End of life care: Endnotes
1. Persistent vegetative state is also referred to as ‘permanent vegetative state’.
2. ‘Artificial nutrition and hydration’ is the phrase sometimes used in healthcare settings. However, we believe that ‘clinically assisted nutrition and hydration’ is a more accurate description of the use of a drip, a nasogastric tube or a tube surgically implanted into the stomach, to provide nutrition and fluids.
3. ‘Benefit’ as set out in the Adults with Incapacity (Scotland) Act 2000.
4. ‘Best interests’ as set out in the Mental Capacity Act 2005 (in England and Wales) and common law in Northern Ireland.
5. The legal annex provides an explanation of the European Convention rights which are incorporated into the Act and which are most relevant to end of life decisions.
6. Information about this legislation, the supporting codes of practice and related guidance can be found in the legal annex.
7. Additional considerations apply to children and young people who have capacity to decide – see the section on neonates, children and young people at paragraphs 90-108.
8. Advice on children who lack capacity is in the section on neonates, children and young people.
9. Legal proxies include: a person holding a Lasting Power of Attorney (England and Wales) or Welfare Power of Attorney (Scotland), a court-appointed deputy (England and Wales) or a court-appointed guardian or intervener (Scotland). Northern Ireland currently has no provision for appointing legal proxies with power to make healthcare decisions.
10. Powers of attorney must be registered with the Offices of the Public Guardian in England and Wales and Scotland. Information is available on their websites. The role of the various legal proxies is explained in the codes of practice that support the relevant capacity laws – see the legal annex.
11. In these circumstances you will have legal authority to make decisions about treatment, under the Adults with Incapacity (Scotland) Act 2000 (subject to issuing a certificate of incapacity), or the Mental Capacity Act 2005 (England and Wales), or the common law in Northern Ireland. See the legal annex.
12. The ‘carer’ for these purposes means the person supporting the patient and representing their interests in the consultation about their health and what might be needed in terms of any investigations, treatment or care.
13. The term ‘those close to the patient’ means anyone nominated by the patient, close relatives (including parents if the patient is a child), partners and close friends, paid or unpaid carers outside the healthcare team and independent advocates. It may include attorneys for property and financial affairs and other legal proxies, in some circumstances.
14. Who it is appropriate and practical to consult will depend on, for example, a patient’s previous request; what reasonable steps can be taken to consult within the time available before a decision must be made; and any duty to consult or prioritise specific people set out in relevant capacity laws or codes.
15. No one ‘willing or able’ generally means where there is no one close to the patient to consult or those available are unable or feel unable to participate in the decision making. The MCA Code of Practice gives more information.
16. Serious medical treatment is defined in the MCA Code of Practice, where the role of the IMCA is also set out.
17. Good medical practice (2013), paragraphs 31-52.
18. GMC guidance on Raising and acting on concerns about patient safety (2012) provides more detailed advice.
19. Advice should usually be from an experienced colleague outside the team. Advice may be obtained by telephone, if necessary, provided you have given that colleague up-to-date information about the patient’s condition.
20. A second opinion should be from a senior clinician with experience of the patient’s condition but who is not directly involved in the patient’s care. It should be based on an examination of the patient by the clinician.
21. Good medical practice (2013), paragraph 56.
22. The courts will consider whether treatment is in the patient’s ‘best interests’ (England, Wales and Northern Ireland). The courts in Scotland, and the Mental Welfare Commission for Scotland’s Nominated Practitioner, will consider whether treatment is of ‘benefit’ to the patient. See the legal annex.
23. The Mental Capacity Act 2005 (MCA) and the Adults Within Incapacity (Scotland) Act 2000 legislation make provision for adults to grant powers of attorney to make healthcare decisions. Northern Ireland proposes similar legislation. The MCA sets out statutory requirements for making advance refusals of life-prolonging treatments. See the legal annex.
24. The code of practice supporting the Mental Capacity Act 2005, which uses the legal term ‘advance decision’, sets out detailed criteria that determine when advance decisions about life-prolonging treatments are legally binding – see the legal annex.
25. The code of practice supporting the Adults with Incapacity (Scotland) Act 2000, which uses the legal term ‘advance directive’, gives advice on their legal status and how advance directives should be taken into account in decisions about treatment.
26. In Northern Ireland there is no statutory provision or case law covering advance refusals, but it is likely that the principles established in English case law precedents would be followed.
27. These requirements are set out in the MCA and its Code of Practice, Chapter 9.
28. Disclosure of information after a patient’s death is covered at paragraphs 134-138 of the GMC guidance on Confidentiality: good practice in handling patient information.
29. ‘Best interests’ is used here as the term is widely accepted and used across the UK in relation to decisions involving children and young people. It involves weighing the benefits, burdens and risks of treatment, as do decisions about ‘overall benefit’ in the case of adults who lack capacity to decide.
30. ‘Parent’ means anyone holding ‘parental authority’. For details of who can hold parental authority refer to 0-18 years: guidance for all doctors.
31. The offer of food and drink by mouth is part of basic care (as is the offer of washing and pain relief) and must always be offered to patients who are able to swallow without serious risk of choking or aspirating food or drink. Food and drink can be refused by patients at the time it is offered, but an advance refusal of food and drink has no force.
32. Airedale NHS Trust v Bland  1 All ER 821.
33. Additional considerations apply to decisions about clinically assisted nutrition and hydration involving children and young people with capacity (see paragraphs 90-91).
34. General advice on children who lack capacity is in the section on neonates, children and young people. Decisions about clinically assisted nutrition and hydration involving neonates and infants are discussed at paragraph 106.
35. You can discuss the options with your defence organisation or your employer’s legal department. In Northern Ireland, where there is currently no primary legislation or relevant case law pertaining to the jurisdiction, it may be particularly important to do so before acting on decisions.
36. See the guidance on recording and communicating decisions in paragraphs 75-77.