Mastectomy against her wishes, family concerns and a Trust penalised for delay

By Celia Kitzinger, 11 December 2023

The woman at the centre of this case (GH) is 52 years old. She’s was diagnosed with breast cancer back in March 2023, but she doesn’t believe she has breast cancer and is refusing all treatment for it. She has a diagnosis of schizoaffective disorder.

I missed the beginning of the hearing, which started shortly after 3pm on 26^th September 2023, because it didn’t appear in the published court lists for that day. This was because Sandwell and West Birmingham Hospitals NHS Trust had made their application for an urgent hearing too late for it to be included in the day’s listings.

Their application was for a declaration that GH lacks capacity to make decisions about breast cancer surgery and that it would be lawful and in her best interests to sedate and anaesthetise her and to perform a right mastectomy and axillary node clearance the following day.

The judge declined to conduct the full hearing under these circumstances and listed the case (COP 14152696) to be heard on 28^th September 2023, which is when I observed it, remotely, before Mr Justice Poole.

The Trust was represented by Conrad Hallin and GH was represented, via her litigation friend the Official Solicitor, by Claire Watson KC.

GH was not in court herself.

The witnesses in court were: Mr Mirza, a consultant breast surgeon; Dr Aziz, a consultant psychiatrist; and GH’s father and son.

The full judgment has been published (GH (Mastectomy: Best Interests: Costs), Re).

Based on observing the hearing as well as reading the judgment, there are three aspects of this case I want to comment on:

(1) Treatment contrary to a person’s wishes

(2) Family views

3) Delay.

1. Treatment contrary to a person’s wishes

The woman at the centre of this case believed that she had “absolute control of her bodily integrity and there are no others who can overrule that” and although she’d been offered the opportunity to talk to the judge she had refused (said Claire Watson KC) asking “who the hell the judge was to force her to have an operation”.

She’d written to her treating surgeon saying she wanted no further conversations about treatment AND no further appointments. She said she’d “rather die” than have surgery.

In principle, as the applicant Trust acknowledged, an adult person of sound mind is entitled to make decisions to refuse treatment even if their life is at risk as a result. This has been settled in law for a long time:

“The principle of self determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so…” (Lord Goff in Airedale NHS Trust v Bland [1993] AC 789)

But two common circumstances in which adults can have treatment imposed on them without their consent are (a) if they are found to lack capacity in relation to that treatment under the Mental Capacity Act 2005, and (b) if they are detained under the Mental Health Act 1983 and the treatment falls within the permissible treatments of s. 63 (or s.58).

This application was brought under the Mental Capacity Act 2005.

The Trust’s position was that GH lacked capacity to make her own decision (ss. 1-3 Mental Capacity Act 2005) and that treatment was in her best interests (s. 4 Mental Capacity Act 2005).

Capacity

The applicant Trust submitted (and the Official Solicitor acting on behalf of GH accepted) that GH lacks capacity to make her own decisions about treatment for breast cancer.

This is because she has delusional beliefs. When GH discussed the breast cancer diagnosis with her doctor, she said that the lump in her breast was due to black magic from a relative or a neighbour and not breast cancer. She believes that all the cancer tests were clear but that the hospital has not disclosed this to her. She believes that wider agencies, including the government and the NHS, are involved in a conspiracy against her so that they don’t have to pay large sums of money she is owed in compensation. These beliefs make it impossible for her to understand and weigh up the consequences of the decision to have or not to have surgery.

And so (in the absence of any valid and applicable advance decision to refuse treatment) it falls to others – in this case, the judge – to make a decision in GH’s best interests.

Best interests

In deciding what is in GH’s best interests, the judge must take into account GH’s values, wishes, feelings and beliefs. She’s been “unwavering” in her insistence that she doesn’t want treatment. Clearly, since she believes she doesn’t have breast cancer, she doesn’t feel any surgery is needed to manage it. (In many cases, there is evidence of what the person would have wanted in this sort of situation when they had capacity to make these sorts of decisions, but in this case nothing was offered, so I assume the family didn’t know.)

But ‘best interests’ goes beyond simply what the person says they want or don’t want, to consider the situation in the round.

There’s the value placed on human life – including Article 2 of the European Convention of Human Rights. One study found the median survival for patients with untreated invasive breast cancer was 2.7 years.

Without surgery there is a high risk of progression to fungating cancer, i.e. the cancer erodes through the skin causing ulceration and pain.

Surgery might save her life but about 40% of people who have her type of cancer do get recurrences – and there are both general risks (bleeding, infection, pulmonary embolism) and risk of complications specific to breast surgery (nerve damage, skin necrosis, shoulder stiffness, and psychological injury due to removal of the breast).

The position of the Official Solicitor at the start of the hearing was that it was a finely balanced case. “The most obvious and significant benefits to GH in undergoing the proposed surgery are the prolongation of her life and the prevention of progression to fungating cancer. However, there are a number of disadvantages… including the likelihood that she will suffer a worsening of her mental health and the risk that the surgery will not be curative”. The Official Solicitor wanted to wait for evidence to be tested in court before stating her position.

The evidence was explored in court via cross-examination of the two witnesses. Much of this is covered in the published judgment. What stood out for me was the detail and specificity of the questions and answers provided. I’ve never had the opportunity for this kind of careful discussion of the pros and cons of treatment when I’ve been faced with my own dilemmas about whether or not to go ahead with a recommended treatment. I’ve felt doctors have simply recited the information required to ensure “informed consent” and then rushed swiftly into reassurance. They’ve been taken aback when I’ve raised the possibility of no treatment. The discussion I witnessed in court represented the gold standard for informed decision-making. It’s very much what I would like for myself when I have to make medical decisions of my own. It’s somewhat ironic that, because I have capacity to make my own decisions, I – unlike GH’s representatives – can’t get access to the experts for long enough to answer with the requisite degree of care and attention.

The dilemma underlying this case is one I have seen many times before in the Court of Protection.

Many protected parties in the Court of Protection say they don’t want the medical intervention that is recommended for them – or (if they can’t communicate verbally) indicate refusal through resisting attempts to deliver the treatment. Sometimes the court finds that it isn’t in their best interests to have treatment – even if they might die as a result.

In other cases, the court rules that even though the person says they don’t want the medical intervention it’s in their best interests to have it anyway. This might involve sedating the person, physical restraint and/or covert medication to enable medical professionals to treat the person against their wishes^[1]. These cases are all very fact-specific. There is no general rule that people who lack capacity to make decisions for themselves should or should not receive treatment that they say they don’t want.

2. Family concerns

It can be very upsetting for families when a much-loved family member is risking death by refusing a medical treatment. Family members may try to persuade or cajole the person who lacks capacity into agreeing to the treatment, and feel dismayed when that doesn’t work. Sometimes the patient will become angry or frustrated with their family – accusing them of siding with the professionals and trying to coerce them into something they don’t want to do.

Introducing the case at the beginning of the hearing, the applicant said “her son didn’t want to be seen to go against her wishes”. GH had been determined to manage her own medical decisions – for example in March 2023, although the son had come along to the clinic with her, GH would not agree to him being involved in the discussion about treatment options and told him to wait outside. Later, the son avoided engaging with professionals, saying that it’s difficult for him to participate in discussions about his mother because she believes he is plotting against her. As a result, GH’s family hadn’t really understood much about the risks and benefits of treatment by the first day of the hearing. Following the short hearing on 26 September 2023 in the urgent applications court, a best interests meeting involving members of GH’s family – her father, son and sister – was convened, and they were given more information, after which they said they supported the proposed treatment plan. In the judgment, Poole J says: “I do understand that GH’s son had previously been reluctant to be involved in any decision-making for fear that his mother would consider him as conspiring against her, but every effort should have been made to involve family members before the urgent application was made” (§43). (The involvement of a person’s family in this way is of course dependent on a firm finding that the patient lacks capacity to make that decision for themselves.)

In the hearing itself, the judge made sure that the family members had the opportunity to ask questions of the two medical witnesses if they wanted to (they said not, because “it was resolved in the best interests meeting”. He checked the son had understood that “the Trust is asking me to authorise treatment … against the wishes of your mother” and asked for his view on this. “Yes”, the son said, “I’ve been listening to all the information and what could happen if she doesn’t have it, and I think it [treatment] is the best course of action”. He agreed that he was “worried about her reaction” but said “I think it’s in her best interests to have surgery, even given that”. GH’s father was very upset (and crying) but he, too, thought it was “best to go ahead with this surgery” – adding “I do feel she will be cooperative with the doctors”. This was also, apparently, her sister’s view – although she wasn’t present in court.

The judge made an oral ruling saying that he was satisfied that it was in GH’s best interests to undergo mastectomy and axillary node clearance and that he would make the declarations sought. Surgery was planned for the following day.

3. Delay – a costs order against the Trust

Somewhere near the beginning of the hearing on 28^th September 2023, the Official Solicitor raised concerns about what she described as the “unexplained and inexcusable delay in bringing this matter to court”.

Given that GH’s general practitioner first “raised a red flag about breast surgery and capacity” back in May 2023, it was “not obvious” (she said) why the application to the Court of Protection was delayed for so many months. Also in May 2023, there was an email from the community psychiatric nurse to the breast surgeon caring for GH relaying advice from the legal team at the mental health trust that the matter would need to be brought to the Court of Protection. Why didn’t that happen until September 2023?

Delay is a concern recurrently addressed by judges in the Court of Protection^[2]. Obstetric cases are so frequently delayed – leaving court decisions about caesarean sections or place of birth until at (or even past) a woman’s expected date of delivery – that guidance has been produced to try to avoid delays (Keehan J in NHS Trust v FG [2014] EWCOP 30).

In this case, delays were occasioned (said the Trust) by a consultant going on long-term sick leave, and by initial uncertainty as to GH’s capacity, difficulties obtaining evidence from busy consultants over the summer vacation period, exacerbated by industrial action by consultants, and by challenges associated with GH living in the community.

The judge was very concerned about the effects of the delay. Here’s what he says in his judgment.

In the present case, the lateness of the application has:

Undermined the role that the OS [Official Solicitor should play in the proceedings. The importance of this should not be overlooked. The OS represents the interests of GH. The OS needs time to consider the evidence, meet GH and ascertain her wishes and views, probe the evidence, ask questions, seek independent expert evidence if necessary, liaise with GH’s family, and form a view of GH’s capacity and best interests. The OS does not have unlimited resources and has responsibilities in many other cases.

Placed the court under considerable pressure to find precious time, on a very urgent basis, to hear the application. There was no opportunity to give directions in relation to evidence other than within a very short period from 26 to 28 September 2023. An application of this kind is very unlikely to be determined within an hour. The urgent applications list will often have six or more cases, sometimes several more, to be heard within the day. If an urgent application can be avoided it should be avoided. This application only became urgent because of the delay in making it.

Risked undermining open justice – this application did not appear on the list on September 2023 because of the lateness of the application. Hence, those who might have wished to observe this important application did not have advance notice of what might have been a substantive hearing on 26 September.

Caused disruption to the surgeons, clinicians, and staff at the Trust because the planned surgery on 27 September 2023 had to be postponed and hastily re-arranged.

Contributed to a delay in treating GH. The need for surgery was known at diagnosis on 2 March 2023. The surgery took place nearly seven months later. A key performance standard for NHS England is for a 62-day period between referral and treatment for cancer (the target being for this standard to be met in 85% of cases). For a person with capacity who had refused adjuvant chemotherapy but consented to surgery (which is effectively the corresponding position for GH following my decisions above) the target date for surgery (the first line of treatment in those circumstances) would therefore have been in late April 2023, about five months before the application was made.

§61 GH (Mastectomy: Best Interests: Costs), Re

The judge made an Order that due to the extra work and undermining effect of the late application, the applicant Trust (Sandwell and West Birmingham Hospitals NHS Trust) must pay 80% of the Official Solicitor’s costs.

I hope this will act as a deterrent to delay in other cases.

Postscript

There’s a postscript to the judgment reporting that the mastectomy was performed early in the week following the hearing. No restraint was required and GH was compliant. The tumour was operable and she’s seemingly recovered well from the operation. There were no signs of any adverse impact on her mental health. The judge wished her well for the future.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 490 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia

End notes

^[1] For some other cases we’ve blogged about involving application to conduct investigations/administer treatment contrary to P’s wishes see these blog posts.

^[2] On delay, see for example: