More support for patients to plan end of life care

New guidance for doctors from the General Medical Council

Patients must be given the opportunity in advance to discuss what treatment and care they want towards the end of life, according to new guidance from the General Medical Council.

For the first time, the GMC has given doctors in the UK guidance on advance care planning for patients nearing the end of life, including how to manage advance requests and refusals of treatment.  The guidance has been updated to reflect concern from patients that they would not receive the treatment and care they would want towards the end of life.  It emphasises to doctors the importance of listening to patients and recording an advance care plan to help ensure that everyone involved in treating the patient can understand and follow their wishes.

The new guidance, Treatment and care towards the end of life: good practice in decision making, has been developed to help doctors make complex decisions to lead the way in improving end of life treatment and provide better care to patients. The guidance stresses the vital importance of good communication between doctors, patients and their families as well as between members of the healthcare team.

A key principle in providing care means that doctors must start from a presumption in favour of prolonging life and must not be motivated by a desire to bring about the patient’s death.  However there is no absolute obligation to prolong life irrespective of the consequences for the patient, and irrespective of the patient’s views.

‘This is one of the most challenging areas of practice and both doctors and patients have told us that good care needs good communication. That means listening to patients and families, creating opportunities for them to talk about the care they want before death, and explaining the options. Often this is not easy especially when patients are moved to a different setting, when care is provided during the night or at weekends, when doctors are under pressure or where there are language barriers.’ said Niall Dickson, the GMC’s Chief Executive.

The wishes of people approaching the end of life are not always known by doctors, the wider healthcare team and patients’ families, and this can lead to patients not getting the care they want, in the setting where they would want to receive it. Patients often have concerns that they will be under-treated or over-treated towards the end of life.

For the first time, the guidance covers how to respond to a patient’s advance request for treatment towards the end of life and there is new guidance on decisions involving premature babies and infants. There is also advice on doctors’ responsibilities after a patient has died and how they should approach conversations about organ and tissue donation. 

The guidance was developed over two years and involved an extensive consultation with doctors, patients with life limiting or terminal illness and their carers, family members and healthcare teams. The GMC considered 529 written responses to the consultation from a wide range of individuals and organisations, including major world faiths, patient groups, medical organisations and charities, as well as more than 600 individuals who attended consultation events across the UK.

Dignity and respect for the individual are key themes in the guidance. Doctors must not discriminate or rely on preconceptions of what kind of care particular groups of patients – for example, people with disabilities, the elderly, or those from ethnic minority groups – want towards the end of life. Responses to the consultation, and previous research, have suggested that some of these groups can receive poorer care at the end of life. 

Niall Dickson added:

‘In the UK we have led the world in the care of patients at the end of life but we also know there is more that can be done. Every day at the front line of care doctors are having hard conversations with patients and their families and helping them to make incredibly emotional and difficult decisions.  We hope this guidance will support them in providing the best quality of care and support’.

Lady Christine Eames OBE, Chair of the Working Group on End of Life Decision Making, said:

’Decisions at the end of life can be incredibly difficult, and medical advances have added to the complexity. Throughout the development of the guidance, I have been deeply impressed by the commitment, sensitivity and thoughtfulness shown by doctors, nurses and others working with patients who are approaching the end of life.  We considered the many responses we received to the consultation with great care and they have helped us shape this guidance, which will support doctors to make decisions within a clear framework of principles, which are ethically and legally accepted within our society.’

Dr Bob Taylor, Consultant, Paediatric Intensive Care, Royal Belfast Hospital for Sick Children, former Vice President of the Northern Ireland Ethics Forum and a member of the Working Group, said:

’Doctors often have to initiate the most difficult conversations at the most difficult time for the patients, their families and carers, yet these conversations are so important in reducing the distress and anxiety that are often felt as patients approach the end of life. I have seen first-hand the enormous benefits brought by doctors working closely with the patient, their family and carers, and the wider healthcare team through every stage of treatment and care.’

Jonathon Hope, a member of the Patient and Carer Steering Group and the CEO Sponsor Group of the Modernisation Initiative End of Life Care Programme in Lambeth and Southwark and speaker at the GMC’s End of Life Care Conference, said:

’I have had 25 years of kidney failure and in that journey I have faced death, seen fellow patients die, observed the difference between a good and a bad death and cared for the dying. Much of the care has been exceptional, however, I believe it would be easier for us each to receive the end of life care we would like if, as doctors and patients, we were more open about dying. I welcome this guidance, which I believe will help all patients and their families have a voice in how they want to die.’