The funding of palliative care is to be reviewed, the government has announced.

The review, chaired by Tom Hughes-Hallett, chief executive of Marie Curie Cancer Care, will seek to improve how money is spent supporting people who are approaching death. It will enable patients to choose how and from whom they receive their end of life care.

The review will make recommendations for a funding system that will cover care provided by the NHS, a hospice or any appropriate provider which encourages more community-based care.

Care services minister Paul Burstow said: “The government is committed to more personalised care for people at the end of life. Just last month we made this clear through confirming that £40m will be invested to help hospices improve the environments where they provide care and support for patients, their families and carers.

“I am delighted that we are today taking the first step two honouring our commitment to introducing a new per-patient funding system for all hospices and providers of palliative care.”

At present about 57% of deaths occur in hospital, 19% at home and 17% in care homes and 5% in hospices. Surveys of the public have shown that most people would prefer to die at home.

The review will cover both adults’ and children’s services and will report by summer 2011.

Patients must be given the opportunity to discuss what treatment and care they want towards the end of their life, new guidance says.

The GMC guidance emphasises to doctors the importance of listening to patients and recording an advance care plan to ensure the clinical team understand, and follow, the patient’s wishes.

It’s the first time the GMC has provided doctors with detailed direction on advance care planning for end of life treatment and is intended to help them lead the way in its improvement. The wishes of such patients are not always known by doctors, the clinical team and patients’ families, and this can lead to patients not getting the care they want.

A key principle of the document, called Treatment and care towards the end of life: good practice in decision making, is that doctors 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 or their views.

Dignity and respect for the individual are also important themes in the guidance. Doctors are urged not to discriminate or rely on preconceptions of what kind of care particular groups of patients, such as the elderly or disabled, want towards the end of life.

The document also covers decisions involving premature babies and infants, doctors’ responsibilities after a patient has died and how they should approach conversations about organ and tissue donation. 

Dr Bob Taylor, paediatric intensive care consultant at the Royal Belfast Hospital for Sick Children and a member of the guidance 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.”

Dr David Vickers, registrar of the Royal College of Paediatrics and Child Health, commented: “The guidance places a welcome emphasis on the importance of recognising the rights of children and young people to be involved in these difficult decisions and underlines the importance of considering children’s views, however young they are.

“Paediatricians have a duty to safeguard and protect the health and well-being of children and young people by acting in their best interests. Parents and others close to the child also have this duty, so the emphasis on good communication between doctors, patients, families and the wider healthcare team in order to reduce conflict and disagreement is to be commended.”

Dr Stephanie Brown, director of policy at medical defence body MPS, added: “The legal and ethical environment in which doctors are delivering end of life care and treatment has changed and it is important that they are aware of, for example, the development in case law, the requirements of the Human Rights Act and the Director of Public Prosecution’s guidelines for prosecution over assisted suicide.

“The issues of end of life care and assisted suicide are intertwined, and although not within the remit of the GMC, the release of this guidance again highlights the need for greater clarity around the position for doctors facing difficult cases and requests from patients considering assisted suicide.”

The GMC considered 529 written responses to its consultation from a wide range of individuals and organisations, as well as more than 600 individuals who attended consultation events.

Read the full guidance here.

Nil by mouth should be a last resort rather than the first option when caring for patients at the end of their life, an influential working party has recommended.

Its report, called Oral feeding difficulties and dilemmas, is a response to a lack of medical consensus on when artificial nutrition and hydration is appropriate.

The report recommends that oral intake should be the main aim of a nutrition strategy at the end of life. Even if a patient is deemed to have an ‘unsafe swallow’, a risk management approach may offer them the best quality of life.

Nil by mouth should be a last resort and, when tube feeding is necessary, this should be additional whenever possible and done with clear clinical objectives in mind. It found that many care homes across the country are making it a condition of residence that people, often in the advanced stages of dementia, have a tube fitted into their abdomen.

To ensure patient centred decisions about artificial nutrition and hydration are being taken, it recommends that there needs to be a clear agreement about what the aims are of any regimen. Such decisions should never be based on the convenience of staff or carers, it concludes.

Dr Rodney Burnham, co-chair of the working party, hoped the report would bring clarity to a challenging area. He said: “Feeding difficulties can create great uncertainties and even confusion among healthcare professionals, as well as patients and relatives.”

All trusts and care homes to have sufficient staff, especially at meal times, to assist and feed those patients who require a longer time to eat an adequate meal, the report says.

When oral feeding difficulties occur, a doctor-led nutrition support team, should work with patients and their families.

The report was produced by the Royal College of Physicians and British Society of Gastroenterology, and involved a multidisciplinary team of nutritional experts, medico-legal experts and patient representatives.

They heard evidence of poor practice involving the withdrawal of feeding, as well as its inappropriate continuation. There were also reports of substantial disagreements between health professionals and family members when patients were unable to articulate their wishes.

The report follows last year’s row over the effectiveness of the Liverpool Care Pathway. The guidance, which describes when fluid and drugs can be withdrawn and sedation used with terminally ill patients, was attacked by a group of senior doctors for encouraging the withdrawal of treatment.

Its aim is to improve care by providing healthcare professionals, patients, their families and carers with practical advice that has a sound legal and ethical basis and prevent disagreements.

Patients on the Liverpool Care Pathway for the Dying Patient (LCP) are receiving high quality care in the last hours and days of life, an audit claims.

The second National Care of the Dying Audit of Hospitals - which covered 155 hospitals and 4,000 patients - suggests that the LCP provides a valuable framework in which clinical judgement can be exercised for the benefit of patients.

However, the findings conflict with the views of a high profile group of consultants who recently wrote to The Telegraph saying that growth in the use of LCP was a “national crisis”.

One of the main aims of the LCP is to support the management of distress caused by agitation and restlessness in dying patients with medication given at an appropriate dose in relation to the severity of the symptom.

The audit shows that, in their last 24 hours, 65% of patients needed no continuous subcutaneous infusion of medication to control distress from agitation or restlessness. Three out of ten had low doses of medication to relieve symptoms delivered by a subcutaneous infusion, with the remaining 4% requiring higher doses. The vast majority of patients were reported to be comfortable, claims the audit.

The authors said: “These findings indicate that dying patients receive good clinical care, tailored to the individual and their distress, when supported by the LCP.”

The number of hospitals using LCP has increase by 31% in the past two years.

This, however, is a cause of concern for Prof Peter Millard, emeritus professor of geriatrics at the University of London, and co-author of The Telegraph letter. He said: “The risk as this is rolled out across the country is that elderly people with chronic conditions like Parkinson’s or respiratory disorders may be dismissed as dying when they could still live for some time.

“Governments have got rid of respite care and geriatric wards, so we’re left with a crisis. The Government has said let’s develop a service to help people die at home - what they should be doing is helping them live. Only when death is unavoidable should you start withdrawing treatment.”

The audit, which was led by the Marie Curie Palliative Care Institute Liverpool (MCPIL) in collaboration with the Royal College of Physicians, does highlight areas for improvement. While communication regarding the plan of care and recognition that the patient had entered the dying phase was generally undertaken with relatives or carers (achieved in 72% and 76% of cases respectively), this could be further improved.

Assessment of spiritual and religious needs and support to patients and their relatives or carers is poor. And more needs to be done on education and training, with only 39% of hospitals having an LCP Facilitator.

Prof John Ellershaw, director of MCPCIL, said: “Hospitals need to recognise that care of the dying is part of their core business. To achieve excellence in the last hours or days of a patient’s life, all health care workers caring for dying patients, and their relatives or carers, should undertake training and education in care of the dying.

“A good death should be the expected not the exception. How we care for dying patients is an indicator of the patient experience across our organisations.”