End of life care: Legal Annex
This annex is not intended to be a comprehensive statement of the law or a list of relevant legislation and case law, nor is it a substitute for up-to-date legal advice.
It is for reference purposes only.
Consent and capacity
The GMC guidance Consent: patients and doctors making decisions together (2008) gives an overview of the statute and case law that affects all treatment decisions and the use of organs and tissue, and that relates to adults (with and without capacity to make their own decisions), neonates, children and young people.
The capacity legislation
The guidance draws special attention to the Mental Capacity Act 2005 (England and Wales) and its Code of Practice, and the Adults with Incapacity (Scotland) Act 2000 and its Code of Practice. The two Acts set out:
Who has legal authority to make decisions on behalf of adults (people aged 16 and over) when they lack capacity to make their own decisions.
How adults can make provision for future decisions by appointing attorneys; by recording statements of their preferences; and by making advance decisions or directives refusing treatment.
Statutory principles that must guide those making decisions on behalf of an adult who lacks capacity.
Requirements for supporting adults who lack capacity or who have impaired capacity to make decisions, including the appointment of independent advocates.
Factors to consider when assessing a person’s capacity to make a particular decision, including their ability to communicate.
Factors to take into account in reaching a judgement about what course of action would be of benefit to the person, or in the person’s best interests, if an adult lacks capacity to decide. This includes advice on how to work with advance statements and advance refusals of treatment.
Statutory safeguards to protect vulnerable adults in relation to, for example, serious medical treatments, research and possible deprivation of their liberty.
Processes for resolving disagreements (statutory requirements in Scotland) and for making referrals to the court, if necessary.
It is important that doctors who work in England, Wales and Scotland are familiar with the statutory principles set out in the capacity legislation as these must be taken into account in health and social care decisions made on behalf of adults who lack capacity. It is also important that doctors are familiar with key requirements in the relevant Act and supporting Code of Practice.
The Mental Capacity Act 2005 Code of Practice is a statutory code that doctors are expected to observe in their day-to-day treatment and care of adults who lack capacity to make a decision. There are details of the Act and Code, and access to training materials and guidance, on the websites of the Department of Health (DH) England, the Welsh Assembly, and Justice. Advice and support in working with the Act and Code in health and social care settings are currently available from Implementation Leads in NHS trusts and health boards. There is additional advice on appointing and working with Independent Mental Capacity Advocates (IMCAs), is available on the websites of Department of Health England or email IMCA@dh.gsi.gov.uk and the Welsh Assembly.
The Adults with Incapacity (Scotland) Act Code of Practice (part 5: decisions about medical treatment and research) provides guidance on applying the Act. Doctors are expected to take this guidance into account in their treatment and care of adults who lack capacity. Details of the Act and Code are available from the Scottish Government. Additional guidance is published by the Mental Welfare Commission which also gives advice on working with the Act and Code.
In Northern Ireland, it is important that doctors are aware of current proposals to introduce in 2011 a draft Bill governing decision making in relation to adults who lack mental capacity and the compulsory treatment of mental health conditions.
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:
(a) Article 2: The right to life and positive duty on public authorities to protect life.
(b) Article 3: The right to be free from inhuman and degrading treatment.
(c) Article 5: The right to security of the person.
(d) Article 8: The right to respect for private and family life.
(e) Article 9: The right to freedom of thought, conscience and religion.
(f) 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.
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. 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 interests.17
- 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.18 However, in practice, a court declaration should be obtained.19
- 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.20
- 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.21
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.