An audit to assess the proportion of patients registered with a GP who have died and been included on the palliative care register. Dr Claire Stockdale

Why? Baseline measure Standard included in Annual Quality Framework 2011-12 Something which should already be embedded in practice Incentive – how we compare nationally Good practice – want to promote and develop

The 2009 National Primary Care Snapshot Audit in End-of-Life Care 502 General Practitioner practices in 15 PCTs (60% uptake ) in England submitted data from 4500 patients for every death over a 2 month period. Only 27% of patients who died were included on the palliative care register, of these 23% were non-cancer, 17%unknown and 69% cancer.

The 2009 National Primary Care Snapshot Audit in End-of-Life Care Primary care provision of end-of-life care is crucial in achieving high quality care and reducing hospitalisation. Audit provided the largest assessment of community provision, revealing key areas for further improvement.

Summary ‘Earlier identification of people nearing the end of their life and inclusion on the register leads to earlier planning and better coordinated care’(National Primary Care Snapshopt Audit)

These tools may help

Overall aims of a register Opportunity Identification of an at risk group Chance to address worries, wishes, concerns, family/carer needs Make earlier proactive decisions or plans Ensuring inclusivity of all groups/diagnosis

BMJ Support Palliat Care2011;1:71 Evidence Base of Advance Care Planning for Patients with Advanced Disease: research evidence leading to practical implementation S N Davison ‘...allowing patients to prepare for death, strengthen relationships with loved ones, achieve a sense of control, relieve burdens placed on others and through all this positively enhance hope. ACP has also been shown to strengthen patient-physician relationships, achieve higher congruence between surrogates and patients in their understanding of patients' end-of-life preferences, and attain greater satisfaction with and less conflict about these end-of-life decisions...’

On average... 20 deaths per year in GP list of 2000 patients

What proportion are unexpected deaths Suggests 10% sudden and unexpected

National Snapshot Audit suggested 15% of all deaths are sudden and unpredictable.

If this is the case then approximately 90% are potentially expected and may to some degree be anticipated.

Challenges Is this manageable? Importance of assessing need not just prognosis ‘Dilution effect’

Defining the palliative care patient: its challenges and implications for service delivery Helen Mitchell, Simon Noble, Ilora Finlay and Annmarie Nelson ‘...No definition of the palliative care patient exists in working practice and without one there is a risk that some patients with palliative needs will not receive the necessary support, while others may access valuable resources before time. ‘ BMJ Support Palliat Care doi:10.1136/bmjspcare-2012-000220

North Powys (Montgomeryshire)

North Powys End of Life Audit The standard used for comparison was that defined in the Annual Quality Framework 2011/12 for end of life care requiring a ‘minimum of 40% of all deaths of patients registered with a GP are included in the palliative care register of that GP’.

40% standard National Snapshot Audit suggested 15% of all deaths are sudden and unpredictable, therefore 85% are predictable. Setting the standard as half this number should be achievable.

Method Six practices across North Powys were approached and invited to contribute to the audit. Retrospective review of all the deaths occurring within each practice Feb-Aug 2011. Anonymised data collected for each patient identifying place and cause of death, significant medical conditions, inclusion on the palliative care register, preferred place of care for end of life and resuscitation decisions.

Results All practices agreed to participate, incomplete data returned from one practice.

Results Total of 264 deaths in Montgomeryshire Feb – August 2011 67 of these patients were on a palliative care register (25%) 99 (38%) patients were retrospectively identified as meeting the criteria for inclusion on a palliative care register.

15% sudden and unpredictable – does this hold true for Montgomeryshire? Yes, but difficult to be accurate because this was a retrospective audit, obvious sudden deaths 41/264 (15%)

Total deaths

Retrospectively identified palliative care population

Of the 67 patients on a palliative care register 55 (82%) had a cancer diagnosis and 12 (18%) did not. Of the 32 patients not on a palliative care register 18 (56%) had a cancer diagnosis and 14(44%) did not.

Palliative population

Place of death Assuming the 99 patients who should have met the criteria for inclusion on a palliative care register is our palliative care population we can compare place of death for patients on and off a palliative care register.

Place of death

Preferred Place of Care 63 patients within the assumed palliative care population have a preferred place of care for end of life identified. 49 (78%) of these patients are on a palliative care register 14 (22%) are not on a register.

Preferred Place of Care for end of life

DNAR 52 DNAR orders made for patients in the assumed palliative population. 42 (81%) for patients on a register 10 (19%) for patients not on a register

DNAR decisions made

DS1500 54 patients issued with DS1500 – 48 of these patients were on a register Often used as a trigger for identifying patient to be included on register.

Individual practices PRACTICE NO. OF DEATHS NO. ON PCR Practice 1 79 18(23%) Practice 2 77 19(25%) Practice 3 28 INSUFFICIENT DATA Practice 4 29 10(35%) Practice 5 19 11(58%) Practice 6 32 10(31%)

Conclusions Patients on a palliative care register are more likely to: Have an identified preferred place of care for end of life. Die in all other settings apart from DGH Have a DNAR order in place This suggests that there has been better communication and anticipatory care.

Validating the audit findings Mid 2007 population estimates show that around 63,300 people live in Montgomeryshire. On average 20deaths per GP of 2000 patients equates to approx 633 deaths per year for the population in Montgomeryshire or 311/6months The audit recorded 264 deaths in 6 months We know that about 10 - 15% are unexpected/sudden which is consistent with this audit finding of 41

Validating the audit findings 85% (224)could possibly be anticipated with a quarter being due to cancer, one third due to organ failure and one third due to frailty and dementia. The audit identified 55 cancer deaths (21%) suggesting that the remaining deaths should have been due to organ failure and frailty and dementia. The 40% standard requires that 105 of the deaths had been anticipated and patient appropriately included on a palliative care register The number of deaths included was 67but a total of 99 deaths retrospectively identified as appropriate for inclusion (38%)

A very similar audit just published Br J Gen Pract. 2012 May;62(598):e344-52.

Are UK primary care teams formally identifying patients for palliative care before they die? Authors: Harrison, Nadine; Cavers, Debbie; Campbell, Christine; Murray, Scott A Design and setting: Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed. Records of patients who had died in the previous 6 months were analysed Results: In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non malignant conditions only around 20% had any palliative care documented. Conclusion: Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.

Actions Promote continuing use of palliative care register across the region using the data from this audit to support discussions. Support individual practices to develop their own system for registering patients and monthly MDT discussions. Individualised practice feedback with guidance around criteria for identifying patients with non-malignancy in the last year of life.

Data which may improve identification Secondary care – treatment intent/ceiling of treatment (e.g. amber care bundle) Functional status assessed and recorded regularly by attending healthcare professionals Family observation of change Frequency of contacts with healthcare professionals over last month

Thank You... To all the practices involved in this project for all their hard work, support and enthusiasm.