18. For clarity, we explain our findings under separate headings
Admission 29 December to 5 January
19. Miss C is understandably upset that she was not allowed to visit Mr D as often as they would want, and was therefore unable to provide support at a time when he was particularly distressed having found out his cancer had spread. She also says there was a lack of support from staff for Mr D. We understand why this was such an emotionally difficult time for Mr D and Miss C given the devastating news they had received.
20. On 29 December, Mr D attended hospital to have a CT scan of his head to investigate the possibility of his recently diagnosed cancer having spread to his brain. While he was there, he had a sudden onset of shortness of breath and was transferred to the Emergency Department. He was found to have low sodium levels in his blood, which may have contributed to confusion he was also experiencing. He was therefore admitted to the High Dependency Unit.
21. Records show that a doctor spoke to Mr D and Miss C on the morning of 30 December about the CT scan results and explained that the cancer had spread to his brain. It was likely this could not be cured. The doctor recognised they were both distressed but they understood the situation.
22. Mr D was reviewed over the following days by urologists (whose specialism includes kidney conditions) and an oncologist (cancer specialist) saw him and Miss C on the afternoon of 2 January. The oncologist noted the metastatic cancer had recently been diagnosed and was still under investigation for a definitive diagnosis before they could make a treatment plan. The oncology team would take over his care and the doctor explained what palliative treatment was. Mr D understood and agreed to a ‘Do Not Attempt Resuscitation’ order being put in place (i.e. there would be no attempt to resuscitate if he were to go into cardiac arrest). The doctor recorded Miss C was with Mr D at this time and they were aware that a kidney biopsy was needed for a definitive diagnosis. (A biopsy is a procedure that involves taking a small sample of body tissue so it can be examined under a microscope to help diagnose a specific condition.) Mr D was short of breath but maintaining oxygen blood levels with the help of oxygen therapy.
23. Mr D was transferred from the High Dependency Unit to the oncology ward, and an oncology consultant and cancer nurse specialist (CNS) saw him the following morning, 3 January. This was a Sunday and the plan was for Mr D to stay in hospital and await the results of the biopsy and to see a different oncology consultant after the weekend to discuss his treatment plan.
24. Mr D was unhappy with the care he was receiving and in the early hours of 5 January, he discharged himself to return home.
25. With regard to Miss C’s opportunities to spend time with Mr D, in its response of 28 July 2021, the Trust said that visiting was restricted at the time due to COVID-19. We consider this is a reasonable explanation. Such restrictions were standard at the time and unfortunately, families were often not allowed to spend extended time with the patient until they were in last hours. The temporary NHS guidance in place at that time (‘Visiting healthcare inpatient settings during the COVID-19 pandemic’) refers to additional arrangements to support visiting at the end of life, by which it meant patients who were ‘ill enough that they could die within the next few days’. Although he had just found out he had a terminal illness, there was no indication during this admission that Mr D was entering the final days of his life.
26. We did not see in the records from this admission of any specific consideration of Mr D’s emotional wellbeing needs. As such it is difficult for us to say to what extent his needs were met in this regard. Nursing notes refer to providing reassurance to Mr D when he was confused.
27. The NMC Code says that nurses should ‘treat people with kindness, respect and compassion’. We recognise it can be difficult for this to be reflected in records and we would not expect nurses to specify when they have done that. We appreciate Miss C does not feel staff did this.
28. Evidence in the records shows Mr D was confused and at times refused treatment, for example by pulling out a cannula. He was given one-to-one nursing supervision in the early hours of 31 December and into the next day because of this. His confusion appears to have continued for the next days although not as acute and he did not need constant supervision.
29. Although they knew Mr D had metastatic cancer and ultimately no cure was possible, doctors were still investigating in order to establish a definitive diagnosis that would allow them to identify appropriate treatment. With ongoing investigations and signs of confusion, it is understandable that issues around planning of end-of-life care were not brought up at this stage. We recognise that subsequent community nursing notes (which we address below) suggest Mr D found it difficult to discuss this, even at a later date.
30. It is understandable why relatives would want and expect to be with hospital patients after receiving devastating news. We do not doubt the importance of family support and Miss C would have wanted to be with her partner more. Evidence shows Miss C was present when doctors discussed the most important findings with Mr D. Unfortunately, COVID-19 was a relevant factor and the Trust were obliged to follow national guidance in restricting visits. We do not consider there was a failure by the Trust in this regard. There is evidence in the record that the situation with COVID-19 was explained to Miss C on the evening of 31 December.
31. We recognise her dissatisfaction with the personal support Mr D received. We do not consider we could conclude there was a failure here. From what we saw in the records, it was not the most opportune time to discuss end-of-life care.
Support at home from the CPCT
32. Miss C says that the CPCT did not act in a timely way to provide her and her partner with support at him. Mr D left hospital in the early hours of 5 January but the referral to the CPCT was not dealt with until a week later.
33. Mr D decided to self-discharge in the early hours of the morning. That was his prerogative, and we understand he was unhappy being in hospital. On leaving and returning home, he was now in the community and that would mean he was under the care of his GP, not the hospital team. In that case it was up to the GP to arrange his ongoing care. The referral to the CPCT was therefore done via the GP practice, rather than by staff on the ward. We would expect that if he had stayed in hospital, ward staff would have referred Mr D to the CPCT as part of a planned discharge. There is no specific guidance on timelines regarding referrals to palliative care services, although our adviser says that a quick referral can be beneficial. The CPCT received the referral on Friday 8 January and registered it the following Monday, 11 January.
34. In its response, the Trust said it was not sent as an ‘urgent referral’ and we can confirm that there is nothing in the GP record to suggest that they thought it was urgent. It would be understandable that Miss C would question what this meant, given the very difficult and distressing situation she and Mr D found themselves in. The Trust’s produces an information document which explains Specialist Palliative Care Services for Primary Care Teams (such as GP practices). This does not specify what is urgent and says that referrals will be triaged to prioritise assessment for ‘those most in need’.
35. It was known he had a terminal illness and that he had ongoing care needs (and this would be true for anyone referred to the CPCT). At the time, Mr D showed no signs that he was last hours or days of his life. We consider the Trust’s statement that it was not urgent is reasonable. The This is not to underestimate the importance of putting in place a plan for palliative care in a timely manner.
36. During the period between the two hospital admissions, Mr D was also seen by clinicians from Amber Valley Integrated Community Team (ICT). This service is provided by a different Trust, which is not subject to our investigation. We will refer to their involvement (as ‘community’ clinicians) to give a background of what happened in recognition that his care was being provided not just by the CPCT.
37. Our adviser explained that the role of community nurses is to manage general health. Palliative care nurses deal with palliative patients focusing on specific issues around end of life. They work closely with each other.
38. The care coordinator from the ICT contacted Mr D and Miss C by phone on 8 January, having been asked to do so by Mr D’s GP. She made a referral to the community matron service (part of the ICT) and the CPCT.
39. On 13 January, a community matron visited to do an assessment. She noted Mr D was still in shock after his recent diagnosis. His main concern was shortness of breath. He had inhalers but felt these did not help much and that he had felt better with a nebuliser in hospital. After the visit, the GP prescribed a nebuliser. The matron noted that Mr D was experiencing some back ache but said the analgesia he had been prescribed was effective. Mr D found his recent hospital admission to be distressing and he was reluctant for another admission.
40. The same afternoon, a nurse from CPCT contacted Miss C by phone. The referral to CPCT had noted Mr D was aware of his diagnosis and prognosis and the referral had been made for symptom control, psychological support and carer support. The nurse noted that the community matron had assessed him for support for his shortness of breath. Miss C told the nurse they had felt unsupported but were now happier that support was coming in. The nurse explained the team’s role and it was agreed Miss C would contact them the following week to arrange a convenient time to visit.
41. On 18 January, a CPCT nurse called again and spoke to Miss C. They spoke about how Mr D’s illness had developed and been investigated. Miss C reported Mr D was now eating better and his confusion had improved, although was still struggling with his breath and was coughing.
42. The nurse noted that an occupation therapist has arranged for a hand rail to be fitted and that was scheduled for the next day. They arranged a visit for the next Thursday morning. He was referred for help with financial support.
43. On 21 January, a CPCT nurse visited Mr D. She noted he was keen to avoid hospital admission if possible, and that his preferred place of death was at home. She gave him a leaflet with information about the ReSPECT form. This stands for ‘Recommended Summary Plan for Emergency Care’. After talking with the patient, a doctor or nurse will complete a ReSPECT form, which will have the plan of care, including the patient’s preferences. The patient keeps a copy and they or a relative can show it to any health professional when needed. Mr D was reluctant to discuss further at this time. He said he found it overwhelming.
44. The nurse felt it was not appropriate to discuss his resuscitation status at that time She noted a ‘gentle approach’ was required and some topics would be revisited during the next visit. She noted Mr D was overwhelmed easily.
45. The nurse did what our adviser describes as a ‘holistic assessment including physical, psychological, spiritual and social elements’, in line with NICE guidance NG142. She noted Mr D’s symptoms including breathlessness, cough, poor sleep, pain in his lower back, and swollen ankles, and how these were being treated. She made a plan, formed with Mr D and Miss C, which included self-help techniques to assist breathing, increasing pain medication, liaising with GP and continuing sleeping medication. The nurse arranged a follow up telephone call for the following Wednesday.
46. A community nurse arrived for a visit just as the CPCT nurse was leaving. The community nurse noted Mr D was tired following a ‘long but welcomed visit’ from the CPCT nurse during which his medication had been discussed at length and both he and Miss C felt ‘well supported’.
47. We recognise that Mr D did not want to discuss some aspects of his illness and diagnosis, which may make it seem that not everything was addressed at this first CPCT visit. Mr D’s reluctance for a full discussion was understandable given the devastating news he had recently been given. Our adviser explains that patients can find this very difficult and nurses should not force patients to speak about anything they do not want to. In this regard, CPCT nurses acted in line with the NMC Code, which says nurses should ‘respect the level to which people receiving care want to be involved in decisions about their own health, wellbeing and care’. Given the situation, the focus was more on managing his physical symptoms.
48. Miss C spoke to the CPCT by phone on 24 January. She was worried Mr D was drowsier, more confused and agitated, and felt an increase in morphine was the cause. The nurse spoke to Mr D’s GP and it was agreed that he would go back on to the previous dose of dexamethasone and reduce the amount of morphine. The nurse got back to Miss C and offered a hospital admission to review his symptoms, but recognised they wanted to avoid that.
49. A community matron visited Mr D on 26 January. He had had an oncology appointment the previous day and was hoping to start chemotherapy and radiotherapy soon. He was aware this treatment would not provide a cure. The matron noted he was being considered for home oxygen.
50. On 27 January, a nurse from the CPCT phoned and spoke to Miss C. Mr D was struggling to breathe and his nebuliser was not effective. He was also struggling to cough and had not slept well. During the call, an ambulance arrived.
51. A little over an hour later, the nurse spoke to the paramedic who was with Mr D. Aware of Mr D’s reluctance to go to hospital, they agreed that he should not go to hospital and they would try to manage his symptoms at home. This included using lorazepam (used to treat anxiety, agitation and insomnia) and increasing morphine-based pain relief. The nurse called Mr D’s GP, who in turn spoke to the paramedic, regarding Mr D’s chest symptoms. However, shortly after, the decision was made to take Mr D to hospital.
52. From what we saw, there was an effort to manage Mr D’s symptoms at home. The CPCT and colleagues in the ICT were aware of his desire to avoid going back to hospital, but in the end, this was necessary to manage his breathlessness. We did not see a lost opportunity for him to have stayed at home.
53. Miss C complains that Mr D was refused home oxygen. She says that if this had been available to him, it would have helped with his symptoms of breathless making him more comfortable and it would help avoid him being readmitted to hospital, or would otherwise enable him to have returned home when he was admitted on 27 January.
54. The British Thoracic Society’s Guidelines For Home Oxygen Use in Adults suggest that smokers who require home oxygen should be reviewed on a case-by-case basis. It says that where the risk is deemed too high, oxygen should not be prescribed. Oxygen is highly flammable and can be ignited easily.
55. The NHS produces a form to assess risks of home oxygen (Initial Home Oxygen Risk Mitigation’ or ‘IHORM’ Form). Factors that would make a person high risk include whether they currently smoke or have done so in the last six months. This would require further assessment.
56. We note that the ICT first contacted the Trust’s Integrated Respiratory Care Team (called ImpACT+) on 20 January about possible home oxygen. When a community nurse visited Mr D on 26 January, he acknowledged he was still smoking 10 cigarettes a day. The nurse sent a referral to ImpACT+ the next day. ImpACT+ responded by saying they could not place oxygen in the home of a smoker and apologised to the nurse for not asking about that beforehand.
57. We consider this decision was reasonable and in line with the risk assessment we outline above. There is no national guidance on how long a person must have stopped smoking but our adviser explains there is usually a time period of not smoking before home oxygen is given. In this case, Mr D acknowledged he was still smoking, and as such, the risk too high.
Final admission
58. Mr D was readmitted to hospital on 27 January to help manage his symptoms of increased breathlessness. Miss C is understandably upset that she and the rest of the family were notified only shortly before he died.
59. On arrival, he was diagnosed with shortness of breath due to cancer and a possible chest infection. For the latter, he was given antibiotics. The records from the first few days show that staff were hoping to discharge Mr D home as soon as they could. There was no indication he was approaching the end of his life in the next few days. Mr D was seen by nurses from the Hospital Palliative Care Team on 28 and 30 January. On the first occasion, he said he was feeling better since admission. He was keen to go home as soon as possible but happy to continue treatment. He said he felt better ‘not thinking about it’.
60. On 29 January, a doctor discussed the plan with Mr D and Miss C for him to stay in over the weekend. The next day, he was reviewed twice by doctors and seen by the Hospital Palliative Care Team nurse while Miss C was there. The nurse had been asked to review him because it was thought he was deteriorating and he was anxious. The nurse suggested doctors change his medication, including the provision of a syringe driver, and they would look to do a fast-track discharge.
61. In the early hours of 31 January, a doctor was asked to review Mr D as he was deteriorating and had become more short of breath. The doctor recognised he was now approaching the end and asked for end-of-life care to be started. At 4am, a doctor recorded that Mr D’s family had been called in. The situation was discussed with them. The doctor recorded they understood he had declined rapidly and was now in the final stages of life. The focus was now on comfort and a syringe driver was in situ. Mr D died later that morning.
62. The evidence in the records shows that Mr D was admitted with the intention of managing his breathlessness and low blood oxygen levels, and that he would return home when he was well enough. At first, he appeared to improve.
63. Mr D’s NEWS score was recorded regularly during this last admission. NEWS stands for National Early Warning Score. It is a tool to help detect and respond to clinical deterioration in patients by measuring signs such as temperature, heart rate, respiratory rate, blood pressure and blood oxygen levels. These records show that his respiratory rate and oxygen levels were brought under control by the day after admission.
64. The NEWS records also include pain score which is scored at either 0 or 1 (no or little pain) during this time. This suggests Mr D was not experiencing higher than expected pain levels. This is not to suggest pain was not a factor, but it was being managed with medication. The timing and scoring were in keeping with NICE CKS Guidelines, ‘Scenario: Assessment of pain’. This suggest Mr D was asked frequently about pain as part of regular observations. An early waring and can be seen on the EWS charts.
65. Our adviser explains that if a patient cannot communicate effectively, nurses should look for nonverbal signs of pain. Mr D showed signs of confusion during this admission, but it looks like he was generally able to communicate. The medical notes do not suggest he had uncontrolled pain, although the continuing need for strong analgesia was recognised.
66. From what we saw, during this admission, staff treated Mr D’s symptoms with the intention of him returning home, where he wanted to be. Sadly, he deteriorated before that could happen and staff contacted Miss C at the earliest opportunity.