The guideline committee has made the following recommendations for research.
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 approaching the end of their life?
There is a body of research into the optimal timing of referral to specialist palliative care in cancer patients, which generally points to earlier referral leading to better patient-reported outcomes. The committee noted that similar evidence is very limited for patients with a non-cancer diagnosis, for example in patients with progressive organ failure, such as advanced heart failure, or patients with life-limiting neurological disease, such as motor neurone disease or dementia. Such patients are typically referred very late to specialist palliative care, if at all. Further research would compare outcomes for people having a combination of early identification and specialist palliative care input with those for people having usual care.
Which of the electronic information-sharing systems perform best for the care of people approaching the end of their life?
The guideline committee made recommendations on sharing information about people who are approaching the end of their life with other members of the multipractitioner teams involved in their care. The committee was aware that in the past, most information recording and sharing was done using paper-based systems, with information shared between teams and care settings using telephone, fax and emails. However, fully electronic databases and information-sharing systems using internet protocols are becoming more established in the NHS and also in hospice services. NHS Digital has a stated aim to develop joined-up digital systems in the health service. The committee looked for research about which systems performed best and were reliable for sharing confidential information but was unable to find it. The committee were aware of deficiencies in the current systems. Studies conducted in other countries using electronic systems were not applicable to the NHS.
It is therefore recommended that research should be done on the systems that are currently available in the UK. The purpose of this research would be to inform healthcare planners and service providers on the most efficient, reliable, secure, confidential and cost-effective systems to be used for sharing information about people approaching the end of their life across a range of care settings.
What are the benefits of planned, regular community-based reviews compared with as-required review of non-cancer patients approaching the end of their life?
There is little relevant research evidence for the optimum frequency of review of people with progressive non-cancer conditions who may be approaching the end of their life. Many of the studies attempted in this area have been conducted in other countries where the healthcare systems are very different from the UK. 'Usual care' for non-cancer conditions tends to provide demand-led review by specialists and primary care staff. This may be appropriate if people are well supported at home or in care settings. However, it could lead to unrecognised deterioration in symptoms or functioning, and place people at risk of crises and unplanned hospital admissions if they are living alone or have little professional support. A policy of regular, planned reviews of patients in their place of residence could improve symptom management, maintain a better level of functioning, prevent crises and may pre-empt emergency hospital visits and admission. However, there is a risk that they could impose unnecessary burdens on the patient, family and the healthcare system.
This research would study non-cancer patients receiving usual care (with or without any concurrent specialist level care), and assess their outcomes against different levels of frequency of planned specialist reviews in the community.
What is the optimal way of discharging people approaching the end of their life from hospitals back to their place of residence?
The committee found there was very little evidence on discharging adults approaching the end of their life and transferring them between settings. One of the most important transfers is from hospital to home or the person's place of residence, such as a nursing home, especially when death is imminent. Such discharges are often delayed because of medical or nursing problems, or by unmet social care needs. However, some of these problems could be managed well in the community with key equipment or medication and improved social care. The consequences of delayed discharge can be distressing to the person approaching the end of life and their carers and important people. It could mean people staying and dying in inappropriate care settings, such as an acute hospital ward, when it is not their preferred place to be cared for and die. Delayed discharge would also be unnecessary from a medical or nursing perspective.
Key factors in ensuring prompt discharge with care and compassion include clear communication and processes between services providing care in the 2 settings and also those providing transport.