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End of Life and Palliative Care

  • Ambitions for Palliative and End of Life Care: This document was developed by the National Palliative and End of Life Care Partnership.
  • Dying well in Custody Charter:The Dying well in custody charter is a prison-specific adaptation of the Ambitions for Palliative and End of Life Care Framework. ‘I statements’ and standards are attached to each of the six positive ambitions. The Ambitions and Standards ensure that care is coordinated across the secure setting and that staff are supported to achieve a level of competence and confidence to deliver end of life care professionally and with dignity. There is a self-assessment tool available with an ACT and ADOPT checklist to support implementation of the Charter.
  • The Gold Standard Framework Training Programme in Prisons: The Gold Standards Framework has three steps: Identify, Assess, Plan well. Identification of prison residents in their last year of life allows for comprehensive assessment of their evolving needs and well-coordinated care and support. There is a GSF training programme for prisons. Engagement in the training programme requires two nominated leads from a prison to attend interactive workshops, share good practice examples, evaluate current practice and lead local implementation, sharing learning and expectations with staff in their own setting.
  • RCGP Palliative and End of Life Care Toolkit: This toolkit has been developed in partnership with Marie Curie to support healthcare professionals to identify early those patients who are likely to die within 12 months and then to provide well-coordinated proactive care in their last 12 months of life. There are links to clinical guidance, national reports and best practice, resources for patients and carers, and training and appraisal tools.
  • The Daffodil Standards: The RCGP and Marie Curie UK have jointly drawn up eight Daffodil Standards. They consist of quality statements, evidence-based tools, reflective learning exercises and quality improvement actions designed to assist primary care providers to reliably support all patients with advanced serious illness and end of life care needs.
  • End of life care for people with problematic substance use and their families (PDF): This guide to end of life care for people with problematic substance use and their families was produced by DDN for Manchester Metropolitan University, following a two year research programme the team conducted on end of life care for people with alcohol and other drug problems.

Although not specifically tailored to the criminal justice system or to lower literacy levels, the information is likely to be helpful for staff in secure and community environments and may act as a starting point for discussion with residents and their families. The links below provide further resources from the research.

Do Not Attempt CPR (DNACPR) AND Advanced Directives

DNACPR

As the age of the prison population increases and lengthy sentences continue to be administered by the courts, an increasing number of patients are likely to die in prison. It is important to identify early those patients in their final 12 months of life and, as part of their proactive care, to have timely and honest discussions about the appropriateness of CPR. Even if a clinician decides that CPR will not be appropriate for a patient, it is important to discuss the decision with them, unless it is deemed that ‘physical or psychological harm’ will be caused.  DNACPR forms vary across different services but should be transferred with the patient if they move from one setting to another. 

Advance Decisions (living wills, advance directives, ADRT) are legally binding documents which must be written down, signed by the patient (who must have capacity at the time of writing) and signed by a witness. They do not require a solicitor or a specific form to be completed. An Advance Decision allows someone to refuse any medical treatment in advance. It will only be used if they do not have capacity to make or communicate a decision for themselves. Decisions around CPR may be included in advance decisions if desired.

Advance Statements may also be written. These are not legally binding but can express a patient’s preferences, wishes, beliefs and values regarding their future care. Anything written in an Advance Statement must be taken into account when making a best interests decision for that person. There are links below relating to CPR decision making, DNAR forms and Advance Decision forms.

Release on Temporary License and Early Release on Compassionate Grounds

‘Early release may be considered where a prisoner is suffering from a terminal illness and death is likely to occur soon. There are no set time limits, but three months may be considered to be an appropriate period. It is therefore essential to try to obtain a clear medical opinion on the likely life expectancy. The Secretary of State will also need to be satisfied that the risk of re-offending is past and that there are adequate arrangements for the prisoner's care and treatment outside prison.

Early release may also be considered where the prisoner is bedridden or severely incapacitated. This might include those confined to wheelchairs, paralysed or severe stroke victims. Applications may also be considered if further imprisonment would endanger the prisoner's life or reduce his or her life expectancy. Conditions which are self-induced, for example following a hunger strike, would not normally qualify a prisoner for release.’

How to make an application on medical grounds – determinate sentence

  • Chapter 12 Appendix A details compassionate release criteria (medical and tragic family circumstances).
  • Chapter 12 Appendix B Form 210 Section 4 is the part of the application that should be completed by the registered medical practitioner. It is important to give as much information about the medical condition as possible, to include other reports e.g from hospital consultants and to provide an indication of likely life expectancy in the report.

Early release on Medical Grounds – Life/indeterminate sentence. PSO 4700 chapter 12 (2006, updated April 2019)

How to make an application on medical grounds – indeterminate sentence

  • Compassionate release medical grounds criteria:
    • ‘the prisoner is suffering from a terminal illness and death is likely to occur very shortly (although there are no set time limits, 3 months may be considered to be an appropriate period for an application to be made to Public Protection Casework Section [PPCS]), or the ISP is bedridden or similarly incapacitated, for example, those paralysed or suffering from a severe stroke AND
    • the risk of re-offending (particularly of a sexual or violent nature) is minimal AND
    • further imprisonment would reduce the prisoner’s life expectancy AND
    • there are adequate arrangements for the prisoner’s care and treatment outside prison AND
    • early release will bring some significant benefit to the prisoner or his/her family.
  • Resource and cost implications of maintaining staff on bed-watch duties at an outside hospital/hospice are not grounds to justify release on compassionate grounds if the criteria set out above are not met. Other examples of cases not meeting the criteria are where conditions are self-induced, for example: following a hunger strike or where a prisoner refuses treatment.
  • Chapter 12 Annex A Compassionate Medical Condition Report form Section 4 is the part of the application that should be completed by the registered medical practitioner. It is important to give as much information about the medical condition as possible, to include other reports e.g. from hospital consultants and to provide an indication of likely life expectancy in the report.
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