Respect for autonomy

This principle sits at the heart of ethical healthcare provision and a patient-centred approach that defines contemporary UK medical education. In the move away from medical paternalism, its value has been increasingly recognised and can be defined in Kantian terms as treating patients as ends in themselves rather than simply means.25

The NHS charging regulations legally enforce that secondary services must assess a patient’s ‘ordinary residence’ before proceeding with clinical care. This prioritises an individual’s immigration status above their autonomy, directly contradicting Good Medical Practice to ‘treat patients as individuals and respect their dignity and privacy’ and ‘never discriminate unfairly’.26 The State’s need to police its border overrides respect for the individual and autonomy can no longer be guaranteed.

In Sylvester’s case, he was given autonomy in his treatment prior to the questions over his immigration status. However, on arrival for radiotherapy, his options quickly altered as he was now expected to pay vast sums or produce passport documentation. This effectively left Sylvester without choice as the out-of-pocket cost was unaffordable but he still felt entitled to treatment based on his UK residence of over 40 years. The NHS charging regulations led to denial of Sylvester’s autonomy and present a barrier to medical professionals fulfilling their ethical duty.

Of course, Sylvester possessed some degree of agency in this process. There may have been earlier opportunities for him to formalise his legal status. But does this omission equate to exclusion from healthcare access? There are many reasons why Sylvester may have felt it unnecessary to apply for a passport. He may have lacked the money to travel abroad, the skills to navigate complex eligibility criteria or perhaps been afraid of contacting the authorities based on the record of abuse that has been suffered by West Indians at the hands of the British state.

In this case, the State fails to comply with Article 2 of the Universal Declaration of Human Rights which states that all human rights, including the right to ‘a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care’, must be ‘exercised without discrimination of any kind’.27 The WHO expects countries to make progress towards achieving sustainable development goal 3.8 on Universal Health Coverage.28 The current movement on charging acts to oppose this principle in England.

Within Good Medical Practice, doctors are encouraged to ‘take prompt action if (they) think that patient safety, dignity or comfort is being compromised’ through policies or systems, and ‘put the matter right’ where possible.26 Sylvester’s safety, dignity and comfort were all compromised through enactment of the NHS charging regulations.

Beneficence and non-maleficence

It is a doctor’s duty to ensure that there is overall net benefit to the patient25; embodied by the phrase ‘first, do no harm’. Since the birth of evidence-based medicine, doctors are obliged to consider empirical evidence of harms and gains. Changes to service provision, which impact the risks and benefits, should only be introduced after generation of evidence to guide clinicians. The harms posed by the NHS charging regulations to individuals, outlined below, are becoming evident; however, none were robustly investigated by government bodies prior to implementation.

Evidence is building for the documented harms which patients have suffered since the introduction of the charging regulations. Doctors of the World, a non-governmental organisation which runs clinic in London for excluded people such as destitute migrants, report that a third of their patients avoided seeking care when they required it.16 Maternity Action describes severe mental distress caused to pregnant and new mothers and even women feeling pressured into abortion or adoption due to the financial strain.15 The mothers illustrate the dehumanising and humiliating process of being harassed for money by NHS trusts and threatened with reporting to the Home Office.15 A survey of RCPCH members revealed four children presenting to A+E with life-threatening conditions after delay in attending due to the charging regulations and two intrauterine deaths which may have been avoided if mothers had not avoided antenatal care.13 The BMA report a case of a patient dying in her 30s due to her not seeking help for an eye cancer which she believed she would be refused treatment for and a rise in sexual transmitted infections due to barriers in accessing sexual health clinics.11 Only 3% of trusts conducted an equality impact assessment of the policy and no Trust was monitoring for discriminatory impact or the health outcomes of their patients.12

Delays in treatment due to the ‘ordinary residence’ assessment cause unnecessary harm. This is exemplified in the Sylvester’s case, where his prostate cancer is left to progress. Good Medical Practice tells us, ‘If you assess, diagnose or treat patients, you must promptly provide or arrange suitable advice, investigations or treatment where necessary’.26 The charging regulations are likely to cause psychological distress to affected patients. In an interview, Sylvester stated, ‘I don’t know what is going on inside; it is really worrying me. It feels like they are leaving me to die’.21 These additional harms caused to patients are profoundly opposed to the principle of non-maleficence.

When weighing up the risks and benefits, catastrophic financial costs for those not ‘ordinarily resident’ will need to be considered. This may alter the clinicians’ approach: there is already evidence of delays in secondary care referrals and clinicians feeling forced to seek primary care alternatives.11

Fears that contact with health services may lead to incarceration in a detention centre, denial of leave to remain or being ‘sent home’ to potentially harmful environments exist, deterring migrants from accessing healthcare.15 Additionally, the Home Office has confirmed that unpaid bills with the NHS may be grounds for refusal of asylum.33 These negative repercussions may outweigh the benefits of non-urgent treatment for those affected.

Justice

The concept of justice is dependent on the frame used to define the population or community included. The medical profession’s frame is to treat every patient as an individual, looking past personal characteristics, for example, nationality, gender and criminal history. In effect, medics are trained to be borderless and consider the entire human race as one. This is summarised by Good Medical Practice: ‘You must treat patients fairly and with respect whatever their life choices and beliefs’ and ‘give priority to patients on the basis of their clinical need’.26 Under this model, it is clear that the NHS charging regulations contravene the principle of justice.

This borderless framework is fundamentally opposed to State sovereignty, which defines itself by ‘the border’. The State applies the concept of justice only to the population within its borders and therefore those from outside are seen as a threat to the justice of its people; a threat to their ‘right of exemption’.39 Hence, ‘health tourists’ deny UK citizens their right to healthcare. The central argument for the reforms rests on the concept of ‘fair’ allocation of resources, based on the application of ‘fair’ to those who are British citizens. This clash of definition for the serviced population poses a problematic tension and is core to the ethical breach of doctor’s duties under the NHS charging regulations.

This tension echoes the debate in human rights literature. The French Declaration of the Rights of Man 1789 was framed on ‘the citizen’, excluding many at the time including women and Jews. The Universal Declaration of Human Rights and subsequent Human Rights movement have never shaken off this assumption of ‘human’ as ‘citizen’.40 Arendt summarised a situation where political forces could render populations without ‘the right to have rights’ and without the ‘right to belong to some kind of organised community’.19 Sylvester’s story is an example of somebody who was excluded from the UK community and denied his entitlement to healthcare. Today, the Universal Declaration of Human Rights is inevitably operationalised at State level, leading to denial of human rights for ‘outsiders’, under the guise of law and order.41

Rawls states that distributive justice should be achieved by ensuring that any existing inequalities must not lower the expectations of those least advantaged. He argued that equality should set the baseline for society and inequalities are only to be tolerated if they improve everyone’s situation.42 To employ this interpretation of justice to the introduction of the charging regulations, we need to decide who we include in our definition of society. Rawls worked by the framework of the citizen, so using his concept we can choose to exclude those not deemed ‘ordinarily resident’ from our definition and think about the least advantaged UK citizens. There are many possible outcomes of the regulations that appear to lower the expectations of this group such as an increase in infectious diseases which tend to show greatest prevalence in the poorest citizens, increased animosity between the citizen population and the migrant/visitor population which could reduce well-being (this is most relevant for the least advantaged UK citizens because they tend to live and work in the same locations and therefore come into more direct contact), deterioration of the mental health of migrant/visitor population which could impact on citizen population in a number of ways, increase in homelessness and possibly an increase in crime rates as the visitor/migrant population are pushed into destitution as a result of poor health or the costs of healthcare.

The only perceived benefit to the least advantaged in the citizen population of this policy would be a potential 0.07% increase in the NHS pot for the entire population’s potential use of healthcare, and as will be discussed below the reality of recovering these funds may never be realised. If we were truly concerned with achieving Rawls’ definition of distributive justice, then there are many better ways to improve the least advantaged’s proportion of the NHS pot such as fairer distribution of healthcare resources through greater Government support of health equity initiatives, for example, the Deep End primary care movement based on Tudor Hart’s inverse care law.43

If we choose to broaden the definition of membership of society and include those deemed not ‘ordinarily resident’ but still on UK soil, then we can see clearly how the NHS charging regulations worsen the situation of the least advantaged. Under this definition, the least advantaged population on UK soil must surely be those vulnerable populations who are living outside the protective frameworks of citizenship and have a host of barriers to prevent them bettering their individual circumstances. Not all migrants/visitors on UK soil, such as richer economic migrants from places such as the USA and Russia, will be within this category; however, those at the least advantaged end of the scale must surpass the level of disadvantage of the poorest of UK citizens.

To employ another of Rawls’ theories and seek further clarification on his moral position, we can use his thought experiment: the veil of ignorance. This would support the idea of dismantling the charging regulations as, if your position in society was concealed from you before the policy decision was taken then few people would agree to such a marginalising policy.

The reforms were introduced at a time of heavy anti-immigration media coverage and politically motivated rhetoric over the condition of the NHS budget.44 The preceding years of austerity led to heightened scrutiny of public service spending.45 Media coverage46 47 and policy-makers debate48 focused on ‘health tourism’: travel to the UK specifically for NHS services. Populist media adopted the phrase and represented it as the main motive for change, despite government-commissioned research estimating it to contribute only 0.07% to the total NHS spend49 50 and estimations from UK Office of National Statistics that net migration for medical treatment moves out of the UK rather than into it.51

Despite the governments claim that £156 million could be saved through the new charging system, the current estimate is that only £15–25 million gross income is being recovered.14 The costs of administrating the system are estimated to be greater currently than the recovered costs—a net loss to the NHS.14 Using a rough back of the envelope calculation, if there are 99 NHS trust in England and a rough approximation of 220 overseas visitors managers employed in them on a band six pay salary, then this cost alone would equate to £6.5 million spent on OVMs salaries per year. Plus, this does not take account of any of the additional administrative staff required in their team or the other operational costs. The majority of NHS trusts report hiring external debt recovery agents to deal with unpaid debts.14 Despite heavy-handed approaches, these external agents have limited success with only approximately 7% of debts being recouped and charge large fees regardless of the outcome.52

Evidence from studies conducted in Europe suggest that exclusion of migrants from routine healthcare is not a cost-effective approach.53–55 The additional financial costs to the NHS through delayed presentation of medical conditions leading to greater overall costs of healthcare and increased rate of infectious diseases due to fear of seeking medical attention have not been published. These are extremely difficult to calculate accurately but must be taken into consideration.

If fair allocation of resources is the core motivation for the policy, then it is clearly not having the desired effect as a cost-saving initiative and there is no suggestion that it necessarily will. There are many more evidenced and properly researched approaches to reducing waste of scarce NHS resources which could have been prioritised over this one, such as minimisation of prescription costs, improvements in use of technology and preventing the need for agency staff.56 57 Numerous calls have been made for the government to be more transparent about publishing its decision-making process and the impact of the policy following its introduction.1 58 A review conducted into the impact of the charging regulations has not been shared publicly and neither has Public Health England’s review into the impact of the data sharing agreement.32 As it seems evident that the motivation for this policy cannot be cost-effectiveness alone, political ideology appears to be its driving force which is problematic when making healthcare delivery decision.

While it can be reasoned that NHS charging regulations have been produced by democratic decision-making and should therefore be respected, history shows that democratic decisions have resulted in human rights abuses throughout the world, for example civil rights in the USA, apartheid in South Africa and anti-terrorist measures in many European countries. Part of the democratic process is to challenge and call-out those policies which may not have considered their negative consequences. Democracy occurs in incremental steps. Occasionally, a step is taken which members of the population disagree with and they can exercise their democratic right to oppose this and lobby for change. Doctors as a professional body have an obligation—for the good of society—to uphold their ethical code of conduct, which has been revised and developed over many centuries.

The public’s willingness to pay their taxes to finance the NHS depends on the healthcare provided. Currently, there is no evidence available that quality of care has improved since the new policy has been implemented. Quality of healthcare in the UK compared with other EU countries in a very broad sense—as healthcare is hugely diverse and quality is a multidimensional concept—is good: the NHS has some of the lowest waiting times for operative procedures and some of the shortest hospital admission stays.59 Some recent stagnations in quality measures such as overall life expectancy60 and infant mortality61 have occurred since 2010 and 2014, respectively, showing, if anything, declining quality in public health and healthcare. There is growing evidence to link these falling measures of population health to the austerity policies of the current administration.62 63

At present, the communal agreement of a doctor’s responsibilities between the profession and wider society does not require consideration of immigration status. There is no mention of ‘citizen’, ‘visitor’, ‘residence’ or ‘nationality’ in any of the Good Medical Practice documentation.26 Therefore, while working as a doctor in England, all patients who walk through your door should be treated in the same way regardless of their reasons for being within the boundaries of the UK. If society feels strongly that consideration of these concepts should be incorporated into the role, then there needs to be a much wider public and medical debate on this issue. A clinical environment, which should promote healing, care and comfort to the sick, is not an appropriate space to enforce border control and clinicians are not trained for this role or its impact. These two functions have completely opposing priorities and cannot be brought under one roof without damaging the conduct of the other. This sentiment is outlined in the United Nations Global Compact for Migration, adopted by the UK Government in December 2018. If the Home Office believe it is important to reduce migrants’ use of public services, they should focus greater attention on policing UK borders. The enforcement of such border control measures has no place under the jurisdiction of healthcare.Export to PDF (without watermark)