By Tim Tonkin 14 January 2016
The BMA has hosted forums around the UK to explore people’s attitudes towards end-of-life care in order to inform future policy. Giving patients timely information and options, including the choice of where they will die, are wishes expressed by the public and doctors alike, as Tim Tonkin reports
How the health service cares for people at the end of their lives has come under popular scrutiny in recent years through public and political debates around issues ranging from the Liverpool Care Pathway to assisted dying.
In many cases, these debates produce wide-ranging and occasionally polarised outlooks among politicians, the public, and even the medical profession.
With this in mind, the BMA sought to explore the views and perceptions surrounding EOLC (end-of-life care), as well as gauge opinion on the potential impact of PAD (physician-assisted dying) upon the doctor-patient relationship in a hypothetical situation in which PAD might be legalised in future.
In doing so, it is hoped that doctors will have an opportunity to participate directly in how future policy on such a hugely important and evolving area of medicine is formulated. In particular, the BMA is keen to encourage input from grassroots members and get them more involved in the policy-making process.
BMA representative body chair Ian Wilson says: ‘The UK has led the world in developing comprehensive and holistic care for people whose lives are coming to an end.
'Yet this new research provides further evidence that the provision of end-of-life care remains variable, dependent on a patient’s geographical location, their condition and their knowledge of local services.’
EOLC is the name given to the process applied to patients diagnosed with an advanced incurable illness, as well as those reaching the end of their lives generally.
It encompasses all aspects of care provided during an individual’s final months or weeks of life, from the alleviation of physical pain to meeting their emotional needs.
During the course of last year, the association staged a total of 21 consultation events, speaking directly to doctors and members of the public from across all four home nations.
On the back of the consultation events, independently commissioned research by a specialist social research organisation resulted in a report highlighting experiences and views on a range of issues, including what constitutes good care and what challenges there are to providing it, as well as exploring the implications of PAD on the doctor-patient relationship.
From a public perspective, the key components in good medical care at the end of life were clear: being given choice over types of treatment and where it was provided, and timely access to information and treatment.
Above all, patients wanted their care-givers to treat them as a person rather than as a condition or disease.
These attitudes were broadly echoed by doctors, who agreed that access and location of services, as well as communication and coordination among medical staff, were crucial to good care.
Hertfordshire consultant in palliative medicine Sarah Bell says that ensuring good care involves a number of factors but that the initial priority lies in identifying when palliative care needs to begin.
‘People must be supported as early as possible once they know that they have a life-limiting condition,’ she says. ‘It is important that palliative care specialists are involved early on in order to maximise the life that people can lead.
‘Often people are much more willing to talk about palliative care with a diagnosis of cancer, but [are] not always so ready with other conditions.
‘Another aspect is that people’s wishes, and [those] of their family and friends, [should] be taken into account as much as possible.’
Many doctors contributing to the study expressed concern over the consistency in quality of EOLC across national regions and different parts of the health service.
‘Some patients seem to have a very good outcome,’ one doctor said at a discussion event.
‘If they’ve got into the right sort of system — they have the right sort of cancer, the right specialist nurse that they’ve dealt with, the right access points — then they seem to be fast-tracked into the hospice and so on. Other people haven’t had so much good experience, really.’
However, Dr Bell suggests that in her experience consistency was improving.
She says: ‘As a registrar in training, there were differences [in consistency of care standards] but in most of the areas I have worked, [health services] are now in the process of setting up one-stop-shop approaches.’
Not being able to choose where care is provided and where final days are spent was another prime concern, often owing to poor coordination of services and/or a lack of hospice beds or district nurses in the patients’ local area.
Alone to the last
One doctor told the study: ‘If a person is alone ... it’s our experience that they don’t die at home. There isn’t the care available to look after them.
‘You don’t need doctors and palliative care consultants — you need carers to be there to hold their hand.
'The default method is to bounce them into hospital and, tragically, they end up spending the rest of their short lives there.’
Discussion with doctors addressed four distinct areas in providing quality EOLC during the national events.
These included the assessment of patients’ mental capacity, pain relief, the detection and treatment of depression, and providing patients with a prognosis regarding life expectancy.
On account of the inherent difficulties in giving accurate timescales for life expectancy, particularly in the medium to long term, many doctors felt uncomfortable about the prospect of having to give uncertain answers or risk failing to meet a patient’s request.
For many doctors, a terminal diagnosis and the commencement of EOLC initiates a fundamental shift in the doctor-patient relationship, from one of simply providing treatment to a more intimate interaction involving emotional support and mediation.
Even so, responses to the study revealed that very few doctors claim to have had any training in discussing death and the dying process with patients, with many doctors having to develop these skills ‘on the job’.
Dr Bell says that for most doctors, discussing end-of-life care with a patient for the first time was hard, but that confidence and training played a vital role — a factor that medical schools are now much more aware of.
She adds: ‘It is hard when you’re a GP and you’ve known a family for many years. You will have your own feelings when a patient receives a life-limiting diagnosis.’
Assessing a patient’s mental capacity and responding to depression in the terminally ill also present challenges, with some patients’ mental state fluctuating daily or even hourly.
Distinguishing depression in patients receiving EOLC from the natural response of grief can also be difficult to spot, with some doctors expressing fears over ‘medicalising’ normal emotional responses.
‘People who are dying come with lots of complex psychological issues … Patients can be very complex and it’s not just about depression because of their diagnosis — it’s about the other stuff that’s going on in their life.’
Trust forms the centre of the doctor-patient relationship, and never more so than when patients are coming to the end of their lives.
PAD, in which a doctor takes a participatory role in ending the life of a terminally ill patient, even if that extends only to providing information towards achieving this end, is an issue of frequent media focus and debate.
While attempts at legislating for PAD in the UK have had limited success, attempting to understand how PAD might affect the doctor-patient relationship is of significant interest.
Members of the public taking part in the BMA’s study were more likely to be distrustful of any potential system put in place to administer assisted dying, rather than of doctors themselves.
While some doctors suggested that a possible positive effect of legalising assisted dying would be to allow for greater openness and communication on a highly sensitive subject in the doctor-patient relationship, many other doctors believed the idea of assisting their patients’ deaths runs counter to the very essence of their ethical duties as physicians.
Many expressed fear that the legalisation of PAD would reduce trust in individual doctor-patient relationships and within society as a whole, with vulnerable patients such as older and disabled people being deterred from seeking medical advice.
London GP Kirpal Singh was among the doctors contributing to the BMA’s consultation events.
He said he would have concerns over the possibility that legalising assisted dying would leave older patients feeling under pressure to end their lives in order not to be a ‘burden’ to their family.
He added: ‘I don’t want to be sentimental, but I don’t think physician-assisted dying is rational.
‘In certain communities, men are dominant. There are so many people who would feel extremely pressured to end their lives. It suits the politicians and some youngsters.
‘We need more research and wider decision-making which considers the views of [older] people.’
Deliberation and debate
To encourage further feedback on the issues of EOLC and PAD, the BMA has produced information pages, where the report on EOLC and PAD can be downloaded.
Read the information pages and download the report
The association is also aiming to set up a dedicated discussion thread on the website’s communities section and will be encouraging debate on the project at divisional meetings during 2016.
This feedback will be used to inform future debates and to produce a report and relevant motions for submission to the BMA annual representative meeting 2016.
Additional reporting by Tammy Lovell
The story so far
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