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.
- 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 Supportive & 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