“They say it affects homosexuals, Haitians and haemophiliacs, like there’s a disease which has targeted the letter H.” So says the main character, Richie, from the hard-hitting drama series, It’s a Sin. It is one of the most talked about shows this year and has won plaudits for authentically portraying a group of friends whose lives are changed forever by the HIV/AIDS epidemic of the 1980s, with the backdrop of the gay community in London. The programme has reignited a conversation about what this frightening period was like, while also resonating in the time of covid-19; highlighting the fear, uncertainty, and national response to the emergence of a new disease.

I am 31, so I cannot speak from experience of the 80s myself, but the themes of the TV drama have a particular poignancy for me and my family, as we have a history of haemophilia, and the Infected Blood Inquiry is ongoing. The UK Government has recently announced their commitment to conduct an independent review to consider compensation for those infected, and affected, by contaminated blood in the UK. This is the first time in the history of the contaminated blood scandal that the UK Government has used the term “compensation,” and the announcement has been cautiously welcomed by campaigners and activists.

By 1985, about a fifth of people living with haemophilia in the UK had contracted HIV after being treated with contaminated blood products. [1] There was an additional near 100% risk of infection with the Hepatitis C virus (HCV). [2] It has been referred to as the worst treatment disaster in the history of the UK’s National Health Service (NHS). [3] Like the LGBTQ+ grassroots activists who mobilised to combat severe social stigma, denial, and inaction on the part of governments and public health officials during the AIDS crisis, so campaigners for the haemophilia community have fought hard over three decades for truth and justice. 

Since the launch of the Inquiry in 2018, oral and documented evidence have pulled into sharp focus the culturally paternalistic, hierarchical, and dominant clinical policies and practices of the time, where decisions were made, or not made, about treatment with, in many cases, total disregard to patient consent. This resulted in an approach to risk communication with patients about viral transmission that was based on reassurance, rather than one which engaged in a full and transparent discussion of patients’ concerns or a consideration of alternative treatment options. The then common perception that what a patient did not know would not harm them, was shown to be misguided. The attitudes of yesteryear and the consequential harm caused by contaminated blood products, still underpins and shapes much of the doctor-patient relationship in haemophilia care to this day.   

The concept of patient autonomy—the principle of self-determination and freedom from coercion, whether open or covert—has become central to medical ethics and challenges the paternalistic notion of “doctor knowing best.” [4] Power dynamics have undoubtedly shifted with the wealth of information now available via the internet, and today’s patients are characterised as increasingly expressing their preferences and asking more probing questions, supporting shared decision making. However, in spite of a policy push behind shared decision making, it is not always being widely embraced by physicians across different medical contexts and instances of contemporary medical paternalism still occur. [5]

In haemophilia, even with the tainted blood scandal ever present, a recent report by The All-Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood, revealed that the drive to reduce costs is limiting product usage and access to innovative treatments. Some patients are being forcibly switched to a different product, primarily for cost efficiency, rather than effectiveness—undermining the ideals of patient choice. In addition, treatment protocols remain conservative and minded to the short-term, targeted to ensure a therapeutically relevant “minimum” which can be inadequate to prevent all bleeding, therefore adding to the risk of causing permanent and life-changing disabilities in the longer term.

In this new era of digital health, if the normative expectation is for patients to take an active role in their health advocacy, what happens to those who lack the cultural health capital to sense when their autonomy is being threatened? Patients are not always aware of the facts of their treatment after consent-related discussions, and the physician-patient communication process has a strong influence on how patients understand, remember, and evaluate information presented to them. [6] While most physicians recognise that patients have a right to decision-relevant information and to be involved in making important medical decisions, good ethics often requires good communication, and many fail to interact in a way that lead either to true empowerment or to decision making partnership with their patients; barriers such as economic and time pressures contributing to poor communication practices. [7] 

For patients to feel respected, valued, and heard, physicians should be upskilled, supported, and prepared in how to best partner with patients in making preference-sensitive choices, and to reinforce these teachings with patient input throughout their careers. The potential difficulties of conveying complex information about treatment and risks should not be taken to indicate that patients are incapable of understanding medical information or that patient autonomy in decision-making is meaningless. The physician’s role must be to help ensure that relevant information is presented in such a way as to enable the patient to use it meaningfully, with the first step of actually assessing the patient’s baseline understanding of their condition or of their treatment alternatives. This way, physicians could be better guided to tailor their communication to fit patients’ informational needs. 

Forty years on the contaminated blood scandal is a stark reminder of the paternalistic past. Yet, it is never too late to hold to account those that continue to perpetuate an act of dominance through paternalistic practices at the expense of optimal patient outcomes.

Laurence Woollard is director of On The Pulse Consultancy. Twitter: @TheWoollard 

Acknowledgement: Thanks to Rich Gorman, Bioethicist at the Brighton and Sussex Medical School.      

Competing interests: None declared.

References:

[1] Sabin CA, et al. Twenty five years of HIV infection in haemophilic men in Britain: an observational study. BMJ 2005;331(7523):997-8. Doi:10.1136/bmj.38604.468785.DE

[2] Darby SC, et al. Mortality from liver cancer and liver disease in haemophilic men and boys in UK given blood products contaminated with hepatitis C. Lancet 1997;350:1425-31. Doi:10.1016/S0140-6736(97)05413-5.

[3] Kirby T. UK Government announces contaminated blood inquiry. Lancet Gastroenterol Hepatol 2017;2(9):630. Doi: 10.1016/S2468-1253(17)30222-4

[4] Infected Blood Inquiry. Expert Report to the Infected Blood Inquiry: Medical Ethics. 2020. Available online at: https://www.infectedbloodinquiry.org.uk/sites/default/files/documents/Medical%20Ethics%20Group%20Report.pdf [Accessed 17 February 2021]

[5] Ubel PA, et al. Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy. Am J Bioeth 2017;17(11):31-9. Doi: 10.1080/15265161.2017.1378753

[6] Chan S, et al. Montgomery and informed consent: where are we now? BMJ 2017;357:j2224. Doi: 10.1136/bmj.j2224

[7] Ubel PA, et al. Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy. Am J Bioeth 2017;17(11):31-9. Doi: 10.1080/15265161.2017.1378753