Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care

In 2008 the number of Australians who died totalled 143 900, and this annual total will increase as the population grows.1 At least half of these people died of conditions from which their deaths were clinically expected and where a palliative-care approach was warranted.2 Yet, surprisingly, little is known about where seriously ill Australians spend their last months of life. Hospital use before death has received little attention,3 and what is known has been motivated by concern about inpatient costs.3,4 In contrast, international perspectives provide some insight, particularly those that note an exponential increase in hospitalisations in the last months or weeks of life.5-7 A recent Canadian study used linked health care data from administrative sources to show that emergency department (ED) use by people dying of cancer may be avoidable in some circumstances.8

Inappropriate use of EDs, as well as numerous or long hospital stays, may be indicative of limitations in community services for some people.7 One study identified a number of potential indicators of poor quality end-of-life cancer care: starting new cancer therapies or continuing ongoing treatments very near death; a high number of ED visits, inpatient hospital admissions, or days in an intensive care unit near the end of life; and a high proportion of patients never enrolled in palliative care services, only admitted in the last few days of life, or dying in an acute-care setting.9 A more recent systematic review based on organisational, patient and family perspectives has endorsed the importance of these indicators.10

“Quality of death” can be enhanced by improving the standards of end-of-life care. This includes providing services to enable people to be cared for and die in the home if that is their wish.11 For this study, we chose a cohort of people who died from conditions considered amenable to palliative care, and contrasted hospital use for those who had cancer and conditions other than cancer. By charting the incidence of hospital and ED use by this cohort over the last 365 days of life, we aimed to estimate the proportion of people with such conditions in relation to their place of care on any given day in their last year of life.

We performed a retrospective cross-sectional study of hospitalisations of people in a cohort identified systematically through death registrations.

Our cohort comprised people who died in Western Australia between 1 August 2005 and 30 June 2006, had an informal primary carer at the time of death, did not reside in a residential aged care facility, and died of one of 10 conditions identified from the underlying cause(s) of death on the death registrations. Cause of death was established for people for whom the primary diagnosis recorded on the death certificate was a condition considered amenable to palliative care. This included cancer, chronic heart failure, chronic renal failure, chronic liver failure, chronic obstructive pulmonary disease, Alzheimer’s disease, Parkinson’s disease, motor neurone disease/amyotrophic lateral sclerosis, HIV/AIDS and Huntington’s disease.12 Underlying causes of death were grouped according to International Classification of Diseases, 10th revision, Australian modification (ICD-10-AM) codes.

Hospital morbidity administrative data for all admissions and separations, including ED presentations, were linked to death registrations using the Western Australian Data Linkage System. We included planned or unplanned hospital admissions in which the patient stayed at least overnight.

In this study, a novel use of death registrations enabled us to identify people who died of conditions from which their deaths were clinically expected and where a palliative-care approach would have been warranted. Linking these deaths to hospital morbidity data provided an insight into inpatient and ED use during the last year of life and at the time of death for these people. Change points mark an exponential rise in hospital use at the end of life and can be used in health service and policy planning.

The data provide a crucial baseline for modelling ways in which care at the end of life can be modified. Total number of bed-days, length of stay for individual admissions and total number of admissions per person are interrelated. Any decrease in any of these will relieve pressure on the hospital system. The number of admissions is of particular importance, given that much of the cost in health care is borne in the initial clinical assessment at the time of admission.14 Reduction in the number of short admissions is likely to have a long-term impact on health resource utilisation.

Differences in the course of different diseases, in part, help to explain the period of time towards the end of life when the increase in the prevalence of hospital admission occurs. People with cancer, on average, do not have as many admissions to hospital as those without cancer. However, the change point at which the proportion of hospital admissions increases is closer to death for those with cancer. The physical debility of people with cancer appears to have a much more precipitous drop, and patients’ families and community services have often not prepared adequately for this eventuality.15,16 Without building extensive support networks over time, care may, by default, move to acute-care hospital inpatient beds.

Our study illustrates the dual use of EDs for people for whom death is clinically expected, with a third of ED presentations for such patients not resulting in them subsequently being admitted to hospital. Many presentations among this group of patients are undoubtedly warranted, but it is questionable whether EDs should also be expected to be a substitute for around-the-clock community care. Distinguishing between “emergencies” and service substitution is complex, given that emergencies in this setting have a subjective component and community care may not always be available. Insufficient attention to appropriate community care for people whose deaths are clinically expected will lead to increasing numbers of ED presentations in the future.

A limitation of our study is that the cohort chosen was not representative of the whole population. To enable us to identify those whose deaths were clinically expected, the study was limited to those who had died of one of 10 conditions identified from the underlying cause(s) of death on the death registrations. Each cohort member had a primary family carer who had participated in a survey, and the cohort had a larger proportion of women than men. The presence of a carer may also have influenced decisions about whether or not patients attended hospitals. Nevertheless, despite our cohort not being representative of the general population, our data enabled a highly relevant and informative analysis of hospital use.

We intentionally excluded those who lived in a residential aged care facility before death from the study. There is a decrease in the use of hospital beds among older people compared with those of younger ages in the last year of life, which has been partially explained by the threshold for hospital admission being higher for those receiving care in aged care facilities.4 The long-term care sector is likely to absorb some of the economic burden from the hospital sector but only for those residing in residential aged care facilities.

In future this study could be repeated, not just for those living in the community and who have primary family carers, but for all people dying of a condition potentially amenable to palliative care, including those residing in aged care facilities. Further research needs to be conducted to help uncover the difference between emergencies that could have been foreseen, those that could have been adequately dealt with by primary care if available around the clock, and those that required the expertise and resources of prehospital and hospital emergency services. How primary, community and palliative care services may be used to alleviate inappropriate use of inpatient and ED services should be examined systematically over time.

Our study confirms that there is extensive use of inpatient services and EDs in the last year of life by people whose deaths are clinically expected. Clinical contact for this group should include early referral to appropriate community and allied health services, contingency planning, and discussion about potential symptom problems within the context of social and environmental circumstances. This requires an intimate knowledge of the trajectory of each disease, comorbid conditions and the social circumstances in which that care is being provided.

Given the potential for inappropriate use of hospitals for people whose deaths are clinically expected, more careful consideration must be given to service design and delivery for this group of vulnerable people. The heavy reliance on the acute-care system does not necessarily reflect the most appropriate use of resources for patients at the end of life. Planning should cover a continuum of care, and should involve the patients and their families together with their general practitioners.

2 Change points for hospitalisation in the last 365 days of life (excluding emergency department presentations) for decedents with cancer and non-cancer diagnoses

* Proportion of decedents admitted to hospital on any one day of their last year of life.