As part of our series of blogs for National Pathology Week, Dr Shubha Allard and Dr Catherine Booth discuss the importance of putting patients at the heart of informed decision-making around transfusion

Every year, around 2.5 million units of blood and components are transfused in the UK. Transfusions save lives, both in supporting people with ongoing illnesses and providing immediate care to those in critical conditions.

But research shows that we need to better inform our patients to truly involve them in decision-making around transfusion. A recent nationwide study found that while 75% of patients who had received a transfusion felt satisfied with the information they had been given, only 59% could recall giving their formal consent to go ahead (Booth et al 2017, Transfusion Medicine in press). Also, worryingly, just 28% of respondents reported receiving an information leaflet.

These statistics have come to light at a time when healthcare professionals need to think increasingly carefully about the information they provide to patients. Following a Supreme Court ruling in the case of Montgomery vs Lanarkshire (2015), the laws around patient consent have been strengthened, affecting transfusion and all other areas of patient treatment and care. It should not be up to us as doctors to decide whether the relatively low risks of complications with transfusion would be thought to be significant or not by patients. It is up to patients themselves to decide what they would consider to be a significant risk, based on the information we provide them.

But how much information is enough? And why is it so vital to make sure patients have a fuller understanding of transfusion?

Understanding the risks

Blood transfusion is generally very safe but, as with any medical treatment, there are certain risks that people need to know about. Patients often fear getting an infection from a blood transfusion – many still remember the tragedy of patients in the 1980s who became infected with HIV and Hepatitis C, and a current public inquiry into this continues to heighten public concern. We need to reassure patients lessons have been learned which greatly improve the safety of the blood supply.

At the same time, while there are strict rules in place for donors and vigorous testing of all donations in the UK, we cannot state a ‘zero’ risk to patients. They need accurate information – for example, that the estimated risk of HIV infection is around 1 in 6 million – to help make their own choices.

Understanding the options

Also, patients may have alternatives to transfusion available to them, and they need to be aware of these.

Many transfusions are essential and lifesaving – for example when people are bleeding severely after injury, surgery or childbirth or have inherited blood disorders such as sickle cell disease or thalassaemia. However in certain circumstances there may be alternatives. Patients with iron deficiency anaemia, for instance, should ideally be treated with iron therapy rather than transfusion.  In addition, transfusing only small amounts of blood with a so-called ’restrictive’ approach may be better for patients who need a transfusion.

In all cases, the patient should be aware of their options.

Not just what, but how

Once we know what to communicate to patients, it’s equally vital to consider how we communicate.

Training is paramount – but we also need to be mindful that patients, often unwell, stressed and anxious about serious medical conditions, may not be in the best frame of mind to take on board detailed information. Having complex discussions about transfusions can be challenging, with limited time to spend weighing up difficult decisions and possible alternatives with patients and their families.

We use information leaflets on transfusion from the UK blood services, and it is helpful to have these conveniently to hand to support our discussions with patients. Moreover, in the 21st century, hospitals need to explore 21st-century ways to provide accurate and reliable information, such as online resources, videos, podcasts or mobile phone apps to suit patient needs and preferences. Further work is needed in this area.

As healthcare professionals, we must put ourselves in the patients’ shoes. We need provide adequate information in an open and balanced way based on the individual patient and their circumstances. Patients and their relatives should be encouraged to ask questions and be empowered to take a central role in discussions around blood transfusion, to help put them at the heart of informed decision-making.

 

Dr Shubha Allard

Consultant Haematologist, Barts Health NHS Trust and NHS Blood and Transplant

Dr Catherine Booth

Clinical Fellow, Barts Health NHS Trust