time to bring all the evidence together and evaluate if statins really did have a protective effect on the risk of developing venous thromboembolism.

Altogether we analysed 36 studies (13 observational cohort designs and 23 randomised controlled trials) with data on more than 3.2 million participants.

Our results showed a clear link between the use of statins and a reduced risk of developing venous thromboembolism. Continue reading

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It’s time to put mature students at the heart of widening participation

Why should we care about mature students?

It has become almost routine to read stories giving ‘more bad news’ about part-time student numbers in universities.

Tom Sperlinger is Reader in English Literature and Community Engagement at the University of Bristol.

Lizzie Fleming is Widening Participation and Student Recruitment Officer, and a postgraduate student, at the University of Bristol

On 29 June, the Office for Fair Access (OFFA), which monitors access to universities in the UK, published its outcomes for 2015-16. The report highlights a ‘crisis’ in part-time numbers, which have fallen for a seventh consecutive year, a decline of 61% since 2010-11. Since more than 90% of part-time students are over 21, this has also led to a significant decline in the number of mature students in the sector.

This also means that, overall, the number of students entering universities has fallen significantly since 2012. Continue reading

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The importance of the advice sector in the context of legal aid cuts

Dr Sarah Moore, Lecturer in Sociology (Department of Social and Policy Sciences, University of Bath).

The PolicyBristol blog has the pleasure of welcoming this guest post by Dr Sarah Moore, who was one of the participants in the recent book launch of Advising in Austerity. Reflections on challenging times for advice agencies (Policy Press, 2017). Dr Moore is also the co-author of Legal aid in crisis. Assessing the impact of reform (Policy Press, 2017) and offers here her insightful views on the need to boost the activities and funding of the legal advice sector.

Anyone familiar with legal aid reform will know that the Legal Aid and Sentencing of Offenders Act 2012 (LASPO) has dramatically altered the meaning and nature of legal aid. It has meant, amongst other things, a significant reduction in funding, largely achieved by taking a large number of areas of civil law out of scope, including private family law cases, and almost all cases involving social welfare, housing, medical negligence, immigration, debt, and employment.

The most strenuous critics of LASPO have pointed out that the recent funding cuts restrict people’s access to justice. In answering to these problems, LASPO incorporated a set of exceptions. Those who could provide evidence that they had been victims of domestic violence, for example, were to be given access to legal aid to pursue family law cases. And an Exceptional Case Funding caveat was incorporated in the Act for those who could successfully make a case that their human rights would be breached without publicly-funded legal assistance. Both have been woefully inadequate.

Research led by Rights of Women indicates that, even after the government relaxed the rules on domestic violence evidence and legal aid eligibility, a significant proportion of female victims (38% in their 2014 survey) did not have the mandatory evidence to receive publically-funded support. And the Exceptional Case Funding (ECF) scheme has been a disaster by anyone’s standards. In the first year post-LASPO, the Legal Aid Agency received only 1,520 applications for ECF. According to the Public Accounts Committee, only 69 were granted funding. That is far, far fewer than the Ministry of Justice and Legal Aid Agency had predicted in the post-LASPO period. Applications have picked up in the last year, as has the acceptance rate, but the fact remains that this safety net is sorely under-used. Continue reading

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The General Election 2017: national security, deradicalisation, and citizenship

As we head into the elections this Thursday, national security is a burning issue. The UK has been the target of three major terrorist attacks in the past few months. The latest attack in London comes within just two weeks of the bombing in Manchester last month. The involvement of British nationals in perpetrating these attacks has brought many questions about extremism, radicalisation and integration to the forefront.

Dr Devyani Prabhat, Lecturer in Law, Bristol School of Law

Party leaders are laying out their strategies for counter-terrorism. Theresa May has announced plans to set up a new counter-terrorism agency, monitor social media and web content for extremism, have stronger custodial sentences for terrorism, and work on integration of communities. Meanwhile Jeremy Corbyn has focused on the problems of British foreign policy, funding for terrorist activities, and the lack of policing resources. These plans are not reflected in their respective party manifestos and do not engage directly with the issue of alienated citizens. In fact, Prevent, a mainstay of counter-terrorism, is not even mentioned in the Conservative party manifesto, while the Labour manifesto merely mentions a review of Prevent. Both major parties are, however, likely to comprehensively rethink the current Prevent programme in light of the recent attacks. The Liberal Democrats and Green Party have already announced plans to replace Prevent. When such replacement or revision takes place, parties need to consider why minority citizens can become alienated and what British citizenship means to them as part of long term deradicalisation programmes. Continue reading

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