Thursday, 4 August 2011
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.
Wednesday, 3 August 2011
The National Kidney Care Audit Vascular Access Report 2011 was published today. This vascular access audit has not been easy to conduct. We had policy drivers and widely endorsed clinical audit measures developed by the Renal Association and Vascular Society of Great Britain and Ireland but, the way local systems are configured, how data is recorded and where it is held, differed between units. In addition, the way teams share responsibilities between disciplines and over time varies considerably. In total 60 of a possible 63 kidney units participated and the quality of the returns was high. This is testament to the leadership and skills of the audit team and the dedication and hard work of the individual kidney care teams in each of these units. They all recognise both the importance of best possible access as a modifiable factor that can improve patient experience and outcome and the central role national comparative audit plays in driving up quality and adding value to direct clinical care.
Creating vascular access for dialysis is a complex process. Planning for dialysis is both culturally and technically challenging. The timing of conversations, decisions, consent and surgery need to take into account the views, attitudes and aspirations of the individual with progressive kidney disease; the often unpredictable rate of decline of kidney function and the coordination of imaging, surgery and medical teams. Successful maturation of an arteriovenous fistula requires care and nurture. There is as yet no standard recipe for monitoring and fistula management to guarantee longevity of access. We do however increasingly recognise the importance of team work – patient, dialysis nurse, nephrologist, radiologist and surgeon, in achieving this goal. Good outcomes therefore require both reliable systems and attention to the human factors upon which success is based. No wonder the audit had been difficult to deliver.
But deliver it has. This report provides valuable insights for all participating kidney care teams and the results are the basis for continuing to involve local patients in quality improvement; small tests of change within units for discussion, debate and sharing best practice within and between kidney care networks providing a platform for future work including the routine collection of dialysis access information by the UK Renal Registry. Improving vascular access is an end in itself. Even more than that, a focus on preparation and choice in the 12 months before renal replacement therapy should also facilitate patient engagement in shared decision making and care planning and accelerated rehabilitation for those who commence dialysis as an emergency. It therefore has the potential to increase live donation and pre-emptive transplantation, promote patient preference in type and place of dialysis and support better conservative kidney care for those who choose the “no dialysis” option. It would be a perverse unit that did not capitalise on the added value opportunities all the hard work on vascular access presents. I look to the kidney services to use this knowledge now to improve care for your patients this year. Also to retain the audit’s know-how so that future patients can benefit from all the efforts that have gone into it. For many people with end stage renal failure better vascular access is the single most important modifiable factor in improving outcomes. Better access leads to fewer infections and as this reporting shows directly correlates with a reduction in the burden of dialysis. This audit is a big step in the right direction. All involved should be congratulated. I am truly impressed by the coverage gained, but don’t be complacent. Getting the best vascular access for every single haemodialysis patient remains a challenge but some teams have shown it is achievable.
- 60 out of 63 units in England, Wales and Northern Ireland took part in the audit which included 2,078 patient records.
- Late referrals (less than 90 days from seeing a renal physician to dialysis) accounted for around one quarter of patients nationally, although this varied across networks.
- At first dialysis, 39 per cent of patients had a tunnelled line, 20 had a non-tunnelled line, 1 per cent had an arteriovenous graft (AVG) and 40 per cent an arteriovenous fistula (AVF).
- After 3 months, the majority of patients on AVG, AVF and tunnelled lines were using the same access. Those who started on non-tunnelled lines were more likely to have moved to another type of access (most commonly as tunnelled line – 67 per cent)
- Late referrals were less likely to have had definitive access (i.e. AVF or AVG) at first dialysis and were less likely to have been referred to a surgeon.
- 16 per cent of haemodialysis patients had a bacteraemic episode in the six months following first dialysis.
- Bacteraemias were more common in patients on venous catheters compared to definitive access – 24 episodes per 100 patients for an AVF, 45 for a non-tunnelled venous catheter and 33 for tunnelled catheters.
Well done to all concerned.
Vascular access e-seminar – listen again
If you missed the e-seminar we held about the 2011 National Kidney Care Audit Vascular Access Report, you can now listen again on our website.
Dr Richard Fluck, consultant nephrologist at Royal Derby Hospitals and clinical lead for the audit, presented the e-seminar, giving a summary of the key findings from the audit and answering questions from delegates.
The audit report, which was launched earlier this month by the NHS Information Centre, examines the methods and timeliness of vascular access for kidney patients requiring haemodialysis. It looks at those patients commencing dialysis between 1st January and 30th June 2010, and builds upon the previous reports by using data flows from other sources to provide information on hospital episodes and Healthcare Associated Infections (HCAIs).
Dr Fluck’s slideset and a full audio recording of the presentation and discussion are available to download. Go to: http://www.kidneycare.nhs.uk/_Eseminars-Pastevents.aspx
What are my options?
What are the benefits and possible risks?
How likely are these risks and benefits?”
These are the 3 questions that the MAGIC projects are promoting. MAGIC stands for “making good decisions in collaboration” and is a Health Foundation implementation programme for shared decision making that has been running in Newcastle and Cardiff over the last year. There is lots of evidence from many different countries and across many clinical areas that patients want more involvement in decisions about their care and that greater involvement results in better experience and outcomes. Recently, the Care Quality Commission in England patient surveys have shown that 48% of inpatients and 30% of outpatients want more involvement in decisions about their care. A Cochrane review in 2009 found that decision support improves knowledge and leads to a more accurate understanding of risk perception as well as increasing participation and comfort with the decisions. Such an approach leads to fewer patients being undecided and improves adherence to medication.
I was privileged to be invited to the Health Foundation MAGIC site visit to Newcastle last week. Driving to Piccadilly station I was thinking “it’s nice to be on a different train”. Views across the North Yorkshire moors, Northumberland and the Angel of the North are gorgeous. I assumed I would be spending the journey doing battle with my inbox when to my delight I bumped into Sir John Oldham who is a general practitioner from Glossop but also much more. John is the Department of Health Quality, Innovation, Productivity, Prevention lead for both long term conditions and acute care. We travelled up together with Alf Collins (Consultant in Pain Management & Vice Chair Clinical Ref Grp for NHS SW). Alf had driven up to Manchester from Taunton the evening before! “Making Shared Decision Making a Reality, no decision about me without me” the publication by Alf and Angela Coulter was released the day before and was receiving quite a lot of media attention. So we had a great journey up, fruitful conversation and lots of learning. A great way to start the day.
The highlight without doubt was, however, the visit to Dave Tomson’s surgery where I saw the 3 questions in use and sat in on a shared decision making skills workshop. It struck me how far ahead primary care is of hospital practice in terms of ensuring the skills needed to talk, understand and listen to patients are well taught. Clinical encounters may only be 10 or 15 minutes, or 7 minutes, but they’re full of body language, unsaid messages, anxiety and anticipation in addition to the dialogue. They can also result in confusion and misunderstanding. Offering choice, explaining options, providing decision support, eliciting preference and achieving good decisions is a real skill. Like all skills it needs practice before it’s added to our repertoire of “automatic” skills that “just happen”.
Back at the Royal Victoria Infirmary in Newcastle we heard from Richard Thompson (Professor of Epidemiology and Public Health) about shared decision making in breast surgery, obstetrics and urology and discussed the importance of leadership, learning sets and team engagement in addition to the clinical skills. The emerging lessons from the Newcastle micro-system highlighted some of the NHS wide barriers and disincentives that need to be addressed if we are to build on these achievements and to secure sustainability.
Shared decision making is much more than patient decision aids. We need to embed shared decision making within clinical pathways and to demonstrate the value to both patients and clinicians. The Health Foundation projects are using shared decision making with quality improvement methods to drive up patient activation, measure patient experience and improve quality. I am looking forward to my next visit already. I don’t think we need to wait until then to make the 3 questions OK in every surgery and clinic in the land.