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Doctors call on government to prioritise end of life care

Author: Caroline May
14 January 2016

Publishing new research which highlights a ‘postcode lottery’ of end of life care in the UK, the British Medical Association (BMA) is calling on the government to prioritise improvements in end of life care.

Launched in November 2014, the BMA’s latest research project set out to explore a number of practical and ethical issues around end of life care and physician-assisted dying.

As part of this, member of the public and doctors were invited to take part in a series of 21 discussion events around the UK last year.

The final report on this research, published today, reinforces many of the findings from other recent reports and inquiries – the variability in the quality and availability of end of life care, the need for better communication between doctors and their patients, and the importance of coordination of services in ensuring good outcomes for patients who are dying.

Noting that the UK has "led the world in developing comprehensive and holistic care for people whose lives are coming to an end," BMA representative body chair Dr Ian Wilson said that the research highlights how "the provision of end of life care remains variable, dependent on a patient’s geographical location, their condition, and their knowledge of local services."

Adding: "One member of the public who had recently suffered a bereavement described the quality of end of life care as a postcode lottery – a sentiment shared by the public and doctors alike.

"This is completely unacceptable. What came through loud and clear during the study was that people want to be treated as individuals, with care and compassion, and it is very important to many people that their families are involved in the process, but the current system doesn’t always enable this."

Communication was also highlighted as a particular area of concern. While doctors recognised that communication between them, patients and their family could be critical in making end of life easier to understand and accept, many doctors felt uncomfortable about the prospect of having to give uncertain answers, particularly on the timescale of life expectancy.

Very few doctors claimed to have had adequate training in discussing death and the dying process with patients, with many doctors saying that they had to develop these skills ‘on the job’.

Dr Ros Taylor, clinical director at Hospice UK, said that the report "shines a welcome light on the need for all those who care for people coming to the end of their lives to be more confident and work together to improve care, co-ordination and conversations."

Dr Taylor commented: "The British Medical Association has highlighted vital issues in the current provision and public understanding of end of life care. Frankly, too many people do not get the care they deserve at a precious time in their lives and this is simply unacceptable.

"Improved person-centred communication, understanding the relationship between patient, family and doctor, and the crucial need for more training of doctors in palliative care are key recommendations of this report.

"Hospices are extremely well placed to support and train clinicians in other settings by offering placements, mentoring and formal education to share the high standards of person-centred care that hospices are known for.

"Once again we have been presented with a challenge to do better for the people in the UK who die with unmet palliative care needs and missed opportunities for important conversations. We know what needs to be done – we need the political will to make change happen and for people to talk more openly about their priorities and goals once a serious illness is diagnosed. The hospice movement is more than ready to play its part."

"A top priority for government"

As well as exploring perceptions around the availability, accessibility and quality of end of life care, the research also looked at:

  • views on and experiences of the doctor-patient relationship and whether this changes when a patient has a terminal illness
  • patients’ fears and concerns about the impact of serious/terminal illness and facing death
  • views about the potential impact of legalised physician-assisted dying on the doctor-patient relationship
  • the professional and emotional impact of involvement in assisted dying upon doctors.

The BMA is calling on the government to prioritise improvements in end of life care.

Dr Wilson explained: "While positive steps forward, such as the new guidelines for the NHS, have been made, it is still essential that care for people who are dying becomes a top priority for governments across the UK.

"Doctors need the time, support and sufficient training necessary for caring for people at their end of life, and patients must be able to access a high quality of end of life care wherever they live, whatever their medical condition."

The National Council for Palliative Care (NCPC) also supports the BMA’s call for the government to prioritise end of life care.

Claire Henry, CEO of the NCPC, said: "End of life care has improved in recent years, but much more needs to be done.

"At the government’s request, I chaired a wide-ranging review into end of life care that identified a number of urgent areas for further improvement. I know the government received and appreciated the review, but we are still waiting for a detailed response after almost a year.

"At the moment, too many people do not receive good quality end of life care, and the system is disjointed and inefficient. The way we care for dying people and their families is an important measure of our values as a society. Improving their quality and experience of care should be an urgent priority for the government."

Later this year, the BMA will publish a further report, bringing together responses to the research and subsequent discussions with groups of members and experts in the fields and make a number of recommendations.

The report report can be downloaded from the BMA website.

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