Recommendations for research

The Guideline Committee has made the following recommendations for research. The Committee's full set of research recommendations is detailed in the full guideline.

1 Recognising dying

What can multiprofessional teams do to reduce the impact of uncertainty of recognising when a person is entering the last days of life on clinical care, shared decision‑making and communication with the dying person and those important to them?

Why this is important

It may be difficult to determine when the dying person is entering the last few days or weeks of life. Predicting the end of life is often inaccurate, and current prognostic tools and models are limited. Some level of uncertainty in recognising when a person is entering the last days of life is likely and is often a challenge to planning care. However, it is crucial to minimise this uncertainty to ensure that it does not prevent key discussions between the healthcare professional and the dying person and those important to them.

It is therefore important to identify how the uncertainty of recognising when a person is entering the last days of life influences information sharing, advanced care planning and the behaviour of healthcare professionals. A mixed‑methods approach (quantitative and qualitative evidence) is proposed that aims to explore how different multidisciplinary team interventions can reduce the impact of uncertainty on clinical care, shared decision‑making and communication, specifically on engaging the dying person and those important to them in end of life care discussions. Multidisciplinary team interventions include any different methods of giving feedback, initiating end of life discussions, record keeping or updating care plans, compared with usual care. Outcomes of interest include quality of life, patient or carer satisfaction, changes to clinical care and identification and/or achievement of patient wishes such as preferred place of death. In addition the barriers and facilitators for the healthcare professionals to manage this uncertainty to best support the dying person and those important to them should be explored.

2 Agitation and delirium

What is the best way to control delirium, with or without agitation, in the dying person, without causing undue sedation and without shortening life?

Why this is important

People who are entering the last days of life may develop sepsis, dehydration and various biochemical disorders which may lead to the development of delirium. This is characterised by altering levels of consciousness, confusion and possibly hallucinations.

Many of the drugs used to control delirium are classed as sedatives. It can be difficult for inexperienced clinicians to reduce delirium without causing undue sedation. An inappropriately large dose of sedative medication may also compromise respiration. A perceived risk of over‑sedation is that the dying person's life may be shortened because of the sedation itself.

Specialists in palliative care are knowledgeable about which drugs to use and in which combinations, and know how to use the correct routes and frequency to achieve reduction in delirium, and of any accompanying agitation, without over‑sedating the dying person. However most people who are dying are not under the direct care of such specialists, although they may be called in for advice out‑of‑hours if the person becomes agitated and this has resource implications for specialist palliative care services.

The research should study how key drugs in UK palliative care practice (such as benzodiazepines and antipsychotics) can be applied in a range of settings in order to reduce delirium and agitation without causing undue sedation or inadvertently shortening life. This is proposed to be conducted as multi‑arm, multi‑stage interventions using escalating doses over 12‑hours as clinically indicated.

3 Noisy respiratory secretions

In people considered to be in the last few hours and days of life, are antisecretory anti‑muscarinic drugs (used alongside nursing interventions, such as repositioning and oropharyngeal suction) better at reducing noisy respiratory secretions and patient, family and carer distress without causing unwanted side effects, than nursing interventions alone?

Why this is important

It is common for people to experience noisy respiratory secretions at the end of life and the so called 'death rattle' is a predictor of death. The noise can cause considerable distress for people important to the dying person, both at the time and possibly after death, because of concerns that the person may have drowned or suffocated to death. Clinicians may administer subcutaneous anti‑muscarinic agents in an attempt to 'dry up' secretions and relieve any distress primarily to people important to the person despite a lack of evidence of any beneficial effect to the patient or improvement in distress levels.

The evidence for the efficacy of pharmacological interventions in managing respiratory secretions is of low quality, and it is not clear if any one drug is more effective than another or if drugs are more effective than non‑pharmacological approaches such as repositioning or oropharyngeal suction. Most studies involved low numbers of patients and were primarily based on cancer patients in hospices and so may not reflect the larger numbers of patients dying with non‑malignant diseases in hospitals and in community care.

Anti‑muscarinic agents may have undesired side effects, such as dry mouth, blurred vision or urinary retention, as well as a cost implication, and it is therefore hard to justify their continued use given the limited evidence base.

A randomised controlled trial is proposed comparing antisecretory anti‑muscarinic drugs and nursing care to nursing care alone. Nursing interventions include repositioning, mouth care and education and reassurance for those important to the dying person. Outcomes of interest are subjective and objective measures of reduction in noise level, reduction in distress to the dying person or those important to them and adverse effects.

4 Anticipatory prescribing

What is the clinical and cost effectiveness of anticipatory prescribing for patients dying in their usual place of residence, on patient and carer reported symptoms at end of life?

Why this is important

Anticipatory prescribing can provide access to essential medicines for symptom control at the end of life. Current best practice when it is recognised that someone is entering the final days of life recommends that medicines to manage pain, breathlessness, nausea and vomiting, and agitation are prescribed with authorisation for administration if clinically indicated when it is recognised that someone is entering the final days of life. Although their use is relatively widespread, there remains a need to investigate the clinical and cost effectiveness of this approach. Studies undertaken to date have been small‑scale audit‑type projects evaluating the use of anticipatory prescriptions and qualitative studies exploring the barriers to uptake.

Uncertainty remains as to the impact of anticipatory prescribing on outcomes such as preferred place of death and symptom control, and also uncertainty as to what should be prescribed.

A cluster randomised controlled trial (randomised by GP practice) is proposed to compare interventions of anticipatory prescribing ('just in case' boxes) with a generic list of medicines or anticipatory prescribing individualised to the patient's expected symptoms, compared with reactive prescribing at the bedside after symptoms have occurred. Outcomes of interest include patient and carer symptom ratings, patient‑rated quality of life and healthcare use.

ISBN: 978-1-4731-1585-9

  • National Institute for Health and Care Excellence (NICE)