The importance of sharing information about people’s needs and wishes in palliative and end of life care
A blog by Dr Kath Lambert, Consultant in Palliative Medicine at Harrogate and District NHS Foundation Trust
We will all experience death and dying but we can find it hard to talk to friends and family about it. As a palliative medicine consultant, I know that by talking to people and having honest conversations about end-of-life care, I can begin to prepare them for what to expect and much better understand their unique priorities and wishes. Including family and those most important to the person in the discussion ensures that I can help people feel more confident about what will happen in the days and months to come. It allows me to provide treatment and care based on what is most important to that individual person.
Working on the project to develop the PRSB standard for sharing palliative and end-of-life care information, for which I was a clinical advisor, we were able to engage hundreds of people and their families to tell us about their experience of end-of-life care and what mattered most to them. Many told us that they were not confident that health and care staff had access to information about their wishes and preferences and most said they would be more confident in their care if they knew that information about their wishes and needs were recorded and shared within the care team.
Currently, information about a person’s wishes may be recorded but it doesn’t always flow consistently across health and care systems. For example – the information may be siloed in electronic records in different care settings, it may be partial, or even contradict other records, depending on when it was last recorded or updated and by whom. It may be documented on paper by the patient or professional or information handed over via phone which can be challenging to share, particularly over a longer period of time when we may see different health and professionals.
The PRSB’s Palliative and End of Life Care Information Standard helps ensure that people’s end-of-life wishes are consistently recorded and shared and can be accessed by a health or care professional when needed. This means that the outcomes of advance care planning conversations such as preferences for place of death can be viewed by clinicians so that care and treatment is provided appropriate to the person themselves.
As a consultant in palliative medicine, I see how this is critical in emergency situations, where sharing information quickly in a consistent way can make all the difference to a patient, their loved ones and carers at this emotionally heightened time. Being able to respond to their wishes in a timely and effective way helps them feel respected, listened to and confident. This was confirmed by PRSB’s 2021 survey with Compassion in Dying, in which 86% of people said that they would have more confidence in their palliative and end of life care if the healthcare team supporting them could see what treatments they did and did not want.
I firmly believe that the Palliative and End of Life Care Information Standard is a key enabler of integrated, joined up care, and implementing it will improve the experience of both individuals and health and care providers. It will give people nearing the last days of their lives peace of mind that their needs will be handled by health and care professionals who will be able to make informed decisions to meet those needs. We would all want that assurance for ourselves at life’s end, and so it is vital that we make this happen now for those for whom we care.