This case study looks at what to do when a patient needs urgent treatment, but is not in a state to make a decision themselves. Do you respect their previous wishes, or ask a relative?
The scenario can be viewed as an interactive story on the GMC website here - or you can read it in full below.
Narrator: Clementine's father 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.
Discussion between Dr Pascoe and Dr Graham
Dr Pascoe: There's significant inflammation and probably blockage of the small bowel and evidence of bacterial overgrowth.
Dr Graham: We might have to consider surgery, then. How is Mr Hartley now? Were you able to talk to him?
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: 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: Yes. Last time he was admitted, after the surgery, Mr Hartley kept saying that he never wanted to come back into hospital and go through that again. He was most insistent that I write it down in his notes, so we wouldn't forget.
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 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?'
Should the doctor (Dr Pascoe)…
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?
a. This would be in line with GMC guidance. In making her assessment, Dr Pascoe should have regard to the different legal frameworks that govern decisions about the validity and applicability of advance refusals in the four countries of the UK, particularly in relation to refusals of a treatment which may prolong the patient's life. Even if a refusal is not binding, it can still be taken into account as an expression of the patient's wishes, in considering what treatment would be of overall benefit to them.
b. This might be in line with GMC guidance but Dr Pascoe should be careful to make clear that she is seeking information about Mr Hartley's views and preferences as part of her assessment of whether his verbal refusal is valid and applicable, and not asking Clementine to decide whether surgery should go ahead.
c. This would not be in line with GMC guidance. It is important to distinguish between a comment from a patient unhappy about the possibility of further treatment and a valid and applicable refusal of a specific treatment, or of treatment for a particular condition.
What the doctor did
Narrator: After looking at the medical records and talking to Mr Hartley's daughter, Clementine, 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 that time he made it he did not understand the implications of refusing further surgery.
Treatment and care towards the end of life: good practice in decision making, paragraphs 67 – 74
Acting on advance refusals of treatment
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.
When advance refusals are binding
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). Valid and applicable advance refusals are potentially binding in Scotland and Northern Ireland, although this has not yet been tested in the courts.
Non-binding advance refusals
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.
Assessing the validity of advance refusals
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.
Assessing the applicability of advance refusals
71. In relation to judgements about applicability, the following considerations apply across the UK:
i. 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.
j. whether the decision specifies particular circumstances in which the refusal of treatment should not apply.
k. how long ago the decision was made and whether it has been reviewed or updated. (This may also be a factor in assessing validity.)
l. 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
Doubt or disagreement about the status of advance refusals
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.
This case-study is from the Good Medical Practice in Action section of the GMC websiteCase study - Respecting a patients wishes Case study - Respecting a patients wishes End-of-life care: Urgent surgery needed