This case-study looks at how you should deal with a family disagreement over the treatment of a relative nearing the end of their life.
The scenario can be viewed as an interactive story on the GMC website here – or you can read it in full below.
Narrator: Dr Pascoe is explaining the severity of her father’s condition to his daughter, Clementine. Clementine wants everything done to keep her father alive. But Dr Pascoe has received a phone call from Mr Hartley’s son, Robert, who has a different view.
Conversation between Clementine and Dr Pascoe
Clementine: Are you saying there’s nothing more you can do for him?
Dr Pascoe: There is always something we can do. But further surgery would carry a high risk. Your father would need intensive care afterwards, and given his confused state, would probably have to be sedated and mechanically ventilated to ensure his stabilisation and prevent him from pulling out the lines and catheters. And I’m afraid that, given the severity of his current condition, even with intensive care he might not survive, or not for very long. We think, all things considered, that it would be preferable to manage his bowel blockage with antibiotics and get an assessment from the palliative care team on how to keep him comfortable.
Clementine: That sounds to me like you’re giving up on him.
Dr Pascoe: Not at all. But we have to consider what treatment would be best for your father in the circumstances. As you know, I’ve just spoken to your brother. I’m not sure how much he has told you?
Clementine: Robert called me last night. He said Dad asked him to make decisions for him if he wasn’t able to himself. Dad never said anything about that to me. Did you tell Robert everything you just told me about the operation?
Dr Pascoe: Yes, I told your brother what I’ve just told you. He said that, the last time he spoke to your father he’d been adamant that he didn’t want things to ‘drag out’ at the end; that he wanted to go peacefully. Robert said he felt sure your father would want just to be kept comfortable at this stage.
Clementine: But Robert’s not here is he? He hasn’t been taking care of Dad day in, day out like I have. It’s not as though Robert has a, what do you call it, power of attorney or anything. Does he? I think I should be making the decisions here.
Should the doctor…(Dr Pascoe)
a. Follow Robert’s advice and arrange for Mr Hartley to be seen by the palliative care team?
b. Accept that Clementine is more up-to-date with Mr Hartley’s condition and wishes, and follow her view about the choice between surgery and the other, less invasive treatment options?
c. Try to persuade Robert and Clementine to talk to each other and come to a decision about their father’s treatment and care?
a. This would not be in line with GMC guidance unless Robert has legal powers to act as proxy decision-maker for Mr Hartley when Mr Hartley loses capacity. It is unclear whether Robert has such powers. In the circumstances, Robert’s views about what Mr Hartley wanted should be given weight but he does not have the final say on what treatment should be arranged. This still rests with Dr Pascoe, the treating doctor.
b. This would not be in line with GMC guidance. While Clementine may be well-placed to say what her father would have wanted, information from other family members should not be excluded, and she should not be given the impression that she is being asked to make the decision herself.
c. This would be in line with GMC guidance, but Dr Pascoe should make clear that the main issue is not which of the two should make a decision, but achieving some communication and consensus about what Mr Hartley would want for himself in the circumstances.
What the doctor did
Narrator: Dr Pascoe reassured Clementine that she would not exclude her from the decision-making process, but explained that she also had a duty to take account of what Robert might know about Mr Hartley’s views and wishes. Dr Pascoe suggested that Robert and Clementine should have a further telephone conversation in private. After the phone call, Clementine conceded that her father would probably not have wanted to be kept going at all costs, whatever she might want for him.
Treatment and care towards the end of life: good practice in decision making, paragraphs 17 – 21
Role of relatives, partners and others close to the patient
17. The people close to a patient can play a significant role in ensuring that the patient receives high-quality care as they near the end of life, in both community and hospital settings. Many parents, other close relatives and partners, as well as paid and unpaid carers, will be involved in discussing issues with a patient, enabling them to make choices, supporting them to communicate their wishes, or participating directly in their treatment and care. In some cases, they may have been granted legal power by the patient, or the court, to make healthcare decisions when the patient lacks capacity to make their own choices.
18. It is important that you and other members of the healthcare team acknowledge the role and responsibilities of people close to the patient. You should make sure, as far as possible, that their needs for support are met and their feelings respected, although the focus of care must remain on the patient.
19. Those close to a patient may want or need information about the patient’s diagnosis and about the likely progression of the condition or disease, in order to help them provide care and recognise and respond to changes in the patient’s condition. If a patient has capacity to make decisions, you should check that they agree to you sharing this information. If a patient lacks capacity to make a decision about sharing information, it is reasonable to assume that, unless they indicate otherwise, they would want those closest to them to be kept informed of relevant information about their general condition and prognosis. (There is more guidance in our booklet on Confidentiality.) You should check whether a patient has nominated someone close to them to be kept informed and consulted about their treatment.
20. When providing information, you must do your best to explain clinical issues in a way the person can understand, and approach difficult or potentially distressing issues about the patient’s prognosis and care with tact and sensitivity. (See paragraphs 33-36 on addressing emotional difficulties and possible sources of support.)
21. When discussing the issues with people who do not have legal authority to make decisions on behalf of a patient who lacks capacity, you should make it clear that their role is to advise the healthcare team about the patient’s known or likely wishes, views and beliefs. You must not give them the impression they are being asked to make the decision.
This case-study is from the Good Medical Practice in Action section of the GMC website
Case study – Resolving a family disagreement over care Case study – Resolving a family disagreement over care End of life care: Family disagreement