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Cover of Evidence review: Timing of referral to palliative care services

Evidence review: Timing of referral to palliative care services

End of life care for adults: service delivery

Evidence review B

NICE Guideline, No. 142

.

London: National Institute for Health and Care Excellence (NICE); .
ISBN-13: 978-1-4731-3560-4

1. Early versus late referral to (or provision of) palliative care services

1.1. Review question: What is the best timing of referral to (or provision of) palliative care services in people thought to be entering their last year of life?

1.2. Introduction

Potential benefits from earlier referral to palliative care have been described, at least for people with metastatic cancer, and include better symptom management and longer survival. However, the specification of supportive and palliative care services varies widely, and the elements of care provided to intervention and control groups in studies are not described. The definition of early or late referral also varies. Some people are referred whilst still receiving disease-modifying treatment, others when a decision has been taken to discontinue such treatment. The time period for people to be referred may be between the last 6 months to a year of life, to only a few weeks.

For diseases or conditions with trajectories that are hard to predict, for example heart failure and COPD, or conditions where recovery from treatment is unlikely but still possible, it is difficult to define the criteria for early or late referral and to compare the effect of one timing against the other. Some conditions, such as some neurological diseases including dementia, may deprive a person of the ability to express their wishes regarding palliative care and, for them, it may be prudent to initiate discussions earlier after diagnosis.

1.3. PICO table

For full details see the review protocol in Appendix A.

Table 1. PICO characteristics of review question.

Table 1

PICO characteristics of review question.

1.4. Clinical evidence

1.4.1. Included studies

A search was conducted for randomised trials and non-randomised comparative studies on the effect of timing of referral to (or provision of) palliative care services in people thought to be entering their last year of life.

Five studies were included in the review;3 ,7 ,35 ,64 ,68 these are summarised below.

Evidence from these studies is summarised in the clinical evidence summary below (Table 4). See also the study selection flow chart in Appendix B, study evidence tables in Appendix D, forest plots in Appendix E, GRADE tables in Appendix F and excluded studies list in Appendix G.

1.4.2. Summary of clinical studies included in the evidence review

Table 2. Summary of studies included in the evidence review.

Table 2

Summary of studies included in the evidence review.

1.4.3. Quality assessment of clinical studies included in the evidence review

Table 3. Early versus Late Referral: data unsuitable for meta-analysis.

Table 3

Early versus Late Referral: data unsuitable for meta-analysis.

Table 4. Clinical evidence summary: Early (> 3 months between first palliative care consultation and death) versus late (< 3 months between first palliative care consultation and death) referral to palliative care services.

Table 4

Clinical evidence summary: Early (> 3 months between first palliative care consultation and death) versus late (< 3 months between first palliative care consultation and death) referral to palliative care services.

Table 5. Clinical evidence summary: Early (< 30 days between diagnosis and referral) versus late (> 3 months between diagnosis and referral) referral to palliative care services.

Table 5

Clinical evidence summary: Early (< 30 days between diagnosis and referral) versus late (> 3 months between diagnosis and referral) referral to palliative care services.

Table 6. Clinical evidence summary: Early (> 6 months between first palliative care consultation and death) versus late (< 6 months between first palliative care consultation and death) referral to palliative care services.

Table 6

Clinical evidence summary: Early (> 6 months between first palliative care consultation and death) versus late (< 6 months between first palliative care consultation and death) referral to palliative care services.

Table 7. Clinical evidence summary: Early (palliative care provided >30 days before death) versus late (palliative care provided <30 days before death).

Table 7

Clinical evidence summary: Early (palliative care provided >30 days before death) versus late (palliative care provided <30 days before death).

See Appendix F for full GRADE tables.

1.5. Economic evidence

1.5.1. Included studies

No relevant health economic studies were identified.

1.5.2. Excluded studies

No health economic studies that were relevant to this question were excluded due to assessment of limited applicability or methodological limitations.

See also the health economic study selection flow chart in Appendix C.

1.5.3. Unit costs

Table 8 and Table 9 provide some unit costs for specialist and generalist palliative that were presented to the guideline committee to help them consider the cost effectiveness of early versus later referral to palliative care services. Table 8 provides national average unit costs of specialist palliative care services in hospital and in the community where unit costs were available. Table 9 provides the unit costs of staff time for people who might provide general palliative care in a hospital and in a community setting. The cost of patient contact as opposed to per working hour has been reported where available. Once a person has been referred to receive palliative care services, the frequency of the services they receive will be very specific to the individual and their circumstances; therefore it was not possible to determine the cost of generalist or specialist palliative care over a specified time interval, for example one week or one month.

Table 8. Unit costs for NHS Specialist Palliative Care Services.

Table 8

Unit costs for NHS Specialist Palliative Care Services.

Table 9. Unit costs for Generalist Palliative Care Services.

Table 9

Unit costs for Generalist Palliative Care Services.

1.6. Resource costs

Recommendations made based on this review (see section Error! Reference source not found.) are not expected to have a substantial impact on resources.

1.7. Evidence statements

1.7.1. Clinical evidence statements

Early (> 3 months between first palliative care consultation and death) versus late (< 3 months between first palliative care consultation and death) referral to palliative care services

Three studies compared referral to palliative care services at > 3 months versus < 3 months between first palliative care consultation and death. One study found no evidence of clinical difference in number of unscheduled admissions (inpatient hospice utilisation), preferred and actual place of death (hospital death) and hospitalisation (people with >14 days of hospitalisation) (n=265; very low quality). There was evidence of clinically important benefit of early referral, with fewer people having 2 or more hospital admissions and people with any number of ICU admissions (n=265, very low quality). However there was also evidence of clinically important benefit of late referral in terms of number of people with 2 or more emergency room visits (n=265; very low quality).

A second study reported a clinically important benefit of early referral was observed for the outcomes of number of visits to accident and emergency, unscheduled admissions to hospital, hospitalisation (people with >14 days of hospitalisation), preferred and actual place of death (hospital death and ICU death) and avoidable/inappropriate admissions to ICU (n=366; very low quality).

Another study found a clinically important benefit of early referral was observed for the outcomes of hospitalised in last 3 months of life, death in hospital and median survival (n=99; very low quality).

Early (< 30 days between diagnosis and referral) versus late (> 3 months between diagnosis and referral) referral to palliative care services

One study compared referral to palliative care services at < 30 days versus > 3 months between diagnosis and referral. There was no evidence of clinically important difference between groups for quality of life (measured with FACIT-PAL scale) at any time point (n=155; low quality). There was also no clinically important difference in terms of people dying at home between the two groups (n=110; low quality).

Early (> 6 months between first palliative care consultation and death) versus late (< 6 months between first palliative care consultation and death) referral to palliative care services

One study compared referral to palliative care services at >6 months versus <6 months between first palliative care consultation and death. Clinically important benefit of early referral was observed for the outcomes of number of visits to accident and emergency, unscheduled admissions to hospital, hospitalisation (people with >14 days of hospitalisation), preferred and actual place of death (hospital death) and avoidable/inappropriate admissions to ICU (n=366; very low quality). There was no clinically important difference between groups for the outcome of preferred and actual place of death (ICU death) (n=366; very low quality).

Early (>30 days between first palliative care consultation and death) versus late (<30 days between first palliative care consultation and death) referral to palliative care services

One study compared referral to palliative care services at > 30 days versus < 30 days between first palliative care consultation and death. Clinically important benefit of early referral was observed for the outcomes of death occurring at home or inpatient hospice with early referral (n=842; very low quality).

1.7.2. Health economic evidence statements

No relevant economic evaluations were identified.

1.8. The committee’s discussion of the evidence

1.8.1. Interpreting the evidence

1.8.1.1. The outcomes that matter most

The Committee identified quality of life, and preferred and actual place of care and death, as the critical outcomes to measure the impact of early or late referral to the provision of palliative care services. These critical outcomes were identified as outcomes that would reflect a direct benefit to the patient as they are about maintaining or improving their quality of life and upholding their choices in the last year of life. The following outcomes were identified as important for decision making and focus on the impact and use of health resources as well as the impact on the patient; length of hospital stay, length of survival, hospitalisation, number of hospital visits, number of visits to accident and emergency, number of unscheduled admissions, use of community services, avoidable/inappropriate admissions to ICU, inappropriate attempts at cardiopulmonary resuscitation and staff, patient and carer satisfaction.

See tables 7 and 8 in the Methods chapter for a detailed explanation of why the committee selected these outcomes.

Five studies reported actual place of death, which was used as an indirect outcome for actual place of death compared to preferred place of death. None of the studies reported actual and preferred place of care.

For the important outcomes, one study reported the number of hospital visits. Two studies reported the outcome length of survival. Two studies reported the number of visits to accident and emergency. Three studies reported the outcome of hospitalisation but none reported whether these were unscheduled or avoidable. Two studies reported number of admissions to hospital and admission to ICU, although there were no details on these being unscheduled, inappropriate or avoidable. No studies reported the use of community services, length of stay, satisfaction of patient or family, inappropriate resuscitation or staff satisfaction.

1.8.1.2. The quality of the evidence

The quality of the evidence ranged from very low to low. This was due to study design, selection and performance bias, resulting in a high risk of bias rating, as well as the imprecise nature of the results extracted and analysed in this review. Indirectness in some outcomes (for example: actual and final place of death; hospitalisation) further contributed to the final GRADE rating.

1.8.1.3. Benefits and harms
Over 30 days and under 30 days

Clinical benefit was identified for early compared to late referral for place of death (at home or inpatient hospice (> 30 days versus < 30 days). No clinical differences were identified for early (< 30 days) compared to late referral (> 3 months). There were clinical benefits for early (> 3 months) versus late referral (< 3 month), with fewer hospital and ICU admissions, higher survival and death occurring more in hospital or the ICU.

Over 6 months and under 6 months

There was a clinical benefit of early referral (> 6 months versus late (< 6 months) for number of visits to accident and emergency, unscheduled admissions to hospital, people with >14 days of hospitalisation, hospital death and avoidable/inappropriate admissions to ICU. No clinically important differences were found between the groups for preferred and actual place of death (ICU death). The results were conflicting across the studies for an increase or reduction in emergency room visits.

Overall there were more benefits for early referral than late but the committee agreed the evidence was too limited to make a recommendation for a particular time point to have early referral.

The definition of early and late referral varied across the studies and it was not always clear why the time points where chosen. Two studies had the cut-off of 3 months (with more than 3 months before death considered early and after 3 months delayed), however it is unknown why this cut-off was chosen. One study included the cut-off of 3 months (with more than 3 months before death considered early and after 3 months delayed) and 6 months (with more than 6 months before death considered early and after 6 months delayed). In another study ‘early’ and ‘late’ referral was defined as < 30 days or > 3 months from diagnosis, but no information was reported on the time to death.

The committee commented that the difference in time of referral was only a few months in the studies and this could explain the absence of evidence for any clinically important differences between the two groups for the majority of the outcomes. One study used 30 days as the cut-off point (with earlier than 30 days considered early and after this considered late). Again this was considered to be a very short time-scale in which to make any clear conclusions of when an appropriate time for referral would be.

The committee agreed that some of the studies were conducted in different healthcare systems than the UK and this made it difficult to generalise the results to the NHS. Two of the studies were conducted in the US where there are marked differences in the organisation of end of life care and the provision compared to the UK. In addition one study centre was located in a specialist centre making it harder to extrapolate any conclusions from this setting. The other studies were conducted in Norway, Japan and Singapore which have different healthcare systems to the UK. Furthermore, all studies included cancer patients further limiting the generalisability to other populations.

Overall, the Committee commented that the time between referral to palliative care services and death observed in the studies included in the review was quite short, however, this could be explained at least in part by the challenge of identifying people in the last year of life who would benefit from a referral to palliative care services. The Committee also commented that people who consented to receive early palliative care could be inherently different in severity of illness or in social or cultural factors influencing the make-up of the study populations. The Committee was aware of other studies of early referral to palliative services, however in these studies the comparison was standard care, rather than late referral. The protocol specified including studies which defined ‘early’ and ‘late’ in order to make useful recommendations.

The Committee concluded there were no negative consequences of early referral to palliative care services but no substantial evidence of benefit either. The Committee concluded that the evidence on benefit of early referral (or provision of) palliative care services for people in the last year of life was not sufficient to formulate a recommendation. However, the Committee agreed to formulate a recommendation to offer initial holistic needs assessment soon after identification of being in the last year of life and for it to be carried out by someone knowledgeable who would be able to identify when and how to carry it out. This was extended to include a recommendation about carer’s needs assessment. The Committee agreed it was important to assess the Carers needs as well. Neglecting the carers needs inevitably impacts on the care the person in the last year of life receives (also see evidence review H on carers support services).

1.8.2. Cost effectiveness and resource use

No economic evidence was identified for this question.

Referral for early palliative care would cost more in terms of resources spent on palliative care services as people would receive the services for a longer period of time. However the committee acknowledged that receiving palliative care earlier could lead to some people deciding to withdraw from disease modifying or life prolonging treatments earlier. Providing early palliative care could be an efficient use of resources if the costs of providing the services for longer were lower than the costs saved from people withdrawing from (sometimes not cost effective, highly expensive with limited clinical effectiveness) treatments earlier.

Regardless of this view, the committee felt there were a number of sizeable issues with comparing ‘early’ palliative care to ‘late’ palliative care. A main issue being the inability to define what is meant by the term ‘early’. The significant challenge that exists in identifying when a person is in their last year of life, and even if identified, estimating their life expectancy with accuracy, makes knowing when to begin offering ‘early’ palliative care options extremely problematic. The committee noted that some conditions do not have predictable progression trajectories. It is extremely difficult to estimate the life expectancy of a person who has a condition where it is common for peaks and troughs in symptom severity to occur for example COPD or Heart Failure, or a condition where recovery from treatment may be unlikely but still possible.

Potential cost savings of early palliative care is dependent on the health care teams having access to resources which are not currently standardised within the NHS. Including these costs may suggest that a saving is not achievable in the short term as significant investment is required in improving resources. Estimating the costs that could be saved from people withdrawing from treatment earlier is even more challenging. Deciding to withdraw from treatment is a personal decision that will vary by condition, by individual circumstance and individual choice.

Without a clear definition of ‘early’ palliative care and without evidence on the effect that early palliative care has on treatment withdrawal in the entire end of life population, the committee were not able to estimate this effect. The committee were therefore unable to determine the cost effectiveness of early palliative care and did not feel they had enough information to be able to formulate a recommendation on the timing of an assessment.

The committee agreed that as soon as the health system identifies someone as a carer there should be a system in place that triggers an immediate referral for a carer’s needs assessment to occur as soon after the identification as possible. Early referral for a carer’s assessment will ensure that the carer is supported by and can benefit from the local carer support services available as early as possible.

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Appendices

Appendix B. Literature search strategies

The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual 2014, updated 2017 https://www.nice.org.uk/guidance/pmg20/resources/developing-nice-guidelines-the-manual-pdf-72286708700869

For more detailed information, please see the Methodology Review.

B.1. Clinical search literature search strategy

Searches for were constructed using a PICO framework where population (P) terms were combined with Intervention (I) and in some cases Comparison (C) terms. Outcomes (O) are rarely used in search strategies for interventions as these concepts may not be well described in title, abstract or indexes and therefore difficult to retrieve. Search filters were applied to the search where appropriate.

Table 12. Database date parameters and filters used

Medline (Ovid) search terms

Embase (Ovid) search terms

Cochrane Library (Wiley) search terms

CINAHL (EBSCO) search terms

PsycINFO (ProQuest) search terms

HMIC (Ovid) search terms

SPP (Ovid) search terms

ASSIA (ProQuest) search terms

B.2. Health Economics literature search strategy

Health economic evidence was identified by conducting a broad search relating to end of life care in NHS Economic Evaluation Database (NHS EED – this ceased to be updated after March 2015) and the Health Technology Assessment database (HTA) with no date restrictions. NHS EED and HTA databases are hosted by the Centre for Research and Dissemination (CRD). Additional searches were run on Medline and Embase for health economics, economic modelling and quality of life studies.

Table 13. Database date parameters and filters used

Medline (Ovid) search terms

Embase (Ovid) search terms

NHS EED and HTA (CRD) search terms

Appendix D. Clinical evidence tables

Download PDF (229K)

Appendix E. Forest plots

E.1. Early referral to (or provision of) palliative care services versus late referral to (or provision of) palliative care services in people in their last year of life

Appendix G. Excluded studies

G.2. Excluded health economic studies

None.

Appendix H. Research recommendations

H.1. RR1: Does early review of service provision and referral to additional specialist palliative care services improve outcomes for adults with progressive non-cancer disease thought to be entering their last year of life?

Why this is important:

There is a body of research into the optimal timing of referral to specialist palliative care (SPC) in cancer patients, which generally points to earlier referral leading to better patient-reported outcomes. The committee noted that similar evidence does not exist for patients with a non-cancer diagnosis, for example in patients with progressive organ failure, such as advanced heart failure or dementia. Such patients are typically referred very late to SPC, if at all. There is a need for further research in the latter group, which would compare outcomes from the combination of early identification and specialist palliative care input, versus usual care.

PICO question

There is a growing body of research into the benefits of introducing specialist palliative care earlier in the care of advanced cancer patients, but the committee noted that this was not the case for patients with a progressive non-cancer diagnosis who may be entering the last year of life.

Population: A defined group of people with advanced progressive organ failure, or frailty, eg people with NYHA Stage IV heart failure under the care of cardiologists and heart failure nurse specialists.

Intervention(s): Holistic needs assessment and advance care planning followed by immediate specialist palliative care review, in addition to any current cardiology support and specialist heart failure nurses.

Comparison: People with end stage organ failure who are receiving usual care (which may include cardiology support and specialist heart failure nurses, or future SPC review).

Outcome(s): quality of life, Patient and carer satisfaction;; other end of life specific PROMs; timing and number of referrals to specialist palliative care; service utilisation; achievement of preferred place of care /death; survival.

Importance to patients or the population

People in the last year of life may benefit from needs-based care plans and advance care planning taking into account preferences and wishes. These are done to a large extent in cancer patients, and specialist palliative care services are also heavily involved in cancer patients in the last year of life. Studies have shown benefits to cancer patients from early review of needs, care planning and SPC involvement in terms of subjective outcomes - quality of life, symptoms, mood and reduced inappropriate resource utilisation.

There may be a survival advantage for some. It would be useful to show if specific groups of people with non-cancer progressive disease could also benefit in these ways. Given that the majority of older people die from chronic non-cancer conditions, this would of great importance for health and social care planning and for resource allocation.

Relevance to NICE guidanceRelevant to future updates of NICE End of Life Care Service Delivery guideline, and NICE chronic disease guidelines, which have been hampered by lack of evidence on this question.
Relevance to the NHSClarification of role of NHS-funded SPC services for non-cancer conditions; optimal use of current resources and allocation of future resources; identification of future role for community and hospice services.
National prioritiesSome non-cancer diseases have national service frameworks but lack of evidence on this question has prevented them from having a clear strategy on how best to plan and deliver SPC services in the last year of life.
Current evidence baseMost of the research in this area for cancer populations has been conducted in North America where the healthcare systems are very different from UK. Compared to the cancer population, the current evidence base for non-cancer conditions is limited with respect to this research question. Some studies have evaluated specialist palliative input along with conventional services or new interventions, eg in chronic lung disease, but usually focused on short-term or symptom-related outcomes.
EqualityYes – people with chronic progressive non-cancer conditions such as lung or heart disease, MND and stroke have severe physical disabilities and may have cognitive impairment.
Study designThis should be a prospective study design, but different methodologies may be applicable. Possible approaches include: observational cohort studies; cluster or patient-level RCTs; point of care allocation studies. Both quantitative and qualitative designs are appropriate, ideally nested in the same study. There should be a preliminary feasibility study with clear criteria for progression to a larger study.
FeasibilityThe embedded feasibility study should assess issues such as: the likelihood of SPC services being able to respond to increased referrals; functioning of new referral pathways including to hospices; ability to standardise the elements of SPC that can be offered; acceptability of HNA and ACP to non-cancer patients entering the last year of life; ability to conduct long-term follow-up of patients living in the community and care settings; ethical constraints such as sharing of diagnostic and prognostic information to patients with longstanding conditions and limited cognition.
Other commentsAs well as NIHR, disease-specific charities such as BHF, BLF, MNDA may be interested to fund a study in their populations.
ImportanceHigh: the research is essential to inform future updates of key recommendations in this EOLC service delivery guideline and also of disease-specific NICE guidelines and national service frameworks.

Final

Evidence review

Developed by the National Guideline Centre, hosted by the Royal College of Physicians

Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.

Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.

NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.

Copyright © NICE 2019.
Bookshelf ID: NBK558768PMID: 32614554

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