Summary: The complainant, Ms B, said the care and treatment provided to her late father when he was approaching the end of his life by Staffordshire County Council, Newford Nursing Home and University Hospitals of North Midlands NHS Trust fell below expected standards. She also said the Home and the Trust did not communicate properly about the plan for her father’s care when he was discharged from hospital. As a result, she said she experienced distress and confusion. The Ombudsmen did not find fault in the care and treatment provided to the complainant’s father or in the way the authorities communicated with each other. However, the Home was not open and transparent with Ms B when it communicated the timing of her father’s death in the Home. The Council and the Home have agreed to the Ombudsmen’s recommendations and will apologise, make an acknowledgement payment and improve the Home’s procedures for planning end of life care with residents and their families.

The complaint

1. Ms B complains about the care and treatment her late father, Mr Z received from Newford Nursing Home (the Home) which was partly funded by Staffordshire County Council (the Council). She also says University Hospitals of North Midlands NHS Trust (the Trust) advised her that her father was approaching the end of his life, but the Home told her otherwise. Ms B feels there has been some error or miscommunication here which caused her great distress and confusion and meant she made unneeded preparations.
2. Specifically, Ms B says the Home:
• failed to ensure her father’s clothes and sheets were clean;
• did not clean her father’s nails, face or neck;
• fed her father inappropriately and failed to prevent him storing food in his mouth;
• did not meet his colostomy needs, meaning his colostomy bag burst;
• failed to respond to her father’s pain or provide the appropriate medication for this; and
• did not respond positively to verbal complaints about her father’s treatment.
3. Ms B says the poor care her father received meant he suffered, and this caused her distress.
4. She also complains the Home failed to provide her father with appropriate end of life pain medications, including using a syringe driver. As a result, she believes her father was in pain towards the end of life. In addition, Ms B believes the Home did not tell her when her father was deteriorating at the earliest point, which meant that he died alone. Furthermore, she says the Home failed to tell her that her father had already died when she was called to see him, and she feels a lack of openness around this added to her distress.
5. As an outcome to her complaint, Ms B is seeking explanations, an apology and changes to ensure this doesn’t happen to another family.

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The Ombudsmen’s role and powers

6. The Ombudsmen have the power to jointly consider complaints about health and social care. Since April 2015, these complaints have been considered by a single team acting on behalf of both Ombudsmen. (Local Government Act 1974, section 33ZA, as amended, and Health Service Commissioners Act 1993, section 18ZA)
7. If it has, they may suggest a remedy. Our recommendations might include asking the organisation to apologise or to pay a financial remedy, for example, for inconvenience or worry caused.  We might also recommend the organisation takes action to stop the same mistakes happening again.
8. If the Ombudsmen are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, they can complete their investigation and issue a decision statement. (Health Service Commissioners Act 1993, section 18ZA and Local Government Act 1974, section 30(1B) and 34H(i), as amended)

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How I considered this complaint

9. I spoke to Ms B and reviewed the information she provided in support of her complaint. I considered Mr Z’s relevant health and care records as well as the investigation carried out by the Council. I also considered relevant law and guidance.
10. Ms B, the Council, the Trust and the Home have had an opportunity to comment on a draft of my decision.

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What I found

11. The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 set out the fundamental standards those registered to provide care services must achieve. The Care Quality Commission (CQC) has issued guidance on how to meet the fundamental standards below which care must never fall.
12. The CQC’s guidance states that care providers should provide caring and compassionate treatment which meets the needs of service users. It states that service users should be treated with dignity and respect.
13. The guidance also states that care providers should meet the nutritional needs of service users and make sure they are able to make choices about their diet.
14. The guidance also states that care providers should have an effective and accessible system for identifying and responding to complaints from people using the service.
15. In December 2015 the National Institute for Health and Care Excellence (NICE) published guidance on the clinical care of adults who are dying: Clinical guidelines 31 Care of dying adults in the last days of life. I will refer to this as the NICE guidance. Regarding managing pain, the guidance states:
• be aware that not all people in the last days of life experience pain. If pain is identified, manage it promptly and effectively, and treat any reversible causes of pain, such as urinary retention (section 1.5.11 of the NICE guidance); and
• for a person who is unable to effectively explain that they are in pain, for example someone with dementia or learning disabilities, use a validated behavioural pain assessment to inform their pain management. (section 1.5.14 of the NICE guidance).
16. Regarding recognising the need for end of life care, the guidance states:
• 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;
• assess for changes in signs and symptoms in the person and review any investigation results that have already been reported that may suggest a person is entering the last days of life. These changes include the following; symptoms such as increasing fatigue and loss of appetite; and
• seek advice from colleagues with more experience of providing end of life care when there is a high level of uncertainty (for example, ambiguous or conflicting clinical signs or symptoms) about whether a person is entering the last days of life, may be stabilising or if there is potential for even temporary recovery.
17. Regarding medication, the guidance states:
• Consider using a syringe pump to deliver medicines for continuous symptom control if more than two or three doses of any 'as required' medicines have been given within 24 hours.

What happened

18. Mr Z suffered from Parkinson’s disease and dementia and was resident at the Home from April 2016. He was admitted to the Trust’s hospital on 24 February 2018 as he was experiencing left sided focal seizures. On admission the Trust’s clinicians noted he was very unwell with a range of comorbidities including possible bowel cancer. The Trust’s staff noted he was bed-bound and mostly non-communicative.
19. Mr Z was diagnosed with pneumonia with possible aspiration and was transferred to the acute medical unit (AMU). The notes show that he was ‘nil by mouth’, but that he accepted small amounts of food during his admission. The Trust have said this amounted to ‘comfort feeding’ and would not, in the long term, sustain life. Mr Z was given co-amoxicillin to treat the infection intravenously. The Trust’s staff also inserted a nasogastric (NG) tube to provide Mr Z with his regular meds, but he removed this.
20. A doctor spoke to Mr Z’s family on 1 March 2018 and explained that he was very unwell. The doctor said Mr Z was likely at the ‘celling of care’ and that he was for palliative treatment if his condition did not improve. During a further discussion on 5 March, a doctor explained that Mr Z’s condition had not improved, and his bowel cancer was discussed. The notes show that the family were happy for Mr Z to go back to the Home for palliative care, Ms B specifically stated that she did not want staff there to ‘force feed’ her father.
21. Mr Z was discharged back to the Home on 7 March 2018. The Trust completed a ‘Prescription for rapid, palliative discharge’ form, which prescribed Midazolam to be given as needed. This medication is used for pain relief and sedation in patients near the end of their life.
22. Mr Z was also discharged with Levetiracetam, a medication used to treat epilepsy, which was to be given subcutaneously (as an injection into the skin). However, the dosage given was too high to be given subcutaneously in the Home environment.
23. The Trust tried to contact a GP to discuss changing Mr Z’s medication, but they were not available. A neurology specialist registrar discussed the situation with a palliative care consultant. The neurology registrar recommended that Mr Z be given diazepam (a medication used to relieve anxiety) in the event of seizures as an alternative. The consultant recommended that Mr Z be given Midazolam via syringe driver, which is a device which delivers a continually low dose of medication over a long period. The Trust asked the Home to set this up.
24. A nurse from the Home contacted the Trust the next day and explained they did not feel able to set up a syringe driver for Mr Z. The Trust offered to involve the district nursing service in this process, but another nurse from the Home contacted the Trust shortly afterwards to explain that Mr Z’s GP had not agreed to the use of a syringe driver and would use Diazepam as needed instead to relieve Mr Z’s symptoms. The GP made this decision as they did not feel Mr Z was specifically ‘end of life’ at this time.
25. The Home records from 8 March show Mr Z ate a full bowl of porridge. His family were concerned about this as they felt he did not want any food or drink.
    Mr Z’s wife visited the Trust that day to express her concerns about the treatment Mr Z was receiving in the Home. She felt the Home’s staff were ‘force feeding’ her husband and the GP had ‘turned down’ the decision for palliative care. The Trust contacted the Home and confirmed that Mr Z was for palliative care and comfort feeding.
26. Ms B visited Mr Z on 31 March and complained that her father’s colostomy bag had burst. She visited again on 1 April and told staff she felt her father was in pain.
27. A nurse from Douglas Macmillan Hospice visited Mr Z on 3 April. This was an unannounced visit. The notes show the nurse agreed Mr Z was not in pain at that time, but that the Home could contact the hospice for symptom control if necessary.
28. Ms B visited Mr Z on 11 April and complained that his clothes and sheets were dirty. The family also raised concerns with the Home that it had not used any of Mr Z’s anticipatory end of life care medicines. The Home’s staff explained they felt Mr Z did not need these at this time.
29. During a routine observation the Home’s staff found that Mr Z had died at 6.50pm on 13 April 2018. In their complaint response the Home’s manager said he had been slowly deteriorating over the last few weeks but there had been no marked change in his condition that day. The Home said Mr Z was observed regularly and did not require any palliative care medication.
30. A nurse contacted Ms B but did not tell her that her father had died at that point. When Ms B arrived at the Home, the nurse says she said told Ms B her father had passed away.
31. Ms B subsequently complained to the Home in May and received a response from the Home’s Manager. Ms B was dissatisfied with the Home’s response as she felt it had not answered all the concerns fully.
32. Following contact with the LGSCO the Council investigated the complaint from
    Ms B based on her dissatisfaction with the Home’s response. The Council completed its independent investigation in November and provided Ms B with a copy of the detailed investigation report.

Findings

Care and support provided to Mr Z by the Home

33. The Council funded Mr Z’s placement in the Home and it was under a statutory duty to review the care and support he received at least annually. As part of these reviews the Council should have ensured the care and support he received was of good standard and in line with the regulations set by the regulator. There is no evidence to suggest this did not happen while Mr Z was resident in the Home.
34. During the reviews completed the Council did not identify any issues which led to a view Mr Z was at risk of neglect. It did note areas of concerns raised by the family around some issues such as Ms Z needing a haircut and having his nails cut regularly. I have reviewed the documents provided by the Home in response to the Ombudsmen’s enquiries as well as the investigation completed by the Council. There is evidence in the social care records to show the Home acted on the concerns raised by the family.
35. The Home said Mr Z was prone to interfering with his colostomy bag and it is accepted the Home could not always monitor this issue if Mr Z was left alone. Having reviewed the records provided by the Home I do not have enough documentary evidence to find, on balance, the Home failed to meet Mr Z’s colostomy needs.
36. There was one area picked up in the Council’s investigation which found there was an occasion when Mr Z’s clothes and sheets were unclean. It was also noted he had stored food in his mouth on this date. There is no evidence to suggest the issues noted were a regular occurrence, but it is clear Ms B expected a better standard of care for her father. The Home apologised for this incident following the Council’s investigation. It is unlikely the Ombudsmen could achieve more by further investigating this point.
37. The evidence available shows the Home responded to Ms B’s verbal complaints about her father’s treatment and I do not consider it is at fault in this regard.

Communication between the Trust and the Home about Mr Z’s discharge from hospital and the actions of the Home

38. Ms B said she and her family were led to believe her father only had days to live because of what the Trust told her. During his admission the Trust’s records show discussions it had with the family about palliative care, symptom relief, comfort feeds and end of life care.
39. In summary, the Trust and Ms B and the family agreed Mr Z was very unwell and was for palliative care if there was no improvement. Ms B asked the Trust to tell the Home not to force feed Mr Z. Before Mr Z’s discharge from hospital the Discharge Facilitator from the Trust contacted the Home to say the doctors felt Mr Z was medically stable for discharge and he was for community palliative care and comfort feeding.
40. On the evidence available, I cannot find information to show the Trust told Ms B or another family member Mr Z had days to live. The evidence available shows the Trust discussed palliative care with the family. The National Institute for Care in Excellence defines palliative care as “the active holistic care of patients with advanced illness”. Palliative care aims to achieve the best quality of life for patients/residents and their families. It is apparent from the Home’s notes Ms B disagreed with its approach when providing palliative care.
41. Once Mr Z was discharged from hospital there were changes which occurred in the plan of his care which were instigated by the community doctor. For example, the community doctor decided Mr Z did not need a syringe driver. The community doctor also made changes to the medication the hospital decided Mr Z needed on discharge. When this happened, the Home contacted the Trust’s hospital with an update. The Trust then contacted the Douglas Macmillan Hospice Nurse to update on the community doctor’s decision as well as the pharmacy. This shows good communication. These changes may have added to Ms B’s disagreement with how the Home cared for Mr Z but this is not fault.
42. The Trust and the Home, which included nursing staff, and the community doctor did not feel artificial nutrition and hydration was a suitable option for Mr Z. This was because of his poor prognosis/life expectancy and dementia. Therefore, both agreed comfort feeding as an appropriate way forward. There is no evidence which suggests the Home should not have continued feeding Mr Z whenever possible in the manner agreed. It is not known how well this approach was explained to Ms B and other family members by either the Trust or the Home. This may have added to their perception there was a lack of communication or agreement about whether Mr Z should be fed. However, I cannot say this is fault.
43. Ms B said the Home did not provide appropriate pain relief medication or respond when he was in pain. It is unclear how Ms B knew when her father was in pain as he was not able to communicate if he was. The records show the Home monitored Mr Z’s pain and had appropriate pain relief medication in place if needed. This medication was agreed by the hospital and the community doctor. When a nurse from Douglas Macmillan Hospice visited Mr Z, he was not experiencing pain and the nurse agreed with the Home’s pain management plan. Therefore, on balance I find the Home acted appropriately when dealing with Mr Z’s pain management.

How the Home informed Ms B about her father’s death

44. Ms B says the Home did not tell her when her father had died although a staff member from the Home spoke to her on the telephone after he had died.
45. The evidence available shows Mr Z’s time of death was 6.50pm. A member of staff from the Home spoke to Ms B after they were aware Mr Z had died. when responding to the Ombudsmen’s enquiries the home said, “the family had been contacted and informed that he had deteriorated.” The Home said its policy is not to tell families of death over the telephone.
46. Ms B said she arrived at the Home about 20 minutes after speaking to the Home’s staff on the telephone and was told her father had died. Ms B said the Home did not explain her father had already died when she had spoken to them on the telephone and that they did not provide a reason for not telling her. As a result, she said she experienced prolonged distress believing she had missed her father’s death while on the way to the Home. Ms B said only found out this was not the case after the Council completed its investigation.
47. The information from the Home suggests it applies a blanket policy not to tell families over the telephone when residents die. The Home did not explain its reasons for doing so when responding to the Ombudsmen’s enquiries. It may be the Home’s reason for doing so is based on a sense of good intention however, this is wrong. As a result, I find the Home acted with fault.
48. The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014: Regulation 20 refers to the Duty of candour. The intention of this regulation is to ensure that providers are open and transparent with people who use services and other ‘relevant persons’ (people acting lawfully of heir behalf). The regulation says, “providers should have policies and procedures in place to support a culture of openness and transparency, and ensure all staff follow them.”
49. The Home should have ensured its staff was open with Ms B after it had known her father had died. To inform its policy or the way it tells families when a relative has died the Home could have discussed this with Ms B and other family members when Mr Z became resident and kept this under review to note any changes. The Home applied a blanket policy and this is likely, on balance, to have caused Ms B avoidable distress. As the Council partly funded the placement it is also responsible for the actions of the Home.

Conclusion

50. The Council completed a thorough investigation before the Ombudsmen investigated Ms B’s complaints. The Council’s investigation provided explanations to the complaints and achieved a suitable apology from the Home. There is nothing further the Ombudsmen can add to these explanations. I have not found significant fault in the way the authorities provided care and treatment to Mr Z and how they communicated about the plan for his care when he was discharged from hospital. However, I have found the Home is at fault in the way it dealt with informing Ms B about her father’s death. The Council funded the placement so remains responsible for actions taken on its behalf.

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Agreed Recommendations

51. Within four weeks of the final decision the Ombudsmen recommend the:
• Council arrange for an apology to be provided by the Home to Ms B for the avoidable distress it caused to her when it was not open and transparent with her about the timing of her father’s death;
• Council arrange for a payment of £150 to Ms B in recognition of the avoidable distress she experienced; and
• Council works with the Home to develop a procedure for planning end of life care with residents and their families. The procedures should aim to produce a plan which reflects individual needs, wishes, outcomes and clinical advice.

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Final decision

52. The Council and the Home have acknowledged fault causing injustice and agreed to the Ombudsmen’s recommendations I have completed the investigation.

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Investigator's decision on behalf of the Ombudsman