Trusts must embed Preferred Priorities of Care within everyday practice. This action will enable patients in all settings have a say over where they die, argues Eleanor Sherwen
One of the main phrases to catch media attention in coverage of the recent White Paper was: “No decision about me, without me.”
Making that aspiration a reality will continue to be a challenge in end of life care: there is currently a clear mis-match between where people would wish to be cared for in their last days of life and where they actually die.
Advance care planning (ACP) is central to addressing that mis-match. NHS West Essex PCT has pledged to provide real choice to people at the end of life, including supporting them to die at home wherever possible if that is their wish to do so. To help achieve that, the trust is encouraging wider use of one aspect of ACP, the Preferred Priorities for Care (PPC).
Our analysis of these patient-held documents – in which an individual sets out their preferences and wishes for their end of life care – suggests they can help provide people with genuine choice and control over their care.
In a culture where 58% of all deaths take place in hospital, our analysis of 100 cases where individuals had completed PPCs found two striking statistics.
Some 82% of people said they would prefer to die at home, with just 1% selecting a hospital as their preferred place of death. Second, 83% of these individuals died in their preferred setting – underlining the value of the discussion, thought and planning by the individual, their family and clinicians, which characterise PPC.
However, the analysis also confirms that patients with cancer are far more likely to have a PPC than individuals with other life-limiting conditions such as COPD or cardiac disease. Some 83% of the cases we studied involved cancer. This perhaps explains why 17% of the individuals included in our analysis expressed a wish to be cared for in a hospice during their final days of life. Our findings echo that of the National End of Life Care Intelligence Network’s recent report on variations in place of death which revealed that people with cancer were more likely to die outside hospital than people with other life-limiting conditions (Nursing Times, 10 August 2010). Anecdotal evidence suggests end of life conversations are “easier” to broach with individuals who have a cancer diagnosis and that the disease trajectory is more predictable than in other long term conditions.
Most of the PPCs we studied were completed by community nurses, including Macmillan nurses – with some completed by a professional in a hospice or a care home or a social care worker. Contributions from nurses working in hospital were notable by their absence.
Our analysis is part of a growing body of evidence supporting the use of the PPC. All nurses, including those working in hospital, should be seeking to discuss future care preferences with all individuals who have a life-limiting diagnosis. Consultants and other medical colleagues can be focused on curative treatment rather than palliative care; there is a role here for nurses to initiate the conversations that form the basis of an effective PPC.
To ensure that individuals and their families are not given conflicting information and messages, the nurse should raise the issue of PPC and other ACP at a multi-disciplinary team meeting. Knowing that a nurse has, or is about to, initiate such conversations in a particular case should then shape the context of future discussions of all those involved in that individual’s care.
In West Essex we are seeking to embed PPC within everyday practice through education and a “champions” network. We are building this into the commissioning of services for people with life-limiting conditions. It is challenging and it means cultural change – but our data analysis suggests that the results in this most sensitive area of care justify strong action.
- For further information on PPC see the National End of Life Care Programme’s factsheet 5
ELEANOR SHERWEN is a senior service development manager within West Essex PCT, and the National End of Life Care programme’s national programme manager for the facilitator network, user involvement and nursing