After months of debate and shocking anecdotes in the national media about patients being apparently denied food and water, the fate of the Liverpool Care Pathway (LCP) has finally been sealed.
An independent review published last month found catastrophic failings in the way the end-of-life pathway was used in the NHS, and recommended it be ditched in favour of a system of individualised care plans.
It proposed that a named GP should step up as the ‘senior responsible doctor’ for every patient who is nearing the end of their life outside hospital.
Commissioned by the Government and chaired by Baroness Julia Neuberger, the review concluded that major decisions over the patient’s care should not be taken without the named doctor being involved and – although not an explicit recommendation – it highlighted as ‘particularly good practice’ situations where GPs provide families with a personal phone number so they can be contacted out of hours.
The review’s proposals echo closely health secretary Jeremy Hunt’s call for a ‘named clinician’ – ideally a GP – to be responsible for vulnerable elderly patients outside hospital, a plan due to be fleshed out in the Vulnerable Older People’s Plan, which will be published this autumn and enacted from next April.
But with GPs facing unprecedented demands on their time, and shrinking funding, how can these ideas be put into practice?
According to Dr Dennis Cox, chair of the review panel’s clinical subgroup and a GP in Cambridge, the recommendations are mostly about clearer lines of accountability and do not mean GPs will have to take back round-the-clock care.
He adds: ‘When you recognise someone is dying, good practice is to go to them and say, “I’m your GP, I’m going to be making the decisions if you’ve got any queries about it”. All this is saying is patients should know who’s in charge – the patient should know who the boss is and who they should come to.’
He says the intention is to reinstate the responsibility that was lost when patients stopped being registered with a specific GP under the 2004 contract.
Dr Cox explains: ‘Patients no longer know who their doctor is. The panel thought: “Isn’t terminal care something where you really need to know who your doctor is?”.
Dr Cox says there should be no pressure on GPs to be personally contactable at all times, but he adds: ‘When I’ve had a terminal care patient I’ve given them my home phone number – I think it’s one of the most important things you can do as a GP and people don’t tend to take advantage of it.
‘I’m not saying that’s what you should do. But you haven’t got loads of terminal care patients, you’ve probably only got three or four a year. And when you’ve got someone, you should keep an eye on them; they’re your patient.’
But other GPs are less keen for all GPs to give out personal contact details. GPC negotiator Dr Peter Holden says GPs should not feel obliged to be available 24/7. He says: ‘In terms of giving out phone numbers, it is for each GP to make their own decision. You’ve got to remember there are already arrangements to provide care out of hours. It may not be possible to provide that care. It is for each GP to decide.’
Baroness neuberger’s review recommended the LCP should be replaced within the next six to 12 months by an end-of-life care plan for each patient, backed up by condition-specific good practice guidance.
Professor Mayur Lakhani, GP clinical lead at West Leicestershire CCG and chair of the Dying Matters coalition and the National Council for Palliative Care, believes this will be a good thing and could lead to GPs taking more of a leading role in managing dying patients.
He says: ‘Because of the uncertainty and concern, I think it’s possible GPs will be more involved and will be required to support district nurses more. The main thing is talking to patients and families more, preparing the plans and carrying out regular reviews. I think the reviews in particular are a very practical thing that GPs might get more involved in.’
For Professor Lakhani, this means some GPs will need brief training ‘to become comfortable and confident in talking about death and dying’.
Dr Cox emphasises that the new personalised end-of-life plans will be ‘condition-specific’. ‘There is a problem with the LCP. It’s not good enough for people who are not dying of cancer – if you’re dying of heart failure or of COPD it is not entirely appropriate,’ he says.
Some believe the new care plans will simply lead to ‘cosmetic’ changes to keep the media happy. In evidence submitted to the review, the RCGP said GPs were avoiding the LCP because of negative media reports that linked it with withdrawal of food and drink, and poor communication over patients.
GPC deputy chair Dr Richard Vautrey says: ‘This yet again seems to be policy driven by certain sections of the lay media rather than any real clinical evidence. People want the fear taken out of death, and to know they will be cared for and supported when that time comes.’
Other GPs believe there were real practical problems with the LCP’s implementation, for example with the paperwork involved, and wider problems with end-of-life care. A striking Pulse poll of 363 GPs last month found that just 36% had confidence that the NHS would be able to give them a ‘good death’ – while 45% said they did not.
In any event, Dr Cox says the LCP has become a ‘toxic brand’ that can no longer be used even if the principles underpinning it remain sound – particularly because the term ‘pathway’ tends to imply an irreversible, ‘one-way’ route to death. He says: ‘There’s nothing wrong with using the principles behind the LCP as guidance for best care, but in general because patients are frightened of it, it’s just not helpful any more. It’s the same as what Dr Shipman did for morphine in a sense. If we’d tried to rehabilitate the LCP, we’d just have a load more scared people.’
The review also recommended funding should be made available for palliative care teams to be accessible 24/7, both in hospitals and in the community, together with better integration so that information on the patient and their care is easily accessible.
But what should GPs do while these arrangements are being put in place?
Dr Cox stresses that GPs can continue to follow the LCP for the time being and urges them not to abandon the principles behind such end-of-life care plans.
He says: ‘GPs should do all the things it says. They should sit down and have a conversation, explain what’s going on, consider the reversibility. We’ve said it should be gradually phased out over the next six to 12 months, so right now they can sit tight and carry on using it until further guidance comes.’
What is best practice for end-of-life care?
- Early recognition is important to allow advance care planning. Evidence shows outcomes are improved and patients are more likely to die in their preferred place.
- Around 1% of patients on a GP’s list die each year and at least 75% of deaths can be anticipated, so the current QOF palliative care register prevalence of 0.2% is too low.
- Ask: ‘Would I be surprised if this patient was to die in the next six to 12 months?’ If the answer is no, consider them for the palliative care register and discuss an advance care plan.
- Prognosis can be reviewed at team meetings using the Gold Standards Framework rating: red – a few days, amber – weeks, green – months.
- Patients near the terminal phase can be recognised by signs of multi-organ failure such as more time spent in bed, increasing drowsiness, withdrawal, reduced food and fluid intake, and swallowing difficulties.
- GMC guidance states patients and carers should be reassured that clinically assisted nutrition or hydration will be offered if of benefit but if a decision is made not to offer it, the patient will continue to receive high-quality care.
Professor Mayur Lakhani is chair of the Dying Matters coalition.
This advice is taken from Recognising the dying patient, a case-based learning module on Pulse Learning worth a suggested 1 CPD hour.
Would you give your personal contact number to dying patients?
‘Quite a few GPs do this voluntarily – I have for many years and it is not abused.’
Dr Peter McEvedy, GP in Northumberland
‘I give my number but tell patients there will be times when I am not able to respond. Should I never have any time off?’
Dr Alice Hodkinson, GP in Essex
‘I already work 50+ hours a week. If this is enforced, I will resign from general practice.’