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Age and Ageing Advance Access originally published online on June 3, 2006
Age and Ageing 2006 35(5):469-476; doi:10.1093/ageing/afl001
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© The Author 2006. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Systematic Review

The effect of age on referral to and use of specialist palliative care services in adult cancer patients: a systematic review

Jenni Burt and Rosalind Raine

Department of Epidemiology and Public Health, University College London, 1–19 Torrington Place, London WC1E 6BT, UK

Address correspondence to: J. Burt. Fax: (+44) 020 7813 0280. Email: jenni.burt{at}ucl.ac.uk


   Abstract
Top
 Abstract
Introduction
 Review methods
 Results
 Discussion
 Funding
 Key points
 Conflicts of interest
 Ethical approval
 References
 
Objective: to investigate variations in the use of specialist palliative care (SPC) services for adult cancer patients, in relation to age.

Design: systematic review of studies examining use of or referral to SPC services in adult cancer patients.

Search strategy and selection criteria: six electronic databases (Medline, Embase, Web of Science, HMIC, SIGLE and AgeInfo) were searched for studies published between 1966 and March 2005, and references in the articles identified were also examined. Inclusion criteria were all studies which provided data on age in relation to use of or referral to SPC. Two reviewers independently selected studies, extracted data and assessed methodological quality according to defined criteria.

Main outcome measures: use of or referral to SPC services, determined from all sources of report (patient, informal carer, health care professional, health care records).

Results: 14 studies were identified. All reported a statistically significant lower use of SPC among older cancer patients (65 and above or older) at a univariate level [crude odds ratios ranged from 0.33 (0.15–0.72) to 0.82 (0.80–0.82)]. However, there were important methodological weaknesses in all of the studies identified; most crucially, studies failed to consider variations in use in relation to need for SPC.

Conclusions: there is some evidence that older people are less likely to be referred to, or to use, SPC. These findings require confirmation in studies using prospectively collected data which control for patient’s need for SPC.

Keywords: palliative care, utilisation, age factors, review, systematic review, elderly, cancer, oncology


   Introduction
Top
 Abstract
 Introduction
Review methods
 Results
 Discussion
 Funding
 Key points
 Conflicts of interest
 Ethical approval
 References
 
As populations age and disease patterns change, the need for access to high quality palliative care at the end of life is becoming of increasing public health concern [1]. For the growing numbers of older people with advanced, progressive illnesses, poor access to effective symptom control and psychosocial support as they near the end of life can lead to an increased risk of hospital admission and death in hospital [2]. Older people frequently present with complex needs as a result of co-morbidities, social isolation, frail older care-givers, and economic hardship. They may respond well to the expertise offered by specialist palliative care (SPC) providers across all settings [2]. However, recent UK policy documents including the NHS Cancer Plan and the National Service Framework for Older People report that older people have poorer access to palliative care compared with younger people [3, 4].

The debate about the appropriateness of rationing health care provision by age has been fuelled recently by a National Institute for Clinical Excellence (NICE) consultation document on social value judgements, which concluded that ‘where age is an indicator of benefit or risk, age discrimination is appropriate’ [5]. The concept of a ‘fair innings’ has also been used to justify the prioritisation of health care resources to younger people [6]. However, these arguments refer to health care aimed at prolonging life, and are not applicable to palliative care, an intervention which improves the quality rather than the length of life [7].

Two previous reviews have investigated variations in access to SPC [8, 9]. On the basis of seven studies published between 1997 and 2003, Ahmed et al. concluded that there was some evidence that patients aged 65 and over have a reduced likelihood of referral to SPC [8]. Grande et al. reviewed 14 studies and found that older patients were less likely to receive home SPC [9]. However, neither review quantified the difference in use by younger and older patients to enable estimation of the scale of the problem. In addition, neither review applied a quality assessment to the included studies, which limits the confidence that can be placed in the conclusions.

This review is the first to critically appraise published quantitative research on the effect of age on referral to and use of SPC for patients with cancer, and to quantify the impact of age on use. Cancer patients were chosen because they represent 95% of SPC users in the UK [10].


   Review methods
Top
 Abstract
 Introduction
 Review methods
Results
 Discussion
 Funding
 Key points
 Conflicts of interest
 Ethical approval
 References
 
Search strategy and selection criteria
We searched Medline, Embase, Web of Science, HMIC, SIGLE and AgeInfo from 1966 to March 2005 for all studies which included quantitative data on referral to and/or use of SPC by adult cancer patients (at any site and stage of disease), across all clinical settings. Settings included in-patient care in a designated palliative care unit (e.g. hospice), day care in a designated palliative care unit, home care received from an SPC team and hospital care received from an SPC team. Studies of care not provided by a dedicated SPC team, including generalist palliative care provided by, for example, family doctors and palliative radiotherapy, were excluded. Retrospective or prospective cohort studies, case-control studies and cross-sectional surveys were eligible for inclusion if they provided data on and included age within their analysis, even if age was not their primary predictor variable. All sources of report of referral or use (patient, informal carer, health care professional, health care records) were eligible for inclusion. There were no restrictions on the country of research, but the language of publication was restricted to English.

A combination of text words and thesaurus terms were used for two major search concepts and their synonyms—referral/use and specialist palliative care (Appendix 1 for full strategy, available online at www.ageing.oxfordjournals.org). The search strategy was developed in Medline and then adapted for other databases. Bibliographies of full-text articles identified through database searching and included in the review were scrutinised for further relevant studies. The lists of titles, abstracts and then full texts were scrutinised independently by two reviewers (JB and RR) to determine whether they met the inclusion criteria.

Data extraction, appraisal and synthesis
Extraction of data from each paper was performed by one reviewer (JB) and checked by a second (RR). Discrepancies were resolved by referral to the original studies. A checklist was used to extract data on the methods (including design, completeness of outcome ascertainment, analysis); size of study; study population (region, subjects and inclusion/exclusion criteria); outcomes of interest; and proportions of users/non-users by age. Components for quality assessment were adapted from the methodology checklists developed by the Scottish Intercollegiate Guidelines Network (SIGN) and used by organisations including the NICE [11]. These series of questions, published for study designs including cohort and case-control studies, guide assessment of the internal validity of a study. Each study-design specific checklist covers details on the selection of subjects, the assessment of outcome, confounding, and statistical analysis. Criteria are answered on a scale from ‘Not reported’ to ‘Well covered’, and an overall assessment of the study is then made based on how many of the criteria are met. Cross-sectional studies were appraised using a modified version of the cohort study checklist.

Because of the diverse nature of the included study populations and of the outcomes, statistical synthesis of study findings was inappropriate. Where data allowed, crude odds ratios and 95% confidence intervals for the use of SPC in older versus younger cancer patients were calculated. We used an age cut-off of over and under 75 where original age categories allowed. Extracted data are presented in tabular form and a narrative synthesis conducted.


   Results
Top
 Abstract
 Introduction
 Review methods
 Results
Discussion
 Funding
 Key points
 Conflicts of interest
 Ethical approval
 References
 
Description of studies
Of 2,652 citations initially identified, 14 articles (which related to 13 studies) met the inclusion criteria [12–25] (Figure 1).


Figure 1
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  		Figure 1.. Flowchart of literature search and study selection.

 

Nine of the thirteen studies were retrospective cohort studies which used administrative data and ranged in size from 521 [18] to 170,136 participants [23]. Two studies were cross-sectional surveys using retrospective reports of service use from proxy respondents (usually carers). They included 96 [24] and 2,074 [12, 13] participants respectively. One study used a retrospective case-control design [17] and one was a retrospective review of a palliative care service records, with comparisons to the wider population of cancer deaths [16]. Studies covered deaths occurring from 1979 to 1999. Two studies restricted participants to patients aged 65 years and above at death, and one to 67 years and above; the remaining restricted participants to adults, or had no stated age restrictions (Table 1).


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  		Table 1.. Characteristics and quality appraisal of studies

 

Four articles focused specifically on the receipt of SPC at home [13, 15, 17, 24]. The remaining included one or more services providing SPC across a range of settings (e.g. home, hospital and hospice). Studies based their outcome ascertainment on records kept or provided by the SPC service of interest, except the two surveys of proxy respondents, which relied on participant’s reports of the deceased’s use of services.

Use of specialist palliative care in relation to age
All of the studies reported a statistically significant lower use of SPC among older cancer patients at a univariate level. Crude odds ratios for the use of SPC in older versus younger cancer patients ranged from 0.37 (0.23–0.60) to 0.82 (0.80–0.84) (Table 2).


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  		Table 2.. Estimates of use of SPC by age group

 

Eight studies included a multivariate regression analysis to investigate the effect of age on referral to or use of SPC, after controlling for potential confounding factors [12–14, 17, 19–21, 23]. Of these, six reported older adults were significantly less likely to use SPC services [12–14, 19–21]. However, age group cut-offs and variables included in regression models varied between studies, making direct comparison between them difficult. In Grande et al. (2002) case control study, the effect of age disappeared after controlling for other variables, including use of cancer and district nursing services [17]. As the author’s acknowledged, if age is related to use of other health care services, its relationship with hospice use may have been disguised in their analysis. The final study reported that, following multiple regression analysis, the effect of age (as a continuous variable) on the use of hospice care increased over the period of their study, 1991–1999 [23].


   Discussion
Top
 Abstract
 Introduction
 Review methods
 Results
 Discussion
Funding
 Key points
 Conflicts of interest
 Ethical approval
 References
 
Our findings suggest that patients’ age may be an influential factor in use of or referral to SPC, with older patients less likely to receive these services than younger patients. However, important weaknesses in the studies reviewed limit the certainty of the findings.

Crucially, these studies did not explicitly explore the issue of inequality versus inequity of use. Inequality and inequity are related, but not equivalent, concepts. Inequities in the use of health care are inequalities (differences) in use which are considered to be unfair or unjust [26]. The judgement as to what is unfair or unjust is usually based on consideration of the need for health care and the extent to which health care inequalities are avoidable. An equitable health care system is one in which there is equal use of health care for equal need. Therefore, the measurement of need is fundamental to studies of the fair use of health care [27]. This concept of fairness, rather than simply of equality, is widely recognised when the distribution of NHS care is considered. For example, standard one of the National Service Framework (NSF) for Older People states that ‘NHS services will be provided, regardless of age, on the basis of clinical need alone’ [4]. SPC is designed to meet only the most complex or persistent needs of cancer patients—and therefore not all patients require this care [28].

Unequal use of health care between particular population groups is not inequitable if it reflects an unequal need for care. These findings may therefore reflect a reduced need for SPC amongst older people. It is not yet clear whether this is indeed the case, for two reasons. First, although it has been agreed that SPC should be reserved for those with ‘complex and persistent’ needs, there has been little examination on how this definition of need should be operationalised, resulting in a lack of agreement between medical and nursing staff as to which hospital inpatients require such care [29]. Second, the evidence on variations in the need for care by age, based upon the presence and impact of symptoms, is limited and conflicting. For example, one post-bereavement survey of carers found that patients over 85 years had a greater number of symptoms than patient under 65, but symptoms in the older group were less likely to be ‘very distressing’ [30]. By contrast, a secondary analysis of a retrospective survey of cancer patient carers suggested that both the number of symptoms and the proportion perceived to be ‘very distressing’ declined with age, whilst the level of functional dependency did not vary [31].

It is argued that the need for SPC should be determined by social, emotional and spiritual concerns as well as by health status [1]. Across a life span, patients’ health, social and economic status (including the presence of dependent children or partners, the likelihood of living alone and employment status) fluctuates. It is therefore possible that the need for SPC will vary with age. However, in the absence of explicit definitions of the needs that can be addressed by SPC, it is not possible to explore the extent to which they differ with age. Only one of the studies included in this review attempted to define patients’ need for SPC, and this was limited to a consideration of symptoms [12, 3].

An alternative explanation for lower use of SPC by older patients is that their needs are being met elsewhere. Perhaps health or social care services ‘fill the gap’ for older cancer patients. It may be that a palliative care approach is used by generalist or care of the elderly services and that these meet the needs of older cancer patients [28]. The high proportion of older cancer patients dying in care homes may also reflect another effective approach to meeting the needs of these patients [32]. However, until a greater understanding of need is developed, it is difficult to judge how far SPC needs are met by alternative care sources.

Some further limitations of the studies included in this review should be pointed out. First, four studies gave an inadequate description of SPC services that were included, their setting and the care offered, limiting their generalisability [14, 20, 22, 23]. Second, the quality of the outcomes data was often poor. All the studies were based on retrospective investigations of service use, relying on routine administrative data or recall of service use by proxy respondents. It is understandable why such data sources are used in preference to prospectively collected data from patients themselves. In this field, prospective data collection is challenging, because of the terminal nature of illness and risk of loss of data because of participants’ incapacity or death. However, the limitations of retrospective methods should be recognised. For example, referral to or use of SPC has been shown to be inconsistently recorded in patient records [33]; the validity of responses about service use and subjective symptoms from proxies such as carers is uncertain [34]; and questions asked of proxy respondents to determine use of SPC are often insufficiently comprehensive [24]. The sensitive nature of terminal illness research should not exclude the use of prospective studies. Instead, discerning methods of data collection should be designed, which may include, for example, flexibility in data collection intervals and settings. If retrospective methods continue to be used, validation methods should ascertain the accuracy of their outcomes data. These could include prospective investigation of the completeness and accuracy of medical records, or cross-validation of respondent reports with data from SPC services.

Implications
This review highlights the requirement to investigate the use of SPC in relation to the need for such care in order to understand whether the objectives of the NHS Cancer Plan and the NSF for Older People are being fulfilled in line with the principles of the NHS. Sensitive and flexible prospective methods should be developed to examine the extent to which the use of SPC is fair. This review also highlights wider issues about how need for SPC may be defined. Although this paper is restricted to cancer patients, the ongoing debate about SPC for non-cancer patients may present an opportunity to focus on and clarify what SPC actually is and offers, and who has a need for such care.


   Funding
Top
 Abstract
 Introduction
 Review methods
 Results
 Discussion
 Funding
Key points
 Conflicts of interest
 Ethical approval
 References
 
This study was supported by Medical Research Council Special Training Fellowship in Health Services Research.


   Key points
Top
 Abstract
 Introduction
 Review methods
 Results
 Discussion
 Funding
 Key points
Conflicts of interest
 Ethical approval
 References
 

  • This is the first systematic review to explicitly quantify reported differences in use of SPC between older and younger cancer patients.
  • There is some evidence that older cancer patients are less likely to be referred to or to use SPC services than younger patients.
  • However, there were important methodological weaknesses in all of the studies identified; most crucially, studies failed to consider variations in use in relation to need for SPC.


   Conflicts of interest
Top
 Abstract
 Introduction
 Review methods
 Results
 Discussion
 Funding
 Key points
 Conflicts of interest
Ethical approval
 References
 
None declared.


   Ethical approval
Top
 Abstract
 Introduction
 Review methods
 Results
 Discussion
 Funding
 Key points
 Conflicts of interest
 Ethical approval
References
 
Not required.


   References
Top
 Abstract
 Introduction
 Review methods
 Results
 Discussion
 Funding
 Key points
 Conflicts of interest
 Ethical approval
 References
 

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Received November 1, 2005; accepted in revised form February 2, 2006.


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