A hospice in the South Cambridgeshire area

4. Mr O complains about the care and treatment his late wife, Mrs O received whilst at the Hospice from 7 August 2022 until 29 September 2022. He specifically complains that:

• staff failed to manage Mrs O’s pain effectively and the end of life care she received was below standard • staff paid no regard to Mrs O’s hearing problems and refused to lower their face masks when talking to her. Mrs O struggled to understand them as a result • staff prescribed Mrs O medication without her consent.

5. Mr O says his wife suffered with excess pain, confusion, and a lack of dignity in her final days.

6. Mr O would like the Hospice to make service improvements.

7. Mrs O was admitted to the Hospice on 7 August 2022 for supportive care and symptom control focusing on quality of life, after her metastatic breast cancer had spread and she had chosen not to have any more chemotherapy.

8. Mrs O was complaining of pain, nausea and vomiting. She also had hypercalcaemia (a condition in which the calcium level in the blood becomes too high).

9. Mrs O was able to go home on 26 August with a plan for home visits from the hospice team and district nurses, as her symptoms had stabilised and there had been no changes to her medications. However, Mrs O had to return to the hospice as her symptoms had worsened.

10. Mrs O’s condition continued to deteriorate over the next few weeks and she died in the Hospice on 29 September 2022.

15. 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 indications that something has gone wrong.

End-of-life-care

16. Mr O said the Hospice failed to provide an acceptable standard of end-of-life care to his wife, specifically failing to manage her pain. Mr O said this meant his wife’s final days were not as comfortable as they should have been, and she died in distress.

17. The Hospice said the records showed that staff were appropriately assessing Mrs O’s pain frequently and responding to her pain appropriately throughout the duration of her stay.

18. The Hospice also explained that although it did not have access to Mrs O’s CT scan, her symptoms suggested the cancer had spread to her brain. The Hospice said in the final few weeks of her life, this caused swelling that affected her ability to swallow. It also caused confusion and restlessness. The Hospice said this may have explained why it seemed to Mr O that his wife was in distress.

19. NICE’s Clinical Knowledge Summary for pain management in end-of-life care says:

‘an individualised care plan including the areas of symptom control and anticipatory prescribing should be created.

Follow the principles of pain management used at other times when caring for people in the last days of life, for example matching the medicine to the severity of the pain and, when possible, using the dying person’s preferences for how it is given’.

20. The Hospice has provided a copy of its own Guidance for Care of the Dying Person, in which it says a personalised care plan should be created which includes essential and non-essential medication, and anticipatory medications for symptoms in the last days of life.

21. This is in line with the national guidelines, and the records show the Hospice created a detailed care plan for Mrs O on the day of her arrival, 7 August 2022. This care plan covered Mrs O’s clinical management, symptom control, and anticipatory medication. The plan also highlighted the need to provide spiritual and psychological support to Mrs O and her family.

22. National guidelines from Palliative Care Matters on pain management say that treatment should start at the level of the World Health Organisation (WHO) analgesic ladder, appropriate for the severity of the pain that the patient is suffering. This is a three-step approach to pain management in palliative care patients, which says:

‘Step one. For mild pain: regular prescription of non-opioid such as paracetamol and/or NSAID (non-steroidal anti-inflammatory drug, medications commonly used to relieve pain, reduce inflammation and lower fever)

Step two. For mild and moderate pain: A non-opioid plus a weak opioid and an adjuvant (medication that is typically used for indications other than pain control but provides analgesia in some painful diseases, particularly cancer)

Step three. For moderate to severe pain: A strong opioid and an adjuvant should be prescribed regularly, and the dose of strong opioid titrated according to analgesia requirements’.

23. Our adviser said throughout Mrs O’s admission at the Hospice, staff followed a clear plan for her pain management medication that was in line with these guidelines. The adviser said the Hospice treated Mrs O with paracetamol, oral morphine, amitriptyline (an adjuvant), and towards the end once her symptoms were worsening, a continuous subcutaneous infusion (CSCI, a continuous pump of liquid medication, which included morphine, delivered by a needle under the skin).

24. The evidence shows the Hospice also treated Mrs O for nausea and vomiting, constipation (due to the opiates she had been taking for her pain), brain metastases, hyperglycaemia (high blood sugar), hypercalcaemia (high calcium levels) and absence seizures. Our adviser said the medication Mrs O received for these were in line with the PANG guidelines.

25. We understand Mr O’s view that his wife was in distress towards the end of her life and the Hospice did not manage her pain effectively. The evidence we have seen shows staff treated Mrs O in line with relevant standards and guidelines. Although the records show Mrs O was in distress at times due to her illness, we consider Hospice staff took action to manage this as effectively as possible.

Consent

26. Mr O also said that his wife did not consent to some of the medications that Hospice staff prescribed. He said he often felt that some changes staff made to Mrs O’s medication were experimental.

27. The Hospice said that Mrs O’s care was individualised and based on her changing needs. Mr O expressed particular concern about his wife’s sensitivity to morphine. He said she always wanted to be in control and the morphine ‘took her out completely’.

28. The Hospice explained that Mrs O’s medications were adjusted to help with the symptoms, but towards the end of her life she was losing consciousness and was therefore not able to make decisions.

29. The Hospice said all decisions once Mrs O was unable to consent were made in her best interests.

30. GMC Good medical practice guidance that was in place at the time of Mrs O’s treatment says that doctors should treat patients as individuals and respect their dignity. It also says staff should:

• ‘listen to patients and respond to their concerns and preferences • give patients the information they want or need in a way they can understand • respect patients’ rights to reach decisions with you about their treatment and care’

31. Mrs O’s records show there were several discussions with staff where she demonstrated understanding and consented to the treatment and management plans during the admission.

32. Our adviser said the evidence shows that staff at the Hospice were clearly respecting Mrs O’s right to decide on the treatment and medications she was receiving throughout her admission, until she was unable to provide her consent.

33. We recognise Mr O felt his wife was in a vulnerable situation and thought she was unable to understand the various decisions that staff were making about her medication. The evidence we have seen shows staff had communicated regularly with Mrs O about her treatment and she had understood and agreed to the actions.

34. Mrs O’s condition continued to deteriorate over the following weeks. The clinical notes show she was feeling dazed and confused when waking up in the morning and showing signs of progressively raised intracranial pressure (pressure of the fluid and tissues within the skull), likely due to the spread of cancer to her brain.

35. The evidence shows Mrs O had a conversation with a consultant on 26 September and nodded in agreement when the consultant explained the role of midazolam (a relaxant drug used to treat terminal agitation and restlessness). We have seen no indications from the records that Mrs O lacked the capacity to consent to this decision.

36. Over the next few days, Mrs O became more unresponsive as her illness progressed and was not communicating with staff as much. Our adviser said all decisions staff made once Mrs O was no longer able to consent were taken in her best interests and followed a clear plan of care which Mrs O had already agreed to.

37. We understand Mr O’s concerns that the Hospice used several different medications for his wife despite her telling him that she did not wish to have them. We have seen no indications that Mrs O did not consent to the treatment and medication she received.

Face masks

38. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the events complained about had a negative effect which the organisation has not put right. Having done so we consider the Hospice has already done enough to put right the impact of these events.

39. Mr O said his wife was hard of hearing and there were occasions when staff failed to take this into consideration when speaking with her. He said this caused her distress and confusion when she was already vulnerable.

40. The Hospice said it accepted there were occasions when its staff could have done better and apologised for the distress this caused Mrs O.

41. NICE guidelines on patient experience in NHS services say that staff should:

‘Ensure that factors such as physical or learning disabilities, sight, speech or hearing problems and difficulties with reading, understanding or speaking English are addressed so the patient is able to participate as fully as possible in consultations and care’.

42. The records show Mr O had made staff aware of his wife’s hearing problems. Staff therefore should have shown more sensitivity to Mrs O’s individual circumstances. We appreciate that staff not always removing their masks may have made it harder for Mrs O to understand what they were saying, which may have ben upsetting for her.

43. The Hospice said it had undertaken a project with the Royal National Institute for the Deaf who advised it on what equipment to purchase, including a portable hearing loop, personal amplifier and headphone systems. It said it has also put up signs to remind staff to remove face coverings when communicating. The Hospice said it hoped these measures would help to alleviate the anxieties that Mr and Mrs O experienced and apologised for this.

44. Our principles for remedy say organisations should use the lessons learned from complaints to ensure that poor service is not repeated. The principles explain that part of a remedy may be to ensure that changes are made to policies, procedures or systems and the complainant receives an assurance that lessons have been learnt.

45. In dealing with Mr O’s complaint about the use of face masks, the Hospice provided assurances that it had learned lessons and explained what it had done to put things right. It apologised for letting Mr and Mrs O down and reflected on what it could have done better.

46. We recognise Mr O feels the Hospice did not show enough consideration to Mrs O’s vulnerability and her individual needs. We consider the Hospice has shown accountability and taken meaningful actions to put things right.

47. As an outcome to his complaint, Mr O wanted the Hospice to put service improvements in place. We consider the Hospice has already done this. As such, we will not be taking any further action on the complaint.

Conclusion

48. We can see this was a tough time for Mr O and his family, as they had to see Mrs O’s health rapidly worsen. We hope our work will provide reassurance that the clinical decisions the Trust took were all in line with relevant standards and guidelines.

49. We acknowledge there may have been an area where Hospice staff did not always act with the necessary amount of compassion for Mrs O’s circumstances. We consider the Trust has reflected sufficiently on what went wrong and has taken the necessary actions to put things right for future patients.

1. We have carefully considered Mr O’s complaint. We recognise this was a very difficult time for Mr O and his family, and he wanted to ensure his wife got the best possible end-of-life care.

2. For Mr O’s complaint about the clinical care provided to his wife, we have considered all the available evidence, and we have seen no indications the Hospice did anything wrong.

3. For Mr O’s complaint about Hospice staff not lowering their face masks when speaking to his wife, we consider the Hospice has reflected on this and has taken meaningful actions to improve its service.