All care planning is essentially ‘future care planning.’ When helping someone with capacity to make decisions, or reviewing with them their care plan, remember to revisit the person’s rights to make binding advance decisions or give you non-binding statements of their culture and wishes, and, while they retain the capacity to do so, to change those they have made.
This applies to any ADRTs, and any registered lasting powers of attorney, as well as any statement of wishes. You should check that the person is still happy with their decisions whenever the care plan is being re-visited or updated, as long as the person has capacity to do so. We can all change our minds, as long as we have capacity.
No one can know for sure what will happen in the future. But the MCA enables people with capacity to take and keep as much control as possible over their future care. The main ways they can do this if they wish are:
- Make an ADRT to ensure they cannot be given medical treatment they know they would not want, at some time in the future it is suggested and they lack capacity to refuse it.
- Give powers to a trusted person, usually a relative or friend, to consent to or refuse health or care interventions, by creating Lasting Powers of Attorney (LPAs).
- Make statements of wishes and have these included in relevant health and care records. These are not legally binding but, as written evidence of a person’s wishes when they had capacity, they have to be given appropriate weight in decision-making, and guide health and care professionals, if the person should lose capacity in the future.
Has the person made, or do they want to make, an advance decision to refuse treatment (ADRT)? Or change an old one?
Many people hate the thought of decisions about them being made by health or social care professionals who may not share their views or take the time to understand their values or beliefs. Anyone aged 18 or over, who has the capacity to do so, can refuse in advance any specified medical treatment. This refusal of treatment need not be in writing unless it relates to life-sustaining treatment, in which case there are specific rules.
Paid staff, at a suitable level of seniority, should be willing and able to provide information about the process, and ensure that any ADRTs someone does create are on their appropriate records. This is to ensure that they are honoured if in the future the person lacks capacity to make their own decisions to accept or refuse this specific treatment when it is being offered to them.
Care staff must not directly help a person to do this, for example by helping draft wording, or by signing as a witness. This is to avoid accusations of conflict of interest or abuse of position.
How should someone make an advance decision to refuse treatment (ADRT)?
There is quite a bit of law around this; see MCA Code of Practice, Chapter 9.
Key points about ADRTs
- A person must be aged 18 or above, and have capacity, to make an ADRT.
- Nobody has to do this: everyone is at liberty to rely on best interests decision-making by professionals.
- An ADRT can only refuse treatment that is proposed: nobody has the right to demand specific treatment. Nobody can ‘fetter clinical discretion’ by insisting that a doctor give or withhold treatment against their professional opinion.
- An example of an ADRT is that someone may outline situations in which they refuse, in advance, cardio-pulmonary resuscitation (CPR). Senior staff and the person’s relatives must understand that the person has made this decision. They should ensure that it is recorded in the person’s medical records.
- Note that this is different from a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) decision made by medical professionals: a DNACPR decision is only advisory and can be overruled by professionals involved in a situation. An ADRT has the power of a contemporaneous refusal of treatment with capacity and, if valid and applicable, must be obeyed.
- It is possible to make a verbal ADRT but if the intention is to refuse life-sustaining treatment it must be in writing, in the person’s own words, and be signed by them. Also, their signature must be witnessed by another person, and it must contain a specific statement, again in their own words, that the person recognises this might put their life at risk but they want it to apply anyway.
- Myth buster: Many health professionals seem to think, wrongly, that an ADRT must be discussed with a doctor and counter-signed by that doctor, to be valid. This is not true. It is however a good idea for a care provider to assist a person if needed, to discuss their proposed ADRT with their GP or someone else medically qualified, to ensure that it correctly reflects the person’s wishes. The provider should of course do all they can to make sure that relevant people know about it, and that it appears on their medical records and care notes.
When does an ADTR or LPA come into effect?
An ADRT is only valid when treatment is offered, at a time when the person has lost capacity to consent or refuse it. While people have capacity, they must make their own treatment decisions: nobody can consent to or refuse care or treatment on their behalf, even if they hold powers under a health and welfare LPA.
This is different from the position where someone has made a property and finances LPA: it is lawful for the donor to give their attorney(s) the powers to act and make financial decisions while the donor still has capacity, if they so wish. For LPAs see MCA Code of Practice, Chapter 7.
What is the legal status of an advance decision to refuse treatment (ADRT)?
This is a very powerful legal instrument. Provided an ADRT is valid (for detail on what makes it properly made, see MCA Code of Practice, Chapter 9) and applicable to the current circumstances (meaning the person is being offered a treatment that is explicitly refused in the ADRT), it has the same effect as a decision that is made by a person with capacity. Therefore, health and care professionals must follow this decision.
They will be protected from liability if they:
- stop or withhold treatment because they reasonably believe that an advance decision exists and that it is valid and applicable, or
- treat a person because, having taken all practical and appropriate steps to find out if the person has made an ADRT, they do not know, or are not satisfied, that a valid and applicable advance decision exists, or
- give or continue with life-preserving treatment while waiting for a decision from the Court of Protection about whether this ADRT is or is not valid and applicable.
Note that, if an ADRT is both valid and applicable, even the Court has no power to overrule it on any grounds, even if everyone thinks it is unwise.
What should be recorded about an ADTR and how?
The presence of an ADRT must be recorded in the care plan in a way that ensures it cannot be missed; this record must link to a copy of the document, which is signed and witnessed (not by the staff of the care provider) as outlined in the MCA Code of Practice, Chapter 9. Senior staff (those who are likely to be the senior person sometimes on duty within the care provision) must be aware of and understand the contents of an ADRT: this could be recorded in supervision notes.
While a person has capacity to do so, record that, when reviewing care plans or if the person raises this as an issue, you check they are still happy with their care plan when reviewing it; it is up to them to make changes.
If the person changes their mind, with capacity, about an ADTR, what should be done?
A person with capacity can of course decide that their current ADRT no longer expresses their wishes. There are no forms to use in making an ADRT – people are encouraged to express themselves in their own words. But it is important to ‘put the record straight’ wherever the old ADRT has been recorded. Care staff should help them to carry out their current wishes, for example by changing records to reflect the current situation, assisting them to get their GP records changed, and helping the person ensure that any new ADRT is clear about their present wishes and made lawfully (see MCA Code of Practice, Chapter 9). Staff can help by suggesting, if relevant, that the person talks through with their GP the likely effect of their decision, or by showing the person where to find the relevant materials in the Code of Practice. They must take care not to influence the person in making their decision. For example, provider employees must not help with the drafting or witness the person’s signature.