End-of-life care 13. Mrs A says her father should have been on end-of-life care. She says her father passed away with no dignity, in pain and gasping for breath.
14. The Trust said it decided Mr O’s needs could be met at home with the support of Home First Carers and care calls four times a day.
15. The Trust said a specialist nurse had referred Mr O to the community palliative care team which he agreed to. The doctor also offered Mr O symptom management medication, and he agreed to trial Lorazepam.
16. The NHS explains end of life care as:
‘End of life care is support for people who are in the last months or years of their life.
End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences and take these into account as they work with you to plan your care.
They should also support your family, carers or other people who are important to you.’
17. The records show the Trust provided paracetamol to Mr O, this was the only pain medication he was receiving whilst admitted. This, along with the entries in the records, does not imply Mr O was experiencing a lot of pain whilst in hospital.
18. The Gold Standards Framework (GSF) is a widely used guideline to ensure patients nearing the end of their lives are identified and managed appropriately (which includes information and support for their families).
19. The first question in this tool is ‘would you be surprised if the patient were to die in the next year, months, weeks or days?’ The next assessment within the GSF is whether there are any general indicators of decline.
20. Mr O fulfilled many of these criteria including greater than 10% weight loss (20kg) in six months, decreasing response to treatments/decreasing reversibility and had advanced disease (unstable, deteriorating). Mr O’s serum albumin (a type of protein found in the blood) was also under 25, the normal range is 34 to 54.
21. Mr O also had lung fibrosis (scarring) which was severely affecting how his lungs worked, and he would get breathless on minimal exertion. The records show he had not tolerated anti-fibrosis medication, and he had developed a leak of air into the middle of his chest (pneumomediastinum). This meant he could not have any further lung function tests, as blowing into the breathing machine could make that worse.
22. Our adviser says considering all of this information, medical staff should have recognised that Mr O was heading towards the end of his life, his life expectancy was very limited, and he would likely die within a year.
23. Our adviser says medical staff did not properly recognise that Mr O was heading towards the end of his life and there was a failure to appreciate that Mr O’s prognosis was very poor. They told us Mr O should have been referred to the palliative care team for review during his hospital admission based on the GSF guidelines.
24. There is no evidence in the records that a do not attempt resuscitation (DNAR) decision had been made or even discussed during Mr O’s admission.
25. Our adviser says it should have been apparent that CPR would have had no realistic chance of success and would have been an inappropriate treatment option.
26. The NHS Constitution for England says people have the right to be involved in discussions and decisions about their health and care, including their end-of-life care, and to be given information to enable them to do this. Where appropriate this right includes their family and carers. In line with this, staff should have discussed DNACPR with Mr O and his family.
27. Our adviser also says if the Trust had input from palliative care, Mr O would likely have been given some anticipatory medications such as oral morphine as a precaution to ensure he was comfortable at home. This is something the family or the patient themselves can administer.
28. We find the Trust should have identified Mr O was nearing the end of his life by using the GSF guidelines and put a plan in place to manage this. There were several indications he was very unwell and rapidly declining, therefore, staff should have identified this. If Mr O had been put on end-of-life care, this plan would likely have included anticipatory medications being prescribed to manage potential distressing symptoms that may have arisen.
29. Further to this, we find the Trust should have identified CPR would have had no realistic chance of success for Mr O and put a DNAR in place.
30. We have considered the impact of this on Mr O and his family later in this report.
Discharge arrangements 31. Mrs A says in the last few days before her father was discharged, his blood pressure had been low. She says her father should have been put into a hospice or a care home before he died as he was very unwell.
32. Mrs A also says if her father had been placed in the correct care, they could have avoided having to attempt CPR.
33. The Trust said although Mr O’s blood pressure was low, this improved over time and there were multiple contributing factors to this. It says staff communicated with his GP in the discharge letter to review Mr O’s blood pressure in the community.
34. The Trust said Mr O had a reduction in his mobility, so the Therapy Team ensured that the necessary equipment was provided for discharge home. This was following an assessment that was carried out at Mr O’s home on 5 January 2023 with his daughter present.
35. In the records there is an outpatient clinic letter dated 21 October 2022 which shows Mr O’s deterioration. Mr O’s exercise tolerance (how far he could walk) had fallen from around 110m to 37m on a flat surface within a year. It was also noted he had lost around 3.5 stone in weight in the last two years.
36. The records show Mr O was reviewed regularly by physiotherapy during his admission. On 26 December 2022, for instance, he was able to transfer on and off his bed independently and was able to walk safely for about 12m. It was noted he became short of breath easily due to his lung disease.
37. Our adviser says there was no need for Mr O to remain in hospital for acute treatment as he was clearly coming to the end of his life. There should, however, have been discussions around his preferred place of death. As the Trust did not discuss this with Mrs A, we do not know Mr O’s preferred place of death.
38. Our adviser says, in their opinion, Mr O would have been suitable for consideration of a fast-track discharge, given his condition was clearly rapidly deteriorating.
39. The Government website describes the ‘Fast-track pathway tool’ to be for:
‘Individuals with a rapidly deteriorating condition who may be entering a terminal phase may require ‘fast-tracking’ for immediate provision of NHS continuing healthcare.’
40. Our adviser says this would have triggered an assessment and discussion around how Mr O’s needs could have best been supported and where. It is possible this may have led to a decision for him to remain in hospital (or go to a community hospital or similar) while waiting for a care home to be found.
41. We find the Trust should have considered other suitable discharge arrangements. Mr O may have been suitable for a fast-track discharge which may have led to him being discharged to a care home or other suitable environment, where he would have received the care he needed, instead of to his home address.
42. We find the Trust did not acknowledge Mr O was heading towards the end of his life, this meant that the support arrangements and the discharge destination, could have been different to suit his needs better.
43. We go on to consider the impact of this later in our report.
Communication with the family 44. Mrs A says her sister found her father at home in bed as the family had not been told he was being discharged. She says he was unable to move himself and did not have access to a phone so could not contact his family to tell them he was home.
45. The Trust said the documentation says the nurse informed Mr O’s family about the discharge but did not document which family member was contacted.
46. The records show a nursing note at 2pm on 7 January 2023 which says ‘Pt [patient] to be home for 14:00 for POC. Transport booked…family informed’. However, there are no details about this conversation or which family member was informed. POC stands for Point of Care which refers to the location where healthcare services are provided, this can include a patient’s home.
47. NMC guidance says nurses must:
‘…communicate effectively, keeping clear and accurate records and sharing skills, knowledge and experience where appropriate.’
48. Our adviser says standard practice is for someone from the hospital to ring a family member to let them know the patient has been discharged home, this would usually be done by the nurses or the discharge coordinator.
49. We find there is not enough evidence in the records to tell us who the staff member spoke to or the details of the communication. Mrs A and her sister have confirmed they did not know Mr O was being discharged home, therefore, something has gone wrong with the communication. This was not in line with NMC guidance, nor is the record keeping for this specific entry of communication.
50. We can see the Trust tried to communicate with the family as this is recorded within the records. However, the Trust has not provided specific information, and we recognise Mrs A and her sister were not aware Mr O was being discharged.
Impact 51. Mrs A told us Mr O was in a lot of pain before he died. She says he was extremely breathless, gasping for air and in severe pain due to grade two bed sores. This was incredibly distressing for the family to witness and has contributed to their final memories of Mr O being very upsetting.
52. If the Trust had prescribed anticipatory medication, Mr O’s family or carers could have administered it to make Mr O more comfortable and relieve any pain he had before he died. This would have relieved some of the family’s distress at seeing Mr O in a lot of discomfort.
53. Mrs A told us she and her sister performed aggressive CPR on Mr O when he was dying. If the Trust had put a DNAR in place, this would have been discussed with Mr O and his family. Therefore, we believe it is more likely than not, this would have avoided the family attempting CPR on Mr O before he died. In addition to this, if Mr O had remained in hospital waiting for a care home, or other suitable environment, instead of being discharged to his home address, the family would not have performed CPR.
54. Trying to resuscitate Mr O has caused Mrs A and her sister significant distress and upset. The family did not have time to prepare for Mr O’s death either. This also had a significant impact on the family’s last images and memories of Mr O which has exacerbated their grief.
55. Mrs A says, had the Trust provided Mr O with appropriate care, the last images of her father in his final hours would have been significantly different.
56. Had the Trust identified Mr O was end-of-life and informed family members, this may have given them the opportunity to inform all close relatives, so they had the opportunity to say goodbye. There was a missed opportunity for Mr O’s grandson to say goodbye to him as the family were not expecting Mr O’s death.
57. We recognise it would have been very distressing for Mrs A and her sister to find Mr O at home when they were not expecting him to be there. It is understandable they worried about what could have happened if they had not arrived at the house.
58. We also understand it would have been worrying for Mr O being at home unable to contact his family until the carers would have arrived.
59. We recognise the family would have been incredibly upset and distressed at the death of their father even if the care had been provided in line with guidance. However, the failing we have found of the Trust not recognising and communicating that he was nearing the end of his life meant that what happened next, including CPR and the family not being able to say goodbye, exacerbated their grief. It has also caused a significant impact on the family’s last images and memories of Mr O.
60. The failings in the care provided are particularly serious and have caused significant distress to Mr O’s family.