Is it time to put families back in charge?
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A personal view from Dr Ros Jones, retired consultant paediatrician
Two weeks ago, a 19-year-old young woman lay in a hospital bed with a court injunction in place that prevented her from giving her own name in a newspaper article. She described being in “a race against time to escape from this system and the certain death it wishes to impose on me.” Known only as ST, she died a few days later. After she died, her grieving family had to go back to court to get permission to speak her name. Her family spoke with eloquence and dignity on the steps of the court after the hearing. It is hard to contemplate how a liberal democratic country has reached this situation. Court and medical overreach is nothing new but this case seems to have plumbed new depths.
The young lady in question was Sudiksha Thirumalesh, who had a rare mitochondrial disorder and whose condition had deteriorated last year. She had severe muscle weakness, necessitating mechanical ventilation but this was through a tracheostomy and she was fully conscious and able to communicate. The possibility had been raised of her receiving treatment abroad in either US or Canada but it appears that her NHS doctors thought this would be futile and they sought approval from the Court of Protection for moving her to ‘palliative care’. The treatment she sought is still experimental but some successes have been reported for related mitochondrial disorders.
The judgement makes chilling reading. Right from paragraph 2 of the ruling it stated: “Her treating clinicians are keenly aware of the need to involve ST as far as possible in how she would wish to be cared for and what steps might be taken to ensure that her last days or weeks of life were as comfortable and pain-free as possible. In preserving respect for her personal autonomy to make these choices, they have met with a fundamental obstacle which, on the case advanced by the Trust, is her apparent refusal or inability to accept that her disease will result in her early, if not imminent, death. It is that inability, or “delusion”, which the Trust relies on as rendering her incapacitous to make decisions for herself.”
However, a consultant psychiatrist appointed by the court “found her to be “less tired, more communicative, engaging well”. He discussed with ST her illness and current condition as she saw it. She expressed a wish to have further consultation with different doctors. On balance, he found her to be “open to discussion and reflective and capable of listening, absorbing information given and form[ing] her opinion”. During the course of his oral evidence, Dr D confirmed that he found no signs or evidence of mental illness or any impairment of ST’s mind or brain.” A second psychiatrist, Dr C, interviewed her. “In relation to the potential success of nucleoside therapy, ST had been fully engaged in the discussion. She told Dr C that she “wanted to die trying to live”. She was quite sure that everything must be tried before she would accept the inevitability of her death. In circumstances where each individual with mitochondrial disease had a different profile, both she and the family believed that there was at least a chance that other doctors with more experience of the disease might offer her some hope although their views differed as to the likely prospects of success. ST herself appeared to recognise that there was an equal prospect of failure as success but she was clear that she should be enabled to take that risk.”
It is worth pausing for a moment to consider the importance of age in decisions around active or palliative treatment. Near the end of a long life, patients will often opt for a gentler route of symptomatic care given the small prospect of potential life gained from a more aggressive approach. However, this approach is inverted for the young. Young children with cancer will rightly take on a very difficult journey for small odds of survival. In fact, it is only because children with low prospects were determined to try experimental therapies that we now have such good treatments for childhood cancers.
The judge in Sudiksha’s case accepted that she had capacity and knew she was dying but wanted active treatment. The judgement however, seems to make the self-fulfilling argument that as Sudiksha didn’t accept her doctors’ view that she was terminally ill, she could not weigh it up in her decision making. “In relation to the concerns raised by the Official Solicitor in this context, I can accept the proposition that an individual who expresses hope that they will survive, or even a belief based on that hope, does not, without more, become incapacitous simply because they disagree with the medical advice they are given. In my judgement in this case, as the evidence demonstrates, ST’s fundamental distrust in, and refusal to accept, the information she is given by her doctors as to the likely timescales of her deterioration, do not simply operate to impair her ability to make a decision. They prevent her from understanding, using and weighing the information in the context of the options available to her in terms of future care planning.”
The doctors’ and the judge’s paternalistic view was that ongoing care was causing needless pain and suffering, but they seem not to have considered the psychological pain and suffering caused by removal of any hope however slender, or that as a competent adult Sudiksha had the right to decide how much pain and suffering she was prepared to face in an attempt to get treatment. By this decision, they stripped her of her bodily autonomy and dignity and condemned her to an even more certain death.
Not only did the courts rule to remove her care but they gagged her. This was not a child. She was an adult with capacity who wanted to speak about her life and death situation and the judge prevented her doing so. Who did the judge think they were protecting?
The family contest that the gagging order effectively prevented them from crowdfunding to pay for experimental treatment, and that repeated court hearings delayed the decision by months, during which time her condition deteriorated making any treatment less likely to be beneficial, and the time frame involved in all this would certainly lend weight to their view.
This is not the first time
If this tragic case rings any bells, one is that of Charlie Gard, who by coincidence had a similar mitochondrial disorder and whose family had also been seeking care in the US from the same specialist six years earlier. Again, their hospital had some discussion with Dr Hirano and the team from Columbia University, who again expressed a willingness to offer experimental treatment to Charlie. No active treatment was available in the UK. Again, the parents were involved in a protracted court case. Unlike Sudiksha, Charlie had brain as well as muscle involvement, and that seems to have been a major factor in deciding against seeking active treatment, the hospital arguing that this might simply give him more protracted suffering. By the time of the final hearing, Charlie’s parents had accepted that the situation was hopeless, but even then the hospital and the courts failed to allow the family’s wishes for Charlie to die peacefully at home or in a hospice. The bizarre argument was that letting Charlie leave intensive care would not be ‘safe’. It was suggested that he could only leave intensive care if he had a round the clock team of intensive care nurses and doctors to look after him and that 24 hours was the most that could be provided.
Having been involved in the care of several children on home ventilation in the past, I find this argument particularly unconvincing, given that the family and the clinicians all acknowledged that Charlie was dying, so if lack of the best care available meant he died a few hours sooner but surrounded by his loving family, would that really not have been in his ‘best interests’?
Archie Battersbee’s family faced similar heartache when the hospital where he was being cared for after hypoxic injury, got a court order to allow his life support to be discontinued. Similarly to Charlie Gard, his family’s preference to have Archie moved to a hospice was ruled out – doctors and courts claimed the move wouldn’t be ‘dignified’; his only option was to die a ‘dignified’ death in hospital.
These three cases have all had the support of the legal team at Christian Concern, who were also involved in the case of a middle-aged Polish man, R.S. who had sustained hypoxic brain damage during a heart attack. The treating hospital applied for and obtained court permission to withdraw fluids and nutrition. Nevertheless, he was not ‘brain dead’ and his family in Poland and indeed the Polish government, were willing to have him moved to Poland for ongoing care. According to Christian concern’s website “Literally, on the day RS passed away, the Polish Ministries of Justice and Health were to have a meeting with their UK counterparts to have the order withdrawing nutrition and hydration stayed while the Polish government sought to have its court order for repatriating RS effectuated. That meeting never took place at the time set and the UK authorities never got back to the Polish ministers as to when it was to take place and why it did not take place before RS died just hours later. Whatever the case, it remains a mystery why the order was not stayed given the UK’s (and the hospital’s) knowledge of the developments in Poland. After all, by failing to do so they knew full well that the result of their inaction would lead to death despite Poland having a legitimate legal and diplomatic basis from [for] bringing him home, and a Constitutional obligation to do so.”
In all these cases, the NHS hospitals have been able to use a top legal team but families contesting these decisions are not entitled to legal aid. The cases have not been about whether or not the NHS should be obliged to provide expensive treatments where the medical opinion is that this would be futile, since in each case the family were seeking to move the patient abroad (or home) for care.
So how commonly do courts become involved in end of life decisions?
Medical ethicists Dominic Wilkinson and Julian Savulescu wrote a long and detailed review of the ethical and legal questions involved. Around 2000 children die each year in paediatric wards or paediatric intensive care units in the UK. For some this will occur during intense efforts to treat a child for an acute illness or injury. But for others, this will occur at the end of a period of treatment where the medical team and the parents agree the end of the road has been reached and a decision is made to withdraw life support. The ethicists said, “Across the country, then, as many as three or four times every day, there are decisions made about life support for children or babies. Those decisions, in the vast majority of cases, are made jointly by families and health professionals. Parents or carers, together with the doctors and nurses looking after the child, come to a shared view that certain types of potentially life-prolonging treatment are not right for the child. That is not to say that these decisions are easy, or are made lightly. Quite the opposite: these are often agonising decisions, made only after much soul searching, and after all other options have been considered and rejected. The point is rather that conflict and disagreement are not an inevitable or even a usual part of end-of-life decision-making for children. In many cases, in most cases, while decisions are difficult, and distressing – they are able to be reached with agreement of all of those caring for the child – both professionals and family.”
“But how often is there disagreement? It is hard to know. One study in the Netherlands interviewed health professionals caring for 147 newborn infants who had died after an end-of-life decision. In about one in ten cases (18 infants), the doctors reported that there had been conflict between the professionals and parents. Many of those cases were ones where the infant was predicted to be severely disabled if they survived. However, in all of the 18 cases, agreement was eventually able to be reached. Sometimes, that was after the parents obtained a second opinion. Sometimes it was after the child’s condition worsened and parents changed their mind.” “A study of neonatal units in London provides some additional insight. They reported the outcome for 68 seriously ill infants, where there were discussions about end of life decisions. In half of these cases (34 babies), parents and professionals reached a decision to stop treatment or not resuscitate after an initial meeting. In the other half, treatment continued, and there were further discussions, often including second opinions. In 16 of these cases there was eventually agreement to limit treatment, while in the other half treatment continued.” (my emphasis)
My personal experience accords with these two papers. It appears from the individual cases outlined above, that approach to the courts is very counterproductive. Certainly in 40 years of paediatric practice, I never sought the courts’ help in removing care, only rarely we went to court in order to treat a child whose parents were refusing care and even that was exceptional. My policy was to continue care as long as that was the wish of the parents. This sometimes meant continuing for a few more days, though in one case we continued ventilating an infant for several months. For an experienced clinician, a decision to withdraw treatment can be distressing but that is part of one’s training, but that same decision pushed onto a parent may haunt them for the rest of their lives as to whether they made the right choice. Indeed I recall a conversation with one set of parents asking that we should make the decision for them, but in a sense they were thereby giving us permission to shoulder the responsibility on their behalf. What I never did was to actively go against parents’ wishes through a court order. We certainly always had a second if not third opinion from other consultants in the team as well as from senior nursing staff and we could discuss any difficult case with a regional specialist or even get them to come and review the child and advise further.
There seems to be a worrying move for hospitals wishing to discontinue treatment and the courts endorsing this position regardless of the family’s wishes, or indeed in Sudiksha’s case even of the wishes of the patient herself. I find myself asking, “when does court-ordered withdrawal of care become euthanasia?”
State overreach regarding place of care
The cases discussed above all involved end of life decisions but another extreme case of a child requiring ongoing treatment involved a dramatic Interpol hunt. Ashya King, was a 5-year-old with a brain tumour, whose parents wished to move him to the Czech Republic for a brain-sparing form of post-operative treatment. They took Ashya out for a walk and then headed straight for the ferry to Spain, where they had an apartment which they wished to sell in order to pay for his treatment in Prague. They were subsequently arrested and briefly imprisoned. A change.org petition garnered a large number of signatories including that of Nick Clegg, the then Deputy Prime Minister and eventually the family went to Prague where Ashya received the planned treatment. Three years later he was still doing well with no tumour recurrence. Again, there was no suggestion that the NHS should have to pay for the parents’ choice of treatment.
In a completely different scenario, but with the same heavy hand of the state, was the extraordinary case of a retired nurse being arrested for trying to take her 97-year-old mother out of her care home. She had pushed past care home staff to go in and hug the old lady, who she had not been allowed to visit for the previous 9 months of Covid lockdowns. At this point she decided to simply take her mother home. The care home staff called the police, who arrived in force to arrest the 73-year-old nurse and forcibly return the 97-year-old to the care home, where the family had already raised safeguarding concerns pertaining to the deterioration in her dementia in the family’s absence. The arrest was videoed by the family and shared on Talk Radio here. The problem hinged around the fact that the family did not have a power of attorney for health only for her finances, and therefore the decision lay with social services. It transpired that Mrs Thornborough had been placed under a ‘Deprivation of Liberty Safeguards’ (DoLS) order, without the family even being informed. It took a further six weeks for the family to be ‘allowed’ to take her home.
The refusal by some care homes to allow visitors is still ongoing as covid cases return this autumn, though how visitors pose a risk to residents in a home which already has a case of covid is unclear.
It is high time we return to basic medical ethics. Adults with capacity are entitled to bodily autonomy and freedom of speech. For those who lack capacity, the default position should be that their family are the most likely to have their best interests at heart. It is one thing for the State to decline to pay for ongoing expensive treatments which experts consider futile, but quite another to deny a patient the right to pay or fund raise for treatment which other experts consider hold out some even slim hope.
State overreach has gone far too far.