End of life care: References

  1. i The Gold Standards Framework ‘prognostic indicator’ is one example of a tool that helps with end of life prognosis. (Gold Standards Framework Scotland). See also the Northern Ireland Cancer Network (2008) Supportive and palliative care network group.

  2. ii There are many publications on assessing and meeting patients’ palliative care needs. Examples of national guidance include: Changing Gear – guidelines for managing the last days of life in adults (2006), National Council for Palliative Care; Principles of Pain Control in Palliative Care for Adults, Working Party report, Royal College of Physicians of London; Control of Pain in Adults with Cancer, Guideline 106 (2008), Scottish Intercollegiate Guideline Network; Opioids in palliative care: safe and effective prescribing of strong opioids for pain in palliative care of adults (May 2012) NICE;  Clinical practice guidelines for quality palliative care (pdf), National consensus project for quality palliative care (Northern Ireland).

  3. iii For information about patient and carer support and advocacy services, counselling and chaplaincy services and clinical ethics support networks, see the advice and resources listed at National End of Life Care Programme and at PallCareNI.net.

  4. iv Examples of national guidance about responses to resource issues include: Supporting rational local decision making about medicines (and treatments). A handbook of good practice (First edition, Feb 2009), NHS National Prescribing Centre; Guidance on NHS patients who wish to pay for additional private care (March 2009), Department of Health (England).

  5. v Examples of resources that help doctors to address the health inequalities affecting some patient groups include: Equal treatment: closing the gap. Information for practitioners (2006) and Supplement to Good Medical Practice (2007) by the DRC and available from the Equality and Human Rights Commission; Living and dying with dignity – best practice guide to end of life care for people with a learning disability (2009) Mencap. See also the NHS national service frameworks for older people and children and young people.

  6. vi There are various publications setting out the benefits of advance care planning, examples include: Joined up thinking. Joined up care. Increasing access to palliative care for people with life-threatening conditions other than cancer (pdf) (Nov 2006) by the Scottish Partnership for Palliative Care. The four UK governments have published national strategies and action plans to improve access to end of life and palliative care which discuss the role of advance care planning. See the End of Life Care Strategy – Promoting High Quality Care for All Adults at the End of Life (2008) Department of Health, England; Living and Dying Well – A National Action Plan for End of Life Care in Scotland (2008) by the Scottish Government; Report to Minister for Health and Social Services on Palliative Care Services (2008); Living Matters. Dying Matters: A Palliative and End of Life Care Strategy for Adults in Northern Ireland (2010) DHSSPS.

  7. vii A number of reports have been published about the needs and preferences of particular patient groups in relation to end of life treatment and care. Examples include: Dying in older age: reflections and experiences from an older person’s perspective (2005) by Age UK; Ethnicity, Older People and Palliative Care (2006) by National Council for Palliative Care and the Policy Research Institute on Ageing and Ethnicity, London; An ordinary death: the service needs of people with learning disabilities who are dying (2003) by the Foundation for People with Learning Disabilities; Better care. Better lives. Improving outcomes for children and young people and their families living with life-limiting and life-threatening conditions (2008) Department of Health, England.

  8. viii Examples of national guidance on how to approach advance care planning include: Advance care planning: national guidelines (2009) Royal College of Physicians of London; Advance care planning: a guide for health and social care staff (Aug 2008); Ascertaining wishes: a good practice guide. Advance care planning for care homes for older people is available from Advance Care Planning. The BMA has published guidance covering this and other issues in end of life treatment and care in Withholding and withdrawing life-prolonging medical treatment: guidance for decision making (2007).

  9. ix Advice for doctors and patients about making formal records of advance refusals of treatment is available from the End of Life Care Programme website; Justice (England and Wales) and in Scotland Public Guardian Scotland and the Mental Welfare Commission for Scotland. Many patient support organisations also provide advice. The BMA has published guidance for doctors in Advance decisions and proxy decision making in medical treatment and research (2007).

  10. x The Gold Standards Framework is one tool used to improve collaboration among care homes, GPs, primary care teams and specialist palliative care teams, and to reduce the number of admissions to hospital in the last days of life. It is available at Gold Standards Framework and at Gold Standards Framework Scotland. Teams without Walls (2008) is a report by the Royal Colleges of Physicians, Paediatrics and Child Health and GPs with advice on integrating services. See also the Out-of-hours toolkit developed by Macmillan Cancer Care.

  11. xi Collaboration across different health and social care settings may be helped by current or planned introduction of ‘locality registers’ for patients receiving end of life care in England; e-palliative care records in Scotland; and the proposed e-record in Northern Ireland.

  12. xii Structured decision making and review of a patient’s care in the last days of life can be supported by tools such as the Liverpool Care Pathway which is available at The Marie Curie Palliative Care Institute Liverpool and National End of Life Care Programme; and the All Wales Care Pathway for the Last days of Life, Welsh Assembly Government, in Welsh Health Circular (2006) 030.

  13. xiii Patients may have recorded their wishes about organ or tissue donation in the NHS Organ Donor Register held by NHS Blood and Transplant. Guidance on the issues that may be of concern to families can be found in publications such as Donor Family Care Policy (2004) and Organ donation and religious perspectives (2010) by NHS Blood and Transplant.

  14. xiv See publications on Donor Family Care Policy (2004) and Organ donation and religious perspectives (2010), and other guides from NHS Blood and Transplant.

  15. xv See the Human Tissue Act 2004 and Human Tissue (Scotland) Act 2006.

  16. xvi Human Tissue Authority Code of Practice 1: Consent (2009), Code of Practice 2: Donation of solid organs for transplantation (2009) Human Tissue Authority.

  17. xvii The Liverpool Care Pathway is one source of advice on meeting the spiritual and other personal needs of patients and their carers in the last days of life and into bereavement. It is available at National End of Life Care Programme. See also the All Wales Care Pathway for the Last Days of Life. Welsh Assembly Government, in Welsh Health Circular (2006) 030. Advice is also available from the Multi-faith Group for Healthcare Chaplaincy.

  18. xviii Help in supporting bereaved adults and children is available from a number of sources, including the Child Bereavement Charity; Cruse Bereavement Care and Cruse Scotland.

  19. xix Information and guidance on the statutory requirements for completing death and cremation certificates is available from a number of sources including: Home Office Guidance for doctors completing Medical Certificates of Cause of Death in England and Wales (pdf); Ministry of Justice Cremation Regulations Guidance for doctors (2008); Scottish Guidance on completion of medical certificates of the cause of death (Sep 2009). Northern Ireland Guidance on death, stillbirth and cremation certification is available at Department of Health, Social Services and Public Safety Northern Ireland and information for families Registering a death can be found at Northern Ireland Statistics & Research Agency.

  20. xx Comprehensive information for professionals and parents about certifying the death of a baby can be found in Pregnancy, loss and the death of a baby by SANDS, the stillbirth and neonatal death charity. Guidance to support practitioners in speaking to a patient’s family is also available from a range of organisations, including the General Register Offices.

  21. xxi Human Tissue Authority Code of practice 3: Post-mortem examination. The Crown Office and Procurator Fiscal Service (Scotland) advice on post-mortems.A guide to coroners and inquests (pdf Jan 2010).

  22. xxii There are many sources of advice, and examples of national guidelines include: The Management of Babies born extremely preterm at less than 26 weeks of gestation. A framework for clinical practice at the time of birth (pdf) (Oct 2008) British Association of Perinatal Medicine; Nuffield Council on Bioethics Critical care decisions in fetal and neonatal medicine: ethical issues (June 2007).

  23. xiii Examples of national guidelines on end of life treatment and care for children and young people include: Withholding and withdrawing life-sustaining treatment in children. A framework for practice (2nd edition 2004 – currently under review). Royal College of Paediatrics and Child Health . BMA (3rd edition 2007) Withholding and withdrawing life-prolonging medical treatment: guidance for decision making. See Part 7: Decision making by young people with capacity (pp 83-95) and Part 8: Decision making for children and young people who lack capacity (pp 96-108). See also the NHS Toolkit for high quality neonatal services (2009).

  24. xxiv Parent support organisations such as Bliss, Tiny Life and Cerebra publish leaflets and give telephone support. See for example the Bliss leaflet Helping you with intensive care decisions for your baby (2010).

  25. xxv For information about organisations providing advocacy and support for children and parents see Advocating for children (January 2008) by the Royal College of Paediatrics and Child Health. Patient Advice and Liaison services (England) provide support, advice and mediation for children, parents and other carers. Help is available from Community Health Councils (Wales). For information on independent advocacy in Scotland visit Partners in Advocacy .For Northern Ireland children’s advocacy services visit Northern Ireland Commissioner for children and young people. Children First for Health is an NHS online resource to help children and parents share their experiences and get information.

  26. xxvi NICE guideline Nutrition support in adults: oral nutrition support, enteral tube feeding and parenteral nutrition (Feb 2006). The British Association for Parenteral and Enteral Nutrition provides advice on meeting the needs of patients at home and in different healthcare settings. Oral feeding difficulties and dilemmas: A guide to practical care, particularly towards the end of life (Jan 2010) Royal College of Physicians, co-published with the British Society of Gastroenterology.

  27. xxvii An explanation of the different techniques for providing nutrition and hydration by tube or drip can be found in the NICE guideline Nutrition support in adults: oral nutrition support, enteral tube feeding and parenteral nutrition. (Feb 2006). Artificial Nutrition and Hydration: guidance in end of life care for adults. National Council for Palliative Care (2007).

  28. xxviii For a detailed discussion of evidence on the benefits, burdens and risks when nutrition or hydration is provided by drip or tube, refer to Improving Nutritional Care. A joint action plan from the Department of Health and Nutrition Summit stakeholders (October 2007).

  29. xxix Advice for clinicians on when to attempt to resuscitate, and when it is appropriate not to do so, is available from specialist bodies, for example in
    Cardiopulmonary resuscitation – standards for clinical practice and training a joint statement from the Royal College of Anaesthetists, the Royal College of Physicians of London, the Intensive Care Society and the Resuscitation Council (UK); Decisions relating to cardiopulmonary resuscitation. A joint statement from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing (October 2007); Integrated policy on Do Not Attempt Cardio-pulmonary Resuscitation (2010) NHS Scotland.

  30. xxx There are many patient guides on CPR including guidance published by the Resuscitation Council UK which gives details about immediate and advance resuscitation for adults, and about paediatric and newborn life support. A model patient information leaflet (pdf) is available from their website. See also Decisions about resuscitation. Information for patients, their relatives and carers (2010) NHS Scotland.

  31. xxxi The Liverpool Care Pathway is one evidence base for the effectiveness of CPR in the last days of life (available at The Marie Curie Palliative Care Institute Liverpool and National End of Life Care Programme.

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