Thelma Joyce · Prevention of Future Deaths report

I conducted an inquest on 6 August 2019 at Oxford Coroners Court into the death of Thelma Joyce at the Churchill Hospital, Oxford on 14 February 2019. I gave a brief Narrative Conclusion as follows:
‘Thelma Joyce underwent necessary chemotherapy in January 2019 for gall bladder cancer but died due to toxicity and side effects caused by the chemotherapy drug, Capecitabine, and a DPD deficiency making her more vulnerable to severe side effects.’

Oxford University Hospitals NHS Trust (OUH) were represented at the inquest and ████████ Consultant Medical Oncologist, provided helpful oral evidence. I attach a copy of her witness statement dated 5 June 2019.

Mrs Joyce’s family also attended the inquest. The main issue which they raised concerned the perceived failure to test Mrs Joyce for DPD deficiency prior to commencing chemotherapy. I received evidence that it was not routine to test patients who are due to receive the chemotherapy drugs Capecitabine and 5FU for DPD deficiency mainly because of the absence of a reliable test. However, I also received evidence that, with new technology and developments, there is now a reliable test. Indeed, OUH Trust now have a two-year pilot to test such patients. I attach a copy of my letter to OUH about this for your information.

Mrs Joyce commenced chemotherapy on 25 January 2019 but had a very severe reaction which led to her being admitted to the Churchill Hospital on 31 January and dying on 14 February despite treatment.
The cause of death following post mortem was as follows:

I a Pneumonia
I b Chemotherapy Toxicity
I c Gall Bladder Cancer

She was subsequently found to have a DPD deficiency. ████████ said if the results of the DPD test had been known beforehand she would not have commenced Mrs Joyce on the chemotherapy because the risk was too great. It is noted from paragraph 5 of the statement that a person with partial DPD deficiency will have low or very low levels of the enzyme. If patients with DPD deficiency receive the chemotherapy drug Capecitabine, then there is a risk the drug will not be eliminated completely and that the levels of the drug in the blood stream will be higher than normal and this can result in side effects which can be more severe than usual. It is also noted that DPD deficiency can affect between 3-5% of people which is not an insignificant number. (I appreciate that up to 20% of people do have severe side effects from Capecitabine and 5FU and not all are DPD deficient).

The MATTER OF CONCERN therefore is in relation to the possible need for updated guidance in respect of testing for DPD deficiency for patients due to embark on Capecitabine and 5FU chemotherapy.

It is reassuring that OUH NHS Trust have a two-year pilot in place to test for DPD deficiency. As far as I understand it, there are as yet no national guidelines or approved tests in respect of DPD deficiency. If it is the case that new technology and developments mean there is now a reliable test, I enquire if there should be guidelines issued concerning the use of a routine test.