An independent provider in the Shropshire area

3. Mrs E complains about the end-of-life care and treatment provided to her mother, Mrs A, by the Hospice and its affiliated community services, from 30 April 2025 until she sadly died on 5 May 2025. She complains:

• from 30 April, she was not provided with sufficient pain relief - despite the family asking for increased sedation to relieve her pain, this was not provided until the last 18 hours of her life • despite ongoing contact with the service regarding concerns, no hospice clinician attended in person during this period.

4. Mrs E says her mother suffered unnecessary pain and suffering in her final days. She says the traumatic nature of her mother’s final days has had a profound and lasting impact on her family. She says instead of being able to grieve their loss with peace they are haunted by the memory of her distress and the helplessness they felt as they watched her die in pain.

5. As a result of bringing this complaint to us, Mrs E is seeking an apology, service improvements and level 3 financial remedy.

6. Mrs E lived with a variety of conditions that she had had for many years before she died. These included right leg amputation, heart failure, kidney dysfunction, type 2 diabetes, sarcoidosis and oesophageal cancer.

7. Prior to her care from the hospice, Mrs A had had a long stay in hospital with exacerbation of her already existing heart failure. She was discharged home for the final stages of her life and Mrs E contacted the hospice to arrange care for her mother at home from 30 April.

8. Mrs A had previously lived with complex pain, including severe phantom limb pain that was managed effectively with gabapentin. This treatment ceased on 30 April when she was no longer able to swallow. From then on, Mrs E says no alternative pain relief was introduced by the hospice nurses and her mother’s suffering increased rapidly.

9. Mrs A sadly died on 5 May 2025.

10. Mrs E complained to the hospice on 12 May 2025 and the hospice responded soon after. Mrs E brought her complaint to us on 23 June 2025.

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 indications that something has gone wrong.

15. Mrs E says from 30 April 2025 onwards, her mother was not given sufficient pain relief. She says despite the family asking for increased sedation to relieve her pain, this was not provided until the last 18 hours of her life.

16. Mrs E says she expected the hospice staff to ensure her mother would be kept comfortable as she was clearly dying and in pain. She says her mother had a long-standing history of complex pain and she voiced her concerns about the gabapentin being stopped many times. She says she expected this would be taken into consideration and that titration of end-of-life medications would have been made on presenting symptoms as she was screaming out in pain.

17. Mrs E says she feels there should always have been available adequate ‘as and when needed’ (PRN) medications for break through pain, however on more than one occasion she had to chase these to ensure availability for the nurses to be able to give them. She hoped her mother would die a dignified and pain free death and that her family could have experienced a positive end of life experience, but this was not the case.

18. She says she and her family felt irrelevant in the decision making around her mother’s palliative care, even though they had so much to offer and wanted to be a part of her end-of-life care. She says everything she knew her mum needed and would have wanted, seemed to require a level of confrontation to be heard and she and her family are not confrontational people, so this just added an additional level of distress and discomfort to an already very difficult situation.

19. Mrs E says she feels that what should have been a very special and reflective point in time was stripped away and that makes her feel incredibly sad.

20. In its complaint response, the hospice says that when the situation escalated they were in constant contact with the family, the district nurses, GP, and the hospice’s nurse practitioner, and were reassessing Mrs A to try to alleviate her pain symptoms.

21. It says it does not routinely replace Gabapentin medication with anything else at the end of life as there is no ‘ideal option’ and that it used Levomeprozamine in this instance for Mrs A’s pain and agitation.

22. In response to Mrs E’s concerns about requests for increased sedation and pain relief the hospice says it gives medication in response to symptoms and it takes a while to arrive at the required dose to control symptoms. It says delays in community care means this can take a little longer than on the inpatient unit. It says it feels the doses were escalated within a short period and that the hospice nurse practitioner actively sought advice and guidance to be able to respond and feel supported in their decisions.

23. In response to Mrs E’s concerns about a consultant having never been out to visit her mother in person the hospice says her symptoms became uncontrollable over the bank holiday weekend and it does not have capacity for consultant out-of-hours home visits. It says it would have visited after the weekend. It says the hospice nurse practitioner visited many times and having them provide a physical presence and assessment was invaluable.

24. The hospice says situations like this are always difficult to manage, especially in the community where 24-hour care is not available and there are several different teams trying to work together. The hospice apologises it took longer than it would have liked to ease Mrs A’s pain and discomfort. It explains it has to show a clear rationale for increasing medication over a short time to justify its decision making.

25. We can see from the records Mrs A wished to remain at home for end-of-life care. Mrs A had a complex history in pain management as she was an amputee who had suffered from severe phantom limb pain and had not responded well to opioids. For many years prior, her pain had been effectively managed by Gabapentin.

26.By 30 April 2025, as she was struggling to swallow, the Gabapentin medication was discontinued and replaced with Oral Oxycodone to help her breathlessness. Oxycodone is used to relieve pain severe enough to require opioid treatment when other pain medications do not work well or cannot be tolerated.

27. From 2 May onwards, as her pain was worsening and in response to her family’s concerns, Mrs A was assessed via discussion between the nurse practitioner and doctor. She was then prescribed 30mg of Midazolam and 6.25mg of Levomepromazine to help with agitation and pain.

28. Records from the afternoon of 4 May show the doses of these medications were increased following discussions with the family about Mrs A’s worsening symptoms.

29. We asked our adviser what medication should have been prescribed for Mrs A from 30 April onwards, given her symptoms and that she was at the end stage of her life.

30. NICE guidance on the care of dying adults in the last days of life says, ‘medications at the end of life are specific to an individual’s needs and as such there is not a ‘one size fits all’ approach’.

31. The West Midlands palliative care guidelines identify that when patients require rapidly escalating doses of opioids or frequent use of PRN doses (more than 2 a day) that this should prompt a review of the pain management plan.

32.From the notes we can see the Doctor did review and ascertain oxycodone was not effective at managing Mrs A’s pain from 2 May and introduced midazolam and levomepromazine in the syringe driver and then increased these doses when necessary following further assessment. Levomepromazine and midazolam are commonly used in palliative care to manage agitation, delirium and distress, often in combination for enhanced symptom control.

33. As Mrs A’s pain was becoming severe the NICE guidelines on prescribing in palliative care says to consider trialling a different medication such as Ketamine or Methadone. However, our adviser says this is usually done in a specialist hospice setting so that the patient can be monitored and it is not standard practice for this to be done for a patient at home.

34. We asked our advisor whether it was a requirement for a hospice clinician to visit Mrs A at home during the period complained about.

35. The records show Mrs A had a nurse practitioner visit her overnight during the period from 30 April to 5 May as part of the hospice at home service to administer medication. We can see Mrs A’s family raised concerns about the wait time they experienced when contacting the nurse practitioner due to location and distance for them to get to their house.

36. The records show the nurse who visited Mrs A then had contact with the hospice doctor to discuss ongoing symptom control issues and changes to medication, so we can see there was input from a hospice doctor, even if they did not visit Mrs A in person.

37. Our adviser says as hospices provide voluntary support to patients at the end of their lives there is not a specific model that is followed. Hospices therefore will provide care to patient’s based on the population they serve and what the hospice can afford.

38.We can see from its website, this hospice’s care at home service only refers to nurses and healthcare assistants and does not reference doctors and therefore it was not a requirement for them to go out in person as they provided guidance to nurse practitioners through calls and discussions.

39. Mrs A was prescribed pain relief in the form of oxycodone, midazolam and levomepromazine for pain and anxiety which our adviser said was appropriate for a patient at the end of their life.

40. We have seen evidence that the medications used for Mrs A’s end of life pain were appropriate and in line with guidance. We acknowledge she may have benefitted from alternative medication, however this was not possible due to the fact that she was at home and could not be monitored closely.

41.As Mrs A was at home during this period, rather than in a hospital setting, decisions about medication changes were subject to discussion between nurses and doctors in line with the West Midlands palliative care guidelines before they could be implemented. Unfortunately, these assessments and discussions meant the changes took longer to action.

42. As this situation unfolded over bank holiday weekend, this unfortunately meant there was no capacity for a consultant to attend in person. We can appreciate how this added to the distress caused and do not underestimate this.

43. We have not identified any indications of failings in this case. Our adviser said unfortunately, at the end life despite using all medications available patients can sadly still die in pain. It is clear from the notes that clinicians tried to address Mrs A’s unresolved symptoms and unfortunately this was more difficult to manage as Mrs A was at home.

44. Complaints give us a valuable insight into the organisations we investigate, and we recognise this has been a very distressing time for Mrs E and her family. We would like to thank her for sharing her experience with us.

1. We have carefully considered Mrs E’s complaint about the hospice and the pain relief medication it provided to her mother, Mrs A in the last few days of her life. We were very sorry to hear about the circumstances of the complaint and the sad loss of Mrs A.

2. We have not seen any indications of failings in relation to the pain medication provided to Mrs A. This is because we have seen the hospice carried out pain relief care and treatment in line with guidance. We have explained the reasons for our decision below.