The Trust not administering clinically assisted nutrition through PEG
12. Before we decide if we should investigate a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and we do not see any signs something has gone wrong.
13. In January 2019, the Trust decided not to continue the use of a feeding tube and the family agreed to this. The Trust made this decision as they believed there was a risk of causing further, potentially fatal damage to Mrs E’s health.
14. In their complaint, the family say the Trust should have used a feeding tube. But Mr E confirms the family agreed the Trust should not continue the use of a feeding tube at the meeting in January 2019.
15. Section 120 of the GMC’s guidance on clinically assisted nutrition says: ‘If you judge that the provision of clinically assisted nutrition or hydration [fluids] would not be of overall benefit to the patient, you may conclude that the treatment should not be started at that time or should be withdrawn. You should explain your view to the patient, if appropriate, and those close to them, and respond to any questions or concerns they express.’
16. Our clinical adviser tells us the Trust’s decision not to feed Mrs E through PEG was in line with guidance as feeding her this way would have put her health at risk. The Trust also obtained the family’s support and consent in line with the guidance.
17. There are no guidelines, rules, regulations, or legislation requiring clinicians to attempt to convince a patient against the Trust’s position. Although the patient and their family should be involved, receive explanations and have an opportunity to ask questions, the guidance does not say they are able to overrule a decision.
18. We recognise how difficult and conflicting it can feel to support such decisions. We see no basis under which the Trust should have convinced Mr E to go against its own proposed decision, given the risk of harm involved.
19. The evidence shows the Trust acted appropriately in accordance with the relevant guidance. We see no signs of maladministration (fault). For this reason, we will not investigate further. We understand this may be upsetting for Mr E and his family, given the sensitivity of the case and the length of time taken to make a decision.
Use of a fentanyl-based painkiller
20. In early April 2019, Mrs E’s doctors prescribed the use of a mix of 180 mcg [micrograms] of hyoscine and 50 mcg fentanyl as a painkiller. This is a strong painkiller which depresses the respiratory system.
21. Mrs E died the following day and the family believe the painkiller caused her death. The family also believe the Trust did not tell them about the risks of using this painkiller as they would have protested.
22. To understand whether it was appropriate for the Trust to prescribe the painkiller and the Trust’s duty to consult the family to do so, we have looked at sections 16 and 34 of the General Medical Council’s ‘Guidance on Good Medical Practice: Prescribing Medications’ and NICE CG 140.
23. Section 16 says clinicians must provide effective treatment based on the evidence and give relief from pain and distress whether or not a cure for illness is available. Section 34 says clinicians should consult with patients or relatives about medications.
24. The Trust has recorded in detail the reason it used a fentanyl-based painkiller was because Mrs E had had kidney failure. With low kidney function, less powerful painkillers would not have had much impact on Mrs E’s pain and distress. The Trust say they asked the palliative care team (which provides support and care for people with an incurable illness) for guidance advised Mrs E’s family she was nearing the end of her life.
25. Our clinical adviser confirms Mrs E had kidney failure and the pain medication the Trust gave her as she approached the end of her life was appropriate and in line with guidance.
26. Section 34 of the guidance suggests doctors consult patients or their relatives regarding medications, if possible. It appears this consultation did not happen but doctors are only advised to consult and the needs of the patient overrule other factors. The medical records show Mrs E was in pain and distress and the doctors acted appropriately to relieve this through the most appropriate medication.
27. There is no sign in the records to suggest Mrs E lacked capacity for decision-making, so, at first, the family would not need to be involved. When doctors made the decision to use the drug, the family were told about the possible outcomes. Under the guidelines referred to above, the family did not have any power to stop this treatment. But we have seen nothing to suggest the Trust was not working in Mrs E’s best interests.
28. We can see no signs of maladministration (fault). The Trust acted in line with guidance when providing pain relief to Mrs E. We will not be investigating this matter further. We understand Mr E’s family have been through an upsetting time and have had a long wait for our services and our decision. Given the sensitive nature of this subject, we hope the family understand we wanted to make sure we had the right answer for them and this can take time.