Palliative and end of life care are increasingly in demand as people are living longer and with multiple long-term conditions. However, an estimated 100,000 people in the UK that could benefit from palliative care die without receiving it each year. There is substantial evidence that inequalities in access to palliative and end of life care relate to various sociodemographic factors. Experts have highlighted that access to palliative and end of life care may improve quality of life for patient and family and reduce symptom burden. This POSTnote summarises the key components of palliative and end of life care and recent changes in UK policy. It identifies inequalities and challenges to accessible provision. It also reviews evidence on the impact of the COVID-19 pandemic on the provision of care and outlines key trends.
Documents to download
Prolonged Disorders of Consciousness (346 KB , PDF)
Consciousness is the state of being aware of and responsive to one’s surroundings. Damage to the brain can result in disorders of consciousness. Prolonged Disorders of Consciousness (PDoC) include the Vegetative state (VS) (sometimes termed Unresponsive Wakefulness Syndrome), which is wakefulness without awareness, and the Minimally conscious state (MCS), which is wakefulness with minimal awareness.
There are no reliable statistics on how many people are affected by PDoC; one reason for this is that it can result from numerous initial causes. Estimates of how many patients with a PDoC are admitted to specialist rehabilitation units in England each year range from 365 to 1,750. By discharge, 43% have emerged into consciousness and demonstrate a wide range of disability. Although a few are thought to reach full independence, the majority remain severely dependent. Long-term follow up data is needed to improve treatments for PDoC, to better communicate prognosis and to direct funding more effectively; one option is to mandate the recording of data for those who are enter VS or MCS with data being updated at least annually.
Accurate prognosis (determining the likely outcome) is difficult, and no interventions have been proven to improve outcomes once patients are in an established PDoC. Research continues into both using technologies such as functional magnetic resonance imaging (fMRI) and electroencephalography (EEG) to augment clinical evaluations of diagnosis and prognosis, and into treatments for established PDoC.
Treatments to support or prolong life, such as ventilation, dialysis, or cardiopulmonary resuscitation may only be given when there is evidence of benefit of these treatments to the patient. They are withdrawn when clinicians and family are in agreement that the patient would not benefit from them. A judgment in the UK Supreme Court (Aintree vs James) emphasised that the focus should be on whether it is in the patient’s best interests and therefore lawful to continue to give rather than withdraw certain treatments, including clinically assisted nutrition and hydration (CANH). There is agreement that best interest meetings should be held routinely, when treatment decisions are needed. In its 2018 ruling, in a case called Re Y, The UK Supreme Court ruled that there was no legal obligation to approach the court for endorsement of the decision where there was agreement of medical opinion, agreement about the proposed course of action among those with an interest in the patient’s welfare, and where the decisions were not ‘finely balanced’. In all other situations, applications to the court of protection were encouraged.
The number or distribution of patients in whom the decision to withdraw CANH has been made without recourse to the courts is not known, and there is no clear national governance or oversight for this. If the proposed registry of PDoC patients included outcomes and mode of death then this data could be synthesised and audited.
- There are no reliable statistics on how many people are affected by PDoC; one reason for this is that it can result from numerous initial causes, such as physical injury, periods of low oxygenation, and severe brain infections.
- Long-term follow up data is needed to improve treatments for PDoC, to better communicate prognosis and to direct funding more effectively.
- There have been calls to mandate the collection of data for all patients who enter into a VS or MCS with patient data being updated at least annually.
- Recent legal judgments emphasise the need to make ‘best interests’ decisions early about the harms and benefits of treatments, including the provision of clinically assisted nutrition and hydration (CANH). Research is needed into how to optimise this process, and how best to train those involved.
- In its 2018 ruling, in a case called Re Y, The Supreme Court ruled that there was no legal obligation to approach the court for endorsement of a decision to withdraw CANH where there was agreement of medical opinion, agreement about the proposed course of action among those with an interest in the patient’s welfare, and where the decisions were not ‘finely balanced’. In all other situations, applications to the court were encouraged.
- The number or distribution of patients in whom the decision to withdraw CANH has been made without recourse to the courts is not known, and there is no clear national governance or oversight for this. If the proposed registry of PDoC patients included outcomes and mode of death then this data could be synthesised and audited.
POSTnotes are based on literature reviews and interviews with a range of stakeholders and are externally peer-reviewed. POST would like to thank consultees and peer reviewers for kindly giving up their time during the preparation of this briefing, including:
Members of the POST board*
Professor Michael Barnes, University of Bristol*
Victoria Butler-Cole QC, 39 Essex Chambers*
Baroness Elizabeth Butler Sloss
Professor Lynne Turner-Stokes, Northwick Park Hospital*
Dr Srivas Chennu, Cambridge University Hospitals
Dr Richard Cookson, University of York*
Jakki Cowley, Empowerment Matters*
Upeka De Silva, Compassion in Dying*
Colonel John Etherington, formerly at the Defence Medical Rehabilitation Centre, Headley Court*
Baroness Ilora Finlay*
Professor Rob George, Guy’s and St Thomas’s Hospital and King’s College London*
Helen Gill, Gill-Thwaites & Elliott Consultants Ltd*
Professor Raanan Gillon, formerly Imperial College London*
Dr Andrew Hanrahan, Royal Hospital for Neurodisability
Professor Celia Kitzinger, University of York and the York-Cardiff Chronic Disorders of Consciousness Research Centre*
Professor Jenny Kitzinger, University of Cardiff and the Cardiff-York Chronic Disorders of Consciousness Research Centre*
*Professor Penney Lewis, Centre of Medical Law and Ethics, King’s College London
*Professor Henry Marsh, Neurosurgeon, formerly St George’s Hospital
Prof David K Menon, University of Cambridge*
Alex Ruck-Keene QC, 39 Essex Chambers*
Professor Anne-Marie Slowther, Warwick Medical School*
Professor Steve Sturman, Associate Head Doctors Ministries*
Judy Taylor, Brain injury is BIG, and other colleagues from the charity.*
Professor Derick Wade, Oxford Brookes University*
Professor John Whyte, Moss Rehabilitation Research Institute*
* denotes people and organisations who acted as external reviewers of the briefing.
This POSTnote updates POSTnote 489 Vegetative and Minimally Conscious States published in 2015. This acknowledgements list reflects all contributions, whether that was for the original paper, the updated briefing or both. For more information please contact POST.
Documents to download
Prolonged Disorders of Consciousness (346 KB , PDF)
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