Summary: We found fault by the Council and Trust with regards to the care and treatment they provided to Mr Y when he was resident in a local care home. The Council and Trust will apologise to Mr Y’s daughter, Miss X, and pay her a financial sum in recognition of the distress caused to her by this fault. They will also take appropriate action to prevent similar problems occurring in future.

The complaint

1. The complainant, who I will call Miss X, is complaining about the care provided to her father, Mr Y, in December 2020 by Chippendayle Lodge Care Home acting on behalf of Kent County Council (the Council) and Kent Community Healthcare NHS Trust (the Trust).
2. Miss X complains that:

• the care home and Trust did not communicate effectively with the family or make them aware that Mr Y was receiving end-of-life care;
• the care home failed to provide Mr Y with appropriate nutritional and fluid care. Miss X says this meant Mr Y became severely dehydrated and had to be admitted to hospital;
• the care home kept Mr Y isolated in his room without stimulation. Miss X says this led to him becoming anxious and upset;
• the care home and Trust failed to properly investigate the source of Mr Y’s pain and breathlessness;
• the Trust treated Mr Y with sedative medication when his symptoms did not warrant this; and
• the care home would not allow Mr Y’s family to visit when he was near death.

3. Miss X says these failings caused the family great distress and frustration. She says this was made worse as the family was not given any bereavement support.

Back to top

The Ombudsmen’s role and powers

4. The Ombudsmen investigate complaints about ‘maladministration’ and ‘service failure’. We use the word ‘fault’ to refer to these. If there has been fault, the Ombudsmen consider whether it has caused injustice or hardship (Health Service Commissioners Act 1993, section 3(1) and Local Government Act 1974, sections 26(1) and 26A(1), as amended).
5. 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.
6. 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)

Back to top

How I considered this complaint

7. In making my final decision, I considered information provided by Miss X and discussed the complaint with her. I also considered relevant information and documentation from the Trust and Council, including the clinical and care home records. I took account of relevant legislation and guidance. I also invited comments from all parties on my draft decision statement and considered the responses I received.

Back to top

What I found

Relevant legislation and guidance

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions

8. Cardiopulmonary resuscitation is a treatment that can be given to a person who has stopped breathing, or whose heart has stopped.
9. A DNACPR decision can be made in advance by a person who does not wish to be resuscitated if their heart or breathing stops. This decision will ordinarily be recorded on a special form and kept in the person’s medical records.
10. A DNACPR is a medical treatment decision that can also be made by a doctor even if the person does not agree. The doctor should record a clear clinical rationale for this decision (for example, CPR may not be suitable for a person approaching the end of their life). The doctor should also discuss this decision with the person and ask about their wishes and preferences. However, the doctor does not require the person’s consent.

Communication

11. The National Institute for Health and Care Excellence (NICE) produces guidance for healthcare professionals entitled Care of dying adults in the last days of life [NG31]. This guidance emphasises the importance of effective communication with a person who is nearing the end of their life, as well as those important to them, where appropriate.
12. This is reflected in the Trust’s End of Life Care Policy, which places a responsibility on Trust staff to ensure that “[t]he needs of the families and others identified as important to the dying person are actively explored, respected and met as far as possible.”

Fluid and nutrition

13. The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 (the Care Regulations) set out the fundamental standards that registered care providers must achieve.
14. The Care Quality Commission (CQC) is the statutory regulator of care services. It produces guidance for care providers on how to meet the fundamental standards.
15. Regulation 14 relates to nutrition and hydration. The CQC guidance that accompanies this regulation says that care providers must make sure that people have enough to eat and drink to meet their nutrition and hydration needs and receive the support they need to do so.

Care home visits

16. There were no nationally set restrictions on visiting in care homes during the COVID-19 pandemic.
17. However, in July 2020, the Department of Health and Social Care produced guidance for care homes entitled Guidance on care home visiting. This placed the responsibility on care providers to develop their own COVID-19 visiting policies.
18. This guidance emphasised the importance of facilitating visits from residents’ family and friends while taking measures to protect staff and residents. These measures included use of appropriate personal protective equipment (PPE), meeting in well ventilated spaces and negative lateral flow tests for visitors.
19. The guidance allowed care homes to limit the number of visitors at any one time to ensure safe visiting practices could be maintained.
20. The care home introduced a new visiting policy during this period. This said that only one visitor would be allowed at any one time. However, the policy also set out that visits to residents considered to be at the end of their life would each be assessed on their own merits.

Background

21. Mr Y had complex health needs, including dementia. In early 2019, he was living in supported accommodation.
22. Mr Y’s family and staff at the supported housing placement began to raise concerns about his him. Mr Y was noted to be wandering regularly and was showing signs of self-neglect.
23. At a best interests meeting in April 2019, it was agreed that it would be in Mr Y’s best interests to enter a residential care placement so he could receive 24-hour support.
24. In August, Chippendayle Lodge Care Home (the care home) assessed Mr Y and agreed to offer him a place. Mr Y moved to the care home on 26 August 2019. The placement was funded by the Council.
25. On 18 December 2020, Mr Y tested positive for COVID-19.
26. The care home referred Mr Y to the Trust’s Complex Care Nursing Service (CCNS) on 21 December as his condition appeared to be deteriorating.
27. A nurse from the CCNS visited Mr Y at the care home the following day. She noted that he was able to mobilise independently and that his observations were within normal ranges.
28. The nurse also noted that she had spoken to Mr Y’s daughter to discuss his Treatment Escalation Plan (TEP). The TEP is intended to be a record of the wishes of a patient and their family in the event of a deterioration in the patient’s health. The nurse recorded that Mr Y would not be admitted to hospital unless as a result of a bone fracture or serious head injury.
29. Miss X disputes this conversation and says the nurse did not discuss the TEP with her sister. She says the TEP was introduced without discussion or the agreement of the family.
30. A nurse from the CCNS visited Mr Y again the following day. She took Mr Y’s observations again. These showed a deterioration from the previous day. Mr Y scored a 4 on the National Early Warning Score (NEWS) system. This is a tool developed by the Royal College of Physicians intended to detect clinical deterioration and allow for a prompt response. This score meant Mr Y required increased observations. The nurse noted that Mr Y would require end of life medications and that a CCNS manager would contact Mr Y’s GP to arrange this.
31. On 23 December, Mr Y was admitted to hospital with increased confusion, diarrhoea and vomiting. The clinical team treated home with fluids and antibiotics and discharged him back to the care home on 25 December.
32. A CCNS nurse visited Mr Y at the care home on 26 December at the request of care home staff. The nurse noted that Mr Y appeared to be whimpering and in distress and would not let her take his observations. The nurse administered Midazolam. This is a medication that can be used as a sedative to treat anxiety and agitation. It can also be used to treat convulsions and muscle spasms.
33. CCNS nurses visited Mr Y again that afternoon. They noted that he appeared to be in pain and treated him with Morphine Sulphate (a painkilling medication).
34. On the morning of 27 December, a CCNS nurse noted that Mr Y was whimpering and did not respond when spoken to. She administered Morphine Sulphate and Midazolam. The same CCNS nurse reviewed Mr Y that afternoon and administered further doses of those medications.
35. CCNS nurses continued to visit Mr Y regularly. On 29 December, CCNS nurses set up a syringe driver for Mr Y.
36. Mr Y died on 30 December.

Analysis

Communication

37. Miss X complains that the care home and Trust did not communicate effectively with the family or make them aware how unwell Mr Y was. Miss X says the family did not know that Mr Y was receiving end of life care.
38. In its response to the complaint, the Trust acknowledged there had been a lack of communication with Mr Y’s family during this period. The Trust explained that the CCNS was experiencing a high demand for care home visits due to the pandemic. The Trust said this had an impact on the time available to the nurses for communication with Mr Y’s family. Similarly, the care home said this had been a very difficult time and that staff were under significant pressure.
39. In early December 2020, the care home records show that Mr Y was well settled at the care home. He was noted to be sleeping well and had a good appetite.
40. On 18 December 2020, Mr Y tested positive for COVID-19. At 10.29am that morning, a member of care home staff recorded that she had informed Mr Y’s daughter of this.
41. The records for 19 and 20 December show staff checked on Mr Y regularly. At that stage, Mr Y was not exhibiting any COVID-19 symptoms and appeared well.
42. However, on the morning of 21 December, Mr Y was noted to have a cough. As the morning progressed, staff noted Mr Y appeared unhappy and agitated. The care home subsequently referred Mr Y to the CCNS.
43. The CCNS nurse who visited Mr Y on 22 December recorded at 10.00am “[h]as DNACPR in place. Telephone conversation with [Mr Y’s daughter] whom hold[s] POA. [A]nd discussed TEP. Not for hospital admission unless fracture of bone or serious head injury.”
44. Miss X and Mr Y’s other daughter dispute this record. They say they did not become aware of the DNACPR decision until 24 December, when Mr Y was admitted to hospital. Furthermore, they say the TEP was first discussed with them during the Council’s safeguarding meeting on 15 October 2021.
45. The contemporaneous records suggest there was some discussion with Mr Y’s daughter at this stage. However, the note of this conversation is brief and is not possible to say in what detail these matters were discussed or whether the nurse made Mr Y’s prognosis clear.
46. On 23 December, a CCNS nurse reviewed Mr Y. She took Mr Y’s observations and noted that these had deteriorated. Mr Y had a raised temperature and decreased oxygen saturation levels. The nurse noted “escalated to [a senior officer] who will liaise with GP to organise [End Of Life] pink charts and EOL anticipatory medications. DNAR already in place.”
47. A doctor prescribes anticipatory medications to ensure a person has access to medicines they will need if they develop distressing symptoms. These medications typically include painkillers, anti-anxiety drugs and anti-sickness drugs. This note shows that the CCNS nurses felt Mr Y was nearing the end of his life. Despite this, I found no evidence in either the care home records or those of the Trust to suggest this was made clear to Mr Y’s family.
48. Mr Y was admitted to hospital on 23 December, returning to the care home during the afternoon of 25 December.
49. Nurses from the CCNS visited Mr Y several times between 26 and 28 December. During this period, it was only possible to take limited observations. Mr Y was noted to be in pain and was whimpering. The care home records suggest Mr Y had an increasingly limited appetite and was eating and drinking very little by this point. This was indicative of a steady deterioration in Mr Y’s condition. Again though, I found no evidence of further discussion with Mr Y’s family about his prognosis.
50. On 29 December, the CCNS nurses set up a syringe driver for Mr Y. The nurse recorded “[Mr Y’s] daughter informed.” However, no further detail was recorded.
51. Subsequent records show the family was confused about the purpose of the syringe driver. This was demonstrated by an entry in the CCNS the following day, in which a nurse recorded “[d]aughter had visited yesterday afternoon and [was] querying as to why [Mr Y] has morphine in the driver.”
52. It is important to recognise the significant challenges faced by health and care services during the COVID-19 pandemic. The pandemic meant care homes and NHS services were often operating with reduced staffing levels. For this reason, the CCNS was required to support local care homes to care for residents. This in turn placed greater pressure on those working to provide care and support.
53. Nevertheless, effective communication is an important part of end of life care. I found no evidence in the records of either the care home or Trust of any proper discussion with Mr Y’s family regarding his prognosis and the management of his end of life care during this period, despite the deterioration in his condition. This was a significant omission and represents fault by the Trust and Council (on whose behalf the care home was acting).
54. The meant Mr Y’s family were not given a full understanding of the end of life care process and what to expect from it. They were also denied the opportunity to properly prepare themselves for Mr Y’s death. This caused Miss X significant distress and confusion.

Nutritional and fluid care

55. Miss X complained that the care home failed to provide Mr Y with appropriate nutritional and fluid care. Miss X says this meant Mr Y became severely dehydrated and had to be admitted to hospital.
56. The care home completed a nutrition and hydration care plan for Mr Y when he was admitted in August 2019. This was reviewed on a monthly basis, with the final review on 1 December 2020.
57. The care plan set out that Mr Y was able to eat and drink independently and did not require a special diet. However, he did require some prompting to eat. The care plan recorded that Mr Y should be given a choice of meal and offered alternatives if he declined. The care plan said staff should offer Mr Y drinks throughout the day and night. The care plan also noted Mr Y should be weighed monthly and a referral made to the local dietician service if there were any concerns about his weight.
58. As Mr Y was not considered to be at risk of malnutrition, the care home did not keep detailed nutritional records (such as a nutritional chart). This means it is not possible to establish Mr Y’s exact nutritional and fluid intake in the days leading up to his admission to hospital. However, the daily care records suggest Mr Y’s appetite was good initially and that he was eating and drinking normally.
59. Over the next two to three weeks, Mr Y’s appetite became more variable and he was eating and drinking smaller quantities.
60. By 20 December, the care records suggest Mr Y’s appetite had deteriorated significantly. There care records show he did not eat or drink anything on 20 or 22 December. Following his discharge from hospital on 25 December, Mr Y ate and drank very little in the days leading up to his death on 30 December.
61. Regulation 14 of the Care Regulations set out that “[n]utrition and hydration needs should be regularly reviewed during the course of care and treatment any changes in people’s needs should be responded to in good time.”
62. I found no evidence to suggest the care home reviewed Mr Y’s nutritional and fluid care plan when his appetite began to deteriorate. This represented a missed opportunity to explore whether Mr Y needed additional nutritional support or input from a specialist such as a dietician or Speech and Language Therapist. This was fault by the Council.
63. Loss of appetite is a common in people approaching the end of their life. The case records strongly suggest Mr Y was nearing the end of his life by mid to late December. By this point, Mr Y had contracted COVID-19. This, along with his general frailty, led the professionals to conclude his prognosis was poor.
64. Given Mr Y’s frailty, I am unable to say whether the outcome of his care would have been different even if he had received additional nutritional support. Indeed, Mr Y’s cause of death was recorded as COVID-19. Nevertheless, this situation caused Miss X further distress and uncertainty.

Lack of stimulation

65. Miss X said the care home kept Mr Y isolated in his room without stimulation. Miss X says this led to him becoming anxious and upset.
66. The care records for the first two weeks of December 2020 show Mr Y often spent time watching television in the lounge or talking with other residents in the communal areas of the care home. Mr Y was also noted to like chatting with staff occasionally.
67. However, Mr Y tested positive for COVID-19 on 18 December. Although he was initially asymptomatic, this meant he was required to self-isolate in his room. This meant he was no longer able to socialise with other residents. While this was understandably frustrating for Mr Y’s family, it was in keeping with national guidance as it stood at that time, which required a self-isolation period of ten days.
68. The care records show staff checked on Mr Y regularly throughout the day and night and assisted him with personal care. Mr Y also continued to talk to staff occasionally.
69. Following his return from hospital on 25 December, Mr Y was very frail and nearing the end of his life. The care records suggest his interaction with staff was more limited by this point.
70. I am unable to comment in detail on the quality of the interactions between Mr Y and staff during his period of self-isolation. This is because the care records are not sufficiently detailed to allow me to do so. However, the records suggest staff did attempt to speak to Mr Y, albeit I accept his isolation meant he had fewer opportunities to engage with others. I recognise this would have been very difficult for Mr Y’s family. However, I found no fault by the Council on this point.

Lack of investigation

71. Miss X said the care home and Trust failed to properly investigate the source of Mr Y’s pain and breathlessness.
72. In response to Miss X’s complaint, the Trust completed a mortality review. This was a detailed consideration of the care provided by the CCNS to Mr Y in the last days of his life. The review found that, by 26 December, Mr Y had been diagnosed with COVID-19 and escalated for palliative care. He was also showing more regular signs of pain and distress. The review noted that CCNS nurses administered appropriate medication to treat Mr Y’s symptoms. However, it found nurses failed to support care home staff to properly track Mr Y’s symptoms and monitor the effectiveness of his medication.
73. I have commented on the use of medication below. It is clear from the clinical records that the primary focus for the complex nurses was treating Mr Y’s symptoms to ensure he remained comfortable. Nevertheless, I share the Trust’s view that the failure to properly track Mr Y’s pain and the effectiveness of his medication was a significant omission. This represents fault by the Trust.
74. This meant an opportunity was missed to identify at an earlier stage that Mr Y was nearing the end of his life. This contributed to the poor communication with Mr Y’s family and caused Miss X distress.

Use of sedatives

75. Miss X said Trust staff treated Mr Y with sedative medication when his symptoms did not warrant this.
76. The NICE guidelines recommend the use of anticipatory medications for people who are likely to require symptom control in the last days of their life. This can include medicines to treat pain, agitation, breathlessness and nausea.
77. By 23 December, the CCNS had identified that Mr Y would require anticipatory medications as he was nearing the end of his life. While these were being arranged through Mr Y’s GP, the CCNS nurses administered Midazolam and Morphine Sulphate to Mr Y during care visits.
78. There is evidence in the records of the CCNS to suggest Mr Y was experiencing symptoms including pain, agitation and breathlessness. On 26 December, CCNS nurses noted there was “evidence of distress and whimpering” and that Mr Y “appeared to be in pain”. The CCNS nurses made similar notes on 27, 28 and 29 December.
79. The available evidence shows the CCNS nurses were acting in accordance with NICE guidelines in administering medication to treat Mr Y’s symptoms and reduce his distress. I found no fault by the Trust on this point.
80. I note Miss X’s view that Mr Y’s distress was a result of anxiety and agitation caused by his isolation. I am unable to rule this out as a possibility based on the evidence available to me. Nevertheless, it remains my view, on balance of probabilities, that Mr Y’s distress was linked to the symptoms of his illness.

Visiting restrictions

81. Miss X explained that her sister and brother-in-law were visiting Mr Y when he died. Miss X says she arrived as soon as possible with her husband and brother. Miss X says the care home told the family they would be able to spend some time with Mr Y in groups of two. However, she says they were subsequently told they would need to leave immediately as family could spend no more than ten minutes with a loved one who had died.
82. In its response to the complaint, the care home apologised that all five family members had been unable to visit at once. However, it explained this was in keeping relevant guidance and that it had a duty to consider the risk to other residents and their families, who were also visiting. The care home went on to say it had emailed residents’ families on 8 December to provide information about the arrangements for end of life visits.
83. I have reviewed the care home’s visiting policy that was in place at that time. This set out that ordinarily only one visitor at a time would be allowed for a 15-minute visit. It required each visitor to wash their hands and wear appropriate PPE. For patients at the end of life, the policy gave the care home discretion to “assess each case on its own merit”.
84. On 8 December wrote to families and friends of residents with this information. This included reference to 15-minute visits. However, it did not specifically explain that this timeframe would also apply to end of life visits.
85. I accept the care home had a duty to manage the risk posed by the COVID-19 virus to staff, visitors and residents. The care home’s visiting policy gave it discretion on how to do so. The evidence shows care home staff used this discretion to allow Mr Y’s family to visit him in pairs (rather than individually). This was appropriate in my view.
86. It is unclear why Miss X and the rest of Mr Y’s family were asked to leave the care home so soon after his death. However, my understanding is that this was linked to the need to minimise the length of visits to reduce the risk of virus transmission. Again, this was in keeping with the care home’s visiting policy and national guidance.
87. In summary, I found no fault with the care home’s decision to impose restrictions on visits during the pandemic.
88. Nevertheless, I consider the care home could have explained these arrangements more clearly to Mr Y’s family in advance of their visit. I found no evidence to suggest staff explained to Mr Y family that they would only be allowed limited time when they visited him. While the care home did write to families in early December, this was an open letter and did not clearly explain the limitations that would apply for end of life visits. This was further evidence of poor communication. This was fault by the Council.
89. This caused Miss X further distress at an already difficult time.

Back to top

Agreed actions

90. Within one month of my final decision statement:

Council and Trust

• the Council and Trust will each write to Miss X to apologise for the fault I have identified; and
• each pay Miss X £400 in recognition of the distress caused to her by this fault.

91. Within three months of my final decision statement:

Council

• explain to the Ombudsmen what action it will take to ensure the care home has an effective communication policy and procedure in place. This should provide clear guidance for staff on the importance of effective communication with residents and their families, particularly when a resident is near the end of their life; and
• explain what action it will take to ensure the care home has robust nutritional and hydration procedures in place. These should emphasise the importance of regular nutritional reviews and the need to seek appropriate specialist input in the event that a resident’s nutritional needs change.

Trust

• explain what action it will take to ensure the CCNS has clear guidance in place for staff on managing pain in patients effectively. This should include guidance on the need to effectively track and monitor a patient’s pain.

92. The Council and Trust will provide us with evidence that they have complied with the above actions.

Back to top

Final decision

93. I found fault by the Council and Trust with regards to the care provided to Mr Y when he was resident in Chippendayle Lodge Care Home.
94. I am satisfied the actions the Council and Trust have agreed to take represent a proportionate remedy for the injustice caused to Miss X by this fault.
95. I have now completed my investigation on this basis.

Back to top

Investigator's decision on behalf of the Ombudsman