Healthcare, justice, and the death of Baby Indi Gregory

Patricia Gooding-Williams, who is Managing Editor of the Daily Compass, a site of news and Catholic commentary that originated in Italy, has been a keen observer of the fight over Baby Indi Gregory, an infant who died November 13 in England. Baby Indi is the latest victim of the UK’s National Health Service (NHS) and the British judiciary, which have consistently overridden parental requests to continue treatment of seriously, even terminally ill children, or to allow the child’s removal to other countries (Italy, Poland, the Vatican) that have declared willingness to assume care responsibility.

Ms. Gooding-Williams, who attended Baby Indi’s funeral, spoke with The Catholic World Report about the case.

CWR: Indi Gregory is the latest infant to die at the hands of the British “justice” system. A British court ordered the removal of the child from life support. Indi is not the first such situated child: Alfie Evans and Charlie Gaard suffered similar fates at the hands of British courts. What is the legal rationale for these orders?

Patricia Gooding-Williams: A court order to remove life support is decided on the basis of the patient’s “best interests” in the UK. The problem is how “best interests” is defined. If we consider the motivations of the rulings in these cases, “best interests” is linked to the probability that with continued treatment the patient will improve or recover to a level of health, that according to the doctors, makes life “worth living.” The dignity of life is reduced to utility and efficiency. On this basis, the position of the family opposing an end-of-life decision by the doctors is usually found weak by the courts.

The majority of these cases occur under the radar because families rarely contest their doctors’ advice. But, when hospital doctors and parents cannot agree over the patients’ treatment, the judiciary is asked to intervene to make the final decision on the patient’s treatment. During proceedings, parents are not considered the primary caregivers of their children; this responsibility is delegated to a court-appointed guardian for the child. The judge in the UK’s High Court (Family Division) will hear arguments from three parties: the parents, the hospital trust and the guardian for the child. After this, the judge will make a decision about what he or she thinks is in the “best interests” of the child.

But, almost invariably, as demonstrated in the Indi Gregory case, this usually means the evidence of the specialist doctors recommending that life-sustaining treatment should be withdrawn is favored over those of the parents’. Most cases of this type are resolved by parents finally agreeing to withdraw life-sustaining treatment, but not always as was the case of Indi Gregory, Charlie Gard and Archie Battersbee, which resulted in acrimonious legal tug-of-wars over the child’s fate.

CWR: In all these instances, the local NHS hospital appears pitted against the parents. To what degree is it arguable these are financial decisions for the hospital?

Gooding-Williams: The British National Health Service (NHS) is struggling to square costs and to meet the pressure of delivering free health care to all its citizens from cradle to grave. In this scenario, rising costs affect doctors everyday healthcare decisions and even more so in end-of-life care. A UK government evidence review in 2017, titled Cost-effective Commissioning of End of Life Care, was aimed precisely at reducing the costs of hospital end-of-life care. Coupled with this, if doctors evaluate a patient’s treatment to be more burdensome than beneficial, then that patient’s life is considered not worth living and it is pointless for the state to continue paying for life support.

CWR: What are the rights of parents in Britain to direct the care and treatment of their child?

Gooding-Williams: British courts think the State knows better than the parents in these cases. Parents lose their rights to decide their child’s healthcare once a dispute between themselves and doctors initiate court proceedings. In this case, the best interests of the child are represented by a court-appointed guardian who invariably takes sides with the hospital trust in favor of ending life-support treatment.

This is an aspect of British law which frustrates the families of children in end-of-life cases. In all the renowned end-of-life cases in the UK, families have denounced how the lawyers and guardians work “hand in glove” to bring about the judgment desired by the hospital trust: death.

CWR: In all these instances, the British courts appear to hold that continued life support is “futile.” Is this mere deference to the claims of the physicians, or their own judgment that the child’s life is not worth living?

Gooding-Williams: Theoretically, the judges should be impartial and respect the rights of each person. There is a step-by-step guide to assist clinicians on how to evaluate a patient’s best interests: General Medical Council legal annex, Treatment and Care Towards the End of Life: Good Practice in Decision Making. But, in reality, the motivation for these rulings are strongly influenced by ethical, religious and cultural attitudes and, in the United Kingdom, these attitudes include a deference to the medical profession. There is also a prejudice that unconscious and minimally conscious patients are incapable of deriving any benefit from life.

The other factor to consider is that the health service and the judiciary mutually support each other. In combination, this peculiarly British form of medical and judicial paternalism is a very high wall to surmount for anyone who opposes the system.

CWR: Please explain the logic of how a child’s “best interest” lies in no longer living, at least according to British jurisprudence?

Gooding-Williams: Death is privileged over life if the patient, according to the doctors, is obtaining no “benefit” from his medical care. If, when considering the benefits, burdens and risks of treatment (including resuscitation and clinically assisted nutrition and hydration) it is concluded that, although providing treatment would be likely to prolong life, but it would cause pain or other burdens that would outweigh any benefits, death is considered in the patient’s “best interests.”

CWR: In several instances, foreign governments have offered to assume care of the patient, something the parents concurred in, but British courts refuse. How is it that British courts can deny a patient or next-of-kin to remove themselves from a British hospital?

Gooding-Williams: Britain sovereignty reigns supreme in these cases. Britain doesn’t accept that any other sovereignty has the right to interfere with decisions taken on the welfare of the persons on their territory by their courts. If the courts agree with the doctors that a transferal to another clinic would increase the patient’s suffering or expose the patient to an unacceptable risk of death during transferal, it is considered against the patient’s best interests to leave the hospital (at least alive). The patient effectively becomes a “prisoner” of the State and the hospital room their cell until their death. Hollie Dance, the mother of Archie Battersbee, compared the situation to her son being on death row but without having committed a crime.

CWR: The UK was an EU member and still pretends to adhere to EU human rights. A fundamental EU right is the “right to travel” – free movement of peoples is a cardinal tenet of European rights jurisprudence. How do British courts evade that principle?

Gooding-Williams: It’s a British paradox. The courts can prevent a patient from travelling on the grounds that transportation, in the doctors’ opinion, would put the patient’s life in danger without guaranteeing a certain benefit. On the other hand, by preventing the patient from taking a risk where a chance at life would be the positive outcome, the courts condemn the patient to certain death.

CWR: Should someone who is foreign fear falling severely ill in the UK? Is there any way to protect myself from overweening British doctors and judges?

Gooding-Williams: The problem arises in the UK if a visitor is considered mentally incapacitated due to an illness or grave accident. Judging by these cases, only a formal statement or lasting power of attorney can now protect people against the doctors and the judiciary deciding death is in a person’s “best interests.” To this end, The Society for the Protection of Unborn Children (SPUC) issued a statement of instructions in the event of becoming mentally incapacitated. This document explains the steps that need to be taken to ensure end-of-life care respects the personal or religious convictions of anyone who finds themselves in an end-of-life dispute.

CWR: What is British public reaction to these cases? Do people pay any attention? Is there any way for Parliament or the Government to change the law in these cases? What are the possibilities of that?

Gooding-Williams: The NHS has been put on a pedestal since its foundation in 1948. Considered the pride and joy of the nation, criticizing its services has always been considered taboo or even betrayal. In general, it is rare in the UK for families to question doctors, who it is thought “know best.” This deferential respect means that doctors enjoy almost uncontested freedom and power over patients’ lives.

Moreover, the media have been less inclined to report on these cases, therefore, the public is less informed than it was in the past, as in the Alfie Evans case, for example. Notably, compassion fatigue towards the problems of others is a global malign of modern society. To change that in the UK, would implicate a fundamental change in the culture within NHS Trusts and a change in the law to properly recognize the authority of parents as judges in the first instance of what is in the best interests of their child. Above all, it indicates how far western societies have turned their backs on their Christian roots in favor of ideologies whereby the State or an unrelated individual makes life-and-death decisions.

CWR: Is this legal regime UK-wide or limited only to England and Wales?

Gooding-Williams: Unfortunately, same legal jurisdiction applies to all NHS hospitals and private clinics in the United Kingdom: England, Wales, Scotland, and Northern Ireland

CWR: Why have European courts (the European Court of Human Rights (ECHR) and the European Court of Justice (ECJ) ) not been more actively intervened in these cases?

Gooding-Williams: This is a question that has been asked time and again and finds a credible response in the case of “RS,” a Polish citizen who was starved and dehydrated to death by order of the British courts with the concurrence of the European Court of Human Rights (ECHR). The lawyers representing RS’s birth family filed a request that Judge Yonko Grozev, who rejected their last appeal to the ECHR on January 11, be immediately recused. It had emerged that Gorzev, who twice considered the case “inadmissible,” is in fact a protégé of George Soros and his pursuit for global policy change in the field of end-of-life care. Grozev’s decision gave the all clear for the UK hospital to induce the Polish citizen’s death.

Mr. Grozev’s curriculum vitae prior to his judicial appointment in Strasbourg called in to question his impartiality as a judge at the ECHR. Notably, as the lawyer’s letter explains, “he was a long-time member of the George Soros founded and financed Open Society Foundation Sofia which is part of an international network of political lobbying organizations campaigning for and promoting a variety of political objectives.”  One of its principal activities has been the aggressive promotion internationally of “palliative care initiatives,” which aim to rapidly end the lives of those without hope of improvement. Soros denounces the large burdens on health resources by treatments that prolong life, promoting the primacy of autonomy and that people should be allowed to kill themselves or have others kill them.

Moreover, Grozev is not an isolated case in the ECHR. A recent in-depth study prepared by the European Centre for Law and Justice entitled NGOs and the Judges of the ECHR 2009-2019 revealed a total of 22 judges nominated to the ECHR had previous links with 7 NGOs funded by Soros and 12 of them with the controversial Open Society Foundation and its legal arm The Open Society Justice Initiative. Most of these judges used to be lawyers for NGOs, who, after gaining experience arguing cases before the ECHR, were then sent to Strasbourg as judges thanks to Soros’s networks of influence.

It is true that in theory the law should be ‘fixed’, but there is always room for interpretation; presently in Europe, in case law, positive law prevails, i.e. every rule is interpreted according to the prevailing mentality and culture of the time. Secondly, as the UK is not a member state of the European Union (EU), there is no recourse to the ECJ, which is an EU body; therefore, as things stand, freedom of movement does not apply to the UK. This is not so in the case of the violation of the Human Rights Convention, which applies to all Council of Europe countries, including the UK. Furthermore, the ECHR and ECJ are two separate institutions, possibly separate appeals can be made, but it is not acceptable to appeal to the ECJ against the ECHR.

CWR: You attended Baby Indi’s funeral. Thoughts?

Gooding-Williams: It was very significant that Indi’s funeral was celebrated by Patrick McKinney, the Catholic Bishop of Nottingham. Even if Dean and Claire are not Catholics or even Christians and Indi had been baptized Anglican very shortly before her death, her parents—through the suffering they endured—realized that they needed the hope of heaven for Indi and for themselves. They were warmly welcomed by the Bishop who told them he wanted to celebrate this funeral for Indi. The reason was clear in his homily. in which expressed the meaning of Indi’s story speaking of the infinite value of life. “Indi’s short life serves to remind us of how precious life is, how precious every person is; she reminds us of how precious is the dignity of every human being; that whether a baby in the womb, someone very young like Indi, or elderly, healthy or sick, big or small, each person is of infinite value and is to be respected as such. That’s a wonderful legacy of Indi’s short life on earth.”