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In McCaughan’s qualitative study,(1) I was drawn by two themes identified from interviews with clinicians and relatives of patients with haematological cancers: ‘mismatch between the expectations and reality of home death’ and ‘a preference for hospital death.’ This challenges the established dogma that most people would wish to die at home, if they had the choice.(2)
The paper goes on to posit reasons, namely that patients with haematological cancers can have complicated clinical trajectories, with difficult-to-manage symptoms towards the end of life. Whilst this is true, it can also be more broadly applied to many terminal disease trajectories, in which single organ failure can progress to multi-organ involvement, brittle health and the risk of sudden deterioration. This can be frightening for both the patient and their close ones, hence an emergency call and blue light to A&E. Inpatient symptom control and support may then ineluctably become inpatient terminal care.
In fact, desire for a home death is likely an overstated assertion, particularly as people approach the terminal phase of illness,(3) and particularly in conditions other than cancer.(4) The ideal of a home death may be very different to the reality of managing complex symptoms without the 24-hour access to medical professionals or support available in a hospital or hospice.
The National End of Life Care Intelligence Network identifies death in the ‘usual place of residence’ (home...
The National End of Life Care Intelligence Network identifies death in the ‘usual place of residence’ (home, care home or religious establishment) as a key performance indicator (KPI) and thus a proxy marker for good quality terminal care.(5) McCaughan’s article discusses why this quality indicator is not met in one disease subset. I propose that the focus should instead be as follows. Firstly, individuals approaching the end of life should be provided with the appropriate information to allow them to make their own informed decision on preferred place of death. ‘Preferred place of death’ rather than ‘usual place of residence’ – even if the latter remains to be the most popular choice – may then be a more suitable KPI. Secondly, we must strive for the best possible care in each setting. For those with complex symptomatic needs not currently practical to manage in the community, or for those who do find themselves to be in hospital near the end of life, it seems paramount that we develop inpatient services to enable ‘a good death in hospital.’
(1) McCaughan D, Roman E, Smith AG, et al Determinants of hospital death in haematological cancers: findings from a qualitative study BMJ Supportive & Palliative Care Published Online First: 29 June 2017. doi: 10.1136/bmjspcare-2016-001289 http://spcare.bmj.com/content/early/2017/07/19/bmjspcare-2016-001289
(2) What we know now 2014. National End of Life Care Intelligence Network. Public Health England http://www.endoflifecare-intelligence.org.uk/resources/publications/what...
(3) Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care 2013; 12:1-28.
(4) Murtagh FE, Bausewein C, Petkova H, et al. Understanding place of death for patients with non-malignant conditions: a systematic review. NIHR SDO Programme, 2012. http://www.netscc.ac.uk/hsdr/files/project/SDO_FR_08-1813-257_V01.pdf
(5) Data sources, National End of Life Care Intelligence Network. Public Health England http://www.endoflifecare-intelligence.org.uk/data_sources/place_of_death