Identifying and responding to patient and carer need is fundamental in providing holistic end-of-life care. Numerous assessment tools are currently in use to facilitate this and whilst the advantage of these is recognised they only offer a snapshot assessment in what is often a long disease journey. It is the role of the specialist palliative care team to anticipate future needs that may be not immediately apparent but pose a risk to patients’ or their loved ones in the future.
We propose the concept of risk factors for a negative death experience. These risks may not necessarily cause difficulty in the present but should alert health professionals that the patient is at risk of a turbulent disease trajectory. This is a new concept, with little supporting evidence at present.
Our review of the current literature base and local nominal group discussions have identified the following features as risk factors for a negative outcome for patients and their loved ones:
Poor engagement with advance care planning
Carer strain related to palliative illness
High levels of service use
Bereavement risk factors.
It is anticipated that earlier specialist palliative input in situations where these risk factors are present offers greater opportunity to intervene in order to ameliorate risk, resulting in better care for the patient and improved outcomes for those close to them.
We plan to use our findings to educate local GPs about the risk factors that should trigger early palliative care referral. A tool to aid the early recognition of risk is currently in development and will be integrated into Pilgrims Hospice referral forms in the future.
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