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In their paper in this issue of the BJGP, Meeussen et al1 report that GPs knew the preferred place of death for 46% of their patients with non-sudden deaths. This information came from the patient alone for 40%, from significant others alone for 36% and from both for 22%. Patients whose GP knew their preferences were more likely to achieve their wish, and GP knowledge was associated with greater GP involvement in end-of-life care. The authors call for improvement in GPs' knowledge of patients' preferences for place of death, suggesting this to be a marker of end-of-life care quality.
The majority of terminally ill patients prefer to die at home; a preference that declines as illness progresses.2,3 However, such a preference is neither categorical nor fixed, but ‘a socially contingent leaning in a particular direction, rather than an abstractly arrived at certainty’ qualified by speculation about how things might change with events.4 A recent paper in the BMJ5 found preferences for place of death to be often poorly formed in patients' minds, and often inferred by health professionals without direct questioning or reaching a definitive answer. The enabling of patients to achieve their preferred place of death is viewed by the authors as a very limited proxy measure for the effectiveness of palliative care delivery.
The NHS End of Life Care Strategy6 advocates a care pathway that starts with health professionals discussing with patients their care preferences, and advocates the use of the Preferred Priorities for Care document.7 This is a welcome challenge to health professionals: all of us at times fail to provide adequate opportunities for discussion, or block such conversations when they arise. However, exploring preferences with patients is challenging at several levels.
Judging the appropriate time to raise end-of-life issues with patients and their families is very challenging. Are we reaching that stage in the disease process? Too soon might demotivate patients, causing them to ‘give up’. Too late (currently a common situation) does not allow patient-centred plans to be made. Time and high-level communication skills honed by experience are needed gently to indicate to the patient a willingness to discuss what their future wishes might be should things get worse; and then to allow the patient either to discuss issues should they wish, or to respect their reluctance to discuss the issue. We cannot impose timing or content: not only are patients' preferences for place of death very individual, so are their preferences for whether and when to talk, and with whom.
It is not a failure if a patient dies having never discussed their preference for place of death, provided that opportunities have been repeatedly been provided to do so: it is their final illness. Care needs to be handled in the way that they prefer, even if it is untidy and creates uncertainty for the GP and others involved in their care. A preferred priority for silence is to be respected.
Commissioned; not peer reviewed.