This is a guest post from Katie Gollop QC. Katie is a barrister at Serjeants’ Inn Chambers specialising in healthcare related law. She’s also a Deputy High Court Judge allocated to the Family Division and Court of Protection.

Alert: this blog about Guy’s and St Thomas’ Children’s NHS Foundation Trust v Pippa Knight [2021] EWHC 25 (Fam) is long because I’ve included lots of quotations from the judgment. The judge expresses himself with such directness that his words are much more useful than any gloss from me. A case summary with quotes forms the second half of the blog. The first half is some thoughts from me.

It’s likely that Pippa’s mother will seek a hearing in the Court of Appeal. Any appeal is likely to be considered quickly. [Ed. and we will try an update this post or publish another if that happens].

Thoughts

Why Is This Decision Important?

Because It Explains Harm Without Awareness.

This is the first judgment to provide really clear answers to the issues of principle that were highlighted in Charlie Gard and subsequent cases but which, for many, were not adequately answered:

If this child is so badly damaged that they don’t have any awareness and can’t feel any pain, how it is possible to harm the child? How could more, pain free life be more harmful than death? And why can’t the parents have what they want?

Poole J provides a clear and accessible explanation (quotes below) of how it is that a person who has no pain and no awareness, can nevertheless suffer burdens and harm as a result of their condition and its treatment.

We can expect that part of the judgment to be relied on by healthcare and legal professionals alike on a regular basis.

Expert Evidence On Non-Medical Best Interests

There were difficulties with the expert evidence supporting Pippa’s mother’s case. One expert (Dr. Wallis) presented theories about the home care proposal in oral evidence only, and so late that others could not respond; he also misunderstood the law. Another (Dr Playfor) had had completely changed his viewpoint since last giving evidence expert evidence in a similar case. But that process of re-thinking left him unable to explain the apparent inconsistency in his opinion that the innate dignity of Pippa’s life meant that it would not be in her best interests to be kept alive on PICU (Intensive Care Unit), but would be in her best interests to be kept alive at home.

Medical experts can run into difficulties when they are drawn into giving an opinion on the non-medical aspects of best interests. Given that best interests is an issue for the judge and the judge alone, it is reasonable to ask : should experts even be venturing into that arena?

Poole J explained where their evidence could help. He welcomed the views of all of the healthcare professionals, treating and expert, on all matters touching on Pippa’s best interests “because their experience in caring for very ill children gives them considerable insight into how children deal with adversity, how even very disabled children interact with their families, and what a child is like when at the very edge of life.” That said, he gave more weight to their views on medical, rather than non-medical, matters.

Poole J has already provided useful guidance about how expert reports on capacity can best assist the Court of Protection (see paragraphs 27-28 of AMDC v AG and CI). To avoid some of the expert evidence difficulties that arose in Pippa’s case, it might help if, at the directions stage, judges gave directions which identified any non-medical matters to be considered by medical experts.

Persistent Vegetative State – should this case have come to court?

The judge referred to the fact that in law, there are two strands of thought about whether, when the patient is in the persistent vegetative state (PVS), the court can or should balance the benefits and burdens when considering best interests. One strand says that in PVS, there is nothing to balance because treatment can provide no benefit. The other holds that even though treatment may provide no medical benefit, there are other factors that still need to be weighed.

In An NHS Trust v Y [2018] UKSC 46, the Supreme Court said that if at the end of a proper medical process (where second opinions are obtained and guidance followed) there is still a difference of medical opinion or lack of agreement from those interested in the patient’s welfare a court application could and should be made. Here, Pippa’s mother did not agree with the Trust’s treatment plan and expert opinion on that plan was divided. The Trust had to make an application.

The application was not made on the basis that if the judge found that Pippa was in a PVS (as he did) then she had no interests to be balanced. Instead, all parties asked the judge to look at Pippa’s best interests in their widest sense notwithstanding the diagnosis. Therefore, the judge did not, and was not required to say, which strand of legal thinking he preferred.

If Pippa’s mother does appeal, the Court of Appeal is highly unlikely to say anything about whether there is a best interests determination to be made when a child is in PVS, however helpful the healthcare system might find such guidance.

Resources

All cases other than that concerning Tafida Raqeeb, have been decided on the basis that the issue of whether it is in a child’s best interests to be provided with life-sustaining treatment, is resources blind: the question of who pays is immaterial. The judge hearing Tafida Raqeeb’s case was provided with written evidence from private funders, confirmed in oral evidence by her mother, that private funding for all of her future care needs had been secured. A major part of the family’s case that further ventilation and treatment was in her best interests, was that that treatment would be funded privately and not by the UK taxpayer. When deciding that continued treatment was in her best interests, the judge repeatedly referred to the fact that the treatment was “fully funded”. In contrast, Pippa would be reliant on the NHS.

Pippa has been in a London PICU since January 2019 and in the PVS for over a year. It follows that she has been an in-patient on PICU and in the PVS throughout the pandemic. Last year, and again in the last few days, there has been unparalleled pressure on ICU resources (beds, oxygen and staff) with hospitals being close to overwhelmed by patients in dire need. For the first time ever in the NHS, hospitals have had to think about how to prioritise patients for ICU resource allocation because of possible shortages. PICU staff have been transfer to adult ICU to help cope with demand.

This context is not mentioned in Poole J’s decision (as one would expect) and yet is hard to avoid for anyone reading his judgment now. Home care would involve a team of between 12 and 15 qualified nurses working in teams of 2 and being present 24/7. The judge said that it would be “difficult to recruit such a team”. He noted that the CCG was aware of Pippa but had not started investigating and had made no funding offer. He said it was a “gap in the evidence” that no-one had made any assessment of whether “her home is suitable to accommodate her, her mother and brother, all the equipment needed, and a team of nurses who would need space and facilities of their own in order to function effectively.” A tracheostomy would be an essential part of any transition home. But the applicant Trust was unwilling to perform a tracheostomy and no other Trust it had approached was willing to do so. The Judge said he had “no reassurance that her envisaged package of home care is practically achievable.”

Where does this leave future parents in a similar position to Pippa’s mother?

The principle of best interests maybe resources blind, but its implementation is not. There must be evidence that further life-sustaining treatment is deliverable and a deliverable care package requires funding. Where the child is an in-patient and parents want the child to come home, they are in a near impossible position. An NHS funding body like a CCG (or NHS England) is likely to wait for the court’s best interests determination before deciding what it will and won’t fund and where. But without a funding decision, the court will not know if care at home, if medically achievable, is realistic. If, like Tafida Raqeeb’s parents, Pippa’s mother had access to wealthy backers prepared to fund her care, and a consultant at a private hospital willing to perform a tracheostomy, would the outcome for Pippa have been more life, as it was for Tafida? Although Poole J’s reasoning that for Pippa, more life would contain only burdens and no benefit answers the question, perhaps the question does not disappear from the mind entirely.

What of the position for hospitals?

Tafida was in a minimally conscious state, not PVS and when her case came to court, she had been in ICU for 7 months. Poole J indicated that not only the difference in consciousness but also the different duration of the condition was a material difference. So 7 months leaves room for doubt about whether there is capacity for increased awareness, and 2 years is conclusive. The lawyerly advice to Hospital Trusts is probably to treat for a year before making an application to withdraw treatment for a child with close to undiscernible awareness. But the difficulties for hospitals and their staff in waiting a year should not go unacknowledged. Other patients may have to be turned away. Operations for existing patients may have to be deferred because there the required post-operative ICU bed is lacking. And there may be moral distress for nurses particularly (outside the pandemic let alone in its midst) in caring for a patient who has no conscious awareness to whom they feel they can bring no benefit, when there are many others whom they know they could help.

Pippa is testament to the fact that with modern technology and exceptional medical care, children in the PVS can live for a long time. The NHS isn’t capable of funding indefinite treatment of all patients in a minimally conscious state or PVS, judges are not given information about the costs implications for conscious patients of keeping alive those who have minimal consciousness, and yet we assume that if a judge says that continued treatment is in a child’s best interests, it will be funded without limitation. Nothing touches the pain of parents with a child in this situation. But as funders/commissioners do not get involved, NHS treating teams are on their own and caught in the middle. The Trust and its staff bear the psychological, financial and time cost of bringing the application. And individuals are put in the position of having to decide whether, in conscience, they are prepared to provide treatment such as a tracheostomy, which, in itself can cause moral distress.

When Covid is done, and there is a re-evaluation of ICU, it is to be hoped that Government will show leadership. Political answers are needed to the equitable and ethical questions that arise in connection with the treatment of patients who, in Poole J’s words, are “at the edge of life”. Should (P)ICU – one of the most costly resources – be rationed for patients who show no improvement? Should the NHS treat patients in the PVS? Should the best interests of patients who have close to no conscious awareness be informed by resources, and if so how? It may be that after Covid, there will be an opportunity for a grown-up national conversation about resources at the edge of life.

One thing shines very clearly. Pippa’s mother made a decision to fight for Pippa’s right to a life that is as long as medically possible. That, she believes, is “God’s law”. In love and good conscience, she could not have done otherwise. Her belief that her daughter will improve, and her determination that Pippa should have every chance to do so, is part of the exceptional care she has always provided to her daughter. It was her perfect right to make that decision and Pippa is lucky to have her. Everyone will wish this family strength and peace.

PART 2 – CASE SUMMARY

About Pippa

Pippa is now 5 years old. She was a completely healthy baby but became brain damaged as a result of illness (acute necrotising encephalopathy – ANE) at around age 20 months. She improved and went home for a year and a half but then ANE struck again. She was admitted to the Evelina in January 2019 and remains there at the time of writing.

She has a devoted mother (her mother spends 16 hours a day at her bedside), an older brother and a loving extended family. Her father lost a child to meningitis before she was born and, after her first illness, he took his own life. So Pippa’s mother has cared for two bereaved children, one severely disabled, ever since.

All the second opinion doctors and experts in the court case agreed about the following. Pippa is in the persistent vegetative state. She has no awareness of herself, anyone or any part of  the world around  her, and cannot communicate or experience pain, discomfort or pleasure. She cannot breathe at all or swallow; she is doubly incontinent and blind. She is incapable of purposeful movement. She has made no progress since January 2019. There is no prospect of any improvement.

Pippa’s mother disagrees. She believes Pippa has made good physical and cognitive progress since arriving at the Evelina and that she improves day by day. She loves Pippa and wants Pippa to be cared for at home, where she can be with family and her toys and things, for as long as it is given to her to live.

Her respiratory regime is described at length. She has to be turned, moved into the prone position (this needs 2, sometimes 3 people) and management of secretions (by administering and then removing saline and by suctioning) every day. Even with this care expertly delivered in PICU, she desaturates every few hours. Her life could come to an end at any point, or she could live for some years yet with PICU care.

The expert evidence was that any care at home would not be of the same standard and life expectancy at home would be limited to months. Any trial of and transition to home care would take 6 months and would be a complicated, resource intense process. The treating team at the Evelina manages 50 patients ventilated in the community. The team simply could not see that it would be possible to care for Pippa safely at home. And it was not prepared to perform a tracheostomy because it did not think any more treatment for Pippa, in any setting, was in her best interests.

The judge concluded that the chances of Pippa being able to be transferred to long term ventilation at home were remote. And that it was not in Pippa’s best interests to have continued life-sustaining treatment and therefore not in her best interests to have a trial of treatment at home.

The judge’s findings

Harm Without Awareness and Without Pain

Pippa’s mother’s barristers argued that:

““by definition there is no physical harm caused by the provision of medical treatment to a person with no conscious awareness.””

The judge had no hesitation in dismissing that argument. He separated pain and harm:

“Both her ongoing condition and her necessary treatments in the PICU constitute burdens upon her person notwithstanding her lack of conscious awareness. In any event, the absence of pain is not the same as the absence of harm.”

He then explained that there are limits:

“The fact that a person has no conscious awareness does not give their clinicians, or anyone else, licence to perform procedures on them irrespective of their benefit.”

He noted that we do not deny compensation to victims of negligence because they have no awareness:

“Compensation payments for “loss of amenity” have been made to patients who are in a coma because the law recognises that even the fully unconscious individual may experience a loss of function and a diminished quality of life even if they do not suffer pain”.

Accordingly, the absence of pain does not mean that that is the end of the welfare assessment. The Royal College of Paediatrics and Child Healthcare publishes guidance, called, “Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice.” This guidance sets out the circumstances in which it is ethically permissible to withdraw life sustaining treatment. They include situations where although treatment can prolong life, it can’t lessen the burdens caused by the child’s condition or the treatment necessary to sustain life.  If the child’s condition is such that it is difficult or impossible for them to benefit from continued life, withdrawal of treatment can properly be considered. Perhaps with this in mind, the judge found that it was not just that Pippa’s situation caused her a lack of ability to benefit from life, it also burdened her:

“It is insufficient to view her condition as depriving her of benefit. Her condition and the treatment it necessitates are significant burdens. Even if one discounted these factors in the welfare assessment, on the grounds that Pippa has no conscious awareness of them, they ought to be taken into account in the broad assessment of her interests. It must be relevant to any assessment of her interests that she has such grave loss of function and requires such intensive and intrusive treatment to preserve her life.”

Having found that Pippa’s condition and her treatment for her condition cause her harm, the judge looked at whether even though she has no awareness, the harm should be balanced with other benefits to her.

Can there be burdens but no benefits?

Some judges, when considering withdrawal of life sustaining treatment from adults, work on the basis that if a person in a minimally conscious state can experience pain then it must follow that they can also experience pleasure, and vice versa. It is unclear whether there is any medical evidence to support that view.

Here, the judge asked whether it would be inconsistent to say that a young child with no awareness would suffer burdens but no benefit from more life. He said it would not. That was because the benefits there might be for a young person or adult – such as the affirmation of deeply held values or respect for autonomy – do not apply to a very young child such as Pippa.

He could not identify any non-medical benefits for Pippa of prolonging her life on PICU.

The Benefits of the Patient’s Life to Others

What of the part Pippa plays in family life and the benefit to her of living with those who love her? The judge found that Pippa, as she is now, contributes significantly to the lives of others:

“She is an exceptional child who has inspired exceptional behaviour from others: the selfless devotion of her mother, the sacrifices of her brother, the loving support of other family members, the dedication and skill of the PICU doctors, nurses, and therapists. Many people will have learned from Pippa’s life and experiences: doctors, nurses, therapists, and other parents whose children have passed through the PICU at the Evelina.”

And he said that the presumption that life should be preserved was uncontroversial. At the same time, that presumption did not determine whether more treatment was in her best interests.

Pippa’s best interests, he said, had to be seen from her perspective, not that of the people who love her and want to go on loving her:

“Pippa’s condition renders her unaware of the benefits she brings to others. Not only is her welfare my paramount consideration, but it would be wrong, in my judgment, to take into account the welfare of others when determining her best interests.”

Dignity

The Judge noted that the concept of dignity had influenced one of the experts whose view it was that Pippa should have further life-sustaining treatment.

He described dignity as “problematic” and a “subjective and malleable concept”. He said for an older child or adult, dignity might be linked to their exercise of autonomy – that is, the choices they might have made for themselves. But that didn’t apply to a 5 year old because at such a young age the child’s “values, beliefs, and wishes cannot reliably be ascertained or inferred.”

The problem with dignity, he said, is that it is such a subjective concept that people can have wildly different ideas of what it means in practice. For example, the hospital thought that a planned withdrawal of ventilation with good palliative care would enable Pippa to die peacefully and with dignity surrounded by her family. In contrast, her mother said:

 ““I could not think of anything more undignified than Pippa’s death being planned and for it to be carried out in the corner of the PICU when there is a procedure that can be done to potentially get her out of the ward and home.””

Wisely, the judge avoided the trap of defining, let alone implementing, what dignity means in this situation. He said that given the differing views, he would “not presume to adopt some supposedly objective concept of dignity to determine her best interests.”

In short, dignity simply did not help answer the best interests question one way or the other.

Parental and Family Rights

One of the experts supporting Pippa’s mother’s view of best interests said that it was for parents to decide where their child died: ““It is their right to determine the three most important things: when, how and where does death occur.””

That expert’s view (which reads more like a legal submission) got an emphatic thumbs down from the judge. Yes, doctors must consider the family’s wishes and, where possible, work consensually with the family. But it is the cases where working consensually isn’t possible that come to court. In court:

“The law is clear: in these cases it is not a parent’s right to determine when, how and where death occurs, or whether life sustaining treatment should be prolonged. Nor do I accept that the court should consider Pippa’s interests through the prism of her mother’s interests: the court is concerned with Pippa’s best interests which must be assessed from her perspective, not from anyone else’s viewpoint.”

Again, he returned to the fact that the court is concerned with the child first and foremost:

“Dr Playfor, Dr Wallis, and many other people might think that when a child can feel no pain, the courts should seek a solution that gives the most comfort to the child’s family, and that there is a cruelty in depriving them of that comfort and curtailing the life of the child they cherish. But the law seems to me to be clear that the benefits that Pippa has brought, and may continue to bring, to others, and the satisfaction of the wishes of a child’s family, are not the focus of the court’s attention. It is her welfare that is paramount, not the welfare of others, and her best interests that are the court’s concern.”