Summary: Mr B complained that the Care Provider failed to provide appropriate and timely palliative care to his mother, Mrs C before she died, causing the family significant distress. We have not found fault causing injustice in the Care Provider’s actions.

The complaint

1. Mr B complained that Ashmere Derbyshire Limited (the Care Provider) failed to provide appropriate and timely palliative care to his mother Mrs C before she died in March 2024, causing her and the family significant and enduring distress.

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The Ombudsman’s role and powers

2. We investigate complaints about adult social care providers and decide whether their actions have caused an injustice, or could have caused injustice, to the person making the complaint. I have used the term fault to describe such actions. If they have caused a significant injustice or that could cause injustice to others in the future we may suggest a remedy. (Local Government Act 1974, sections 34B, 34C and 34H(3 and 4) as amended)
3. If we are satisfied with an organisation’s actions or proposed actions, we can complete our investigation and issue a decision statement. (Local Government Act 1974, section 30(1B) and 34H(i), as amended)

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How I considered this complaint

4. I considered evidence provided by Mr B and the Care Provider as well as relevant law, policy and guidance.
5. Mr B and the Care Provider had an opportunity to comment on my draft decision. I considered any comments before making a final decision.

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What I found

6. Mr B’s mother Mrs C had a terminal illness which caused breathing difficulties along with a diagnosis of dementia. She also experienced anxiety. She was living in a home run by the Care Provider (the Home). The family and Mrs C had agreed an end of life pathway in the summer of 2023. By March 2024 her condition was deteriorating, and she was receiving oxygen therapy to alleviate her symptoms.
7. On 22 March 2024 the care records noted she was anxious and hyperventilating. The nurse gave reassurance and oxygen to calm Mrs C. Mr B also visited.
8. On 23 March 2024 Mrs C became very agitated and breathless after a visit from other family members. Staff increased the oxygen, encouraged different breathing techniques and gave other medication. They contacted Mr B and the Home’s manager who came to assist.
9. On 24 March 2024 the manager spoke to Mr B while he was visiting and explained that Mrs C’s condition was deteriorating due to the progressive diagnosis. Mr B feels that some staff were still attributing the breathlessness to anxiety rather than her deteriorating condition. The manager planned to contact the dementia palliative care team to review Mrs C’s medication as the current management was not effective.
10. On the morning of 25 March 2024, the Home’s clinical nurse rang Mrs C’s social worker to inform them of the deterioration in Mrs C’s condition, the respiratory nurse to request an oxygen mask instead of a nasal canula, and the dementia palliative care team. The social worker agreed to visit later that day to review Mrs C. The dementia palliative care team rang back, and the nurse gave a full account of Mrs C’s symptoms and presentation along with details of her reaction after a family visit. The team asked the GP to increase the dosage of oral morphine and to prescribe a new anti-anxiety medication.
11. The social worker visited in the afternoon to discuss the issues with Mrs C’s agitation. The Home’s manager updated her with all the professional involved in Mrs C’s care to manage her symptoms. The social worker went through the morphine administration and care notes and the manager detailed the visit by a family member.
12. The GP rang back in the afternoon and spoke to the clinical nurse, increasing the morphine dose for shortness of breath and a new medication for anxiety. They planned to do a face to face visit on 28 March 2024, as did the palliative nurse, to review Mrs C’s care. The carers and the nurse settled and reassured Mrs C at regular points throughout the day and night.
13. On the morning of 26 March 2024, the Home requested a GP visit due to Mrs C’s increased anxiety, distress and inability to use the oxygen properly with the nasal canula. After this call the manager spoke to Mr B updating him on the deterioration in Mrs C ‘s condition and the GP involvement. Two hours later the nurse gave Mrs C medication via an injection as oral medication was no longer effective. They also made an urgent referral to the GP for advice in addition to updating Mr B and the social worker.
14. Staff continued to give Mrs C increased oxygen and sat with her for extended periods. They once again called the social worker to inform her of the continued deterioration in Mrs C’s condition. Other family members visited and were unhappy with Mrs C’s condition.
15. Late in the afternoon a GP visited who prescribed a syringe driver and anticipatory medication. Staff provided essential oils chosen by Mr B who said he was very happy with the care given.
16. The equipment provider said they would deliver the syringe driver on the following day. Later that day the Home made an urgent request to the GP surgery for a syringe driver. A more senior GP did not authorise the syringe driver but offered different medication and said they would review the situation on the routine ward round on 28 March 2024.
17. During the night Mrs C deteriorated further. The staff on duty, with input from Mr B and other family members, made an emergency call to the 111 service for a syringe driver. A doctor arrived in less than an hour, provide an oxygen mask and prescribed a syringe driver which was put in place several hours later. Mrs C died shortly afterwards.

Formal complaint

18. On 12 April 2024 another family member complained to the Home about several issues regarding the care of Mrs C prior to her death. They said Mrs C was in extreme discomfort during the last 15 hours of her life and the palliative care was inadequate. They said the Home only informed them on 26 March 2024 about the deterioration in her condition and felt that GP advice should have been sought sooner along with the anticipatory medication to relieve her distress. They said medication was locked away on another floor and took too long to get, leaving Mrs C in severe distress for longer than was necessary.
19. The manager of the Home acknowledged the complaint the same day. In respect of the management of Mrs C’s care she said she did not know why the senior GP overruled the first GP in respect of the syringe driver and she would find out. She agreed the medication storage needed a review. She said the social work team felt that Mrs C’s needs were best met at the Home. The care for Mrs C involved regular nurse visits, along with support from the dementia palliative care team, respiratory and oxygen teams. She agreed to get back to the complainant after further investigation.
20. The Care Provider started an investigation into the care of Mrs C. It spoke to the hospital regarding the input from the oxygen and respiratory teams and the GP.
21. The hospital said that it was usually impossible to eradicate all symptoms even with a syringe driver. While anticipatory medication will suppress the demand for oxygen from the brain/central nervous system, its effectiveness (along with that of syringe drivers) varied from person to person during end of life care. Furthermore, while palliative care aims to keep a person comfortable it can be very complex for someone with Mrs C’s condition.
22. The GP confirmed they had seen Mrs C in February 2024 and her condition at that point was stable. However, she experienced a rapid deterioration shortly before she died on 27 March 2024. They said there was a bit confusion on Saturday 24 March when the Home informed the GP of Mrs C’s increased anxiety after a visit by a family member. As result of this Mrs C’s morphine was increased and a new anti-anxiety medication prescribed. The GP confirmed at this point that the Home was concerned about Mrs C’s breathing being erratic and the action taken by the Home to contact the surgery was correct. They noted that the Home contacted the surgery again on Tuesday 26 March again with concerns about Mrs C’s breathlessness and attendant anxiety. They said that the prescribed medication aimed to make Mrs C more comfortable but would not always eradicate the symptoms of the condition. They said on reflection Mrs C should have been on a syringe driver sooner, but again it may not have prevented all the symptoms of the condition. They had no concerns about the actions of the Home in relation to Mrs C’s end of life care.
23. The Care Provider also looked at all the care records, the family emails, telephone conversations, face to face meetings and spoke to staff. It compiled a complaint response which it provided to the family, including Mr B during a meeting on 18 June 2024.
24. The response contained a detailed timeline of the care given between Saturday 23 and Wednesday 27 March 2024. It said the deterioration in Mrs C’s breathing was recognised by staff and they obtained appropriate advice from all the medical professionals involved in response. It found that the Home followed the required procedure in its provision of end of life care to Mrs C, co-ordinating appropriately with medical professionals, it followed guidance in respect of the provision of anticipatory medication and requested additional support when Mrs C deteriorated, the Home was fully staffed at the time and all staff had end of life care training.
25. It said it had taken some action as a result of the concerns raised in the complaint, including arranging syringe driver training for all nurses working at the Home, arranging an end of life care meeting at least once a month with staff and continuing to work with the local hospice on best practice in this area.
26. Mr B sent a letter to the Care Provider towards the end of September 2024 asking some further questions including whether Mrs C had bad episodes on Monday 25 March or if they only started late on the Tuesday morning and repeating his view that the staff were too concerned about Mrs C ‘s anxiety arising from the family member visit rather than from her actual breathing difficulties and that this impacted the care given delaying the provision of anticipatory medicine.
27. Mr B did not receive a further reply and complained to us in January 2025.

Analysis

28. I appreciate that the Mrs C and the family went through an extremely distressing experience during Mrs C’s final hours and I am sorry for that. But it is not my role to comment on medical decisions taken in respect of Mrs C’s care. That is a health need and the responsibility of the medical professionals.
29. It is my role to look at whether Home took reasonable steps to identify Mrs C’s deterioration and respond to it during those final days. It is apparent that Mrs C’s deterioration was quite rapid, more rapid than the GP or the palliative care team anticipated as they had both arranged visits for the 28 March 2024.
30. The records show Mrs C had one episode of breathing difficulty on Friday, and another incident later on Saturday, following the family member visit. On Sunday the Home acknowledged to Mr B that her condition was deteriorating. On Monday the Home contacted the dementia palliative care team, the respiratory and oxygen nurses, the social worker and GP. The social worker visited, the GP increased medication and the palliative care team agreed to visit on Thursday. Staff raised anxiety as a concern, but they also focussed on Mrs C’s breathing difficulties and her deteriorating condition. The evidence does not show that staff concentrated disproportionately on the anxiety arising from the family member visit.
31. The decisions about the syringe driver were medical decisions made by doctors and it is not an issue I can comment on. However, I have found no fault in the action the Home took: staff appropriately sought and followed the advice from multiple medical professionals. I have not concluded the professionals were misled by the Home wrongly focussing on anxiety from the family visits rather than her breathing difficulties.
32. I have also taken into account that the GP said Mrs C’s anxiety had multiple contributory factors and they had no concerns about the care or the action the staff took.
33. I also consider the Care Provider undertook a thorough and detailed investigation into the events leading to Mrs C’s death.

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Decision

34. I find no fault.

Investigator’s decision on behalf of the Ombudsman

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Investigator's decision on behalf of the Ombudsman