Advance care planning (summary)
Advance care planning (including end of life discussions, advance statements and advance decisions to refuse treatment) are being promoted as part of the NHS end of life care strategy. Such discussions require great skill and considerable knowledge if they are to provide patients with real choices. Older people, especially those with cognitive impairment, are particularly vulnerable in this context.
The British Geriatrics Society, in conjunction with the Royal College of Physicians and other stakeholder groups, have prepared evidence-based guidelines on advance care planning with special reference to older people. The key recommendations are that discussions should be led sensitively, being aware that many people do not wish to have such discussions thrust upon them, and that the professional leading the discussion has the appropriate knowledge and training to advise the older person.
One specific area of controversy related to advance care planning is the use of advance decisions to refuse treatment (ADRTs). Although these decisions will only be used in a minority of people (no more than 10%), they can cause considerable uncertainty for health professionals faced with patients who have lost capacity but have prepared a draft statement.
An advance refusal of treatment (ADRT) – see section 9.40 and 9.41 of the MCA Code of Practice:
- can only be made by a patient while they still have capacity, but only becomes active when they lose capacity
- only applies to a refusal of medical treatment
- is invalid if any of the following apply:
- the person withdrew the decision while they still had capacity to do so
- after making the advance decision, the person made a Lasting Power of Attorney (LPA) giving an attorney authority to make
- treatment decisions that are the same as those covered by the advance decision
- the person has done something that clearly goes against the advance decision which suggests that they have changed
- their mind.
- is only applicable if it applies to the situation in question and in the current circumstances. An ADRT is not applicable if any of
- the following apply:
- The proposed treatment is not the treatment specified in the advance decision.
- The circumstances are different from those that may have been set out in the advance decision.
- There are reasonable grounds for believing that there have been changes in circumstance, which would have affected the decision if the person had known about them at the time they made the advance decision.
- The ADRT must be in writing if it is for the refusal of life-sustaining treatment, but not for non-life threatening conditions; however, a signed and witnessed document will avoid confusion.
- If an advance decision is not valid or applicable to current circumstances, the healthcare professionals must consider the ADRT as part of their assessment of the person’s best interests if they have reasonable grounds to think it is a true expression of the person’s wishes, and they must not assume that because an advance decision is either invalid or not applicable, they should always provide the specified treatment (including life-sustaining treatment) – they must base this decision on what is in the person’s best interests.
Capacity – see section 4 of the MCA Code of Practice:
- is assumed to be present in all cases
- can be tested using the two stage test
- depends on the decision being made, eg a patient may have capacity for simpler decisions, but not complex issues
- can change with time, and needs to be monitored.
Communication – see section 3 of the MCA Code of Practice:
- Carers have to take all practicable steps to help a patient understand the information and communicate their decision.
- Professionals should take all practicable steps to include the patient in the decision.
The MCA does not have any impact on a professional’s liability should something go wrong, but a professional will not be liable for
an adverse treatment effect if:
- Reasonable steps were taken to establish capacity.
- There was a reasonable belief that the patient lacked capacity.
- The decision was made in the patient’s best interests.
- The treatment was one to which the patient would have given consent if they had capacity.
Personal Welfare Lasting Power of Attorney (LPA) – see section 7 of the MCA Code of Practice:
- must be made while the patient has capacity, but an LPA can act only when the patient lacks capacity to make the required decision
- must act according to the principles of best interests
- only extends to life-sustaining treatment if that was expressly contained in the original application
- only supercedes an advance decision if the LPA was appointed after the advance decisions and the conditions of the LPA cover the same treatment as in the ADRT.
NB Holders of LPA for Property and Affairs have no authority to make health and welfare decisions, but should be consulted as
part of the best interests determination.
Court Appointed Welfare Deputies (CADS) – see section 8 of the MCA Code of Practice:
- may be appointed by the Court of Protection; the Court makes single decisions itself, but deputies may be appointed where a series of decisions are required
- are helpful when a patient’s best interests require a deputy consulting with everyone
- can make decisions on the patient’s behalf, but cannot refuse or consent to life-sustaining treatments
- are subject to the principles of best interests (see above).
Independent Mental Capacity Advocates (IMCAs) – see section 10 of the MCA Code of Practice:
• are part of a new public consultation service for individuals with no other representative
• need only be involved in specific decisions (‘serious’ medical treatments and admissions to hospitals or care homes)
• advise regarding best interests
NB In emergencies it is not necessary to delay the necessary decisions and treatment by waiting for an IMCA’s views.
The court of protection can advise on and resolve difficult problems: www.publicguardian.gov.uk/about
Any professional making decisions on behalf of a person without capacity is required by law to have regard to the Mental Capacity Act