Working with doctors Working for patients

 

Introduction

Mr Hartley is 75 years old. He was diagnosed with Alzheimer's nearly a year ago. He currently lives independently but his condition has begun to deteriorate in the last six months, and his daughter, Clementine, is concerned about his future care.

Mr Hartley has come to see his GP, Dr Singh, with his daughter Clementine. He has been suffering stomach pain for several weeks which has recently worsened. Dr Singh has carried out a physical examination.

Dr Singh

Dr Singh

I think we're going to need to refer you for further investigation. How have you been coping since our last appointment, Mr Hartley?

Mr Hartley

Mr Hartley

I don't want to go into hospital...

Clementine

Clementine

He's in a lot of pain, aren't you, Dad? He's hardly sleeping at night which isn't helping with his state of mind, of course.

Dr Singh

Dr Singh

Well we can have a look at your medication and see if there's anything more we could do for the pain. In the circumstances I think it would be best if I refer you for an ultrasound scan to try and find out what's causing the pain.

Mr Hartley

Mr Hartley

I don't want to go into hospital!

Clementine

Clementine

He's been terrified of hospitals since mum died last year. But we've got to find out what's wrong, Dad - it might be something really simple, isn't that right doctor? We'll have the referral please.

Dr Singh

Dr Singh

It's a very simple investigation, Mr Hartley: you should be in and out in a couple of hours at the most.

Mr Hartley

Mr Hartley

I'd rather just stay at home. The pain's not too bad. It'll go...

Clementine

Clementine

Oh Dad you know that's not true! You hardly slept at all last night. You just don't remember. Make the referral please doctor. I'll make sure he goes to the appointment.

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

A

Refer Mr Hartley for the ultrasound scan with his daughter's consent?

B

Politely ask Clementine to leave the consulting room so that he can talk to Mr Hartley alone to establish what his wishes might be, and whether he has capacity to consent to the referral?

C

Decide Mr Hartley - because of his Alzheimer's - does not have capacity to give consent for the referral and refer him for the ultrasound scan because it would be in his best interests?

Dr Singh

See what the doctor did

Dr Singh politely explains to Clementine that he really needs to hear from her father himself about what he wants. Mr Hartley is initially a little confused about what is proposed, and upset about the idea of going to hospital. However, Dr Singh decides that - with some extra support - Mr Hartley does have capacity to decide whether or not to have the ultrasound scan, and manages to persuade him that it would be in his best interests. Mr Hartley agrees to the referral.

References

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)

27. Patients need relevant information 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.

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.

29. You should make sure that reasonable adjustments 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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, paragraphs 27-39)

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.

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.

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.

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.

86. If the patient may regain capacity and the decision can be delayed, you must consider this.
(Decision making and consent, paragraphs 82-86)