Treatment and care towards the end of life: good practice in decision making

Legal annex

About this legal annex

This legal annex sets out some of the key statutory legislation and case law that affects treatment decisions and care towards the end of life that relates to adults (with and without capacity to make their own decisions), neonates, children and young people.

This annex is not intended to be a comprehensive statement of the law or list of relevant legislation and case law, nor is it a substitute for independent, up-to-date legal advice. It is for reference purposes only. Doctors are expected to keep up to date with and follow our guidance and the law.

This guidance may be read in conjunction with the GMC guidance ‘Decision making and consent (2020).

Statutory legislation

Mental Capacity - England and Wales

Mental Capacity Act 2005

This Act provides a legal framework for making decisions on behalf of people aged 16 or over who lack capacity to make decisions for themselves. It clarifies:

  • who can make decisions, including decisions about medical care and treatment, for people who are unable to decide for themselves; and
  • how these decisions should be made.

Doctors and other healthcare professionals must refer to the Mental Capacity Act Code of Practice, which explains how the Act should work on a daily basis and sets out the steps that those using and interpreting it should follow when:

  • assessing a person’s capacity; and
  • reaching a decision in the best interests of a person who does not have capacity.

Links and downloads

Mental Capacity - Scotland

Adults with Incapacity (Scotland) Act 2000

This Act provides ways to help safeguard the welfare of people aged 16 and over who lack the capacity to make some or all decisions for themselves, because of a mental disorder or inability to communicate. It also allows other people to make decisions on their behalf. 

The Act sets out the principles that must be applied when making decisions about the needs of adults who lack capacity, including in relation to healthcare. 

The Act is supported by Codes of Practice, which set out guidance for those acting under the legislation, including doctors and other healthcare professionals who are treating adults with incapacity. Part 5 of the code of practice covers decisions about medical treatment and research.

Links and downloads

Mental Capacity - Northern Ireland

Decisions about capacity and treatment and care when people lack capacity are currently considered by reference to the common law in Northern Ireland.

Mental Capacity Act (NI) 2016

The Mental Capacity Act (Northern Ireland) 2016 is not yet fully in force. Once it is in force, the Act will provide a single legal framework for both mental health and capacity issues. It will set out the principles for making decisions on behalf of people aged 16 or over who lack capacity to make decisions themselves, including the safeguards that must be put in place.

Links and downloads

Organ and tissue donation

The Human Tissue Act 2004 and Human Tissue (Scotland) Act 2006 govern organ and tissue donation in the UK. In England, Scotland and Wales, some patients may fall under a ‘deemed consent’ system where the donation is for transplantation purposes (1). 

The Human Tissue Authority regulates and issues codes of practice on organ and tissue donation for England, Wales and Northern Ireland (2). Scottish ministers have those powers in Scotland. Where donation is a possibility, you must take account of the requirements in relevant legislation. (3)

Links and notes

Human Rights Act 1998

The Human Rights Act 1998 came fully into force across the UK in 2000. The Act incorporates into domestic law the bulk of the rights set out in the European Convention on Human Rights (ECHR). The Act requires all ‘public authorities’, which includes the NHS, to act in accordance with the rights and duties set out in the Act.

Doctors who provide services on behalf of the NHS are required to observe the Act in reaching decisions about individual patients and in relation to other aspects of NHS service delivery.

The ECHR rights that are most relevant to decisions about treatment and care towards the end of a patient’s life are:

  • Article 2: The right to life and positive duty on public authorities to protect life.
  • Article 3: The right to be free from inhuman and degrading treatment.
  • Article 5: The right to security of the person.
  • Article 8: The right to respect for private and family life.
  • Article 9: The right to freedom of thought, conscience and religion.
  • Article 14: The right to be free from discrimination in the enjoyment of these other rights.

The ECHR rights are open to a degree of interpretation, and since 2000 the Act has been used in a number of cases to challenge particular medical decisions. The case law to date confirms that the established ethical principles and obligations that underpin good medical practice are consistent with the rights and duties established under the ECHR.1   It is also clear that doctors should continue to expect greater scrutiny of their decisions, bearing in mind that the Act allows the court to consider both the merits of a particular decision and the decision-making process. So it is of increased importance that decisions are made in a way that is transparent, fair and justifiable, and that greater attention is paid to recording the detail of decisions and the reasons for them.

1

A National Health Trust v D (2000) 55 BMLR 19; NHS Trust A v M and NHS Trust B v H (2000) 58 BMLR 87.

Notification of deaths regulations 2019

These Regulations place a new legal duty on all registered medical practitioners who come to know of a death to ensure it has been reported to a Coroner where any of the circumstances that might trigger the Coroner’s investigatory duties appear to be present.

The Ministry of Justice has published guidance to help medical practitioners understand when they are obliged to report a death to the coroner.

Links and download

Case law

Doctors have a duty in law to protect the life and further the health of patients. A number of legal judgments on withholding and withdrawing treatment, mainly in English courts, have shown that the courts do not consider that protecting life always takes precedence over other considerations. The case law establishes a number of relevant principles. 

Although some of the cases cited are not binding in all UK jurisdictions, they provide guidance for courts throughout the UK. Courts heard under English law have persuasive authority in Scotland and Northern Ireland and are generally followed by the courts.

The summary below is our understanding of the key points. It is not a definitive statement of the case law, and we do not use the same terminology as appears in the court judgments. The endnotes contain the case references.

  • An act by which the doctor’s primary intention2  is to bring about a patient’s death would be unlawful.3  
  • An adult patient who has capacity may decide to refuse treatment even if refusal may result in harm to themselves or in their own death.4   This right applies equally to pregnant women as to other patients, and includes the right to refuse treatment where the treatment is intended to benefit the unborn child.5   Doctors are bound to respect a refusal of treatment from a patient who has capacity and, if they have an objection to the refusal, they have a duty to find another doctor who will carry out the patient’s wishes.6  
  • Life prolonging treatment can lawfully be withheld or withdrawn from a patient who lacks capacity when starting or continuing treatment is not in their best interests.7  
  • There is no obligation to give treatment that is futile or burdensome.8  
  • If an adult patient has lost capacity, a refusal of treatment they made when they had capacity must be respected, provided it is clearly applicable to the present circumstances and there is no reason to believe that the patient had had a change of mind.9  
  • In the case of children or adults who lack capacity to decide, when reaching a view on whether a particular treatment would be more burdensome than beneficial, assessments of the likely quality of life for the patient with or without that treatment may be one of the appropriate considerations.10  
  • The ‘intolerability’ of treatment is not the sole test of whether treatment is in a patient’s best interests. The term ‘best interests’ encompasses medical, emotional and all other factors relevant to the patient’s welfare.11 
  • A patient’s best interests may be interpreted as meaning that a patient should not be subjected to more treatment than is necessary to allow them to die peacefully and with dignity.12 
  • All reasonable steps should be taken to overcome challenges when communicating with, or managing the care of patients with disabilities, to ensure that they are provided with the treatment they need and that would be in the best interests of the patient.13  
  • If clinicians and a child’s family are in fundamental disagreement over the child’s treatment, the views of the court should be sought.14  
  • If a patient asks for a treatment that their doctor has not offered, and the doctor concludes that the treatment will not be clinically appropriate to the patient, the doctor is not obliged to provide it, but they should offer to arrange for a second opinion.15  
  • If clinically assisted nutrition or hydration is necessary to keep a patient alive, the duty of care will normally require the doctor to provide it, if a patient with capacity wishes to receive it.16 
  • Clinically assisted nutrition or hydration may be withheld or withdrawn if the patient does not wish to receive it; or if the patient is dying and the care goals change to palliative care and relief of suffering; or if the patient lacks capacity to decide and it is considered that providing clinically assisted nutrition or hydration would not be in their best interests17 , even where a family member disagrees with the decision to withdraw it18  
  • In the case of patients in a permanent vegetative state (PVS), clinically assisted nutrition or hydration constitutes medical treatment and may be lawfully withdrawn in certain circumstances.19   However, in practice, a court declaration should be obtained in some cases.20 
  • Doctors practising in England and Wales who are considering withdrawing nutrition or hydration from an adult patient in PVS or MCS do not need to approach the courts for a ruling, as long as the following criteria are met:
  • the provisions of the Mental Capacity Act 2005 have been followed 
  • the relevant professional guidance has been observed36 
  • there is agreement as to what is in the best interests of the patient21 
  • Responsibility rests with the doctor to decide which treatments are clinically indicated and should be offered to the patient. The decision to provide treatment should be subject to the patient’s consent if they have capacity or, if they lack capacity, any known views of the patient prior to losing capacity and any views offered by those close to them.22  
  • When the court is asked to reach a view about withholding or withdrawing a treatment, it will have regard to whether what is proposed is in accordance with a responsible body of medical opinion. But the court will determine for itself whether treatment or non-treatment is in the patient’s best interests.23 
  • Unless there are convincing reasons to the contrary, a doctor must consult with an adult patient with capacity about the process that leads to the completion of a DNACPR notice.24  
  • Doctors must consult the carer or appointed representative of patients who are mentally incapacitated before placing DNACPR notices on their files if this is practicable or appropriate25 

In this area, although case law in Scotland and Northern Ireland has not been much developed, generally the courts in Scotland can be expected to follow the English decisions. In Northern Ireland, decisions of the House of Lords are binding on the courts; decisions of the Court of Appeal in England are regarded as highly persuasive; and decisions of the High Court in England are read with interest and often followed.

2

R v Cox (1992) 12 BMLR 38. 

3

For a very rare exception in the case of conjoined twins see Re: A (Children) (Conjoined twins: surgical separation) [2000] 4 All ER 961.

4

Airedale NHS Trust v Bland [1993] 1 All ER 821 at page 860 per Lord Keith and page 866 per Lord Goff. Also Re JT (Adult: Refusal of Medical Treatment) [1998] 1 FLR 48 and Re AK (Medical Treatment: Consent) [2001] 1 FLR 129.

5

St George’s Healthcare Trust v S (No 2). R v Louise Collins & Others, Ex Parte S (No 2) [1993] 3 WLR 936.

6

Re Ms B v a NHS Hospital Trust [2002] EWHC 429 (Fam).

7

Airedale NHS Trust v Bland [1993] 1 All ER 821. 

8

Re J (A Minor) (Wardship: Medical Treatment) [1990] 3 All ER 930. 

9

Airedale NHS Trust v Bland [1993] 1 All ER 821 at page 860 per Lord Keith and page 866 per Lord Goff. Re T (Adult: Refusal of Treatment) [1992] 4 All ER 349 and Re AK (Medical Treatment: Consent) [2001] 1 FLR 129. W Healthcare NHS Trust v H [2005] 1 WLR 834.

10

Re B [1981] 1 WLR 421; Re C (A Minor) [1989] 2 All ER 782; Re J (A Minor) (Wardship: Medical Treatment) [1990] 3 All ER 930; Re R (Adult: Medical Treatment) [1996] 2 FLR 99.

11

Wyatt & Anor v Portsmouth Hospital NHS & Anor [2005] EWCA Civ 1181. Burke v GMC [2005] EWCA Civ 1003. An NHS Trust v MB [2006] EWHC 507 (Fam).

12

An NHS Trust v Ms D [2005] EWHC 2439 (Fam). Burke v GMC [2005] EWCA Civ 1003. 

13

An NHS Trust v S & Ors [2003] EWHC 365 (Fam). 

14

Glass v the United Kingdom (ECHR, 2004).

15

Re J (A Minor) (Child in Care: Medical Treatment) [1992] 2 all ER 614; Burke v GMC [2005] EWCA Civ 1003. 

16

Burke v GMC [2005] EWCA Civ 1003.

17

Burke v GMC [2005] EWCA Civ 1003. NHS Trust v Ms D [2005] EWHC 2439 (Fam).

18

North West London Clinical Commissioning Group and GU [2021] EWCOP 59

19

Airedale NHS Trust v Bland [1993] 1 All ER 821; Law Hospital NHS Trust v Lord Advocate 1996 SLT 848. 

20

Airedale NHS Trust v Bland [1993] 1 All ER 821; Law Hospital NHS Trust v Lord Advocate 1996 SLT 848.

21

An NHS Trust v Y – [2018] UKSC 46

22

Re J (A Minor) (Child in Care: Medical Treatment) [1992] 2 All ER 614.

23

Re A (Male Sterilisation) [2000] FCR 193; and Re S (Adult: Sterilisation) [2000] 2 FLR 389. Health And Social Services Trust v PM & Anor [2007] NIFam 13 (21 December 2007).

24

Tracey v Cambridge University Hospitals NHS Foundation Trust [2014] EWCA Civ 822

25

Winspear v City Hospitals Sunderland NHS Foundation Trust [2016] 2WLR 1089