A guide to the Assisted Decision Making (Capacity) Act 2015

It is acknowledged that capacity may fluctuate and a person may have capacity for some decisions but not others.

Dr Mary McCaffery and Dr Ellen Walsh outline the main features of the recently enacted legislation

As doctors, our clinical practice is underpinned by the principle of doing what is best for our patients. In the past, where patients could not engage in complex decision -making, doctors may have adopted the “we know best” approach. This approach is, however, no longer “best practice” following the enactment of Assisted Decision Making (Capacity) Act 2015 (‘the Act’).

The Act clearly defines the framework for clinical decision-making where patients may lack capacity to consent. A person’s ‘will and preferences’ must be ascertained where possible, with decisions reflecting their current and previously expressed wishes.  Relevant parties should be consulted before final decisions are made and the least restrictive option is chosen.

Healthcare professionals must reassess how they approach decision-making capacity and consent for vulnerable individuals. The 2015 legislation places a strong emphasis on supporting patient decision-making and encourages a rights-based approach.

The Act introduces five formal decision-support arrangements:

• Decision-making assistance agreement: This agreement allows a person with full capacity to appoint someone to assist them in understanding, making, and communicating decisions. Decision-making authority is not transferred.

Where a person presents themselves to a healthcare provider as a decision-making representative, it would be good practice for a doctor to request a copy of the agreement. They should ensure that it covers healthcare decisions, relates to the medical decision that has to be made, and has not been revoked.

• Co-decision-making agreement: This is another type of agreement enabling a person to appoint a co-decision-maker to make certain decisions jointly with them. In this situation, the patient has the capacity to make decisions but wishes the support of the named person. Doctors should confirm healthcare decisions are included in the agreement.
• Decision-making representation (DMR) order: Where a person lacks capacity to make decisions, even with support, the court may appoint a DMR to act on their behalf. Again, the authority is not unlimited, and a doctor should ensure that the DMR is authorised to act in relation to healthcare matters. Even in the presence of a DMR, healthcare providers should endeavour to involve the patient where possible. Careful documentation is always vital.
• Enduring power of attorney (EPA): A person with capacity may appoint an attorney to make decisions should they lose capacity in the future. EPAs can include personal welfare, property, and financial decisions. To be valid, the EPA must be registered with the Decision Support Service (DSS).
• Advance healthcare directive (AHD): An AHD enables a person to record treatment preferences for a future time in the event that they lose capacity.

An AHD allows a patient to refuse specific treatments, provided they had capacity when making the directive. However, it cannot request treatment that a doctor considers clinically inappropriate.

Families, healthcare staff, and patients should be aware that being listed as a ‘next of kin’ does not grant authority to make decisions or sign consent on behalf of their relative.

In emergency situations, doctors must rely on professional judgement to provide care in accordance with paragraph 17 of the Medical Council’s Guide to Professional Conduct and Ethics for Registered Medical Practitioners (‘the Guide’).

The DSS, established under the Act, maintains a register of most decision support arrangements, apart from decision-making assistance agreements. Healthcare professionals are among the prescribed groups permitted to search these registers. The DSS also provides useful case studies and comprehensive information leaflets for healthcare providers.

What does capacity mean and how is it assessed?

The Act begins with a presumption of capacity. Capacity is time specific and issue specific. It is acknowledged that capacity may fluctuate and a person may have capacity for some decisions but not others.

 A person lacks decision-making capacity if they cannot:

1. Understand relevant information.
2. Retain that information long enough to make a choice.
3. Weigh up that information to make a decision.
4. Communicate their decision in any form.

Healthcare professionals must provide appropriate assistance to help patients make decisions, if necessary. This may include simplifying information, allowing additional time, or adapting the environment to support understanding and communication.

When completing a capacity assessment, the four areas above must be clearly addressed and documented, together with the assessment date. Any finding of a lack of capacity, should be linked to a medical diagnosis or diagnoses. For example, the conclusion may be that Mr X lacks capacity as a consequence of having Down Syndrome associated with significant intellectual disability and a recent onset of dementia.

Where capacity fluctuates, and was, at the time of an assessment, affected by factors such as medications, alcohol, anaesthesia, or some another situation, this should be documented.

How does the legislation impact doctors?

 Healthcare professionals most frequently engage with the Act through:

• Capacity assessments: This is particularly needed where individuals are entering into co-decision-making agreements, decision-making representation orders or EPAs. Templates for capacity reports and guidance on completion are available through the DSS and HSE websites.
• Documenting decisions: Maintaining clear records of assessments, discussions, and support measures is essential.

• Supporting patients and families through difficult situations: This is especially important where disagreements arise, which can be very challenging. Seeking advice from colleagues or Medical Protection can be beneficial.  
• Signposting families to support organisations: Palliative care services and the Alzheimer’s Society may be helpful sources of support for family members.
• Considering proactive discussion of decision-making arrangements: Such discussion is vital when patients receive a serious diagnosis or approach end-of-life.

Case study

A 72-year-old man, Mr D, has severe heart failure and was admitted to hospital with increased shortness of breath for the third time in six months. He declined resuscitation should he have a cardiac arrest and subsequently made a good recovery.

Following discharge Mr D sees his GP who notes his decision on DNAR in the hospital discharge letter. His GP asks if he would like to find out more about making an advance healthcare directive, explaining the process carefully including the option of appointing a designated healthcare representative whose role is to ensure the terms of the directive are complied with in the future. The doctor provided information on the DSS support and recommended that Mr D seek independent advice.

Mr D is interested in making an advance healthcare directive and wants to appoint his daughter as his designated healthcare representative. He asks his doctor for further information on treatment decisions that he wishes to include in his advance healthcare directive.

The AHD is made, signed, and witnessed. Copies of the directive are placed in his hospital chart and GP records, clearly indicating that the ADH has not yet come into effect as Mr D still has capacity to make his own treatment decisions.

This case demonstrates how a healthcare professional can help to increase awareness and support a patient in making an ADH.

Conclusion

The Act represents a significant shift in healthcare practice, moving from a paternalistic model to a rights-based approach that respects personal autonomy and individual preference.

All doctors, regardless of specialty, should be well versed with the legislation, DSS services, and the Guide.

Armed with this knowledge, doctors are ideally placed to proactively educate patients to make informed choices in relation to their future healthcare while they have capacity.

The legislation requires all healthcare professionals to consider how their approach and clinical practices may need to adapt when supporting patients whose capacity is in question, either now or in the future.