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Dying without dignity

Conclusion

As the Parliamentary and Health Service Ombudsman is at the apex of the complaints system, by definition we only see those cases that it has not been possible to resolve locally. However, our casework adds insight into what goes wrong in the most complex cases and what learning there might be for the NHS to prevent similar situations occurring again.

Our casework shows there is a need for the NHS to get better at:

  • recognising that people are dying – the cases in this report show that if clinicians better recognise the risk of approaching death, important conversations can take place to establish the patient’s preferences, needs can be assessed and planned for, and crisis interventions can be avoided;
  • making sure that symptoms are properly controlled – the greatest fear expressed by people about dying is being in pain.5 Yet with good care it is unusual for pain not to be controlled acceptably. This report illustrates that some clinicians need to be more confident with established good practice, such as the skilled use of morphine and other opiate drugs;
  • communicating with people, their families and each other – the cases in this report show health care professionals need to be supported to be better at having open discussions about care towards the end of life. There is a need to communicate in a way that is both sensitive but also makes clear the prognosis and what options there are for care based on the outcomes individuals may want for themselves. This report shows that patients, but also their families, should have opportunities to discuss their concerns and fears;
  • providing out of hours services – our casework shows the harrowing results when patients cannot get the services they need. For the benefit of their comfort, dignity and wellbeing, all in need should have access to specialist palliative care services whenever they need it; and 
  • making sure that service delivery and organisation help people have a good death – the importance of linking up people with services and ensuring that the service they do receive is timely and appropriate is clear from the cases in this report.

How we die is part of the core business of the NHS, and a matter of concern to all. Getting better in these ways would improve the experience of dying immeasurably. 

The learning from our casework provides further evidence in support of several of the findings of the House of Commons Health Select Committee report, in particular the need for more access to palliative care services; improved resources for support in the community; and better leadership. This is why we are now calling upon the Ambitions for End of Life Partnership to use the learning identified in this report to underpin any new ambitions for end of life care, and upon the whole of the NHS to find the collective will to make those ambitions a reality.


5 As reported by 83% of those surveyed by ComRes for ‘Dying Matters’ in 2011.