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].’