Creator attribution: Nick Youngson – link to – http://nyphotographic.com/
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.
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”.
Improving 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.
Over 110,000 people were moved from their homes following the Fukushima nuclear disaster in Japan in March 2011. Another 50,000 left of their own will, and 85,000 had still not returned four-and-a-half years later.
While this might seem like an obvious way of keeping people safe, my colleagues and I have just completed research that shows this kind of mass evacuation is unnecessary, and can even do more harm than good. We calculated that the Fukushima evacuation extended the population’s average life expectancy by less than three months.
To do this, we had to estimate how such a nuclear meltdown could affect the average remaining life expectancy of a population from the date of the event. The radiation would cause some people to get cancer and so die younger than they otherwise would have (other health effects are very unlikely because the radiation exposure is so limited). This brings down the average life expectancy of the whole group.
But the average radiation cancer victim will still live into their 60s or 70s. The loss of life expectancy from a radiation cancer will always be less than from an immediately fatal accident such as a train or car crash. These victims have their lives cut short by an average of 40 years, double the 20 years that the average sufferer of cancer caused by radiation exposure. So if you could choose your way of dying from the two, radiation exposure and cancer would on average leave you with a much longer lifespan. Continue reading
Ethiopia tends to conjure images of sprawling dusty deserts, bustling streets in Addis Ababa or the precipitous cliffs of the Simien Mountains – possibly with a distance runner bounding along in the background. Yet the country is also one of the most volcanically active on Earth, thanks to Africa’s Great Rift Valley, which runs right through its heart.
Rifting is the geological process that rips tectonic plates apart, roughly at the speed your fingernails grow. In Ethiopia this has enabled magma to force its way to the surface, and there are over 60 known volcanoes. Many have undergone colossal eruptions in the past, leaving behind immense craters that pepper the rift floor. Some volcanoes are still active today. Visit them and you find bubbling mud ponds, hot springs and scores of steaming vents. Continue reading
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
The next stage of the Brexit negotiations hinges upon two words: “sufficient progress”.
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
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
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.
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.
As soon as women find out they’re pregnant, they are overwhelmed with information about what they can – or more likely can’t – eat and drink. Off the menu go soft cheeses, partially cooked eggs, raw meat, pâté, liver, caffeine, alcohol. It’s a lot to remember.
But the advice on eating fish when pregnant is the by far the most complex. Does it need to be so complicated? What is the actual evidence of the risks and benefits of eating fish for a mother-to-be? Continue reading
The 9th-15th October is Baby Loss Awareness Week, which provides a chance to raise awareness about the issues surrounding pregnancy and baby loss in the UK. Our team has over 10 years of research experience in what makes effective training for staff involved in care for bereaved parents, and seven years working to end preventable harm related to stillbirth.
Author: Dr Dimitrios Siassakos, Consultant Senior Lecturer in Obstetrics, Department of Obstetrics and Gynaecology, The Chilterns, Southmead Hospital and Bristol Medical School
We welcome the House of Commons debate on Tuesday 10th October 2017 as part of Baby Loss Awareness Week, and have drawn on our recent research at the University of Bristol to contribute to this debate.
Our research has found that bereavement care is inconsistent across UK hospitals, and variable in quality. Bereaved parents are not always involved in decision-making, and parents may not be aware of the process when hospitals review their baby’s death. Healthcare staff may not be supported in caring for parents.
Our research on what makes training effective highlights that not all training is equal.
How we would like our MPs to help:
In a systematic review published this month, we identified 153 communication skills training interventions for generalists in end of life care. In randomised controlled trials, training improved showing empathy and discussing emotions in simulated interactions (i.e. with actor patients) but evidence of effect on clinician behaviours during real patient interactions, and on patient-reported outcomes, was inconclusive.
The global increase in the proportion of older people and length of life means providing end of life care is now increasingly the responsibility of generalist as well as specialist palliative care providers. But many clinicians find communicating about end of life issues challenging: how do you best discuss imminent mortality, limited treatment options, what to expect when you’re dying, or a patient’s preferences for end of life care?
When this communication is done poorly, or not done at all, patients are confused and less satisfied with their care, experience inadequate symptom relief, and have worse quality of life. Staff who feel insufficiently trained in communication skills are more likely to provide depersonalised care and suffer from burnout.
While research in clinical communication has grown in recent years, there is little consensus on optimal training strategies and the most effective teaching methods. Continue reading