Comfort in the last 2 weeks of life: relationship to accessing palliative care services

According to respondents, the use of SPCS was associated with higher levels of comfort during the last 2 weeks of life. This is the first study to assess the impact of SPCS on comfort in the last fortnight of life in a whole population using a random population survey method. Although the finding may seem intuitive, documenting this finding with the denominator as the community at large is new and crucial for service planning, contrasting with previous methodologies that have used mortality follow-back methods, contacted only caregivers known to a particular SPCS or employed secondary analyses to calculate “quality of death” scores [21, 36, 47, 51, 53‐55]. After death, surveys can collect information on a representative sample of deaths rather than on just people who are able and willing to talk about their experiences [2] as was used in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment [36].

It is an overwhelming concern that one in two respondents indicated that someone close to them was ‘uncomfortable’ or ‘very uncomfortable’ in the terminal stage of life irrespective of whether SPCS was used or not. The nature of this lack of comfort is being explored in subsequent surveys to determine if it relates to physical or emotional symptoms, or both. Such a level of discomfort demands an urgent response by all service providers.

Are these statistically significant results also significant in clinical practice and health service planning given the proximity of the lower confidence interval to one? People with more complex symptoms are more likely to be referred to SPCS [14]. These are the same people who, in this study as they enter the terminal phase of their care, are ultimately reported to be more comfortable than people whose complexity of needs has not triggered a referral to SPCS. The net benefit of SPCS in contributing to comfort is therefore under-estimated in the statistical results. The modest magnitude of benefit seen in this study should be considered as an addition to the already existing evidence base for people who have accessed SPCS [15, 17‐20, 24, 25]. The current study reflects only one time-limited facet of the overall contribution of SPCS to care—the terminal phase—and it is likely that the total benefit of accessing SPCS is the sum of benefits achieved by SPCS for patients, caregivers and health professionals over the entire period of contact.

Has perceived comfort differing across socio-economic strata been reported before? Although there are data that support differential access of SPCS by people from higher socio-economic strata [1, 3, 13, 23], this has not been linked to measured outcomes. The reason for such an association is not clear from the data currently available.

This current study employs a new method to explore the impact of SPCS at a whole population level on a question central to continued funding of SPCS—do services make a difference to comfort at the end of life? The sampling process employed by the Health Omnibus allows a truly representative sample with the denominator being the whole population. Rather than using SPCS staff to survey perceptions of care and comfort, the use of independent interviewers reduced the likelihood of a biased positive appraisal.

Another strength of the study is the analysis tool. Initial analyses revealed that the assumptions underlying the proportional odds model were not met for level of comfort; hence, the less restrictive stereotype model was chosen. Reflecting the basic premise originally proposed by Anderson for stereotype logistic regression, the more commonly used proportional odds logistic regression was inappropriate to use in this study as the levels of comfort were not grouping an underlying continuous variable [5]. By contrast, stereotype logistic model should be used in cases in which respondents must choose between a number of ordered responses especially in a situation in which a predictor may discriminate between some but not all of the outcome categories.

This study used the reports of proxies to investigate the impact of SPCS on comfort at the end of life. Proxy reports are frequently used in palliative care research due to the difficulties encountered in research engaging people with a life-limiting illness [2, 4, 11, 31, 33]. Studies have examined the accuracy of retrospective reports by proxies, comparing reports of patients prior to death with those of their relatives after death [4, 10, 22, 27, 31, 33]. In studies comparing concurrent prospective (pre-death) reports by patients and their relatives, family caregivers’ overall symptom distress scores have been highly correlated with patients’ overall scores [32, 35]. Families tend to rate symptoms more severely than patients [34, 37, 47] and under-report psychological distress [16, 34, 45]. Overall comfort is something that relatives can assess using several factors to reach their conclusions: levels of comfort stated by the patient [48, 50], behaviours, activity levels, analgesic use and facial expressions [40, 41]. All of these factors, potentially in a composite measure, should be included in future work seeking to understand levels of comfort at the end of life. Congruence between proxies and patients is greater for issues where there is an observable consequence [16], such as service utilisation, functional ability or preferred place of care [16, 22, 27, 31, 45]. Proxies living with patients have been found to have a higher level of agreement [39] but caregiver strain, unrealised expectations and poor caregiver coping may be associated with some incongruent reports [39, 42, 47] including reporting caregiver distress as patients’ physical pain [47].

The current study is an important reflection of the people’s perceptions of end-of-life care and is likely to relate to the deceased’s experience. By the terminal phase of a life-limiting illness, individuals are often too unwell to participate even in initiatives designed to improve the quality of care. In this setting, proxies become an invaluable source of information about the quality and outcomes of the care given. Even if there are limitations in proxy reporting, family members’ own perceptions demand attention [36]. Perspectives from all involved parties (patients, family, caregivers, clinical staff) should be sought in evaluating end-of-life care [33].

Counter-intuitively, even patients may not be “gold standard” reporters of discomfort as they may downplay or emphasise certain symptoms, not want to complain or seek to provide the answers they think are expected [2, 35, 39]. The “gold standard” of comfort is an amalgam from a number of key sources including patients and people close to them.

The timing of the interview and the way that questions are framed may have an impact on a bereaved person’s proxy response about the deceased [39]. Concerns have been raised about the validity of retrospective proxy reports because respondents may be affected by grief or difficulties in recall. Many factors may influence the response to the question about the comfort of someone close who died including recall biases, positive reappraisal as a coping strategy and the net emotional effects of grief which may, at the time of answering, be positive or negative. The current study deliberately covers a large population and a 5-year period to account for some of the variations that may be encountered over time in reporting the comfort level of the deceased. To ensure that the net impact of time since death is taken into account when evaluating comfort in the last 2 weeks of life, time since death was included as a variable in the multi-factor analysis.

It is likely that certain groups including people whose first language was not English were under-represented in the raw data. Lower participation rates from identifiable sub-populations within the community are dealt with by using population-standardised weightings for all analyses. The study design meant that individuals in remote locations and patients without caregivers could not have their experiences reflected in the data.

Nearly a third of respondents who had experienced a death within 5 years reported the bereavement occurred within the last 12 months. In a population survey of this nature, deaths theoretically should be evenly distributed in each of the years across the 5-year period. This apparent anomaly may be due to recall error given that life-changing or highly emotional life events may feel more recent than they actually were [2, 11].

This report deals with responses from a single state, in a health system that has relatively high rates of access to SPCS. The models of care and care offered differ in health settings around the world and may therefore limit generalisability to health systems that are markedly different.

Future research in this area needs to validate these findings in different health systems. Rather than face-to-face interviews, computer-assisted telephone techniques could be used at a population level to replicate this study in other health systems. Given the annual nature of the Health Omnibus, the questions used in 2004 have been modified to allow assessment of physical comfort and distress separately in subsequent surveys [29, 46]. Further research is also required to better understand the factors that influence proxy reports during bereavement. In any prospective research on comfort at the end of life, patient, caregiver and staff input will be required. Definitions of comfort (physical, emotional, social) will need to be explored.