Communication and syringe driver
14. Before we decide if we should conduct a detailed investigation of 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 have not found any signs something has gone wrong.
15. Mrs E says in early April the doctor told her Mr N had 24 hours to live. The following morning, the ward nurse attached a syringe driver and advised the family they could ask for a top-up when necessary. The nurse told Mrs E the doctor would increase the dosage the following morning. Mrs E was confused and upset staff did not communicate the purpose of attaching the syringe driver and she felt by saying the doctor would increase the dosage the following morning the ward staff were unaware her son had 24 hours to live.
16. In the Trust’s response, it stated the specialist palliative care team reviewed Mr N on the day he died and spoke to him and his sister about starting him on a syringe driver to help his symptoms.
17. NICE NG31 section 1.1.1 says: ‘if it is thought that a person may be entering the last days of life, gather and document information on: • the person’s physiological, psychological, social and spiritual needs • current clinical signs and symptoms • medical history and the clinical context, including underlying diagnosis • the person’s goals and wishes • the views of those important to the person about future care.’
18. The Trust completed a document called ‘individual care plan for the anticipated last days of life’ for Mr N as part of his medical records. It noted Mr N’s medical history and diagnosis. It recorded clinical observations and his physiological, psychological and spiritual needs. The Trust completed the document with family present.
19. NICE NG142 says end-of-life care includes the care and support given in the final weeks and months of life and planning and preparing for this.
20. The WHO Fact Sheet explains the role of a palliative care team is to provide guidance to general staff. They offer guidance and review patients when asked to do so, especially when clinicians need expert advice with symptom control and end-of-life care.
21. In this case, the palliative care team made recommendations for Mr N’s medication due to his symptoms and recognition he was dying. In early April, the palliative care team reviewed Mr N twice - once in the morning to assess and plan his care and once in the early evening to review his symptoms and whether the care was helping. The medical records note Mr N was a bit more relaxed but still felt anxious. The Trust gave him medication to help him relax. Just-in-case medication was also available for Mr N if he needed it. Just-in-case medication is medication a patient can decide to take if they feel they need it.
22. NICE NG31 section 1.5.6 says to consider using a syringe driver if more than two or three doses of any medicines have been given within 24 hours.
23. NICE guidance section 1.2.4 says ‘provide the dying person, and those important to them, with: • accurate information about their prognosis (unless they do not wish to be informed), explaining any uncertainty and how this will be managed, but avoiding false optimism • an opportunity to talk about any fears and anxieties, and to ask questions about their care in the last days of life • information about how to contact members of their care team • opportunities for further discussion with a member of their care team.’
24. In early April, the Trust told Mr N and his family about his prognosis. The palliative care team reviewed Mr N, discussed his fears and also spoke to the family. The notes also say the team discussed the purpose of the syringe driver with the family.
25. Our adviser explained doctors cannot always predict exactly when a patient will die but if they are likely to die in the near future they will make plans for this. In the last days of a patient’s life, they will aim to manage their pain and symptoms.
26. NG31 says doctors need to review a patient every 24 hours. This is so they can assess the patient’s needs and symptoms. They can review the medications in the syringe driver and make adjustments as needed.
27. We understand how difficult these events were for Mrs E. Being told your son does not have much time to live is devastating. Although the doctors had told Mrs E her son likely had 24 hours to live, they could not predict exactly when someone will die. This is the likely reason why the nurses said he would have a review the following day. It is not a sign the nurses were unaware of how serious the situation was or that care fell below what we would expect. We have seen the Trust managed Mr N’s pain and symptoms and reviewed him in line with NICE.
28. We recognise Mrs E did not fully understand the need for the syringe driver. The records say the Trust informed the family. There are two different views of the information provided to the family. We recognise the events would have been distressing for Mrs E and there would have been a lot of information to take in. From what we have seen, we cannot say the information provided to the family fell short of what we would expect.
Pain
29. Mrs E told us her son was not sedated effectively in the last three hours of his life.
30. The Trust said Mr N’s initial wishes were he should not be heavily sedated, which it wanted to respect as far as possible. The Trust says it prescribed medication with additional ‘top-up’ when needed. The Trust recognised there is no clear documentation of Mr N’s responses to those top-ups, and it will tell the staff about this so they can improve future practice. It explained Mr N was agitated during his final hours. This is a well-recognised symptom that can appear unpredictably and acutely at the end of someone’s life, particularly where they have had a traumatic and sudden catastrophic diagnosis, which was the case for Mr N.
31. NICE NG31 sets out the steps to consider on managing a patient’s pain, breathlessness, anxiety, delirium and agitation.
32. The records show Mr N was not in pain just before he died. On the day he died, he was breathless and anxious. The records say the Trust put him on 2l of oxygen for his breathlessness. Our adviser explained anxiety can be complex and fear of dying can make it worse, especially when the patient gets worse quickly, as Mr N did. The Trust had limited resources to manage this other than medication. The records show the Trust chose to give Mr N anxiety medication in accordance with palliative care recommendations and guidelines.
33. The records note Mr N had respiratory problems. He was going to struggle when he was taken off oxygen. We reviewed Mr N’s medication chart. Our adviser explained it is often difficult to control symptoms of agitation at the end of life, and this often leads to total pain (suffering that involves all of a person's physical, psychological, social, spiritual and practical struggles). Because of the nature of total pain, medication does not always help with it.
34. The medication chart says the palliative care team assessed Mr N and gave him just-in-case medication to manage his distress. It also put him on a syringe driver to give continuous relief based on his previous needs and frequent injections were required to respond to his needs if required.
35. Mr N was a young man who was diagnosed and had to accept he was dying in a very short time (two weeks). Our adviser said this is often difficult for all concerned and often causes total pain for the patient. We can see from the evidence Mr N had a distressing death, but this is not something that can always be controlled. Our adviser explained the Trust could have recommended heavy sedation for Mr N but we note from the Trust’s response it wanted to respect Mr N’s wishes. However, the Trust recognises patients’ wishes do change.
36. We understand Mrs E would have wanted her son’s final hours to be as peaceful and comfortable as possible. Having considered the evidence and the advice we received, while the Trust could have considered heavily sedating Mr N, we consider Mr N’s symptoms at the end of life were managed appropriately and in line with NG31 guidance with the use of regular just-in-case medication at the end of Mr N’s life.
Doctor review
37. Mrs E told us her son was in a lot of pain and this caused her a lot of distress. Mrs E asked if a doctor could see her son during his ordeal. Mrs E told us a member of the ward staff told her there was only one doctor managing three wards and the doctor would not be able to do anything.
38. There are no standards/guidance in place on whether a doctor should be present with a patient in the last hours of their life. Our adviser explained it is not standard practice for a doctor to be present, but ward staff would be present to carry out checks and make sure the patient is comfortable with the use of just-in-case medication. In most cases, patients prefer to have family present rather than medical staff.
39. Mr N’s medical records show the staff checked on him from 1am to 8pm. This was appropriate. We have not seen any need for a doctor to attend.
40. We note the palliative care team was not available when Mr N died. While this does suggest a failing, the Trust’s complaint response says it has made changes in response to the complaint. The Trust now has a palliative care team available seven days a week. This is appropriate.
41. We recognise this has been a distressing experience for Mrs E. Going through the complaint process can be difficult at an already challenging time. The Trust considered Mrs N’s experience. It took her experience on board and made changes such as providing a clear explanation to patients and family and recruiting more staff to the palliative care team to provide support to patients who are at the end of life.