key: cord-306685-w7y5g2x0 authors: Chalk, D.; Robbins, S.; Kandasamy, R.; Rush, K.; Aggarwal, A.; Sullivan, R.; Chamberlain, C. title: Modelling Palliative and End of Life resource requirements during COVID-19: implications for quality care date: 2020-07-24 journal: nan DOI: 10.1101/2020.07.23.20160564 sha: doc_id: 306685 cord_uid: w7y5g2x0 Background There were between 84,891 and 113,139 all-cause excess deaths in the United States (US) from February 1st to 25th May 2020. These deaths are widely attributed directly and indirectly to the COVID-19 pandemic. This surge in death necessitates a matched health system response to relieve serious health related suffering at the end of life (EoL) and achieve a dignified death, through timely and appropriate expertise, medication and equipment. Identifying the human and material resource needed relies on modelling resource and understanding anticipated surges in demand. Methods A Discrete Event Simulation model designed in collaboration with health service funders, health providers, clinicians and modellers in the South West of England was created to estimate the resources required during the COVID-19 pandemic to care for deaths from COVID-19 in the community for a geographical area of nearly 1 million people. While our analysis focused on the UK setting, the model is flexible to changes in demand and setting. Results The model predicts that a mean of 11.97 hours (0.18 hours Standard Error (SE), up to a max of 28 hours) of additional community nurse time, up to 33 hours of care assistant time (mean 9.17 hours, 0.23 hours SE), and up to 30 hours additional care from care assistant night-sits (mean of 5.74 hours per day, 0.22 hours SE) will be required per day as a result of out of hospital COVID-19 deaths. Specialist palliative care demand is predicted to increase up to 19 hours per day (mean of 9.32 hours per day, 0.12 hours SE). An additional 286 anticipatory medicine bundles or "just in case" prescriptions per month will be necessary to alleviate physical symptoms at the EoL care for patients with COVID-19: an average additional 10.21 bundles (0.06 SE) of anticipatory medication per day. An average additional 9.35 syringe pumps (0.11 SE) could be needed to be in use per day (between 1 and 20 syringe pumps). Conclusion Modelling provides essential data to prepare, plan and deliver a palliative care pandemic response tailored to local work patterns and resource. The analysis for a large region in the South West of England shows the significant additional physical and human resource required to relieve suffering at the EoL as part of a pandemic response. 1 million people. The model identified a large increase in need for staff time, including registered community nurses, health care assistants and specialist palliative care nurses and doctors, as well as pressure on resources including syringe pumps and anticipatory medication (such as opioids) used at the EoL for symptom relief from breathlessness and delirium. 41.5% (193,366) of COVID-19 deaths to date have been in Europe,(1) but the burden in low and middle income settings is increasing exponentially. Increasingly, excess mortality is being used to describe the impact of COVID-19, comparing current mortality with deaths at the same period in previous years, indicating deaths that are likely related to COVID-19, but that have not been directly attributed to it due, primarily, to differences in testing. Excess mortality also includes deaths due indirectly to COVID-19, resulting from disruptions to health services and health seeking because of the pandemic. Excess mortality in the higher excess mortality compared with the same period in the previous 5 years. (4) This surge in death rates is substantial and represents an extensive personal and societal cost, as well as a significant increased burden on end of life care resource. It is essential that those dying from COVID-19, as with all illness, receive high quality relief of suffering, which is mandated by the human right to health and a recognised component of essential universal health coverage. (5) Without access to the essential palliative care package, countries will not meet the sustainable development goals, and inequity of access to quality End of Life (EoL) care is likely to increase. (5, 6) In COVID-19, where predominant physical symptoms at the EoL include delirium and respiratory distress(7) palliative care has a key role in administration of anticipatory medicines. Anticipatory medication may include midazolam for agitation, morphine or equivalent opioid for breathlessness or pain, amongst others. Palliative and EoL care are critical in the pandemic context to support the psychological and spiritual needs of patients, their loved ones and health professionals particularly in the context of social isolation due to the virus. EoL care, defined in this paper as the last days of life, differs by culture, country and by setting (home, hospital, hospice, care home). Lower income countries frequently rely more on informal care networks of family and friends who in some care settings are supported by health professionals with an interest in palliative and EoL care and may not be able to access essential palliative medicines.(5) High income countries rely on a specialist and generalist model of delivery of palliative care. In the UK, generalist palliative care, provided by General Practioners (GP's) and Community nurses (also known as District Nurses) working in peoples' residences and care homes support EoL care for the majority of the population.(8) Specialist palliative care provision varies across the UK, but includes hospice services, hospital palliative care teams and community palliative care. The critical resource components of EoL care in any setting include multidisciplinary EoL expertise (for instance physiotherapy, occupational therapy, doctors, nurses, health care assistants, spiritual care, social work support and psychologists), as well as availability and access to anticipatory medication, and the delivery systems of those medication (e.g. commonly syringe pumps in a UK setting). Despite increasing recognition of the importance of palliative care during the pandemic, (9) (10) (11) identifying the essential resource to continue the high quality, equitable delivery of such care has been overlooked in many national responses. Mathematical modelling allows estimation of required resource in the face of changing demand. It is common in infectious disease and acknowledged for its utility in planning and coordination for predicted surges in demand for healthcare resource, changing epidemiology of the disease and social responses to it. The model presented here was conceived to predict local EoL resource demand for the anticipated waves of COVID-19 death. It was developed in collaboration with clinicians, local health service funders (known as commissioners in the UK) and health providers and based on representative UK health data for a population of All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . Figure 1 shows an overview of the basic model structure. Patients enter the model at the point they need EoL care at home, in a care home or in hospital. The time between patients arriving into the model in each setting is randomly selected from an exponential probability distribution and can be set to increase or decrease over time to account for growth or decline in activity. An exponential distribution is commonly used to model time between independent events occurring, such as the arrival of people into a system. The model allows for the capture of non-COVID-19 patients, but we only simulated COVID-19 patient activity to predict excess resource need. We excluded two resources from our analysis -Hospital Nurse time (which is already incorporated in hospital planning) and GP time (as we were unable to (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . https://doi.org/10.1101/2020.07.23.20160564 doi: medRxiv preprint Patients are allocated a "bundle" of EoL care resources, each of which has a probability of being selected, and a duration for their EoL care, sampled from an exponential distribution. There are seven types of resource in the model: anticipatory medicine bundles, syringe pumps, community nurse time, hospital nurse time, health care assistant time for personal care, specialist palliative care time (for example local hospice support) and GP time. Anticipatory medicine bundles may include a combination of midazolam, morphine sulphate and an antiemetic, but these have deliberately not been specified since the bundle may vary per region and the significance is that the drugs are generally prescribed together for EoL care and therefore they have been treated as a bundle. Staff resources are specified in terms of the number of "visits" (physical or virtual) per day, the length of visits, and the resources needed per visit. Visit lengths are sampled randomly for each patient from a normal distribution, in which most values are assumed to be close to the mean. The necessary resources needed over time are recorded. The simulation can be run for a chosen length of time, and for a chosen number of runs. This is important when there is randomness in the model, to ensure that results aren't solely based on runs of "good" or "bad" luck in random number selection. The model calculates results over runs to maximise accuracy. To model the EoL care resource needs for Bristol, North Somerset and South Gloucestershire, we derived parameter values from a variety of local and national sources. Office for National Statistics data (16) (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . https://doi.org/10.1101/2020.07.23.20160564 doi: medRxiv preprint cases at home. We modelled a stable mean rate of activity based on the "peak" levels of activity observed at the time of writing. A study of 101 COVID-19 patients in London found that patients spent an average of 2 days under the palliative care team. (7) The local palliative care team estimated the community EoL care duration to be similar, at around 2 days for those in care homes, and 3 days for those at home. Table 1 shows an overview of the bundles of resource used in the model. For For patients in care homes, those in residential homes would typically require the highest level of EoL care resource because of the lack of internal nursing support. All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . https://doi.org/10.1101/2020.07.23.20160564 doi: medRxiv preprint Therefore, we used our three bundles of high, medium and low-level resource for care home patients to represent those in residential homes needing external support, those in nursing homes needing external support, and those in either nursing or residential homes who have very low level needs, respectively. In addition, we would expect to see more patients needing EoL care in nursing homes We ran the model for a simulated 28 days in each model run. The model was allowed to "warm up" for 5 days in each run first to account for the model starting from an empty state, and so results from the first 5 days in each run are excluded. The model was run 100 times, and average results taken across the batch of runs. All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . 95% of days are predicted to need no more than 16 bundles, but only 5% of days would need less than 5 bundles. All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . https://doi.org/10.1101/2020.07.23.20160564 doi: medRxiv preprint For syringe pumps, an average additional 9.35 pumps (0.11 SE) would be needed to be in use per day, with a predicted minimum and maximum of 1 and 20 pumps in use per day, respectively. 95% of days are predicted to need no more than 15 pumps in use, but only 5% of days would need less than 5 pumps in use. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. Based on the model analysis for additional COVID-19 EoL care need, specialist palliative care demand is predicted to increase by around 9 hours per day. This will necessitate different ways of working. 286 additional anticipatory medicine bundles or 'just in case' prescriptions predicted to be needed per month, due to COVID-19 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . https://doi.org/10.1101/2020.07.23.20160564 doi: medRxiv preprint EoL care, which in the UK context cannot be reused even if they are not used by the named patient, may risk specific drug shortages. Nine additional syringe pumps needing to be in use per day, at a cost of around £1742 each or £15,678 in total is also a significant added resource demand for EoL care for patients with COVID-19 in the community. Nine syringe pumps are also only the average in use in a 24 hour period and to ensure demand is met 95% of the time 15 would be required, at a total cost of £26,130. Comparison with the literature To our knowledge this is the first published model of EoL resource need during the COVID-19 pandemic worldwide. Understanding demand for resource to relieve serious health related suffering at the EoL is critical in providing essential solace to patients in knowing they are not abandoned, with care provided up to death and beyond for their families. Palliative care is important to mitigate the moral distress in health professionals who may be in the unenviable position of triaging patients to palliative care support where limited intensive care support may be available. (22) Palliative care is consistently shown to reduce symptom burden at the EoL and improve bereavement outcomes for families.(23, 24) Planning for the predicted surge in demand follows the Downar and Seccareccia pandemic plan(13) identifying 'stuff', such as ensuring sufficient anticipatory medication and syringe pumps (and subcutaneous butterflies) availability, and acknowledging the minimum specialist and generalist palliative care staff required to fufill our duty of care, alleviating serious health related suffering. In many countries, like the UK, EoL community data are challenging to obtain because the community setting crosses different health and social care partnerships, as well as third sector charitable organisations. It is hardly surprising, therefore, that the clear increased risk in terms of acquisition and survival from COVID-19 to those who live in care homes was recognized late, and appropriate allocation of resources was hindered in the UK. (25) Community driven carer injectable drug administration policies, (26) intended to provide symptom relief and access to medication even where there may be staff shortages is one solution introduced in this locality to address the predicted staff shortages. Rapid generation of national and local guidelines on topics such as advance care planning, communication in COVID-19, EoL symptom care and All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . bereavement support can and have been delivered remotely using digital solutions, demonstrating the large scale collaborative efforts through national and international organisations (27, 28) that are possible to upskill other health professionals and mitigate the capacity constraint of specialist palliative care. Anticipating the large increases in demand in anticipatory medication and syringe pumps has also contributed to innovative community solutions, such as altered prescribing behaviour to prevent drug shortages and a greater reliance on butterfly needles to administer subcutaneous injections. This model is a step change in planning for EoL care during the COVID-19 pandemic and provides detail for the stuff, staff, space and systems pandemic planning approach. It has been made freely available to enable modellers and health service funders to estimate need for EoL resource in different regions, countries and for different rates of disease and resource estimations for usual care. The model also highlights the gaps and opportunities for research in EoL care in the community. The work was undertaken collaboratively with health service funders, providers, clinicians and modellers to base assumptions in the reality of current practice during the pandemic. Some of the limitations of the model assumptions are limitations due to available data, rather than of the model per se. The rate of COVID-19 death in the community setting is based on the latest available figures at the time of the project, and where those for England were absent, the most geographically similar area available: Scotland, was inputted. While all deaths from COVID-19 are a tragedy, it has been postulated that between 5% and 15% of COVID-19 deaths may have occurred in people who would have died of other causes within the year.(29) However, even if this was the case and that all deaths from COVID-19 do not represent additional resource and only 85% extra is required, the increased demand of COVID-19 deaths has occurred acutely, rather than spread out over the longer time period of a year, and therefore the supply constraint is still very problematic. The model does not take into account excess mortality which has not been attributed directly to COVID-19. In other words, those deaths that have erroneously not been identified as COVID-19 due to absent testing, or deaths that have taken place because usual All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . https://doi.org/10.1101/2020.07.23.20160564 doi: medRxiv preprint care has been disrupted leading to delayed healthcare presentation, or interrupted local management of illness. When comparing the observed deaths in the UK for March and April with the expected number of deaths for the same period, based on the average deaths usually occurring in that time (over a 5 year period) it is clear that deaths due to COVID-19 are significantly increased, but deaths which are not being directly attributed to COVID-19 have also risen significantly.(3) While many of the non-COVID deaths may in reality be unconfirmed COVID-19 deaths, the flexibility of the model will allow more accurate resource estimations to provide for palliative and EoL care to be made with improved data over time and this will become the focus of further work. While we would have liked to have included the resource requirement for EoL care in the community for non-COVID-19 deaths and to compare current observed practice with expected practice based on historic evaluation, the resource data were too limited and in the first instance we have focused on the deaths from COVID-19. Similarly, inclusion of GP time is felt to be of high importance, but data on time spent by GPs on EoL care is limited and worthy of further research given the significant role they play in the care of those at the EoL in the community. Hospice inpatient services have also not been included in this analysis (although the model could easily accommodate their inclusion). This is because hospice was treated as a finite resource, which was not affected by the pandemic in that there are limited numbers of inpatient hospice beds. For instance, in our locality there are 25 inpatient beds and only one patient has been confirmed to have died with COVID-19 in a hospice setting. Increased community support via redeployment of hospice health professionals to telephone advice lines was accounted for in the analysis as a specialist palliative care resource. Personal protective equipment (PPE) has not been included in the model. Potential COVID-19 changes to the anticipatory care bundle, such as more carer administered drugs (e.g. lay carer administration of injectable medication or increased prescribing of non-injectable medication to mitigate staffing shortages) was not included in the analysis in order to model the care which most clearly mirrors that which is deemed optimal practice. Finally, we have not included "travel time" for community nurses and carers, therefore in more rural settings this will change estimates, which the model can accommodate. All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted July 24, 2020. . https://doi.org/10.1101/2020.07.23.20160564 doi: medRxiv preprint Models can be retrospectively validated and adapted once data of the impact matures. Our cultural bias towards health care heroics risks overlooking the essential contribution of palliative and EoL care to a pandemic. Armed with the structure to outline palliative care pandemic planning, (13) this study allows realistic modelling of the essential ingredients to prepare, plan and deliver a palliative care pandemic response tailored to local work patterns and resource. Without anticipating the resource constraints, equitable care is compromised. This pandemic is a reminder of the vital need for collaborative, flexible working and quality data collection to inform preparation and planning to prevent deaths with physical and psychosocial distress. Emphasising EoL care does not negate the importance of life-saving or even lifesustaining care, but acknowledges the moral imperative to provide care for everyone in a pandemic, even where a cure is not possible. All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder Excess deaths associated with COVID-19 2020 excess mortality: international comparisons: The Health Foundation Equity in the provision of palliative and end of life care. London School of Economics and Marie Curie Symptom Management, and Outcomes of 101 Patients With COVID-19 Referred for Hospital Palliative Care Generalist plus specialist palliative care--creating a more sustainable model The Role and Response of Palliative Care and Hospice Services in Epidemics and Pandemics: A Rapid Review to Inform Practice During the COVID-19 Pandemic Palliative care and the COVID-19 pandemic Associated Medical Services Inc. Educational Fellows in Care at the End of L. Palliating a pandemic: "all patients must be cared for No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity Discrete-Event Simulation: Modeling, Programming, and Analysis Discrete event simulation for Python Copyright SimPy Revision 2973dbe7 ONS. Number of provisional weekly deaths involving coronavirus COVID-19) in the UK 2020 LG Inform: Medical and care establishment: Other: Care home without nursing (percentage of population) in Bristol End-of-life care in nursing and care homes Triage months of life in patients with advanced disease: analysis of 5-year data from the national survey of bereaved people (VOICES) Special Report: In shielding its hospitals from COVID-19, Britain left many of the weakest exposed CARer-Administration of as-needed subcutaneous The CARiAD Package) EAPC. Coronavirus and the palliative care response 2020 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted None declared