An email based ‘virtual MDT’ allowed professionals to support a patient and her family in the final months of her life. This is an example of a model we have developed that works well in coordinating the highly personalised packages of care needed to deliver palliative care and end of life care.
A 17 year old girl had been diagnosed 8 years previously with a brain ependymoma. She developed 3 mid to lower spinal relapses, and no further curative treatment was possible.
Over the following 6 weeks, her disease progressed causing paraplegia, irregular bowel and bladder function. She lived with her parents, and was now having regular contact with the community children’s nurses and her local young people’s hospice. This was supported by the wider team, but key individuals were emerging.
We started an email thread including 16 of the key professionals. It was recognised that the time course of her deterioration had potential to be both lengthy and complex and this approach was felt to give the best opportunity to provide sustainable support.
Individual secure email addresses were used to facilitate communication. Consent was obtained and documented at the start of the thread, with a protocol for communication.
Over the next 3 months, a total of 75 emails were sent on this thread. They included updates on discussions, care plans, visits, practical issues, questions for general consideration, highlighting potential issues or worries, or issues flagged up by the family. Replying to subsets of the group was discouraged, but forwarding updates to local teams strongly encouraged. Symptom plans, prescriptions and her Advance Care plan were included.
This model of care provides a way for geographically and professionally separate team members to work collaboratively in supporting families.
Email will never replace to need for face to face and verbal contact. Rather it provides the support structure for these critical contacts to be timely, expert and patient focussed.
The family expressed their satisfaction with this way of working, particularly saying that they had felt that all the professionals were really listening to them and communicating with them and each other, something that was unusual in their experience.