RAO v ROO
Summary
In this unusual case, a husband sought orders in relation to medical treatment in relation to his wife, ROO, who was on palliative care in hospital. She had suffered a stroke in 2008, which had serious consequences (inter alia) that she required nursing care in a home thereafter. In 2012, her condition deteriorated, in circumstances that the husband believed had never been adequately investigated, but considered might arise from the consequences of a malfunctioning shunt. Following a move to a new nursing home in early 2018, her health declined, and she became increasingly resistant to care and regularly refused fluids, food and medication. She was admitted to hospital after her weight had fallen significantly, a diagnosis being made of post-stroke admission. After a period in hospital she was discharged back to the nursing home, but was readmitted shortly thereafter with pneumonia. Attempts to insert a nasogastric tube to assist with nutrition were unsuccessful, although she continued to accept food and drink on occasions orally.
Her husband – acting in person – brought an emergency application in the Court of Protection on the basis that artificial nutrition had been withdrawn and his wife put on palliative care without consultation or agreement, a best interests meeting or an application to the Court of Protection. He sought declarations that: (1) that it was not in best interests to be discharged from hospital in her present condition; (2) that it was in her best interests for her to be taken off palliative care until there had been a full investigation and definitive diagnosis of the cause of her deterioration since 2012; and (3) she be given artificial feeding until she could eat enough to keep her alive.
At an expedited hearing, the Trust invited the court to go beyond the scope of the orders sought by the husband and to make declarations as regards future treatment, in identifying a ceiling of treatment or non-escalation and providing only for palliative care. However, Williams J declined to go down that route having regard to the "seriousness of the issues that were engaged in pursuing such a course and the lack of notice to [the husband] and the limited time available to the court."
The Trust's position was that ROO was suffering from irreversible and progressive vascular dementia, and that she was now in the final stages of her illness which could be a matter of weeks or months but more likely weeks. They do not consider that any further investigations are required to understand her current condition from a neurological perspective. The Trust considered the provision of intravenous nutrition will do nothing to address the underlying condition. If it were provided and weight were gained and it were then withdrawn ROO would simply lose weight again, and that (in fact) weight gain could not assist her to regain the muscle mass she needed to regain organ function. The Trust also identified risks to artificial nutrition, not least that it was likely that ROO would object to the treatment and the resultant higher level of medicalisation that would be involved. The Trust also noted that, as ROO was being provided with antibiotics if necessary, the palliative care described should not be equated to end of life care. The Trust resisted her transfer to another hospital, as she did not need to be an acute medical ward, and would be comfortable and more receptive to her family in the environment of a nursing home.
Williams J summarised his conclusion as to the approach dictated by the MCA in the post-Aintree world thus (at paragraph 35, emphasis in original):
Therefore, a host of matters must all go into the balance when the judge seeks to arrive at his objective assessment of whether this treatment is in this patient's best interests. In particular I must consider the values and beliefs of ROO as well as any views she expressed when she had capacity that shed light on the likely choice she would make if she were able to and what she would have considered relevant or important. Where those views can be ascertained with sufficient certainty they should carry great weight and usually should be followed; as they would be for a person with capacity who did express such views.
Williams J made clear that each of the three questions before the court on the husband's application depended to a significant extent upon whether there was a definitive diagnosis in relation to the cause of ROO's deterioration since 2012. On a detailed analysis, Williams J was clear the medical evidence that her neurological condition was attributable to those causes which took place in 2008/2012 and subsequent further progressive changes compounded by acute events. They did not result from the consequences of a malfunctioning shunt. He was of the clear view that her condition was irreversible and had been in my view fully explored.
In light of this conclusion, the answers to the questions before him became relatively straightforward. Williams J, however, sought to identify ROO's wishes and feelings to assist, although:
- The evidence in relation to ROO's wishes and feelings in relation to the application is very limited. She of course does not currently have capacity. She has not given any advance directive in relation to her treatment and there is nothing in writing elsewhere from her which would indicate what her views would be in respect of the treatment proposed. In respect of what she said to the hospital staff and the indication she gave to Dr Brooke [the hospital had recorded two instances when ROO has said the words 'I want to die'. She also nodded her head when Dr Brooke asked her whether it was true that she wanted to die.] I do not think it's safe to place any reliance on that as her real indication of what she wishes to happen to her. The evidence suggests that at times when she is in a better condition she engages with her children and ROA and takes pleasure from that interaction. She may also still gain pleasure from eating or contemplation. At other times she may have an awareness of her condition and may wonder whether it is worth continuing. In particular if she is feeling unwell she might understandably express a wish to die but I do not think that much, if any, weight can be placed on this in the context of what else is known about ROO. She is described as a fighter, independent, a believer in the circle of life. There are also though indications that while she does not have capacity she is unhappy at intrusive medical treatment or other intrusions into her personal space. She removed the nasogastric tube. She declined medication, food, she does not want a nasogastric tube reinserted. That suggests that she does not welcome further medical intervention, and the more intrusive it is the less she would welcome it. I therefore do not think she would want to be subjected to intrusive treatment which would accompany intravenous feeding. It is clear that an intravenous line would have to be inserted and that it would require intensive medical intervention in terms of monitoring thereafter. I do not consider from what I'm able to glean of her wishes and feelings that she would want this to be undertaken particularly if she knew that the medical evidence was that it would not actually bring any benefit to her. Nor do I consider she would be likely to want to undergo further investigations such as a further lumbar puncture still less an operation when the medical evidence was that it was neither necessary or appropriate. The evidence is that she needed to be sedated for the 2014 lumbar puncture which indicates that she was not comfortable with that.
- Due to the nature of her neurological condition ROO will not recover in a way which will lead to her eating enough to keep her alive. The nature of the progressive vascular dementia that she is suffering from is such that she will sustain loss of appetite and will wish to eat less and less as time passes. That is an inevitable consequence of her condition. There is therefore no prospect of her reaching a position where she can eat enough to keep herself alive in the sense that it appears in the application; namely that she will recover to a position where she will want to and will be able to eat anything approaching a normal diet which would be accompanied by exercise in a way which would sustain her life. Thus having regard in particular to the evidence of Dr Johnston and the guidance on artificial nutrition in patients with dementia there is no benefit to ROO of giving artificial nutrition and nor do I believe she would want to be given it having regard to the intrusive nature of it being administered and the risks of complications which accompany it. I therefore do not consider it to be in ROO's best interests in the circumstances she currently is in to be given artificial feeding by way of intravenous nutrition.
- The medical evidence clearly establishes the nature of ROO's neurological condition. There has been a full investigation and insofar as medical science allows there is a definitive diagnosis. There is no need or purpose in further investigation or attempts to reach an alternative diagnosis. The only alternative identified by ROA namely the malfunctioning shunt has been comprehensively addressed and discounted by a number of doctors including Professor Whitfield. I therefore do not find that it is in ROO's best interests to have further investigations in order to reach an alternative diagnosis. Dr Brooke told me, as I have referred to earlier, that ROO is still being given treatment for her condition. She is not being treated as an end-of-life patient at the current time. She has been given antibiotics and other medication for instance. In that sense she is not on what ROA describes as a palliative care regime. The evidence is that ROO is in a stable condition and fit to be discharged to a nursing home where she would continue to be nursed in a manner appropriate to her deteriorating condition. I therefore conclude that it is not in ROO's best interests for her to be taken off palliative care until there has been a full investigation and definitive diagnosis of the cause of her deterioration since 2012.
- The premise underlying the first order that ROA seeks is that ROO should remain in hospital so that artificial nutrition can be administered and so that further investigations can be undertaken. ROA says that she should remain in hospital albeit being transferred to the North Devon hospital nearer to ROA and her sons. The NHS Trust and Dr Johnston have concluded that there is no purpose to be served in her remaining on an acute medical ward and given my conclusions in respect of artificial nutrition and further neurological investigational treatment, I am in agreement with them. Dr Johnston in particular, having regard to the various guidelines, identified that to maximise the quality of life that ROO has and in particular to maximise the environment in which she takes oral nutrition and is able to interact with people a transfer to a nursing home close to her sons and ROA would appear to be in her best interests. The more relaxed and natural environment of a nursing home would be more conducive to her engagement with her family and other aspects of her life including feeding than the environment of an acute medical ward. I do not therefore agree that it is not in her best interests to be discharged from hospital in her present condition. As matters stand it would appear that her best interests would be met by transfer to a local nursing home.
The outcome of this sad case is perhaps not entirely surprising, although (read also with RW) is a useful contribution to the caselaw on best interests in the context of advanced dementia. However, Williams J was clearly, and rightly, troubled about the fact that the husband in this case was acting as a litigant in person. Whilst he was clearly able to advance his case clearly and cogently, the inequality of arms here was striking – and arguably troubling. One could imagine a compelling argument that where a litigant in person in such a case obtain permission from the court to bring an application (hence filtering out entirely hopeless applications), then they should be eligible for assistance in formulating their case. One can also imagine (sadly) how that argument would fly with the Ministry of Justice…
