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We were delighted to learn from enthusiastic responses to our article (1) that other researchers are also finding that the analysis of routine NHS datasets can shed light on the high volume and variety of care that people seek out-of-hours in their last year of life.
Miller focussed on Primary Care Out-of-hours and Emergency Department data of people dying specifically of cancer. She included prescribing data, and her detailed textual analyses allowed a nuanced understanding of the presenting complaints and diagnoses to be gained. (2) She also quantified the very substantial role that unscheduled care plays in meeting the acute palliative care needs of people in the last year of life.
Chu in her study, like us, concluded that unscheduled care databases should incorporate more domains relevant to palliative care, and increase the capability of linking with Electronic Palliative Care Co-ordination Systems (EPaCCS). (3) This would help to understand the benefits of these systems and describe their use by health care professionals. We found in Scotland that GPOOH is the only unscheduled care database that captures such information.
Diernberger recently analysed the patterns and NHS costs of out-patient and in-patient hospital care in the last year of life in Scotland, noting as we had done that people dying of cancer had the highest number of admissions. (4) The mean cost of planned and unplanned admissions was £10,000 per patient in the last year of...
Diernberger recently analysed the patterns and NHS costs of out-patient and in-patient hospital care in the last year of life in Scotland, noting as we had done that people dying of cancer had the highest number of admissions. (4) The mean cost of planned and unplanned admissions was £10,000 per patient in the last year of life, with a sharp rise in the last 3 months of life. The average cost for older people was less.
Our study, integrating data from NHS24, PCOOH, ambulance service, Emergency Departments and emergency admissions identified typical unscheduled care pathways for people dying from cancer, organ failure and dementia, allowing us to understand the interactions and how a lack of services in the community increases hospital referrals.
These recent articles all show the utility of big data studies to understand service usage patterns and frequencies which raise questions about whether these mesh with the needs of patients in their last year of life. Further studies, including social care and specialist palliative care datasets, would create an even broader understanding from a systems perspective, especially if integrated with qualitative patient and carer experiences. Analysing the change in usage of these demand-led services during the COVID pandemic would yield lessons for future planning.
1 Mason B, Kerssens JJ, Stoddart A, et al Unscheduled and out-of-hours care for people in their last year of life: a retrospective cohort analysis of national datasets BMJ Open 2020;10:e041888. doi: 10.1136/bmjopen-2020-041888
2 Mills SEE, Buchanan D, Guthrie B, Donnan P, Smith BH. Factors affecting use of unscheduled care for people with advanced cancer: a retrospective cohort study in Scotland. British Journal of General Practice. 2019;69:e860–8. doi:10.3399/bjgp19X706637
3. Chu CS. Using routine databases to evaluate Electronic Palliative Care Co-ordination Systems (EPaCCS). BMJ Evidence-Based Medicine Published Online First: 29 January 2021. doi: 10.1136/bmjebm-2019-111332
4.Diernberger K, Luta X, Bowden J, et al Healthcare use and costs in the last year of life: a national population data linkage study. BMJ Supportive & Palliative Care Published Online First: 12 February 2021. doi: 10.1136/bmjspcare-2020-002708
This study demonstrates the utility of routinely collected databases in palliative and end of life care research. Obtaining large sample sizes covering a whole population of interest is a significant advantage of using routine databases. I found the unscheduled care patterns of different disease groups (cancer, organ failure, frailty/progressive neurological condition, etc.) particularly interesting.
As explored in a recent article, routine databases should work to incorporate more domains relevant to palliative care, and increase the capability of linking with Electronic Palliative Care Co-ordination Systems (EPaCCS) . This will help further our understanding the potential benefits of these systems and their use by health care professionals.
1. Chu CS. Using routine databases to evaluate Electronic Palliative Care Co-ordination Systems (EPaCCS). BMJ Evidence-Based Medicine Published Online First: 29 January 2021. doi: 10.1136/bmjebm-2019-111332
This study provides an excellent comprehensive overview of unscheduled care use across a wide variety of conditions. The frequency of unscheduled care use by people in their last year of life identified in this study (94.5%) is consistent with our findings examining unscheduled care use in the last year of life by people who go on to die from cancer (1). The rates of unscheduled care use identified in this paper and in our own work are substantially greater than those reported in previous research in this field (2). Previous studies have often focused on A&E-only, rather than taking into account unscheduled care services as a whole, including GP Out-of-Hours services, and have been largely attendance-based rather than cohort-based, making population use estimates less reliable.
The trends emerging from these papers suggests that the magnitude of unscheduled care use in the last year of life is significantly greater than has been previously believed to be the case. This analysis strengthens the case for improved recognition of the substantial role that unscheduled care, particularly GPOOH, plays in meeting community care needs for people with palliative and end of life care needs, and improving resourcing, training and staffing available to in unscheduled care, in order to deliver high-quality palliative and end of life care through all unscheduled care services.
1. Mills SEE, Buchanan D, Guthrie B, Donnan P, Smith BH. Factors affe...
1. Mills SEE, Buchanan D, Guthrie B, Donnan P, Smith BH. Factors affecting use of unscheduled care for people with advanced cancer: a retrospective cohort study in Scotland. British Journal of General Practice. 2019;69:e860–8.doi:10.3399/bjgp19X706637
2. Mills, SEE, Geneen LJ, Buchanan D, et al. Factors associated with unscheduled care use by cancer decedents: a systematic review with narrative synthesis. BMJ Supportive & Palliative Care. Published Online: 13 October 2020. doi: 10.1136/bmjspcare-2020-002410
This is yet another study emphasizing the important role of nearness to death in lifetime health care costs. This study looked at the whole of Scotland, however, what is not widely appreciated is that the absolute number of deaths (which drive the costs) are highly variable from one year to the next . This then means that the marginal change in costs is also highly variable [2-4]. When these costs are broken down into smaller areas such as Area Health Boards the deaths become even more volatile and so do the marginal costs arising out of end of life. It has been traditional in the UK NHS to blame the AHB or CCG for the ensuing cost variances, which, is entirely unjustified. It is the inflexibility in the funding formula which is the essential problem.
1. Jones R. End of life care and volatility in costs. Brit J Healthc Manage 2012; 18(7): 374-381.
2. Jones R. Why is the ‘real world’ financial risk in commissioning so high? Brit J Healthc Manage 2012; 18(4): 216-217.
3. Jones R. Volatile inpatient costs and implications to CCG financial stability. BJHCM 18(5): 251-258.
4. Jones R. Cancer care and volatility in commissioning. Brit J Healthc Manage2012; 18(6): 315-324.