Lost and found

Many people in the kidney community were disappointed when the NICE Chronic Kidney Disease Quality Standards were published and the standard on conservative kidney care that had been trialled was nowhere to be found. Some of us even had to change our slides!

Well, as the Old Testament parable goes, there is nothing better than finding something that has previously been lost. The NICE Quality Standards on End of Life Care certainly fit that bill. Clearly it makes a lot of sense for end of life standards to cut across individual disease groups. The issues of people, families and carers, and largely for the clinical and social care professionals involved, are mostly generic.

These quality standards give us opportunity as a whole NHS to improve the infrastructure for end of life care in England. Getting that right will be a major step in the right direction for conservative kidney care by providing a receptive culture and systems of care to improve experience for patients whatever their underlying conditions.

1. People approaching the end of life are identified in a timely way.
2. People approaching the end of life and their families and carers, are communicated with in a timely, sensitive and honest way that is responsive to their needs and preferences.
3. People approaching the end of life are offered comprehensive and regular assessments, which include the opportunity to discuss and document their current physical, psychological, social and spiritual needs and preferences.
4. Carers and families (including children) of people approaching the end of life have their own needs assessed and regularly reviewed, and are offered support appropriate to their needs and preferences.
5. People approaching the end of life and their carers and families have timely access to information in an accessible format, appropriate to their individual needs and preferences.
6. People approaching the end of life are offered the opportunity to help develop and regularly review a personal care plan that sets out their needs, preferences and decisions in relation to all aspects of current and future care and treatment.
7. People approaching the end of life have their physical and psychological symptoms safely and effectively managed in a timely way, at all times of day and night, appropriate to their needs and preferences.
8. People approaching the end of life have access to timely personalised support for their social and practical needs, which is appropriate to their preferences, and which maximises independence and social participation for as long as possible.
9. People approaching the end of life and their carers and families receive emotional, spiritual and religious support appropriate to their needs and preferences.
10. People approaching the end of life receive consistent care at all times of day and night, that is coordinated effectively across all relevant health and social care organisations, and which is delivered by practitioners who are aware of the person’s current medical condition, care plan and preferences.
11. People approaching the end of life being cared for in their usual place of residence, receive timely, safe and effective care appropriate to their needs and preferences at all times of day and night.
12. People approaching the end of life being cared for in hospital, receive timely, safe and effective end of life care appropriate to their needs and preferences at all time of day and night.
13. People approaching the end of life who experience an unexpected crisis at any time of day or night, receive prompt, safe and effective urgent care appropriate to their needs and preferences.
14. People approaching the end of life who may benefit from specialist palliative care, receive this care in a timely way appropriate to their needs and preferences, at all times of day and night.
15. People approaching the end of life who need to be moved, are transferred in a timely, safe and effective way to enable them to receive care in the place most appropriate to their needs and preferences.
16. People in the last days of life are identified in a timely way and have their care coordinated and delivered using a proactive holistic plan, which is individualised to their needs and preferences, and which ensures timely access to, and administration of prescribed medication.
17. Carers and families who are newly bereaved are communicated with in a sensitive way and receive timely verification and certification of the death, information that includes details of any possible coroner involvement, and practical support appropriate to their needs and preferences.
18. People closely affected by a death have access to emotional and bereavement support appropriate to their needs and preferences.
19. Health and social care workers are competent in the knowledge, skills and attitudes necessary to provide safe and effective care for people approaching the end of life.
20. Generalist and specialist services providing care for people approaching the end of life have a multidisciplinary workforce sufficient to provide safe and effective care.

Have a further look at the draft questions. Each standard has definitions, numerations, denominators, audit measures and, what I found really helpful, explanations in plain English.

Consultation has now closed and the final quality standard is expected in November 2011.