Consent and Ethics: Adults
Adults without capacity
In England and Wales when a person over the age of 16 years is deemed to be without capacity, they may be treated under The Mental Capacity Act 2005. The Act protects vulnerable people who are unable to make their own decisions by clarifying who can take them in their stead while allowing competent patients to leave instructions regarding their care and wishes should they lose their capacity.
The Act is built on five key principles:
- Presumption of capacity: Every adult has the right to make their own decisions and is presumed to have the capacity to do so unless this can be proven otherwise.
- Empowerment: An individual must be given all appropriate help in understanding what is being proposed, before it is concluded that they lack capacity and be enabled to participate in decision making where they are able.
- Unwise decisions: Individuals may not be declared as being without capacity simply because their decision is considered unwise or contrary to medical advice.
- Best interests: Any decision made on behalf of a person without capacity must be in their 'best interests.'
- The least restrictive action: Any act done to a person without capacity should be the least restrictive of their basic rights and freedoms.
Guidance varies across the UK and whilst the basic principles are similar it is important to refer to this.
Specific application of this guidance is relevant to patients aged 16 and 17 years who lack capacity.
Treatment under the Mental Capacity Act 2005
Provided that a person lacks capacity, the act allows treatment to be given in their 'best interests.' The scope of 'best interests' extends beyond the medical outcomes of an individual treatment; it is vital not to equate 'medical interests' with 'best interests.' Where possible, the person should participate in decision-making as far as they are able. Consideration of a person's previously expressed wishes should be factored into the process as well as any known beliefs or values that the person held which may influence the decision. Where practical, views and information should also be obtained from anyone named by the individual as someone to be consulted, anyone engaged in caring for the individual, anyone with lasting power of attorney or any deputy appointed for the person by the court of protection.
If a person reasonably believes that an individual lacks capacity and that it is in that patient’s best interests to embark on a specific course of action then the treating healthcare professional may proceed safe from liability, unless the action is in direct violation of a previously written Advanced Decision.
Advanced Decisions (previously directives)
An Advanced Decision may be created by anyone over the age of 18 who has capacity to refuse specific treatments in the future should they lose capacity. An Advanced Decision can only extend to refusing a treatment and not compel a doctor to institute a therapy that they believe to be without merit or success. A person with capacity can withdraw an Advanced Decision at any time. An Advanced Decision may extend to refusing life-sustaining treatment, but in these circumstances will only be valid if it is present in writing and specifically applies to the current situation of the patient. In an emergency where there is doubt about the existence, validity or extent of an Advanced Decision, then life-saving treatment should be given until the situation can be clarified.
A patient being treated under the Act may be recruited into research trials if:
- the research is related to their condition
- the trial is therapeutic and is expected to benefit their condition
- the trial has the approval of a research ethics committee
- an appropriate person can act as a representative of the person
- the individual can be withdrawn from the trial should they demonstrate any signs of distress.
Patients may also be recruited into non-therapeutic trials, however the risk to the individual must be negligible and any intrusions must be kept to a minimum.
Lasting Power of Attorney (LPA)
While competent, The Act allows an individual to appoint a person to act as Lasting Power of Attorney (LPA) and make decisions on their behalf should they lose capacity at a later date. An individual may be made LPA for matters of health and welfare, property and financial affairs or both. Only those with LPA for health and welfare have the power to consent to or refuse treatment. One or more persons may be given LPA and it may be joint or severable (each Attorney can act on their own). Lasting LPA is only valid when a person loses capacity. LPA allows the named individual(s) to consent to or refuse non-life-sustaining treatment on behalf of an individual who has lost capacity unless it would contravene an existing Advanced Decision or pertain to a treatment for a mental disorder where the patient is detained under the mental health act. In the case of a treatment deemed to be life-sustaining, the patient must have specified that the person with LPA is authorized to make these decisions separately (found in section 5 of the Lasting Power of Attorney LP1H form). The attorney may also not demand a specific treatment that healthcare professionals do not consider is beneficial or appropriate for the patient’s condition.
The following links explain in more details the appointment, roles and limitations of LPA:
- British Medical Association (BMA) – Power of Attorney
- HM Government – Lasting Power of Attorney overview and documentation
The Court of Protection
The Court of Protection is a specialist court which may sit at any time in any place in England and Wales and deals specifically with decision making for adults without capacity. It has the same powers, rights, and authorities as the High Court. It will determine whether a specific action is lawfully, rule on ethical dilemmas and adjudicate in areas of conflict between healthcare professionals and family members. Where no Lasting Power of Attorney exists, the court may appoint a Deputy to act on behalf of an individual lacking capacity. This Deputy has the same powers as an individual with Lasting Power of Attorney save that they cannot refuse consent to the carrying out of life sustaining treatment and require authorisation from The Court itself to consent to the use of restraint.
Occasionally, conflict may arise in the care of a patient who may lack capacity. This conflict may be due to a difference of opinion as to whether the patient does have decision making capacity or whether a proposed treatment plan is in the patient’s best interests. Many disputes may be resolved through the use of good communication and the second opinion of colleagues. When this is not possible, mediation may offer an acceptable solution to all parties. Beyond this, the Court of Protection serves as a final arbiter.
The Mental Health Act
The Mental Health Act 1983 is a distinct entity from the Mental Capacity Act. The Mental Health Act allows for the detention of a person and treatment without their consent for mental disorders. The Act does not allow for the treatment of physical disorders unless that disorder is thought to arise directly from or be contributing to the patient’s mental disorder. Detention under the Act does also not automatically imply that the patient is incapable of all decision making if they are detained, capacity must be assessed relative to each decision.
Below are some links which focus on the Mental Capacity Act and its role in clinical practice:
- Health Research Authority – Adults unable to consent for themselves
- Social Care Institute for Excellence – The Mental Capacity Act Guide
- British Medical Association (BMA) – Mental capacity toolkit
- Social Care Institute for Excellence – Mental Capacity Act (MCA) e-Learning course
End of Life Decisions in Adults Without Capacity
Decisions around the limitation or withdrawal of therapies and treatment in patients without capacity may be particularly difficult. Further guidance can be found on our