It is essential to have a simple but efficient clinical documentation system for two reasons:
Though it is possible to design a system it is much better to use one of the many ‘Minimum Data Sets ‘computer programmes currently on the market, written for palliative care services. Details are obtainable from national bodies such as the UK’s National Council for Palliative Care and the US National Hospice and Palliative Care Organisation as well as other national and regional bodies.
In-house documents (patient case-notes / records) can then be designed to obtain the information needed for the data sets without obtaining interesting but possibly unnecessary information. The possibility of trying to get too much information (“Might be useful one day”) is thus avoided and time saved.
Pharmacy Records: Whether drugs are stored and dispensed in the unit or brought in from another pharmacy (hospital or community)
In-Patient medication charts / records: Again it is preferable to use one of the models in common use in local hospitals. Unless there are compelling reasons why they should not be used it is best to use similar charts and records to those in the hospitals from which most patients will come. Staff will be familiar with them; it cuts down the possibility of confusion and makes comparability easier
Community-based patients’ medication charts / records for use in patients’ homes: These are essential but some services, unwisely, try to do without them. They are needed to record medication for the benefit of patient, relatives and the many different professionals who may visit the home. Samples can be found in several textbooks of palliative medicine and community care [See Recommended Reading]
Again, what is needed must be comprehensive yet simple and easy to use. Samples are available from most national and regional organisations. As a minimum the folder will needed pages devoted to
So called “Patient Held Records” have been tried and evaluated in several centres. It had been hoped that, respecting patient autonomy and decision-making and their right to see all records, they would improve communication between the many professionals involved in the care. They were not found to do that and are therefore not recommended here.
Day-to-day clinical reports and updates, as used on the wards, should be for the shared use of all professionals involved in the care of that patient, doctors and nurses (for example) writing in comments, observations, summaries of what they have told the patient (and been told by the patient) – all on the same pages. On the death or discharge of the patient they are all filed in the one folder.
Computer programmes are now on the market for the finance department, staff management, volunteer service management, pharmacy, and even pastoral care. Advice and assistance can usually be obtained from the national palliative care association.
It is better to select one of these than try to devise a new one as most new hospice and palliative care services tend to do [See appendix at the end of this section]
At the advanced planning stage it is important to find out what are the legal requirements for records, archiving, the period they must be retained (and therefore what storage facilities will be needed), who has right of access to records and how much is covered by any “ Data Protection Act” operating in the country. It varies greatly from one country to another.
When doing so it is wise to get legal advice on the disposal of medications. How many, provided they are still with their expiry date can be taken back into pharmacy and recycled. Which ones must be disposed of and by whom and with what records of doing so?
When so many members of staff representing so many professions and disciplines work together palliative care it is easy for confidential information to be leaked to people who have no right to know it. At the same time in most western countries patients, but not their relatives, have a right to see their medical records. These issues will need to be taken into account when planning record systems and their security and access.
No palliative care service, whether in the community or a hospital, should be established without making arrangements for rigorous audit. It may be financial (as required by law), administrative or clinical. Such audit is not a luxury, not something that one does after the service has been running for a few years, not something that can be left until a visiting official enquires about it.
Documentation, whether hard copy (paper) or recorded and stored electronically, must be in place from Day 1. Much of what is needed will be obvious – personal details of each patient, pathology, investigations, treatments, clinical outcomes. Other information will depend on what seems important to know to justify the service, to measure its quality, to assess its efficacy and efficiency.
Do NOT try to design your own forms or soft wear programme. Contact your national palliative care association OR the IAHPC OR the National Hospice Organisation in Washington OR Hospice Information, London for sample documentation, and details of other sources of help and suppliers of soft wear, tried and tested in palliative care services.
The following companies are known to supply patient administration software relevant to hospice and specialist palliative care services in the UK. Mention in this list in no way implies any recommendation on the part of the National Council. Enquirers are recommended to ask for a list of palliative care services which are using the software and to contact such services for their opinions on suitability etc.
Software Medical Informatics Ltd
4 Edison Village
Nottingham Science Park
University Boulevard
Nottingham
NG7 2RF
UK
Tel : 0845 370 7879
Email : [email protected]
System. Pal.Care
Kirstin Lodge
iSOFT
Daventry Road
Banbury OX16 3JT
UK
T: 0870 050 8901/01295 274200
F: 01295 275131
Email: [email protected]
System: OPMAS-P by Isoft (previously marketed as HCAS by Eider computers)
Healthy Software Limited
Merlin House, Stainer Way, Wyvern Business Park,
Derby DE21 6BF
UK
Tel: 01332 680 022
Email: [email protected]
System: Crosscare
If you have any queries or comments relating to this list please contact:
Ann Eve
Minimum Data Sets Data Project Manager
National Council for Palliative Care
UK
Tel 020 7697 1520 / Direct line: 01883 344458
Email [email protected]
Updated Nov 2008
Chameleon Information Management Services Ltd.
59-61 High Street
Rickmansworth WD3 1 RH
UK
Tel: 01923 896939
Direct Line: 01923 890707
Fax: 01923 896526
http:\www.infoflex-cims.co.uk
Email [email protected]
System: InfoFlex Palliative Care System.
Capstone Systems Ltd
Oak Mead
Malting Row, Honington
Bury St Edmunds IP31 1RE
UK
Tel: 01359 268711
Email: [email protected]
System: ReadyRiter
The Phoenix Partnership
Mill House, Troy Road
Horsforth
Leeds LS18 5TN
UK
Tel: 0113 20 50083
Email: [email protected]
System: SystmOne Palliative Care