Facing the end of one's life can be a bewildering and frightening prospect. Having easy access to high quality care to mitigate a person's symptoms and ensuring that the person and their loved ones are fully comforted and prepared is an aspiration that everyone at the end of life should be able to obtain.
Unfortunately however, many people will struggle to get the care that they need as they approach the end of their life. According to Marie Curie, between now and 2020, approximately 250,000 people will die in London.
We need to ensure that everyone who needs end of life care can expect to receive a high level of care that is personalised, coordinated, and sensitive to the needs of those around the patient as they enter their final months, weeks and days.
One issue we know that affects the quality of end of life care is the place of death, and where a patient may choose to die. Currently, 55 per cent of people in London still die in hospital despite the majority of them indicating that they do not wish to be in a hospital when they are approaching the end of their life. Dying in hospital when you would rather be at home can be extremely distressing and can make a good death much harder to deliver for the patients and their loved ones.
Given that the national average for the percentage of people dying in hospital is 49 per cent, London needs to decrease this percentage to help ensure that people have the choice to spend their final days at a location of their choosing where the feel most comfortable and supported.
Looking at the wider picture, generally, the standard of end of life care in London is inconsistent. While London has the second highest rated Clinical Commissioning Group (CCG) in England, Islington, it also has one of the worst performing CCGs for end of life care in England, Newham. Furthermore, only eight CCGs in London scored above the national average for end of life quality indicators.
The variation in quality of end life care delivered in London is unsurprising however, given that only a third of Health and Wellbeing Boards in London specifically address end of life care in their Health and Wellbeing strategies.
For the greatest city on earth, this is not good enough.
Across London, health inequalities related to end of life care persist. According to Marie Curie, people with a terminal condition other than cancer, elderly people over the age of 85 and single people are more likely to miss out on palliative care.
We also know that quality of care deviates on racial and ethnic lines. For example, people from Black, Asian and minority ethnic communities report a poorer standard of end of life care.
Another persisting problem is that too often, the crucial conversation between doctors and patients informing them that they may be entering the final stages of their life are not happening.
This creates a problematic situation where the patient or their family is not aware that they are entering the final stages of their life. This means that they may have to make necessary arrangements for after they are gone in a rushed manner which could inhibit the comfort of their final days.
There are a number of practical steps that could be taken to improve patient outcomes across London:
- CCGs across London should be compelled to ensure that end of life care is specifically addressed in their health and wellbeing strategies. This would be more meaningful than a mere box-ticking exercise. Each reference to end of life care should contain a clear and detailed explanation to specify how the CCG plans to improve access to and quality of care for all of its patients.
- CCGs across the capital should not operate in silos. A system should be put in place to ensure that CCGs share best-practice, identifying which components of their procedure works, and which could improve.
- There should be a level of accountability placed on CCGs regarding how they deliver end of life care to ensure that it meets NICE's minimum standard.
Regarding what the Mayor of London could do, unfortunately he is limited in his capacity to intervene directly given that his responsibility for health does not involve the provision of NHS.
However, the Mayor should use his position and influence to champion any initiative which highlights the importance of end of life care. In addition, the Mayor should encourage CCGs across London to improve their performance regarding end of life care.
I have seen little evidence to suggest that the Mayor takes the provision of end of life care seriously thus far. It is time for the Mayor to put this issue on the agenda.
As part of his statutory obligation to reduce health inequalities across London, the Mayor should be willing to lead a public health campaign to ensure that Londoners are aware of the care and support that is available to them, should they have a terminal illness.
By its very nature, dealing with end of life is a topic that many feel reticent to confront. However, the consequence of not tackling this issue is that today, many people are still dying in fear, pain and discomfort.
With an ageing and increasing population, the way in which we deliver a consistently high standard of end of life care is going to be an increasingly important issue. It is up to us to implement the appropriate measures today, to ensure that we are not facing a crisis tomorrow.
The Mayor of London needs to show leadership in this area and promote the practical steps outlined, which are necessary to reduce the significant health inequalities Londoners face with end of life care.