I have been a GP for 20 years in Tower Hamlets, London. For many years we had a Macmillan service team, who looked after our terminally ill patients at home. This was a 24-hour service and care by the GP and district nurse was limited.
More recently the Macmillan service team has been replaced by a community palliative care team, which provides a 9–5 service and is also a secondary consultative service. Thus care of the terminally ill patient is now shared between the GP, the district nurse and the community palliative care team.
All of the carers need to know their duties and limitations and how to coordinate with each other. Communication between professional carers, the patient and family carers has to be clear and open.
During the past 5–7 years much effort has been made to draw up guidelines or protocols in various areas of clinical care. I feel strongly that the care of terminally ill patients in the Tower Hamlets community needs a guideline or protocol, because such care is shared between the GP, the district nurse and the community palliative care team.
It may be that some health authorities have already developed such guidelines or protocols. If these are available, I would be grateful to receive a copy. We could then use it, in Tower Hamlets or our health authority (ELCHA), to develop our own protocol to suit our population, i.e. patients, carers and GPs who provide shared care.
Dr Ganesh Dutt, GP & vice-chair, Small Practices Association, Tower Hamlets, London
Professor Ilora Finlay, replies:
Dr Dutt raises some very important issues. Patients who are terminally ill can deteriorate and develop concurrent problems at any time of the day and night. The concept of a 9–5 consultancy service fails to recognise that out of hours this may mean that fhe sickest patients are being looked after by those least experienced to provide this level of care.
Coordinating shared care between the GP, district nurse and community palliative care team does require explicit clarification of roles within the team.
In most parts of the UK, referral and admission policies have been written by individual palliative care services, and vary dependingSon the number of healthcare professionals and other resources available locally.
If palliative care services are to plug the out-of-hours gap, then a massive investment in these services is required.
Unfortunately, Dr Dutt's letter does not state the out-of-hours arrangements for GPs and district nurses.
No external protocol or guideline will work well unless it is modified to take account of a local situation.
It would seem important that he works very closely with the clinical leaders in the local community palliative care team and with other GPs in the area to ensure that patients are able to remain at home, with care available at all times.
It may well be important also to work with the Marie Curie Nursing service in the area, who can be an important source of nursing care in the home when people are extremely ill but do not wish to be admitted to a hospital or hospice.
Ilora Finlay, Professor of Palliative Medicine, Velindre NHS Trust, Cardiff, and Marie Curie Cancer Care