Working with doctors Working for patients

 

Introduction

Shannon Baillie is 27. She has a severe learning disability and has very little speech, but can make herself understood to her mother. Shannon hasn't eaten much for several days and her mother is worried there may be something seriously wrong.

Mrs Baillie has brought Shannon to the surgery to see her GP, Dr Oloko.

Mrs Baillie

Mrs Baillie

I thought it was just that Shannon was feeling a bit under the weather but she's been really agitated for about five days now and she's barely eaten anything. It's just not like her at all.

Dr Oloko

Dr Oloko

Are you drinking water, Shannon?

Mrs Baillie

Mrs Baillie

You have small sips, don't you Shannon? - but then she gets really upset and frantic - I think something must be hurting her.

What should the doctor do...? (Select A,B or C)

A

Prescribe a low-dose tranquiliser and suggest Mrs Baillie waits a couple more days to see if Shannon's behaviour settles down?

B

Ask Mrs Baillie's consent to carry out a physical examination of Shannon?

C

Speak to Shannon to establish whether she has the capacity to consent to a physical examination?

Dr Oloko

See what the doctor did

Dr Oloko explained to Shannon that he needed to examine her to try and find out if anything was causing her discomfort. Shannon, communicating with her mother's help, understood that Dr Oloko wanted to examine her, but not why. Dr Oloko, concluding that Shannon did not have the capacity to make the decision, decided that an examination was a necessary step in assessing Shannon's condition and, with Mrs Baillie's guidance, that it would not cause Shannon distress. Shannon complied with the physical examination with Mrs Baillie's support.

After examination and some further questions, Dr Oloko suspected faecal impaction and felt that a hospital referral for further investigation and treatment if necessary would be appropriate. After discussing the best way of communicating with Shannon, and using the practice materials designed for patients with learning disabilities, Dr Oloko concluded that Shannon did not have the capacity to consent to the proposed course of action. He made a decision based on Shannon's medical needs, taking Mrs Baillie's views about Shannon's preferences into consideration,1 and made the hospital referral.

1. In England and Wales (under the Mental Capacity Act (2005)) and in Northern Ireland (under the Common Law), decisions must be made in a patient's best interests.
In Scotland (under the Adults with Incapacity (Scotland) Act 2000) any medical intervention must benefit the patient. Select the More Guidance tab for links to relevant legislation.

References

You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must:
a. adequately assess the patient's condition, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values. Where necessary, examine the patient.
(Good medical practice, paragraph 15a)

You must treat patients as individuals and respect their dignity and privacy.
(Good medical practice, paragraph 47)

You must give patients the information they want or need to know in a way they can understand. You should make sure that arrangements are made, wherever possible, to meet patients' language and communication needs.
(Good medical practice, paragraph 32)

You must be satisfied that you have consent or other valid authority before you carry out any examination or investigation, provide treatment or involve patients or volunteers in teaching or research.
(Good medical practice, paragraph 17)

27. Patients need relevant information (see paragraph 10) to be shared in a way they can understand and retain, so they can use it to make a decision. To help patients understand and retain relevant information you should:
a. share it in a place and at a time when they are most likely to understand and retain it
b. anticipate whether they are likely to find any of it distressing and, if so, be considerate when sharing it
c. accommodate a patient's wishes if they would like to record the discussion
d. accommodate a patient's wishes if they would like anyone else - a relative, partner, friend, carer or advocate - to be involved in discussions and/or help them make decisions
e. use an interpreter or translation1 service if they have difficulty understanding spoken English
f. share it in a format they prefer - written, audio, translated, pictures or other media or methods
g. give them time and opportunity to consider it before and after making a decision.
(Decision making and consent, paragraph 27)

28. You should be alert to signs that patients may need support to understand and retain the relevant information, use it to make a decision, or communicate that decision to you.
(Decision making and consent, paragraph 28)

29. You should make sure that reasonable adjustments2 are made so that patients with additional needs have enough time and support to understand relevant information and make a decision. In all cases, you must treat patients fairly and not discriminate against them.
(Decision making and consent, paragraph 29)

81. You must start from the presumption that every adult patient has capacity to make decisions about their treatment and care. You must not assume a patient lacks capacity to make a decision solely because of their age, disability, appearance, behaviour, medical condition (including mental illness), beliefs, their apparent inability to communicate, or because they choose an option that you consider unwise.
(Decision making and consent, paragraph 81)

83. A person has capacity if they can do all the following:
a. understand information relevant to the decision in question
b. retain that information
c. use the information to make their decision
d. communicate a decision.
(Decision making and consent, paragraph 83)

30. You must check whether patients have understood the information they have been given, and if they would like more information before making a decision.
(Decision making and consent, paragraph 30)

31. You must be clear about the scope of decisions so that patients understand exactly what they are consenting to. You must not exceed the scope of a patient's consent, except in an emergency.

Agreeing the scope of a patient's consent with them in advance is particularly important if:

a. treatment or care will be provided in stages with opportunities to review and adjust in between
b. different healthcare professionals will provide different parts of the treatment or care
c. there may be opportunity, once an intervention is underway and the patient's decision-making ability is compromised, to carry out another intervention
d. there is significant risk of a specific harm occurring during an intervention, which would present more than one way to proceed.
(Decision making and consent, paragraph 31)

32. For some patients, there are foreseeable circumstances when they will have a choice of options at a time when they might find it more difficult to make decisions - for example because:

a. they may be in pain, confused or afraid
b. their capacity or insight may be impaired by their condition or the effects of an intervention
c. a decision may need to be made quickly so there will be less time for dialogue.
(Decision making and consent, paragraph 32)

33. You should anticipate such circumstances and discuss them with patients in advance if practical, so that when a decision needs to be made patients have already had time and opportunity to consider the relevant information. Discussing a risk of serious harm will be easier to do in advance than in a time-pressured situation when the patient might be in pain, confused or afraid, and the mention of potential serious harm for the first time could be distressing.
(Decision making and consent, paragraph 33)

34. Discussing options in advance doesn't remove the need to have a further dialogue immediately before providing treatment, and at regular intervals as treatment or care progresses. Even if there's a care plan in place, or the patient's made an advance decision, you should still talk to them about the options available in case the options have changed or the patient has changed their mind.
(Decision making and consent, paragraph 34)

35. If a patient has a condition that is likely to impair their capacity as it progresses, you should sensitively encourage them to think about what they might want to happen if they become unable to make healthcare decisions. You should bear in mind that some patients may not be ready to talk about these issues. Such discussions might include:

a. the patient's wishes and fears, their preferences about future options for care, and the values and priorities that influence their decision making
b. any treatment or care the patient might want to refuse, and in what circumstances
c. any interventions that might become necessary in an emergency, such as cardiopulmonary resuscitation (CPR)
d. whether the patient would like anyone else - relatives, friends, carers or representatives - to be involved in decisions about their care.
(Decision making and consent, paragraph 35)

36. A patient may want to nominate someone to make decisions on their behalf if they lose capacity or they may want to make an advance statement about refusing or requesting a particular treatment. In these circumstances, you should let patients know that there are ways to formalise their wishes and suggest that they seek support and independent advice about this.
(Decision making and consent, paragraph 36)

37. You must record a summary of your discussion with the patient about their future care and any decisions they make, including as much detail as practical about the patient's wishes and fears, their preferences about future options for care, and the values and priorities that influence their decision making. If possible, you should make this record while the patient has capacity to review and understand it.
(Decision making and consent, paragraph 37)

38. You should make sure the record of this discussion is flagged and made available to the patient and others involved in their care, so everyone is clear about what has been agreed. Any decision or preference should be easy to access and regularly reviewed.
(Decision making and consent, paragraph 38)

39. If you are giving treatment or care to a patient who is nearing the end of their life, you must follow the guidance in Treatment and care towards the end of life: decision making.
(Decision making and consent, paragraph 39)

82. Assessing capacity is a core clinical skill and doesn't necessarily require specialist input (eg by a psychiatrist). You should be able to draw reasonable conclusions about your patient's capacity during your dialogue with them. You should be alert to signs that patients may lack capacity and must give them all reasonable help and support to make a decision.
(Decision making and consent, paragraph 82)

83. A person has capacity if they can do all the following:

a. understand information relevant to the decision in question
b. retain that information
c. use the information to make their decision
d. communicate a decision.
(Decision making and consent, paragraph 83)

84. If you believe that a patient may lack capacity to make a decision, you must assess their capacity using the test set out in the relevant legislation, taking account of the advice in the relevant guidance. If you find it difficult to judge whether a patient has capacity to make a decision, you should seek support from someone who knows the patient well, for example, another member of the healthcare team or someone close to the patient.
(Decision making and consent, paragraph 84)

85. In complex cases where you believe you're unable to make a judgement, you should seek specialist input from psychiatrists, neurologists, speech and language therapists or liaison nurses. You should also seek specialist input if the patient or someone close to them disagrees with your judgement.
(Decision making and consent, paragraph 85)

86. If the patient may regain capacity and the decision can be delayed, you must consider this.
(Decision making and consent, paragraph 86)