The patient’s consent is only valid if the patient is capable of making a rational decision. This is known as ‘capacity’.
A person lacks capacity if they are unable to make a decision for themselves because of an impairment or disturbance in the functioning of the mind or brain. Individuals are considered to be “unable to make a decision” for themselves if they are;
- not able to understand the information relevant to the decision;
- not able to retain that information for the time required to make the decision;
- not able to appreciate the relevance of that information and to use and weigh that information as part of the process of making the decision;
- not able to communicate his or her decision (whether by talking, using sign language or any other means).
The ‘information relevant to the decision’ is any information that would normally be given in the course of obtaining ‘informed consent’ and includes information about the reasonably foreseeable consequences of deciding one way or another, or of failing to make the decision. See informed consent section.
If the patient has capacity, the patient’s decisions must be respected, even though these decisions appear unwise. The following case study is based on a case that came to court in 1994.
Case study: refusing life-saving treatment
During a 7-year prison term for stabbing his girlfriend, C was diagnosed with paranoid schizophrenia and moved to Broadmoor. He had delusions of being a world-famous doctor and also delusions of persecution. While at Broadmoor, he developed gangrene in his foot and referred to a surgeon. The surgeon’s view was that, unless his leg was amputated below the knee, he would die.
C refused to consent to amputation. He said that he would rather die with 2 legs than live with one. After hearing C give evidence, the court ruled that, despite his grandiose delusions, C had capably weighed up the pros and cons of the operation and made a genuine personal choice. In view of his lack of consent, it would be unlawful to carry out the operation.
The presumption of capacity
Patients are presumed to have capacity unless and until it is established that they lack it. For example, nurses should not assume that a patient with Down’s syndrome or with dementia lacks capacity to make a particular decision, but should carry out an assessment and make a record of this assessment.
Capacity is decision-specific
Capacity is decision-specific. A patient may have capacity to make one decision but lack capacity to make another decision. See the case study below.
Case study: patient with dementia, refusal of medication
Sylvia, age 84, is living with dementia. She takes a senna tablet every morning for long-standing constipation. On Monday, she develops a chest infection. The doctor prescribes her an antibiotic. On Tuesday morning, she is willing to take the antibiotic without any argument, believing this to be a ‘tonic’. However, she picks out the Senna tablet and says, ‘Not that one. I went 5 times yesterday.’
Sylvia lacks capacity to make a decision about the antibiotic, since she does not understand its nature and purpose. On the other hand, she clearly understands the nature and purpose of the Senna tablet, and has made an informed choice about whether to take it or not. Therefore, she has capacity to make a decision about the Senna tablet. Her refusal must be respected.
Assessment of capacity - Hard cases
In some cases, it is very hard to decide whether a patient has the capacity to make a decision or not. An example is given in the case study, below:
Case study: personality disorder, refusal of personal care
Archie has a diagnosis of anti-social personality disorder. He has a long history of anti-social behaviour, and a criminal record, including violent and sexual offences. He is of above-average intelligence and has no signs of mental illness. Following a right-sided stroke, he becomes immobile and incontinent.
He is admitted to a care home where he refuses most of the personal care offered. He will remain in a soiled pad for a week or more before permitting the carers to change it. He develops skin problems but will not allow a doctor to examine him. He is articulate about his rights when he refuses care, and appears to understand the issues well.
Archie appears to have capacity to make a decision about his personal care. However, his presentation is complex, and his physical health is suffering. In these circumstances, nurses might seek a psychiatric assessment to help assess Archie’s capacity.
If the conclusion is that Archie has capacity, nursing staff must respect his decision to refuse personal care. However, his behaviour is likely to cause serious problems to staff and other residents. He needs to understand the implications for himself and others if he continues to refuse care. Senior nursing staff should discuss this with him, and consult with his family, if possible, and with multi-disciplinary team, including mental health professionals and a social worker.
They need to consider a safeguarding referral for ‘self-neglect’ and might try to agree a ‘contract’ with Archie, setting out the terms on which he will accept care. If the contract is broken, the home has the right to evict him, though this will always be the last resort.
Providing care or treatment to a patient who lacks capacity
If a patient lacks capacity, healthcare staff may lawfully provide care and treatment without consent, if they assess this to be in the best interests of the patient. The following principles are important when assessing the patient’s best interests:
- Blanket decisions should not be made on the basis of the patient’s diagnosis. The patient’s individual circumstances should always be taken into account.
- A patient who is unable to make a fully informed choice should still be encouraged to participate as fully as possible in his or her care.
- Some patients have ‘fluctuating capacity’. Discussion should take place at the time when the patient is best able to understand the proposed treatment.
- If the patient is likely to recover capacity in the future, then the decision should be postponed, if this is reasonably practicable.
- Where possible, care should be given in a way that is least restrictive of the patient’s liberty.
- Staff should take account of the patient’s previously-expressed wishes, if they are known.
- It is good practice to consult the patient’s relatives and friends when making decisions about the patient’s best interests.
After consulting with others, as above, it is usually for clinicians (not e.g. relatives) to make decisions about the patient’s care. The exception is if a relative has been granted power of attorney for health and welfare or has been appointed as the patient’s deputy.
Case study: care of an unconscious patient
Yusuf is admitted to hospital unconscious. Following a scan, the medical team diagnose a brain haemorrhage, requiring urgent surgery. Following an assessment, the nursing team conclude that he is at risk of pressure sores and requires pressure-area care. When examining him, the junior doctor notices that he would benefit from removal of a mole on his lip––this is benign, but might become malignant in the future.
Clearly Yusuf is incapable of making a decision. He has an immediate and urgent need for neurosurgery and pressure area care. These treatments are in his best interest, can be given without his consent. On the other hand, there is no urgency about removing the mole from his lip. It would be appropriate to postpone this decision until he has had his neurosurgery. If this surgery is successful, he will be able to make the decision for himself.
Case study: dementia, refusal of personal care
On Wednesday, Sylvia (see above) continues to take the antibiotic, believing that this is a tonic. A side-effect of this antibiotic is diarrhoea. In the course of the day, she soils herself, and refuses to allow the nurse to wash her, stating that ‘a peck of dirt did no-one any harm’.
Sylvia still lacks capacity to consent to the antibiotic, and is taking it under a misapprehension. However, it is her best interests to receive it, so the nurses properly continue to give it.
She also lacks capacity to refuse to be washed. This is a serious problem for the nursing staff. It is manifestly unkind to force intimate care upon a resistant patient; this will rarely be in the patient’s best interests. The nurses should seek to provide necessary care in a way that is less restrictive of Sylvia’s liberty.
How to do so will vary from patient to patient. Common strategies include coming back later at a time when Sylvia’s perception of the situation might have changed, or allocating the task to different carers. It is often helpful to consult with a near relative of the patient. For example, it is possible that Sylvia’s daughter will be able to persuade her mother to accept a wash.
The “best interests” of a patient without capacity, and the duty to consult are included in the Mental Capacity Act (Northern Ireland) 2016.