Supply of medicine
13. The Trust acknowledged nurses did not order replacement stock of hyoscine butylbromide (a medication used in the management of respiratory secretion at the end of life). The Trust said this caused a delay of around 40 minutes in nurses being able to give this medicine.
14. The Trust apologised for its mistake and detailed the action it took as a result of Mrs M’s complaint to improve its service. The Trust have developed a palliative care checklist for clinicians to use. The checklist covers the timely ordering of medications and acts as a prompt to nurses when they complete it. The Trust also said it would highlight the importance of timely ordering of medications to its staff.
15. Mr V’s medical records show nurses gave him six ampoules (vials) of hyoscine butylbromide through his syringe driver at 4.50pm in mid- May. These were the last six ampoules available, leaving stock of zero.
16. Nurses attended Mr V again after a phone call from his family who were concerned his condition was getting worse. Nurses noted Mr V was suffering from respiratory secretions, but there was no hyoscine butylbromide left at the property.
17. Nurses arranged Mr V’s prescription and collected it from the pharmacy. Nurses gave Mr V one ampoule of hyoscine butylbromide at 8.35pm.
18. NICE guidance QS144 says, ‘Adults in the last days of life who are likely to need symptom control are prescribed anticipatory medicines with individualised indications for use, dosage and route of administration.’ It says service providers should, ‘ensure that systems are in place… to ensure access to medicines.’
19. NICE guidance NG142 says, ‘Adults approaching the end of their life… should have access to a healthcare professional available 24 hours a day, 7 days a week… [and] an out-of-hours pharmacy service that has access to medicines for symptom management.’
20. Our adviser explained this means a patient’s end of life medication should always be available. There was no stock of hyoscine butylbromide available for Mr V for three hours and 45 minutes between 4.50pm and 8.35pm.
21. Mr V’s records show the Trust were increasing the amount of hyoscine butylbromide given by his syringe driver each day. And, the Trust prescribed the PRN medicine (meaning as required), so Mr V was likely to need more doses of it.
22. Our adviser explained there is no way of predicting when a patient may need another PRN dose of hyoscine butylbromide. We can look at when Mr V needed another dose by considering when his family alerted nurses of his worsening condition.
23. The note in Mr V’s record that details the call from his family has a time stamp of 7.39pm. This note also details nurses going to Mr V’s property, examining him and making plans to collect another supply of his medication. Nurses likely added this note after they completed these actions.
24. Had the Trust kept a good supply of hyoscine butylbromide in stock as it should have, nurses likely would have been able to give this as soon as they examined Mr V. While we cannot say exactly when this would have been, it would have been a short time before 7.39pm. Nurses were unable to give hyoscine butylbromide until 8.35pm. We can say the amount of time Mr V was without the medication he needed was about an hour.
25. Mr V sadly died shortly after nurses gave the dose of hyoscine butylbromide. The Trust recorded the time of Mr V’s death as 9.40pm.
26. We understand it would have been distressing for Mr V’s family if they thought he was not getting the correct care. We have found there was a failing in the care because the Trust did not act in line with the NICE guidance.
Impact
27. Mrs M thinks this caused her father to die while in a lot of pain.
28. As well as hyoscine butylbromide, Mr V was also prescribed morphine (a pain relief medicine), midazolam (a sedative) and levomepromazine (an end of life medication). Our adviser confirmed Mr V always had a supply of these three other medicines available at his property.
29. NICE’s guidance on palliative secretions says, ‘During the terminal phase of a person's illness, airway secretions may accumulate and result in gurgling and rattling noises during inspiration and expiration.’ It says, ‘It may be difficult to tell whether noisy secretions in the last few hours of life are causing distress to the person.’ It also says a patient ‘will generally not be distressed by the rattle.’
30. NICE’s guidance explains to manage noisy respiratory secretions at the end of a patient’s life, ‘an antimuscarinic drug [used to block some of the actions of the nervous system and not to give pain relief] can be considered to reduce saliva production.’ It recognises ‘such noises may be distressing to some families or carers.’ Hyoscine butylbromide is one of the antimuscarinic drugs suggested to reduce saliva production.
31. Hyoscine butylbromide is an antimuscarinic drug and not an analgesic. This means we cannot say the Trust’s failure to make sure Mr V had a good stock of hyoscine butylbromide would have caused him to be in an increased amount of pain. But, Mr V may have experienced some distress.
32. Mrs M says the end of her father’s life was distressing for her and her family to witness and it still affects them to this day. Mrs M also tells us she was not able to tell other members of the family how her father died, as she did not want to upset them.
33. The note from 7.39pm in Mr V’s records confirm he was experiencing respiratory secretions and breathing difficulties. If hyoscine butylbromide had been in stock as it should have been at Mr V’s property, nurses could have given it to him at that point. This likely would have reduced saliva production and reduced the noises Mr V was making which were causing distress to his family.
34. We have found that not making sure Mr V had a good stock of hyoscine butylbromide was not in line with guidance. We recognise witnessing someone at the end of their life in any circumstances is incredibly difficult. The events would have been extremely distressing for the family whether the Trust gave Mr V the medication quicker or not.
35. It is likely Mrs M and her family experienced some further distress when they thought Mr V was in pain because hyoscine butylbromide was not available.
36. We recognise the distress felt by the family likely would have been felt after his death. We can also understand why Mrs M would have felt unable to share some of the details of her father’s death with other members of the family.
37. Mrs M explains the ongoing distress she and her family felt was in part guilt that they should have done more about hyoscine butylbromide not being available. Mrs M also says this has scarred the family emotionally and they are now in the process of getting counselling.
38. Experiencing bereavement in such difficult circumstances will have a huge impact on a family. We understand Mr V’s family feel they need counselling to manage their bereavement and loss. We cannot say the time without hyoscine butylbromide is the only reason they would need counselling.
Outcome wanted
39. Part of the outcome Mrs M wants is for the Trust to make service improvements.
40. Our Principles say to put things right, organisations should consider providing ‘an apology, explanation, and an acknowledgement of responsibility’, as well as ‘remedial action, which may include reviewing or changing a decision on the service given to an individual complainant; revising published material; revising procedures, policies or guidance to prevent the same thing happening again; training or supervising staff; or any combination of these.’
41. The Trust have acknowledged its mistake, apologised for it and explained the action it has taken to reduce the risk of a similar thing happening with another patient. We have reviewed this action and we feel it is appropriate. We would therefore not expect the Trust to make any more improvements.
42. The other outcome Mrs M wants is a financial payment.