Derek Doyle, OBE, MD
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 medications are stored and dispensed in the unit or brought in from another pharmacy (hospital or community)
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].
Operational data should include such information as demographics, age, disease, symptoms, referral source, interventions, follow-up plans, and outcomes (using a validated scale). By having adequate statistics, you will be able to lobby for further funding and have a basis for research topics. Information about 'Minimum Data Sets' software can be obtained from national palliative care organizations and IAHPC.
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 need pages devoted to
A Communication sheet: what the patient said or asked, what reply, or explanation was given – completed by doctor, nurse, social worker, pastoral care worker) after every significant conversation. This is crucially important and is not usually found in non-palliative care clinical records.
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.
The IAHPC developed a Global Clinical Database for the first palliative care consultation which may serve as a model.
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 considered when planning record systems and their security and access.
No palliative care service, whether in the community or a hospital, should be established without planning 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.
The unit has been built or a satisfactory old building adapted. Staff have been appointed and pre-service training started. Within weeks the first patients will arrive. What final preparations will be needed, many of them continuations of work done in the previous months and years?
They are listed here, mostly as questions, in no order of importance or priority.
These are not often requested in palliative care but are recognised as being of considerable value in elucidating the cause of inexplicable symptoms. In certain circumstances they may be required by law.
Close and mutually helpful working relationships are essential if, after death as much as before it, the patient is accorded every possible dignity. Prior discussion with local Funeral Directors is never wasted time.
The questions surrounding visitors for patients are perhaps more difficult and sensitive than many people realise. They require careful thought and must then be explained to staff (as well as being in the Staff Handbook) and visitors.
The key issue is that patients have limited energy, are easily exhausted yet want to see loved ones and friends and do not want to disappoint anyone. Much as relatives will say they want to be with their loved 24/7. In fact, they too become exhausted, find it ever more difficult to leave the bedside, and need a break. Further problems arise in HPCUs in general hospitals; having different visiting times from that of other wards and departments is seen as unfair.
Detailed discussions will have taken place for months or even years before the palliative care service starts – discussions about what care it will offer, the type of patients who might benefit from it, the experience and expertise of its senior medical and nursing staff etc. Now is the time to ensure that all doctors (hospital and family medicine), nurses (hospital, community and private) know everything they will need to know about the new service and what it will offer them. The following questions might be asked:
Before patients are admitted the local Fire Department, Ambulance Service and Police Department must be informed. Each will want to send representatives to see the unit:
In the last week before the service starts, particularly if it there are to be in-patient beds there must be a rehearsal involving a 'patient' being brought to the unit, being welcomed by the nurse who will be looking after him/her, receiving the accompanying relatives, going through the admission process, explaining the routine of the unit, meals, visiting, how important every little detail is in this care, the doctor introducing him/herself, what happens at night. Every effort must be made to make it realistic, even to the extent of finding weaknesses, staff making mistakes, forgetting to mention fire drills and routes of escape, potential difficulties, patients unwilling to stay, relatives who misunderstand hospice care and think it is euthanasia etc.