Statement from Jane Petit, Chief Executive of St Elizabeth Hospice:
Recently we have seen the publication of the ‘More Care, Less Pathway’ report, a review of the Liverpool Care Pathway with a key message on the need to involve family and friends in day-to-day decisions about their relatives or friends’ care.
This set me thinking about my early days as a student nurse when I would often see a family going in to talk to the doctor, usually just before visiting time, emerging visibly distressed but determined to be strong so that their relative or friend didn’t guess what was round the corner.
Fast forward a few years and the focus had shifted; information on the patient’s condition was theirs and theirs alone, to be shared or not as they decided. Often this was not an issue, patients and families talked together and shared their greatest fears and aspirations.
Sometimes though, with the focus on the patient’s wishes, healthcare professionals felt able to sidestep those difficult conversations with the family. Now family and friends are firmly back in the picture.
Supporting the patients’ right to choose where they die is important, but can this ever be a unilateral decision? In our experience, the outcomes are best for everyone when this is a negotiated decision, with the concerns of the patient, family and friends openly discussed, the availability of resources such as equipment and nursing services explored and a ‘plan B’ to cope with the unexpected, which can so often occur at the end of life.
The Liverpool Care Pathway should have been a prompt to ensure that these conversations had happened and where it was used well this was most certainly the case. However, as we have seen and heard this did not always happen. We need to ensure Individualised Care Plans, which are set to replace the Liverpool Care Pathway, emphasise the need for these conversations to happen in a meaningful way.
St Elizabeth Hospice will continue to play its part by offering advice, support and training to ensure the best outcomes for patients and their bereaved families and friends.