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 another is the Scottish Supportive and Palliative Care Indicators Tool.

  2. ii There are many publications on assessing and meeting patients’ palliative care needs. Examples of national guidance include: Quality standards: end of life care for adults (2011) and Opiods in palliative care (2012) both by the National Institute for Health and Care Excellence; and the Scottish Palliative Care Guidelines (2014).

  3. iii Information about patient and carer support, advocacy and counselling services is available from sources such as the Palliative Care Network; community health councils; Health Watch; Scottish Independent Advocacy Alliance. Information about chaplaincy services is at Healthcare Chaplaincy Faith and Belief Group and about clinical ethics support at UKCEN Clinical Ethics Network.

  4. iv Examples of national guidance about responses to resource issues include: the interim Ethical framework for priority setting and resource allocation (2013); also Leadership and management for all doctors (2012) in paragraphs 84-88.

  5. v Examples of resources that help doctors to address health inequalities include: Human rights in health and social care – new resources by 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 (2008) Mencap; and the Learning Disabilities and Palliative Care Project in Scotland.

  6. vi There are various publications setting out the benefits of advance care planning. 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 Actions for End of Life Care: 2014/16 (2014) NHS England; Living and Dying Well – A National Action Plan for End of Life Care in Scotland (2008); the End of Life Care Delivery Plan for NHS Wales and its partners (2013) by the Welsh Government; and 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) available at Age UK; Palliative and end of life care for Black Asian and Minority Ethnic Groups in the UK (2013) at Marie Curie; Difficult conversations for young adults (2015) at The National Council for Palliative Care; and British Institute of Learning Disabilities resources at bild

  8. viii Examples of national guidance on how to approach advance care planning include: Advance care planning: a guide for health and social care staff (Aug 2008) by the National Council for Palliative Care; British Medical Association guidance in Withholding and withdrawing life-prolonging medical treatment: guidance for decision making (2007); NHS Education for Scotland Advance and Anticipatory Care Planning Toolkit.

  9. ix Advice for doctors and patients about making formal records of advance refusals of treatment is available from many sources. Examples include How to help your patients plan available at Dying Matters; information on the Mental Capacity Act at NHS Choices; the Office of the Public Guardian and the Mental Welfare Commission for Scotland. Many patient support organisations provide advice. The BMA has 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. Other tools are available at Scottish Partnership for Palliative Care.

  11. xi Collaboration across different health and social care settings may be helped by the introduction of ‘locality registers’ and electronic records that identify patients requiring and receiving end of life care such as e-palliative care records in Scotland.

  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 Gold Standards Framework; the Five Priorities for Care as detailed in One chance to get it right, available at GOV.UK and the supporting guide for health and care professionals available at NHS Improving Quality; The All Wales Care Pathway for the Last days of Life (2012), Welsh Government available at NHS Wales; Guidance: Caring for people in the last days and hours of life (2014), Scottish Government; and the DHSSPS circular, Advice to health and social care professionals for the care of the dying person in the final days and hours of life (2014).   

  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 (pdf) (2004) and Organ donation and religious perspectives (2010) by NHS Blood and Transplant.

  14. xiv See publications on Donor Family Care Policy (2004) 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 (2014), Code of Practice 2: Donation of solid organs for transplantation (2014) Human Tissue Authority.

  17. xvii The five priorities for care: guide for health and care professionals (England only) includes advice on bereavement care and is available at NHS Improving Quality. See other resources for care in the last days of life listed in reference xii above. Advice on spiritual and bereavement care is also available from the Healthcare Chaplaincy Faith and Belief Group.

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

  19. xix Information and guidance on the statutory requirements for completing death and cremation certificates is available from a number of sources including: Guidance for doctors completing Medical Certificates of Cause of Death in England and Wales (2010) General Register Office; Ministry of Justice Cremation (England and Wales) Regulations: Guidance for doctors (2012) GOV.UK. In Scotland, information on death certification and cremation will be available on the Support Around Death website. Northern Ireland Guidance on death, stillbirth and cremation certification is available at DHSSPS

  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 (under review) by SANDS, the stillbirth and neonatal death charity. Information to support professionals speaking to a patient’s family is available from other organisations including the General Register Offices; nidirect; National Records of Scotland.  

  21. xxi Human Tissue Authority Code of practice 3: Post-mortem examination. The Crown Office and Procurator Fiscal Service (Scotland) advice on post-mortems. Ministry of Justice Guide to coroner services (2014).

  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 (November 2006).

  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 and Tiny Life 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 2009) by the Royal College of Paediatrics and Child Health. For Northern Ireland children’s advocacy services, visit Northern Ireland Commissioner for Children and Young People (NICCY). Other information about advocacy support is at reference iii above. 

  26. xxvi NICE quality standard: Nutrition support in adults(Nov 2012) NICE. The Malnutrition Universal Screening Tool published by the British Association for Parenteral and Enteral Nutrition gives advice on meeting the needs of patients 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. See also Scottish clinical standards on Food, Fluid and Nutritional Care in Hospitals (2003) available at Health Improvement Scotland.

  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, review 2016).

  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 Malnutrition Matters Meeting Quality Standards in Nutritional Care (2010) by the British Association of Parental and Enteral Nutrition

  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 Quality Standards for Cardiopulmonary resuscitation practice and training (2013) published by the Resuscitation Council. See also: Decisions relating tocardiopulmonary resuscitation. A joint statement from the British Medical Association, the Resuscitation Council and the Royal College of Nursing (2014) available at British Medical Association; Integrated policy on Do Not Attempt Cardio-pulmonary Resuscitation (2010) NHS Scotland. 

  30. xxx Patient guides on CPR include: A model patient information leaflet (under review) published by the Resuscitation Council UK on immediate and advance resuscitation for adults, and paediatric and newborn life support. See also Decisions about resuscitation. Information for patients, their relatives and carers (2010) by NHS Scotland

  31. xxxi The Gold Standards Framework is one evidence base for the effectiveness of CPR in the last day of life. 

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