Imminence of death in hospital patients: evolution of

Imminence of death in hospital patients: evolution of a study David Clark @dumfriesshire Wellcome Trust Investigator University of Glasgow A selection of initiatives on hospital end of life care Hospice Friendly Hospitals (Ireland) Living and Dying Well (Scotland) The Transform programme (England) PATCH (Scotland) Building on the Best (England+Scotland) Royal College of Physicians audit (2016) Major gaps in documenting basic aspects of care in patients whose death could reasonably be anticipated These included patients or loved ones discussing their own concerns and choices; spiritual care, clear plans around eating, drinking, artificial nutrition, and hydration; and control of common symptoms Only a third of hospitals had face to face specialist palliative care seven days a week. Many patients were unable to see specialist doctors or nurses Seven key recommendations SPC provision, education/training, audit,

designated board member, assessment of imminently dying, four hourly monitoring of symptoms, pastoral and spiritual care provision Quality of care in hospitals (CQC March 2017) 292 hospitals in England - variation both in the quality of care between hospitals and between individual core services within the same hospital. While the majority of hospital services are delivering good quality care and looking after patients well, inspections have also uncovered pockets of poor care even in good hospitals.. End of life care services: rated outstanding (7%), good (56%) requiring improvement (33%) inadequate (4%) The NHS stands on a burning platform - the model of acute care that worked well when the NHS was established is no longer capable of delivering the care that todays population needs The original study of imminence of death among Scottish hospital patients Prevalent cohort study on one day Population based, not a sample All acute hospitals in Scotland Linking hospital records to death registrations First study of its kind in the world In hospital 2010 Scotland

Census of 10,743 inpatients in 25 Scottish teaching and general hospitals on 31 March 2010 3,098 (28.8%) patients died during the one year follow up period: 2.9% by 7 days, 8.9% by 30 days, 16.0% by 3 months, 21.2% by 6 months, 25.5% by 9 months and 28.8% by 12 months. Almost one in ten patients (9.3%) patients died during the index admission Follow up in hospital Scotland 2013 10,595 patients were in hospital on 10 April 2013 29.5% of the 2013 cohort had died one year later 8.0% died on the index admission Previous result confirmed no significant differences Kaplan Meier plot comparing survival curves of 2010 and 2013 cohorts Patients in Hospital on 31/03/2010 who died within 12 months Patients in Hospital on 10/04/2013 who died within 12 months No.

% No. % Male 1477 30.4% 1510 31.0% Female 1616 27.5% 1616 28.3% Under 60 394

13.1% 333 11.8% 60-64 191 22.6% 166 21.4% 65-69 299 29.3% 306 29.6% 70-74 355

30.0% 396 34.7% 75-79 490 33.0% 492 35.1% 80-84 559 39.2% 589 39.0% 85 and over 805

45.6% 844 44.3% 1 (Most) 871 29.7% 872 29.6% 2 719 30.2% 740 30.0% 3 569

27.0% 536 28.3% 4 504 28.1% 506 29.5% 5 (Least) 424 30.8% 467 30.8% 6 9.8%

5 9.1% Surgical 685 17.3% 630 17.7% Medical 2304 35.0% 2403 35.1% 104 51.5% 93

52.0% 3093 (adjusted) 28.8% 3126 29.5% Gender Age Deprivation: SIMD (2012) Missing Specialty Other Total Implications Two purposes in repeating the analysis for 2010 / 2013: verification, change over time It would appear that Scottish hospitals are in a reasonably settled pattern of containing a substantial proportion of inpatients that are in the last year of life There was no significant difference in this between the two

cohorts Impact of first study Google Scholar citations = 67 Altmetrics score = 286 Widely known, often featured in Outputs from Palliative clinical presentations Medicine #3 of 1,125 Continues to be mentioned on social media discussions Latest Scottish study (Chris Isles et al, BMJ Open - under review following revision) Incident cohort study All (10,477) emergency hospital admissions to medicine 18-25 March 2015 in Scotland 22.4% died by 12 months. 5.8% died during the index admission Mortality five times higher for patients aged 85 years cf under 60 years 41.9%

vs 7.9%). Men had higher mortality than women (24.1% v 20.8%). Cancer patients had higher mortality rate at one year (57.6% v 17.6%). 68% of the deaths occurred in hospital 48% of all patients had been admitted as an emergency to hospital in the year before the census admission Isles et al forthcoming - Characteristics of cohort and associated one-year mortality rates % Deaths within 7 days % Deaths within 30 days 5,463 5,014 52.1% 47.9%

148 131 2.7% 2.6% SIMD SIMD1 (most) SIMD2 SIMD3 SIMD4 SIMD5 (least) 3,092 2,478 1,844 1,667 1,396 29.5% 23.7% 17.6% 15.9% 13.3% 78 66 47 43 39

Age group 0-59 60-64 65-69 70-74 75-79 80-84 85+ 3,915 710 926 1,066 1,175 1,213 1,472 37.4% 6.8% 8.8% 10.2% 11.2% 11.6% 14.0% Cancer diagnosis No Yes Total

9,214 1,263 10,477 87.9% 12.1% 100.0% No. of Admissions Sex Female Male % Deaths within 3 months % Deaths within 6 months % Deaths

within 9 months 335 371 6.1% 7.4% 2.5% 2.7% 2.5% 2.6% 2.8% 204 155 119 121 94 27 12 27 39 27 53 88 0.7%

1.7% 2.9% 3.7% 2.3% 4.4% 6.0% 202 71 273 2.2% 5.6% 2.6% % Deaths within 1 year % 669 745 12.2% 14.9% 859

937 15.7% 18.7% 1,032 1,113 18.9% 22.2% 1,138 1,208 20.8% 24.1% 6.6% 6.3% 6.5% 7.3% 6.7% 372 342 255 236 193 12.0%

13.8% 13.8% 14.2% 13.8% 473 436 309 305 257 15.3% 17.6% 16.8% 18.3% 18.4% 564 519 374 370 303 18.2% 20.9% 20.3% 22.2% 21.7% 621

574 411 397 343 20.1% 23.2% 22.3% 23.8% 24.6% 80 35 64 98 89 125 202 2.0% 4.9% 6.9% 9.2% 7.6% 10.3% 13.7% 179 79 133

192 203 243 369 4.6% 11.1% 14.4% 18.0% 17.3% 20.0% 25.1% 227 104 172 229 263 320 465 5.8% 14.6% 18.6% 21.5% 22.4% 26.4% 31.6% 277

125 207 270 315 376 560 7.1% 17.6% 22.4% 25.3% 26.8% 31.0% 38.0% 309 132 234 297 351 406 617 7.9% 18.6% 25.3% 27.9% 29.9% 33.5% 41.9%

459 234 693 5.0% 18.5% 6.6% 896 502 1,398 9.7% 39.7% 13.3% 1,163 617 1,780 12.6% 48.9% 17.0% 1,444 686 2,130 15.7%

54.3% 20.3% 1,618 728 2,346 17.6% 57.6% 22.4% Incident cohort study- mortality after 12 months New Zealand Prof Merryn Gott To identify the proportion of a cohort of NZ public hospital inpatients dying within 12 months of a given census date. To identify associations between likelihood of death and key sociodemographic, diagnostic and service related factors. To compare results with, and extend findings of Scottish study undertaken for the same time period and census date. Methods

Data provided for all publicly-funded hospitalisations on 10 April 2013: demographic information (age, gender, deprivation of area of residence, prioritised self-identified ethnicity) hospitalisation (admission date and type, discharge date and type, length of stay, specialty and diagnosis) mortality information Findings 6,074 publicly-funded patients stayed overnight in NZ hospitals on the census date: 54% female; 46% male. 42% of patients were aged >60 years (17% of whom >80 years) 878 (14.5%) patients had died during the 12-months following the census date: 1.6% by 7 days, 10.9% by 6 months, and 14.5% by 12 months 135 patients (2.1%) died during the index stay - this accounted for 14.8% of all deaths within the 12-month follow-up period. After 12 months (NZ) 14.5% of patients had died 2.1% during the index stay Older age and deprivation were predictors of dying

Denmark Dr Lene Jarlbaek Index-date: 10th April 2013 (as for NZ and Scotland) Included were patients in all somatic, public hospitals Excluded were in-patients in obstetric departments, and in-patients in psychiatric hospitals. 13,412 patients were in hospital or were admitted on the 10th April 2013, and stayed overnight (NB differences with Scotland and NZ) Results 22% had died within 1 year after the index-date dead alive 5.5% died on the index epsisode Half of the deceased died less than 60 days after the index-date Hospitals - patients, proportions of deceased and age of the patients Other potential studies Interest from Hong Kong Third study planned for Scotland using census date of 6 April 2016 Still no version of the study from England, or Wales

Further developments Dr Marian Krawczyk, new Lord Kelvin Adam Smith Fellow Systematic review and new ethnographic research in selected hospitals Ethnographies of end of life in hospitals Lifting the lid: ethnographic studies of end of life care in hospitals systematic review Marian Krawcyzk et al Books: 23 Book chapters: 10 Journal articles: 150+ Dissertations: 46 Little known about this work Knowledge transfer problem References

Clark, D., Armstrong, M., Allan, A., Graham, F., Carnon, A., and Isles, C. Imminence of death among a national cohort of hospital inpatients. Palliative Medicine, 2014, 28(6): 474-479 Clark, D Schofield, L Graham, F Gott, M Isles, C Jarlbaek, L (2016) Letter: Likelihood of death within one year among a national cohort of hospital inpatients in Scotland. Journal of Pain and Symptom Management. 52(2): e2-e4. Gott M, Broad J, Zhang X, Jarlbaek L, Clark D. Likelihood of death among hospital inpatients in New Zealand: prevalent cohort study. BMJ Open. 2017;7(12):e016880. Lene Jarlbaek, Helle Timm, Merryn Gott, David Clark, Imminence of death in Danish hospitals a population-based study. In preparation for Scandinavian Journal of Public Health. Glasgow End of Life Studies Group glasgow.ac.uk/endoflifestudies @EndofLifeStudy David Clark @dumfriesshire

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