The BMA is calling on all UK Governments to prioritise the improvement of end-of-life care and ensure a high-level of care is available across the country, as new research finds that the current provision does not consistently match either the public or doctor’s expectations.
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 Pathway1 to assisted dying2
As part of one of the most significant pieces of qualitative research initiated by the BMA3, specialist social research agency TNS BRMB held a series of events with doctors and members of the public across the UK, in order to build an understanding of both public and professional attitudes and knowledge around end of life care4, and to gauge opinion on the potential impact of physician-assisted dying5,6 upon the doctor-patient relationship, should it be legalised.
The research found that while there were pockets of excellence in end-of-life care across the country, the current system has led to a variation in the level of care between regions, within hospital authority areas, and based on a patient’s condition.
In particular, four areas of concern were raised:
– End-of-life care and dying were seen to be a topic which many people found uncomfortable, even to discuss between family and loved ones. Doctors recognised that communication between them, the patient and the family could be critical in making end-of-life easier to understand and accept, but many doctors felt uncomfortable about the prospect of having to give uncertain answers particularly on the timescale of life expectancy. During the study, very few doctors claimed to have had adequate training in discussing death and the dying process with patients, with many doctors having to develop these skills ‘on the job’. One doctor said: ‘We should say, ‘You are coming to the end of your life’. I think that is where we are failing patients. We are not preparing them. We are not even mentioning the word… So it all comes as a huge surprise… We should be far more frank.’
– Doctors were concerned that the quality of end-of-life care is varied. There was a generally held view that patients dying from cancer received better medical care because of the way cancer services were organised. Doctors also considered that due to a lack of coordination of care, the planning of end-of-life care often comes too late.
– On the whole, the public had low expectations and little knowledge of end-of-life care with one member of the public stating, ‘Reading between the lines, [end-of-life care] is the basic minimum to keep you ticking over until you fall off the great life conveyor belt and you pop your clogs…’ while another commented that there are ‘short staffed services so you’re not going to get what you need.’
– Concerns were raised about the considerable variation in the quality of end-of-life care in the community, and felt this was reflective of the lack of hospice beds in some areas, alongside poorly resourced and co-ordinated community services including district nursing.
– One doctor told the researchers: ‘If a person is alone… it’s our experience that they don’t die at home. There isn’t the care to look after them… and tragically, they end up spending the rest of their short life [in hospital].’
– Doctors agreed that for end of life care to meet patient needs, it must be well co-ordinated, irrespective of whether the patient was in hospital or living in the community. However, co-ordination of care was said to be variable across the country and where it worked less well was where co-ordination was often ‘assumed’ to have taken place.
– One doctor said: ‘Some patients seem to have a very good outcome. If they’ve got into the right sort of system – they have the right 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.’
Dr Ian Wilson, BMA representative body chair, said:
‘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.
’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.
‘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.’