Which hospitals should be participating in this study?
All acute and community hospitals in England, Wales and Northern Ireland that treat patients aged 18 and over, with the following conditions, dementia, heart failure, lung cancer and/or liver disease can take part in this study. GP practices that have identified patients (with help from networks supporting the Study) who have not presented at hospital within the last six months of life.
What is the study period for this study?
In hospital deaths – Worksheet 2:
The data collection spreadsheet is designed to identify patients aged 18 and older, who died in hospital between between 1st April 2022 - 30th September 2022 inclusive.
Community Deaths - Worksheet 3:
The data collection spreadsheet is designed to identify patients aged 18 and older who have been discharged to the community between 1st April 2022 - 30th September 2022 inclusive who have subsequently died within six months of discharge.
What is the patient sample?
For this study, please provide a list all patients aged 18 and over who died in hospital between 1st April 2022 - 30th September 2022 inclusive, with an ICD10 diagnosis code on discharge in any position of one or more of the following conditions dementia, heart failure, lung cancer and liver disease in any position. More information about the relevant ICD10 codes can be found in the data collection spreadsheet (Worksheet 5).
This study is also looking at deaths in the community, where patients have been discharged from hospital between 1st April 2022 - 30th September 2022 inclusive who have subsequently died within six months of discharge with one or more of the following conditions dementia, heart failure, lung cancer and liver disease.
Are deaths in the Emergency Department included in this study?
Yes, please include all patients that die in the emergency department with the following conditions dementia, heart failure, lung cancer and liver disease.
Are there any exclusions for this study?
Yes, please do not include:
- Deaths due to suicides, homicides, or self-harm related
- Deaths due to trauma, drowning, drug overdose or poisoning
The primary ICD10 code at discharge does not match any of your listed conditions, should I include these patients?
Please still include all patients where the primary ICD10 Code at discharge is not one of our previously mentioned conditions.
Should the previous admissions within the previous 6 months only relate to admissions with the included ICD10 codes?
Please include ALL previous admissions relating to any condition. The admissions can be for any reason as all will be opportunities for potential End of Life Care input.
I am unable to complete all the fields on the case identification spreadsheet – will it still
be accepted?
All the columns on the EOLC data collection spreadsheets are ‘KEY FIELDS.’ NCEPOD requires information to be populated in these columns to proceed with our selection process. If you or your colleagues are experiencing any issues with populating the spreadsheet fields, please contact the NCEPOD team as soon as possible.
How can community deaths be identified?
The spreadsheet has a separate worksheet to identify patients who have been discharged to the community and the hospital has a record of the patient dying within six months.
These patients may be identified in the following ways:
- Via central patient administration systems
- Liaise Palliative Care/Oncology/Liver and Heart failure teams (if you have them) to confirm the relevant community deaths
- Your trust/ Health Board may have a palliative care register
- Your Pharmacy department colleagues may also have a list of patients in the community who received anticipatory medicines, and subsequently died
In Wales and Northern Ireland:
o Patient demographic details may be automatically updated centrally. This might mean that all deaths should automatically be recorded on the system, whether or not they occurred in hospital.
What is the deadline for returning the data collection spreadsheet?
The deadline for returning the data collection spreadsheet is 7th July 2023. If there are any issues or queries regarding the deadline, please contact the NCEPOD office as soon as possible.
How do I return spreadsheets to NCEPOD?
Please return the completed data collection spreadsheet to ncepod@nhs.net with password protection. Please do not include the passwords in an email – instead, call the NCEPOD office on 0207 251 9060 where someone will take the password for you.
What will happen once we have submitted our data collection spreadsheet?
NCEPOD will import the information you have sent into our study database; we will then randomly select several patients per hospital to be looked at in more detail. For each of these selected patients we will upload a clinician questionnaire to our online system and ask the Local Reporter to invite the clinician who was involved in the patients care to complete this. We will also request case notes relating to the patient’s admission to be sent to us for peer-review.