The whole ethos of care has surely been turned on its head.
Medicine, banked by Big Pharma, is now managed by economists. Asclepius has donned Death’s mask. The staff of Asclepius no longer bears Hermes wings; it wears a Death’s Head.
That is, perhaps, somehow fitting and appropriate for a National-socialist Health Service.
Defining someone as ‘dying’ defines also the type of ‘care’ they will receive. It will be a ‘care’ that pushes them along a path to an easy passing; it will not be a care that maintains them and supports them along what passage of life they have left. It will be the rule of pessimism rather than the rule of optimism which holds sway and that will direct decision-making.
Pessimism will rule, morbidity will cloud judgement and guide a reluctance to apply measures that might promote healing rather than ease dying.
Like succubae seeking out helpless souls, doctors are being asked to hunt down the frail, the feeble and the ailing.
The rule of optimism to fight for life, to ‘make a difference’, the instinctive response to dash to the rescue is made moribund.
No more is courage; the brave are held up to ridicule. The staunch who would defend life are held in no regard.
There is only the cowardice, often in the guise of ‘health and safety’, that says we cannot jump in to the rescue when the tide is sweeping the casualty away; that we may not rush in to save them from the blaze. There are medals only for the hesitant and the timid.
But doctors are healers; they look for indicators of ill health in order to manage them (at least) or rectify them and repair them. To use an analogy, if the cyclist sees they have a slow puncture, they patch it up. They pump up the tyre to give it a few extra miles!
From the moment of birth, we are dying, each and every one of us. Old age is, after all, a terminal illness. Even so, the preoccupation of the doctor has always been the preservation of life; of maintaining as good a life as may be maintained right up to the end of life. And only when that is no longer possible, do they manage as easier passing as may be managed. No less!
The better part of life is living, not dying. At birth, the cup of life is still full. The rule of optimism will say, as life proceeds, that the cup may become half-full; the rule of pessimism will say it is half-empty.
The throw away society has now entered the field of medicine. The doctor’s focus is no longer preoccupied with gaining a measure of quality of life; it is now tuned to giving up on the living altogether. To use the same analogy, when the cyclist now sees they have a slow puncture, they will throw it out. Why bother with the effort to make the repair? This is the throw away society; tyres are cheap.
And life is cheap! This is the throw away society of throw away people!
This is not about care, it is about saving money. To be precise, £15 - 20 billion!
In Liberating the NHS: managing the transition Sir David Nicholson, NHS Chief Executive, sets out plans to to lead the implementation of Equity and excellence: liberating the NHS – the White Paper published 12 July 2010.
He focuses on the need for the NHS to continue providing high-quality cost-effective services, while making the required productivity savings of £15-20 billion. The Quality, Innovation, Productivity and Prevention (QIPP) programme is central to this process.
(NHS National End of Life care Programme - QIPP,Equity and Excellence 15 July 2010)
Typically towards the end of life, each unplanned admission to hospital costs more than £3,000. In the last 12 months before death, patients average 3.5 admissions each, with estimates that at any one time 20% of all hospital beds are occupied by people who are dying. If each person had one less crisis admission, the NHS would save £1,350,000,000 (NHS QIPP EOL workstream 2010).
"They can get it wrong when selecting you for the Pathway. They can get it "hopelessly wrong" when you're 'dead'. How accurate can they be when singling you out for their hit list?"
(Liverpool Care Pathway – Doctors, Astrologers And Weathermen)
This is Dying Matters –
Identifying end of life patients
This is Dying Matters –
Identifying end of life patients
Recognising that someone is entering their last year of life benefits us all.
- The patient and their carers have time to deal with the news and realign their priorities
- The patient is less likely to be subject to treatments of limited clinical value
- You can plan appropriate end of life care rather than deal with a series of crises
- Well-organised community support can halve the cost of hospital admission and result in 70% of people realising their choice to die at home – over twice the number in the general population.
There are some simple ways into identifying which of your patients may be entering the last year of life.
Start with the numbers
- If about 1% of your practice population will die in the next year, roughly how many should you have on your register?
- Death usually occurs in old age: in 2008, 62.6% of all women who died were over 80 years and 43.2% of all men; older people are a priority to consider.
- Cancer only accounts for about 25% of all deaths – it shouldn’t dominate your register.
- Almost a quarter of all deaths are now in a residential or nursing home. People are typically already frail by the time they move into registered 24-hour care and on average die within 18 months of admission. All your older patients living in registered homes should have the opportunity to express preferences re their preferred place of care and be actively considered for your register.
- Some of your deaths will be genuinely 'unexpected': around 16% each year are in under 65-year-olds, but in over 65-year-olds only 0.25% are from 'external causes'. Many of these deaths will occur in older people with established disease, with the main causes being cerebro-vascular, acute respiratory and acute myocardial infarction (Predicting death - estimating the proportion that are 'unexpected'; www.endoflifecare-intelligence.org.uk).
- In more deprived populations, more deaths occur in the younger ages of the older population for both men and women.
Trust your intuition
- Ask yourself, “Would I be surprised if this person were to die in the next 12 months?” This simple question is accurate seven times out of ten.
- If not, talk to them and consider registration.
- If it would be a surprise to you if they were to live longer than 6-12 months, they are a high priority for talking and planning.
General clinical indictors of deterioration and frailty
The GSF Prognostic Indicator Guidance has details of clinical indicators by condition, but the presence of any of the following should trigger concern when associated with advanced age and / or disease:
- Limited self-care and interest in life: in bed or a chair more than 50% of their time.
- Breathless at rest or on minimal exertion (MRC scale 4/5).
- Progressive weight loss (>10% over last six months).
- History of recurring or persistent infections and/or pressure ulcers.
Metastatic disease should always trigger consideration of supportive care; WHO states that in cancer patients >50% of time in bed or lying down gives a prognosis of fewer than three months survival.
Triggers and opportunities
- Take the opportunity during routine consultations or visits to ask yourself the ‘surprise’ question and be alert to indicators of frailty and deterioration.
- You may then want to create an opportunity for a conversation you can plan in advance.
- A change in personal circumstances, particularly deterioration of a partner, can be a good trigger and opportunity to initiate a conversation.
- A clinical change, e.g. a new diagnosis, or a hospital visit.
- Feedback from a colleague, e.g. a district nurse concerned about a persistent pressure ulcer, or a discussion with a consultant in secondary care.
There is more on this in the section Having the Conversation.
- The RCGP has developed the Gold Standards Framework Identification Toolkit to help identify terminally ill patients. Not only does it boost the chances of early identification, it can help determine what stage the patient is at through the prognostic indicator guidance (PDF) tool. The tool can be used by individual clinicians or by multi-disciplinary teams to judge whether patients are entering the dying phase of their lives. If this is the case, a discussion should be initiated with patients about their wishes.
- Macmillan Cancer Support, NHS Camden and NHS Islington have produced a quick guide to identifying patients for supportive and palliative care at the request of GPs.
- The Scottish Palliative Care Indicators Tool (PDF) is a handy one-page holistic guide to prognostic indicators.
- The latest comprehensive clinical guidance for identification can be found on the Royal College of General Practitioner's End of Life Care microsite