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Marie Curie Palliative Care Research Department

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I-CAN-CARE

I-CAN-CARE, our new research programme, will run initially from 2016 to 2019, and has been awarded £1.5 million funding by Marie Curie.  The programme centres on prognosis, symptom control, and communication.  

Research priorities for palliative and end-of-life care

Several recent reports regarding palliative and end-of-life care have highlighted areas where further research and/or improvement of care would be of benefit. The Neuberger report in 2013 recommended more research into improving the accuracy of prognoses, while the research priorities for palliative care identified in 2015 by the Palliative and End-of-life care Priority Setting Partnership (PeolcPSP) included managing symptoms and medication and improving support for carers and families.  Also in 2015, the “Dying without Dignity” report by the UK Parliamentary and Health Service Ombudsman identified six key areas where care of dying patients needed improvement. The first three of these, echoing the research priorities highlighted above, were: “not recognising when patients are dying”, “poor symptom control (pain and agitation)”, and “communication”.

I-CAN-CARE addresses these three areas, seeking to improve end-of-life care by exploring how assessment of dying patients might be improved, and how clinicians might improve their prognostic skills and better communicate dying patients’ prognoses to them and their relatives.  It comprises two Work Packages: WP1 and WP2. 

I-CAN-CARE WP1: palliative sedation

I-CAN-CARE WP1 centres on the assessment and care of patients (with any diagnosis) receiving palliative sedation in the last few days of life.  This work package begins with three linked strands: 1.1 systematic reviews of relevant published literature, 1.2 exploring usual care with regard to palliative sedation - investigating clinicians’ views and auditing patient notes in a London teaching hospital and a London hospice.  Strand 1.3 examines the acceptability of sedation monitoring via interviews and focus groups with patients, families, and clinicians. 

These three research strands will feed into a feasibility study (WP1 strand 1.4), which will begin in autumn 2016, and investigate possibilities for conducting a randomised controlled trial (RCT) comparing usual care with objective monitoring of sedation for people receiving specialist palliative care in the last few days of life. 

Depending on the findings from the earlier elements of the work package, the feasibility study may then be followed with a pilot study (strand 1.5).  Outcomes from the pilot study will in turn be used to determine whether or not to move on to a full-scale RCT of sedation monitoring and dose titration for patients at the end of life. 

Research background

Sedatives are widely used at the end of life, although the prevalence varies according to country, setting (community, hospice or hospital), and type of sedation administered (light, deep, continuous or intermittent). A recent Cochrane systematic review concluded that future studies should “focus on how sedatives affect a person’s quality of life, or peacefulness and comfort during the dying phase, and how well sedation controls the distressing symptoms,” and that side effects should be better reported and quantified. Maltoni et al. (2014) recommend that palliative sedation should be “proportionate” and doses of sedatives should be “individually tailored”. However, current practice is often based on an informal assessment about whether or not a patient appears to be “settled” or “comfortable”, and objective monitoring is rarely used. The result may be either over- or under-sedation, with adverse consequences for patient care and the experience of relatives.

Routine use of objective monitoring (using either observational scales or technical equipment) may have benefits in terms of better titration of medication and ensuring patient comfort.  Bispectral (BIS) index technology is used to monitor depth of sedation in intensive care, and assists in avoiding over- or under-sedation, since this technology provides additional information to clinical assessment to guide the dosage of medication used.

Some pilot work to explore the use of BIS in palliative care has been conducted, and a study is currently in progress in Australia. These preliminary studies suggest that BIS may have utility for people receiving palliative care at the end of life.  BIS monitoring at the end of life may reassure families and carers regarding the safe and appropriate use of sedating medications.  However, the appropriateness or usefulness of this technology in a palliative care setting is not yet clear. Some people may perceive this technology as increasing the medicalisation of death, and so consider it inappropriate.  This kind of overt and intensive monitoring may also be perceived as overly intrusive, and uncertainty might be introduced if scores from technical devices differ from results from conventional clinical monitoring.  Further work is therefore required to investigate whether this approach is acceptable to patients, families, and professionals working with people who are dying. This is the focus of WP 1.3.

For more information please contact: Bella Vivat 

Investigators:

PI: Paddy Stone                Marie Curie Palliative Care Research Department (MCPCRD), UCL
Bella Vivat MCPCRD, UCL
Hilary Bird
Marie Curie Expert Voices
Alice Colum (nurse manager)
Marie Curie Hospice, Hampstead
Sarah Davis MCPCRD, UCL 
Anna Gola (health economist) MCPCRD, UCL
Jane Harrington MCPCRD, UCL
Tariq Husain (anaesthetist & intensivist) Northwick Park and St Mark’s Hospital
Nuriye Kupeli
MCPCRD, UCL
Anna-Maria Krooupa (Baillie Marie Curie PhD Scholar) MCPCRD, UCL 
Philip Lodge Marie Curie Hospice, Hampstead
Federico Ricciardi (statistician) MCPCRD, UCL
Jonathan Martin UCLH palliative care team
Stephen McKeever London South Bank University
Vinnie Nambisan
North Middlesex Hospital
Tim Wehner (neurologist & neurophysiologist) National Hospital for Neurology and Neurosurgery
Liz Sampson
MCPCRD, UCL
Kathy Seddon Marie Curie Expert Voices
Alice Colum (nurse manager) Marie Curie Hospice, Hampstead
Liz Thomas (lead nurse) Marie Curie Hospice, Hampstead
Adrian Tookman Marie Curie Hospice, Hampstead