Professor Mayur Lakhani explains how his surgery improved their end-of-life care procedures.
Someone dies in the UK every minute. It is likely that the death will take place in hospital. Yet most people who are dying want to die in the comfort of their own home surrounded by friends and family.
As Dame Cicely Saunders said, 'How people die lives in the memory of those who live on'. This inspired me to take action in my practice. Not only is this important to do for society, for compassionate reasons but it also promotes quality, efficiency and reduces hospital admissions. Moreover the GMC now places a duty of doctors to identify patients early and to offer advance care plans.
How we did it
Our mantra was ‘expand expand expand' our end-of-life care (GSF) register. We did this by making a concerted effort to implement the end-of-life care pathway. We prioritised steps one (initiating conversations as end-of-life care approaches) and step 2 (advance care planning).
We adopted the GMC definition that patients are 'approaching the end of life' when they are likely to die within the next 12 months and used an opportunistic approach. Acting on clinical triggers –such as new diagnosis, or deterioration in condition, or transitions in clinical status, we asked the surprise question: Would I be surprised if this person were to die in the next six to 12 months?
Central to this was the use of evidence based prognostic indicators guidance. Here we found the Supportive and Palliative Care Indicators Tool (SPICT) very helpful. We beefed up our team work, utilising community nurses and matrons. We prioritised high-risk groups such as nursing home residents and frail older people with dementia and multiple conditions
Using advance care planning, key decisions were made in conjunction with the patient and their carers about the preferred place of care and death; and ‘Do not attempt cardio pulmonary resuscitation (DNA-CPR)' status. Crucially, this information was transmitted to the ambulance service and the out-of-hours service within two weeks. We used practical phrases like: ‘In the event of deterioration, do not admit to hospital or first discuss with hospice. In the event of cardiac arrest, do not attempt cardiopulmonary resuscitation'.
Team working was crucial - GPs do not need to do all this themselves; there is help and support available from community nursing and local hospices. Tools provided by the GSF website were helpful particularly the colour coding approach.
Finally, e-learning modules on communication skills were invaluable. We also performed after death audits and being self-critical particularly when a home death was not achieved. A good death at home is an important clinical indicator.
1. QOF Register Prevalence: went up to 0.48% of list size (highest in CCG of 51 practices) in 2010/11, comparison with 0.2% in 2009/2010 (national audit figures 0.25%) ie we have doubled our register
2. Quality indicator: In 2010/11, 41% of deaths were on our register, compared to local average of about 11%. (for comparison, the Scottish After Death Audit survey had figures of 29-38%)
3. Composition of register: ratio of 2:3 cancer: non-cancer showing preponderance of non cancer diagnoses
4. Emergency admissions data: rated green in the CCG 3.4% under position against annual target
5. Home death rates: 67% home death rate for those patients on the register, 11% in hospice and 2% in hospital.
The most important result however was thinking differently and adopting a new approach to care. (See Fig.1) This describes an authentic example of care using best practice.
Despite a concerted effort, I would say we are still only identifying about half of the patients who are approaching the end of life. This reflects the difficulty in using prognostic indicators and the inhibitions that both doctors and patients feel in discussing death and dying. I have therefore worked with our CCG to develop a local enhanced service. GPs have the power to change practice is this area. Specialist level skills are not needed. It is utilising the generalist holistic skills of GPs in breaking bad news and working with the knowledge we hold about our patients.
New way- Best Practice
Presentation: 80 year old man with dementia, COPD and heart failure. Progressive decline
No explicit management strategy.
Repeated hospital admissions.
Cross specialist referrals- further high tech. investigations with no discernible benefit
No recognition that the patient is dying. No one in the system takes responsibility
Clinical deterioration and family concern noted by GP.
GPs uses ‘surprise question' and applies prognostic indicators guidance.
Patient identified as end of life care, explanation and involvement of family and advance care plan done.
Consequences: Family not told that that loved one is dying and are so unprepared
Consequences: Patient managed at home, great improvement in symptom control, family in control, no crisis admissions. Chance to say good bye and prepare for death
Likely death in hospital during a ‘crisis'
Poor quality outcome
Peaceful death at home achieved surrounded by family
Embed the surprise question in routine clinical practice
Use prognostic indicators guidance
Use e-learning to boost confidence in communication skills
Prioritise who you discuss at MDT meetings, use the GSF colour coding
Use patient information material from Dying Matters
Robust handover to OOH services e.g. DNRs
Reflect and learning by doing ‘after death audit' (ADA)
Professor Mayur Lakhani is a practising GP and chair of the National Council for Palliative Care.
‘Find the 1%: http://www.dyingmatters.org/gp - resources specifically designed for GPs