Advance care planning in primary care

Of the various trajectories of physical decline, organ failure is often the most difficult to plan for in advance because of its unpredictability.1 The qualitative study by Davison and Simpson in this week's BMJ challenges the notion that early discussion of planning for the end of life will destroy hope rather than create it. Rather, it allowed patients dying of end stage renal failure and their carers to reflect on and reorient their aspirations.2 A wealth of evidence indicates that many elderly patients want to discuss these issues with their healthcare professionals, but this rarely happens even when (as in the United Kingdom) continuity of care with a trusted general practitioner is available.³⁴ The main barrier is probably doctors' reluctance to raise the issue of planning for death because of the largely unfounded fear of destroying hope.

Advance care planning is practised in Australia, Canada, and the United States.^5–7 It is also proposed as a cornerstone of the emerging National Health Service national end of life care strategy in England (http://eolc.cbcl.co.uk/eolc). It should enable provision of services in accordance with patients' wishes—for example, patients choosing home care rather than other places.8

Advance care planning is now defined as a process of discussion between a patient and professional carer, which sometimes includes family and friends. This dialogue has two outcomes—an “advance statement,” which describes the patient's positive preferences and aims for future care; and an “advance decision,” which provides informed consent for refusal of specific treatment if the patient is not competent to make such a decision in the future. The last of these outcomes is especially relevant as the new Mental Capacity Act in England is due to be enacted in April 2007.9 The focus of advance care planning is thus shifting from eliciting refusal of treatment from a minority of patients to identifying the preferences for care of most patients.

Internationally, advance care planning can be incorporated into primary care. In the UK this year, the new general practice contract has established practice based patient registers, including one for people who might benefit from supportive or palliative care and who might die within the next 12 months. Guidance has been developed through the Gold Standards Framework programme (which is now used by over a third of UK practices) to identify and care for such patients.¹⁰¹¹ The box shows a possible scheme to use advance care planning to improve end of life care.

Realistic information, sensitively provided, helps patients and their families to maintain a feeling of normality and allows them to develop new coping strategies. Such discussions engender hope. Such hope is not for a cure but for understanding the process of dying and for reassurance that support will be given during a variety of eventualities. Calman described quality of life in terms of the gap between patients' expectations and reality.12 Our role may be to negotiate realistic changes in expectation (by discussing likely trajectories, prognosis, and advance care planning) and concurrent improvements in reality (with good symptom control and support services) to improve quality of life in the final months and weeks.

Davison and Simpson's study is a small but important step in enhancing our understanding of the importance of notions of hope, even when to the out-sider it seems that all hope is lost. Their findings need to be confirmed in other populations (the patients studied were almost exclusively white) and through implementation studies to evaluate how best the proactive approach improves outcomes of patients. That said, considerable evidence supports the integration of advance care planning into routine practice as part of good care for all people with progressive life threatening illnesses. Planning for death with our patients may be an uncomfortable concept but is likely to engender hope rather than dispel it.