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Delirium research in palliative care

Palliative care is the umbrella term used to cover the treatment, care, support and guidance that a person with a life-limiting or terminal illness, and their family and friends, can receive. This type of care can be provided in various settings, such as at home, in hospital or in a hospice. Anyone can develop delirium, but people in palliative care settings such as hospices are at a particularly high risk. This is because older people and those with a serious illness are more vulnerable.

The impact of delirium on patients’ ability to communicate and make decisions may be particularly distressing for patients and their families at this critical time, close to the end of life. Therefore, it is important to research how to prevent delirium and to improve delirium recognition, assessment and management.

Our research aims to improve the care of people with, and at risk of delirium in palliative settings. Our palliative care research is part of the SUNRISE collaboration (Studies to understand and improve delirium in palliative settings). This collaboration includes research teams in the UK, Canada, and Australia.

 

NIHR doctoral fellowship project: Developing a multi-component intervention for the prevention and management of delirium in hospice in-patient units: a targeted behaviour change approach

People who have been admitted to a hospice are at particular risk of delirium because of the advanced nature of their illness, but little is known about how to prevent or manage delirium in hospices. There is strong evidence that delirium can be prevented in hospitals using “multi-component interventions” aimed at the potential causes of delirium. These include: ensuring patients have enough to drink; changes in routines to encourage good sleep patterns; reviewing medication and investigating infections.

This approach may be useful in hospices, but there may also be important differences in how delirium should be cared for. For example, the understanding and knowledge of staff; patient risk factors and approaches to treatment may differ from those in hospitals or other settings. Delirium is very common among people admitted to hospices and it can be particularly distressing for patients and their loved ones at this critical time. It is important to develop an approach to preventing and managing delirium that is tailored to hospice care.

Aim: To develop an intervention to improve the prevention and management of delirium in hospices

How is this being developed?

  1. We are carrying out a review of previous research studies to learn what is already known about patient, family, staff and volunteers’ experience of delirium and its care in palliative care settings.
  2. We have interviewed 36 staff and volunteers at two hospices to explore their current practice regarding care for people with delirium. We have explored influences that shape their practice, including their understanding, emotional responses and aspects of hospice culture and organisation.
  3. A systematic review of risk factors for delirium in palliative care will be carried out.
  4. An expert panel of palliative care and delirium researchers and clinicians will draw upon previous research and guidelines to agree a list of risk factors for delirium, and a list of staff behaviours to address delirium, that are relevant to hospices.
  5. We will carry out a study in two hospices to observe the ways that hospice staff and volunteers work to prevent and manage delirium and learn about what may help or hinder changes in practice.
  6. The expert panel will use this information to prioritise a number of aspects of practice which, if changed, should improve delirium care in hospices.
  7. We will design an approach which will focus upon these target aspects of care (known as “behaviours”), using a tool called “The Behaviour Change Wheel” to find the best ways to help hospice staff change these behaviours. A hospice working group, including staff, patients and relatives, will help to develop the approach.

We hope this project will be an important step forward in improving delirium prevention and care in hospices and reducing the difficulties and distress that delirium can cause patients and their families.

NIHR doctoral fellow: Imogen Featherstone

Supervisors: Dr Najma Siddiqi, Professor Miriam Johnson, Professor Trevor Sheldon

Funding acknowledgement and disclaimer
Imogen Featherstone is funded by a National Institute for Health Research (NIHR) Doctoral Research Fellowship for this research project. This webpage presents independent research. The views expressed are those of the author and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Funded by NIHR logo

Development of core outcome sets for effectiveness trials of interventions to prevent and/or treat delirium (DelCOrS)

Delirium is common, serious, and potentially preventable. Delirium impacts nearly all patients from the critically ill to elderly living at home. Delirium can result in death, complications, prolonged hospital stay, and loss of independence resulting in long-term care placement. For these reasons, studies of treatments to prevent or reverse delirium have risen considerably. To determine the effects of treatments, researchers measure outcomes, for example quality of life, symptoms, or complications. At present, there is no consistency in outcomes studied by researchers for methods to prevent or treat delirium. This creates problems as we cannot compare or combine study results, making treatment decisions difficult.

One strategy to overcome this problem is to agree upon a set of main outcomes for a health condition, called a core outcome set (COS). The DelCOrS team aim to develop COS for studies of interventions to prevent or treat delirium for critically ill and hospitalized patients, those requiring palliative care, and older adults at risk of delirium in long-term care. We will review the evidence base to determine outcomes already used. We will interview patients and families about outcomes important to them. We will conduct a Delphi study (consensus building exercise) to seek opinion from patients/family with experience of delirium, clinicians, and researchers and to reach agreement. We will test in this Delphi study if the way we provide information influences the results. We will hold a meeting to establish the final COS. Engagement in research projects may be hard. We will interview our patient/family participants to find out what was hard, what worked well, and recommendations to inform similar studies in the future. Finally we will use the same methods to decide the best tools to measure COS outcomes.

Protocol research team: Louise Rose, Meera Agar, Lisa Burry, Noll Campbell, Mike Clarke, Jacques Lee, Najma Siddiqi, Valerie Page

Palliative care review team: Najma Siddiqi, Imogen Featherstone, Jason Boland, Miriam Johnson, Meera Agar, Annmarie Hosie, Louise Rose, Peter Lawlor

Funder: Canadian Institutes of Health Research

Long-term care review team: Namrata Rana, Najma Siddiqi, Louise Rose

Funder: Canadian Institute of Health Research

Follow the link to the DelCOrs study protocol (PDF , 861kb)

For further information see http://www.comet-initiative.org/studies/details/796

A survey of delirium screening practice in specialist palliative care units in the UK

Once identified, delirium can often be treated by identifying and treating the underlying cause, and managed by providing basic good quality care (maintaining hydration, managing pain, checking for infections etc.). However, it is often not identified by healthcare staff and therefore not adequately managed. Screening tools such as questionnaires and observational checklists can be used to help identify delirium. There are a large number of screening tools available, to screen for delirium in inpatient settings. However, there is currently no strong guidance for which tool should be used in specialist palliative care units (SPCUs), including, hospices and specialist palliative care units in hospitals. Often the tools that are used have not been tested in these settings.

The aim of this survey is to investigate how healthcare staff in specialist palliative care units, in the UK, screen for delirium, to gather information on any delirium training offered at the hospices, and gather views on the barriers and facilitators to delirium screening. The survey will be sent to all specialist palliative care adult inpatient units in the UK.

Research team: Rebecca Woodhouse, Miriam Johnson, Najma Siddiqi, Jason Boland, Imogen Featherstone

Follow the link to the delirium survey protocol (PDF , 330kb)

Follow the link to the published paper