As we publish guidance on consent for cancer care, Consultant Haematologist Dr Alastair Lawrie tells us how important it is to ensure patients are well informed about their treatment and what it entails – and looks at where the guidance will go next, following on from the COVID-19 pandemic.

It’s May 2020, and I am phoning an elderly patient I’ve known for several years. She has chronic lymphocytic leukaemia, a common, slow-growing blood cancer. She was diagnosed incidentally after having blood samples taken for another issue and has been well until recently. Like many patients, she has been shielding at home and has not left the house since February. Her GP has contacted me highlighting concerns about weight loss and fatigue. They arranged a blood test for her at home, and this shows progression with deterioration in her blood counts. She almost certainly has reached the need for treatment that cannot wait until the COVID-19 pandemic is over.

We chat about her blood tests and condition generally. She is struggling but is clearly terrified of coming to hospital. We had discussed chemotherapy before, and she is particularly worried about the risk of regular intravenous treatments bringing her into contact with others, as well as her risk of infection generally. I explain that temporary approval has been given in Scotland during coronavirus to use a newer, oral chemotherapy treatment to treat her leukaemia. It will also increase her risk of infection, but will greatly reduce her need to leave the house or attend hospital. We have not previously discussed this medication before and she has lots of questions.

Clarity and consent are key

When it comes to cancer treatment, it’s not surprising that patients like the one in this case have a lot of questions. While Systemic Anti-Cancer Therapy (SACT)  – chemotherapy  – has been widely used for years, it’s still a high risk treatment with a lot of potential side effects. Yet although written consent for chemotherapy is not specifically required by law, it is widely regarded as best practice in support of a full discussion with the patient about the intended benefits and possible risks of a treatment. We know from regular audit of chemotherapy services in Scotland that current practice is good. However, it’s also been identified that there is wide variation in the approaches that individual health boards employ to seek written consent for chemotherapy.

In 2018, the Scottish Cancer Taskforce asked Healthcare Improvement Scotland to review this issue, with the aim of identifying best practice and standardising this across Scotland. A working group comprising medical, nursing and pharmacy representation from across Scotland examined and compared various approaches.

The approach endorsed by the group was to use regimen-specific consent forms. These are already widely in use in England, where a ‘library’ of over 200 custom-designed consent forms for each individual chemotherapy combination or regimen has been created. The forms have been developed by cancer clinicians at Guy’s and St Thomas’ Hospital in London and more recently, this project has been funded and supported nationally by Cancer Research UK. A key aim of this approach to improve consistency and clarity in the communication with patients. This improves shared decision-making, and makes the process of consent more patient-centred.  Feedback from patients who have used the forms has been positive.

Focussing on the impact on the individual

Central to the need for clarity and consent is the need to ensure that the discussion and risks are individualised to the patient. One example given of this is the risk of nerve damage from chemotherapy, which may have different implications for a concert pianist, for example, as opposed to other people. In practice, I have found that the new forms help with this, by offering a clearer and more consistent summary of what a particular chemotherapy regimen will involve. This then helps elicit the concerns and questions of particular importance to that patient.

I’m optimistic that the CRUK regimen-specific forms will be a positive step once implemented across Scotland. The coronavirus pandemic has resulted in radical changes to many aspects of clinical work. Remote consultations and paperless working are now moving from an aspiration to the standard of care. These new forms already help with remote consultation and work is already under way to explore creation of electronic consent forms.

A successful outcome

And my patient? Well, she was receptive to discussions about her proposed treatment, both through the phone call with me and a follow-up call with a clinical nurse specialist. An information booklet on the treatment was sent to her by post, together with a consent form specific to that medication. We debated initiating the treatment remotely – a friend agreed to collect the medication – but in the end, she decided to attend clinic for in-person assessment and to receive her first prescription. She responded well, with minimal side-effects and has been treated remotely since then and continues on treatment. For her, and for me as her clinician, the opportunity to discuss the benefits and risks of her proposed treatment, particularly given her nervousness about attending hospital during this unprecedented time, cannot be overstated. To see such discussion and consent formalised for patients across Scotland will, I believe, be a benefit to all.

Dr Alastair Lawrie is a Consultant Haematologist at Aberdeen Royal Infirmary.

More information

Visit the Healthcare Improvement Scotland website to read a news article on this work and to access the latest guidance.