Working with doctors Working for patients

 

Introduction

Mr Hartley, who is 76, underwent a gastrectomy and chemotherapy six months ago to treat a malignant stomach ulcer. He had previously been diagnosed with Alzheimer's Disease and his condition has declined significantly over the past year.

Mr Hartley has not responded well to treatment, and has been re-admitted to hospital as an emergency with nausea, abdominal pain and distension. Dr Pascoe has carried out an examination and investigations and is discussing the situation with her consultant, Dr Graham.

Dr Pascoe

Dr Pascoe

There's significant inflammation and probably blockage of the small bowel and evidence of bacterial overgrowth.

Dr Graham

Dr Graham

We might have to consider surgery, then. How is Mr Hartley now? Were you able to talk to him?

Dr Pascoe

Dr Pascoe

Not really. He's intermittently conscious but very confused. His daughter is with him, but he initially didn't recognise her, then mistook her for his late wife. She was terribly upset - says he's not been this bad before. I certainly don't think he's in any state to make a decision for himself.

Dr Graham

Dr Graham

Well this decision won't wait very long. His condition is deteriorating rapidly and if he gets much weaker, surgery won't be an option. We need to consider the potential benefits of surgery with the burdens and risks for Mr Hartley at this stage. If he doesn't have capacity to decide, we'll have to talk to his daughter, Is that her waiting outside?

Dr Pascoe

Dr Graham

Well, I don't think most of our patients relish the idea of coming back for further treatment straight after surgery. We'd need to know more about what he had in mind.

Dr Graham

Dr Pascoe

Here it is, you see? 'Talked to Mr Hartley and his daughter about prognosis and upcoming discharge home. Mr Hartley said that he doesn't want any more operations. Comment that the anaesthetic had made him feel more confused than the dementia, and he didn't want to be "mucked about with" any more. If the treatments wouldn't make him better and he didn't have long to go, what was the point of having them?'

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

A

Consider whether Mr Hartley's refusal of treatment, as recorded in the notes, might be valid and applicable to his present situation?

B

Ask Mr Hartley's daughter whether he has ever discussed with her his wishes about his future treatment?

C

Decide on the basis of the record that Mr Hartley has refused any more active treatment and consider other options to treat him and manage his symptoms?

Dr Pascoe

See what the doctor did

After looking at the medical records and talking to Mr Hartley's daughter, Dr Pascoe concludes that Mr Hartley's refusal of further surgery, while an honest expression of his wishes, is not binding. This is because his statement was too general to be applicable to his present circumstances and there is reason to believe that at the time he made it he did not understand the implications of refusing further surgery.

References

67. Some patients worry that towards the end of their life they may be given medical treatments that they do not want. So they may want to make their wishes clear about particular treatments in circumstances that might arise in the course of their future care. When discussing any proposed advance refusal, you should explain to the patient how such refusals would be taken into account if they go on to lose capacity to make decisions about their care.

68. If a patient lacks capacity and information about a written or verbal advance refusal of treatment is recorded in their notes or is otherwise brought to your attention, you must bear in mind that valid and applicable advance refusals must be respected. A valid advance refusal that is clearly applicable to the patient's present circumstances will be legally binding in England and Wales (unless it relates to life-prolonging treatment, in which case further legal criteria must be met).1 Valid and applicable advance refusals are potentially binding in Scotland2 and Northern Ireland3 although this has not yet been tested in the courts.1 The code of practice supporting the Mental Capacity Act, which uses the legal term 'advance decision', sets out detailed criteria that determine when advance decisions about life-prolonging treatments are legally binding - see the legal annex.2 The code of practice supporting the Adults with Incapacity (Scotland) Act 2000, which uses the legal term 'advance directive', gives advice on their legal status and how advance directives should be taken into account in decisions about treatment.3 In Northern Ireland there is no statutory provision or case law covering advance refusals, but it is likely that the principles established in English case law precedents would be followed.

68. If a patient lacks capacity and information about a written or verbal advance refusal of treatment is recorded in their notes or is otherwise brought to your attention, you must bear in mind that valid and applicable advance refusals must be respected. A valid advance refusal that is clearly applicable to the patient's present circumstances will be legally binding in England and Wales (unless it relates to life-prolonging treatment, in which case further legal criteria must be met).1 Valid and applicable advance refusals are potentially binding in Scotland2 and Northern Ireland,3 although this has not yet been tested in the courts.1 The code of practice supporting the Mental Capacity Act, which uses the legal term 'advance decision', sets out detailed criteria that determine when advance decisions about life-prolonging treatments are legally binding - see the legal annex.2 The code of practice supporting the Adults with Incapacity (Scotland) Act 2000, which uses the legal term 'advance directive', gives advice on their legal status and how advance directives should be taken into account in decisions about treatment.3 In Northern Ireland there is no statutory provision or case law covering advance refusals, but it is likely that the principles established in English case law precedents would be followed.

69. Written and verbal advance refusals of treatment that are not legally binding, should be taken into account as evidence of the person's wishes when you are assessing whether a particular treatment would be of overall benefit to them.

70. If you are the clinician with lead responsibility for the patient's care, you should assess both the validity and applicability of any advance refusal of treatment that is recorded in the notes, or that has otherwise been brought to your attention. The factors you should consider are different in each of the the four UK countries, reflecting differences in the legal framework (see the legal annex). However, in relation to validity, the main considerations are that:
a. the patient was an adult when the decision was made (16 years old or over in Scotland, 18 years old or over in England, Wales and Northern Ireland). b. the patient had capacity to make the decision at the time it was made (UK wide).
c. the patient was not subject to undue influence in making the decision (UK wide).
d. the patient made the decision on the basis of adequate information about the implications of their choice (UK wide).
e. if the decision relates to treatment that may prolong life it must be in writing, signed and witnessed, and include a statement that it is to apply even if the patient's life is at stake (England and Wales only ).
f. the decision has not been withdrawn by the patient (UK wide).
g. the patient has not appointed an attorney, since the decision was made, to make such decisions on their behalf (England, Wales and Scotland).
h more recent actions or decisions of the patient are clearly inconsistent with the terms of their earlier decision, or in some way indicate they may have changed their mind.

71. In relation to judgements about applicability, the following considerations apply across the UK:
a. whether the decision is clearly applicable to the patient's current circumstances, clinical situation and the particular treatment or treatments about which a decision is needed.
b. whether the decision specifies particular circumstances in which the refusal of treatment should not apply.
c. how long ago the decision was made and whether it has been reviewed or updated. (This may also be a factor in assessing validity.)
d. whether there are reasonable grounds for believing that circumstances exist which the patient did not anticipate and which would have affected their decision if anticipated, for example any relevant clinical developments or changes in the patient's personal circumstances since the decision was made

72. Advance refusals of treatment often do not come to light until a patient has lost capacity. In such cases, you should start from a presumption that the patient had capacity when the decision was made, unless there are grounds to believe otherwise.

73. If there is doubt or disagreement about the validity or applicability of an advance refusal of treatment, you should make further enquiries (if time permits) and seek a ruling from the court if necessary. In an emergency, if there is no time to investigate further, the presumption should be in favour of providing treatment, if it has a realistic chance of prolonging life, improving the patient's condition, or managing their symptoms.

74. If it is agreed, by you and those caring for the patient, that an advance refusal of treatment is invalid or not applicable, the reasons for reaching this view should be documented.
(Treatment and care towards the end of life: good practice in decision making, paragraphs 67 - 74)