Summary
The majority of people with advanced cancer used unscheduled care in their last year of life, with attendances occurring predominantly in the last weeks of life. People who used unscheduled care were much more likely to use GPOOH than A&E. One in four people who used unscheduled care attended ≥5 times (frequent users) and one in 20 attended ≥10 (very frequent users). Attendances increased dramatically close to date of death, with 60.3% occurring in the last 12 weeks of life and 19.7% in the last 4 weeks. Rurality was the only demographic factor to be consistently associated with unscheduled care use, with people living in rural areas less likely to attend any unscheduled care. Pain, breathlessness, infections, and GI symptoms were the commonest specific coded reasons for people presenting to unscheduled care.
Strengths and limitations
To the authors’ knowledge this is the first time that a cohort study has been used to examine UK unscheduled care use by people with cancer in both A&E and GPOOH. Using population data, compared with previous studies examining unscheduled care attenders, gives a more comprehensive and accurate picture of unscheduled care use.
The demographic and cancer diagnosis data were >98.5% complete; however, clinical coding of reason for attendance was more variable, with 20.2% missing in GPOOH and a similar proportion of A&E coding being non-specific (‘unwell’).
Comparison with existing literature
Frequency of use of unscheduled care
This study suggests that people who die from cancer use unscheduled care significantly more than has been previously reported. Current literature examining unscheduled care has suggested that approximately 30–35% of people with cancer use unscheduled care services.3,16,17 However, these estimates4,16–28 are often limited in terms of scope and applicability because they are not based on the population of people with cancer, but typically only examine people attending A&E whose attendance is coded as being for cancer. They therefore cannot accurately examine unscheduled care use in the whole population because they cannot observe those people who do not present to unscheduled care, or those where their presentation is not specifically coded as ‘cancer’ but who may be there for cancer-related reasons.
There was a wide range in the number of presentations per person to unscheduled care in the last year of life, particularly to GPOOH. Importantly, frequent users and very frequent users were 21.0% of the total cohort population, yet accounted for over half (n = 3990, 57.7%) of the cohort’s 6914 attendances with unscheduled care.
Clinical reasons for unscheduled care use
Pain was the single commonest presenting complaint in both GPOOH and A&E, representing one-third of A&E attendances, and 1 in 10 presentations to GPOOH. While still substantial, this figure may under-represent the true effect of pain, as pain is likely to have featured in a significant proportion of GPOOH attendances coded as ‘palliative care’ (only a single clinical code could be applied at each attendance). Breathlessness, infections, and GI symptoms were also common reasons for presenting to GPOOH or A&E. These results are consistent with the findings of other studies, which found that pain,4,16,18–25 breathlessness,19,21–24,26 and gastrointestinal symptoms19,21–24,26 are the commonest reasons for unscheduled care use.
Patient characteristics and unscheduled care use
Previous studies have reported that unscheduled care use is more common in older adults with cancer,17,18 but this study found no strong evidence of an association with age. This is possibly because previous studies only examined attenders at A&E or GPOOH, whereas this study examined a cohort of people who died from cancer, or because previous studies looked at larger, for example, 10-year effect, sizes, rather than effect per year. A possible explanation is that age is not associated with unscheduled care use in people with cancer who are dying, but is in the wider population because older people are more likely to die from their cancer. Previous studies based on people with cancer attending A&E found that more A&E attenders with cancer are males than females,16–18,29,30 whereas this cohort study found no significant association between sex and A&E use but did determine that females are more likely than males to use GPOOH.
Past research has suggested that people with lung cancer are more likely to use unscheduled care.16–18,21,27 These studies focus on attendance-level rather than population-level data, and often incorrectly infer from the fact that people with cancer who attend unscheduled care are most likely to have lung cancer, that people with lung cancer are more likely to attend unscheduled care than those without other cancers. They also tend to focus solely on A&E and ignore GPOOH. Although this study did find that the plurality of attendances in GPOOH and A&E were by people with lung cancer, and that people with lung cancer were more likely to attend A&E than those with upper GI, bowel, and breast and ovarian cancers, this was not true of other cancer types. Moreover, people with lung cancer were not more likely to use GPOOH, or unscheduled care overall, than those with other cancers.
The present study demonstrates that people in rural areas use unscheduled care less than people in urban areas; previous research in this area suggests otherwise,17 but is largely based on A&E use in non-UK populations.
Earlier studies indicate that people living in deprived areas are more likely to use unscheduled care;18,19 this study supports this finding for A&E attendance but not for GPOOH or unscheduled care as a whole. These differences underscore the importance of not applying A&E-specific findings to unscheduled care as a whole, and on not conflating attendance-level data with population-level behaviour.
Implications for research and practice
This analysis finds that the extent of unscheduled care use by people who die from cancer is significantly greater than previously estimated, and that the majority of this care is delivered in GPOOH. This implies that unscheduled care use is a larger issue and more worthy of consideration and attention than previously thought, and that GPOOH should be at the forefront of service planning, design, and delivery for any unscheduled care interventions or policies.
There were significant variations between GPOOH use and A&E use, which underscores the importance of using GPOOH data for policies and service delivery relating to GPOOH, rather than assuming A&E data to be universally applicable to all unscheduled care. Over one-third of all unscheduled care attendances are due to pain and other palliative symptoms. Targeted interventions to improve symptom control and management could reduce unscheduled care use, minimise distress, and provide timely relief without the delays inherent in attending unscheduled care.
The clustering of unscheduled care attendances in the last weeks of life, and dramatic increase just before death, suggests that clinicians could use unscheduled care attendance as a predictor for imminence of death in people who die from cancer, and that such attendance should trigger clinicians to review patients’ palliative care needs, including symptom control and anticipatory care planning. This could be useful for both providers of unscheduled care, who may feel more enabled to suggest a care review by the regular medical provider, and by the regular medical provider, who, on becoming aware of unscheduled care use, may wish to review the patients themselves.
A relatively small number of people account for over half of all unscheduled care consultations; focusing support on these people may have a significant impact on improving overall care and reduce unscheduled care use. Using unscheduled care attendance, particularly frequent attendance, as a proxy for unmet palliative care needs would allow clinicians to target support to these people in order to improve symptom control, enhance community care, and optimise information sharing between primary, secondary, and unscheduled care services.
Interventions targeted at improving anticipatory care planning, improving community support, and streamlining care pathways may help ensure that unscheduled care attendances only occur when they are appropriate and unavoidable.
This paper did not examine variation by GP practice, which could influence unscheduled care attendance, and would demonstrate the effect of in-hours care. Future research could focus on this. Also, different cancer types influence the nature and severity of presenting complaints, and therefore affect the urgency of care required, and the choice between A&E and GPOOH, but, because the authors are unable to confirm this with the data available, more research is also required on this.
