It is believed that up to two million people in England and Wales will, at some point, lack the capacity to make certain decisions for themselves because of illness, injury or disability. Many more will need help to understand their choices and express themselves, or just to put them at ease during a dental examination.
In these situations, dental professionals must tread carefully, balancing respect for patients' confidentiality and independence with the need to determine what treatment is in their best interests. When you do need to involve a family member or other carer, clear and honest communication is always key to establishing their trust and working together to support the patient.
The role of relatives and carers
Relatives and carers can contribute to the dental health of a patient with special needs in a number of ways.
- Accompanying the patient to their appointment and supporting them during their examination and/or treatment. This can help them feel at ease and allow you to focus on your examination and treatment. If the patient has capacity, you should seek their consent before inviting their relative or carer to sit in the treatment room.
- Helping to support the patient's oral health routine between appointments, eg teeth brushing, caring for dentures, spotting signs that the patient is in pain.
- Where a patient does not have capacity, you may need to share information with relatives, friends or carers to enable you to gather relevant information and assess what is in the patient's best interests.
- It is becoming more common for a carer or family member to have legal powers to make health and welfare decisions on behalf of a patient who does not have capacity. This is usually because the patient has given them lasting power of attorney (LPA) although it is also possible for a close relative or friend to be appointed as a deputy by the Court of Protection.
If a patient has special needs, such as a learning disability or dementia, they are likely to benefit from this extra support. But it is still important not to make assumptions about their capacity or second-guess their wishes because of their condition.
The Mental Capacity Act 2005 (and the Adults with Incapacity (Scotland) Act 2000) is clear that every person must be deemed capable of making decisions about dental treatment and consenting to the sharing of their confidential information with others, unless it can be demonstrated otherwise.
When you do need to involve a family member or other carer, clear and honest communication is always key to establishing their trust and working together to support the patient.
Bear in mind too that decisions vary in complexity and a patient's capacity may fluctuate. A mental capacity assessment can only determine whether an individual has an impairment that means they cannot make a decision at the time it needs to be made. On a different occasion, the patient may be able to decide for themselves and should be given the opportunity to be involved in decisions about their care.
The GDC's ethical standards stress that 'you must always consider whether patients are able to make decisions about their care themselves, and avoid making assumptions about a patient's ability to give consent.' However, it recognises that mental capacity is a challenging area and advises dental professionals to refer to the appropriate legislation or seek advice from their dental defence organisation.
When a patient lacks the capacity to make a decision, it is reasonable to enlist the help of their family members or anyone else who might be involved in their care to determine what is in their best interests and least restrictive of the patient's rights and freedom of action.
It is a good idea to check whether a relative or carer already has legal authority - such as an LPA - to make health and welfare decisions on the patient's behalf. If no one has legal responsibility, talk to the patient's next of kin, sharing relevant information when necessary. You should still involve the patient as much as possible in the discussion and be sure to document the whole process in the clinical records.
Ultimately, it is up to you to decide whether a particular procedure is clinically justified, and you are not obliged to provide treatment that you do not believe to be in the patient's best interest, such as where you believe it may cause distress. However, open and honest discussions about the risks and burdens of treatment options can usually help to avoid disputes with relatives and carers.
The extent to which you should involve family members or other carers depends on the patient's wishes, their capacity and the relative's or carers ability to act in the patient's best interests. Nevertheless, it makes sense to develop an understanding with those who are close to a patient with special needs and who are committed to their welfare, as this will make it easier to manage their dental health in the long term.
The following tips should help you make a connection.
- Introduce yourself to the patient's family or carer and explain your role.
- Ask them to tell you about the patient's wishes and priorities when they had capacity. Were they anxious about visiting the dentist, proud of having all their teeth, etc.?
- Bear in mind that full-time carers are at higher risk of depression and ill-health themselves. Listen to their concerns - try not to interrupt or put words into their mouth but offer support and reassurance where you can.
- Many older carers have their own communication needs, such as hearing or language difficulties. Allow extra time and make adjustments as you would for a patient.
- If you need to explain the patient's options, use simple terms and avoid jargon or large amounts of clinical information. Discuss the risks and likely burden of each treatment, including the option of doing nothing.
- If a patient needs treatment under general anaesthetic, explain the risks and possible outcomes - for example, that it might be necessary to carry out more extensive treatment to ensure they are pain-free.
- You should involve the patient as much as possible in the decision-making process, as well as their relatives and/or carer.
- Suggest practical ways they can help, like not giving the patient sugary snacks.
- Set boundaries. For example, explain to a relative or carer that they can help determine whether the patient would have wanted a particular procedure, but that you are not obliged to provide treatment that is not in the patient's best interests.
- If a disagreement arises with family-members or carers over treatment, try to explore their concerns and explain your rationale. It may help to seek a second opinion.
- Ask for feedback. It is useful to know what you can do to make things better for them and others in their situation.