End of Life Diagnosis
19. Mrs A complains that on 9 June 2024, the doctor gave her father an end-of-life diagnosis without having examined him in person. The doctor noted he was unconscious, and because of this said that liquids, food and medication should be withheld.
20. Mrs A disputes that her father was unconscious. She explained that her father has always been exceptionally hard to waken, and she can appreciate this being interpreted as his being unconscious during a remote examination, particularly as he was profoundly deaf. However, she believes this was not the case, and if he had been examined in person the diagnosis would not have been made.
21. She had visited that morning, and he had complained of a bad night previously, and extreme thirst. He was drowsy due to his poor night’s sleep but complained he had not been receiving all his meals and drinks (which had been an issue for several weeks).
22. The doctor provided a response on behalf of the Practice on 17 June 2024. He explained that he had been called in the morning of the day in questions by staff at the care home, as they were concerned about a change in Mr R’s condition.
23. He says he was asked to consider the possibility that Mr R was declining, but that he was aware these situations can improve. He says the most important issue to him at the time was that if Mr R were to persistently deteriorate over days, then the plan should always be to be prepared to alleviate distress, and that care home staff often call weekends as there is a lack of plan if things should continue to decline. The doctor advises that Mr R’s condition picked up (which is a common scenario).
24. The doctor explained that understanding when someone is dying is an ongoing exercise of observation, and there is no ‘diagnosis’ of end of life.
25. He explained that the decision to give end of life medication to a patient residing at a rest home would always be done by a qualified clinician from the District Nursing Team or the Hospice, where they are more experienced with dealing with end-of-life care. He assured Mrs A that her father would not have been palliated for the wrong reasons, and that this was a case of preparing for unpredictability of later life.
26. He explained that the centre had begun providing telephone advice at weekends during the Covid pandemic, and there is not a commissioned service for home visiting. If it was felt that a home visit was needed though, the centre would ask emergency services to attend.
27. The doctor says he was asked a direct question by the home as to whether Mr R should be given medication at the time of the assessment, and the doctor felt it was reasonable for it not to be given if he could not be aroused, He says there was also a concern he could be at risk of choking.
28. A further response from the doctor, on behalf of the centre, was provided to Mrs A on 12 February 2025. He advised that he and another member of staff attended the home on 9 October 2024 to meet with the home’s available care team.
29. He explained that a frank discussion took place to decide if any further training was required. It was felt that there were clear policies in place, but individual members of staff may need some support from clinicians should events arise around interpretation of physical decline.
30. He explained that the facility is a Residential Home where decisions to treat with medication are left to the visiting healthcare professionals. Policies around withholding food and drink were also discussed at the meeting, and it was acknowledged regular review was needed.
31. Regarding the decision taken on 9 June 2024, he explains an end-of-life decision was not made. He states that he provided medications in case things progressed and Mr R required comfort medications at the decision of a visiting health care professional. Because of the potential risk of aspiration and reduced consciousness at that time, it was decided not to proactively give food and fluids. This decision was later withdrawn.
32. He explains that with Mr R’s level of frailty at the time, he would already be considered ‘end of life’ should that definition be that he is in the final years of life. A decision that day to withhold oral medication and fluid was to prevent aspiration and was not documented as a permanent decision.
33. He reiterated that advice at weekends if provided by telephone, and that is how it is commissioned in Sussex. He explains there was a discussion the following day by telephone, and that doctors usually do not give a prognosis of when death will occur but rather look for patterns of this and he had to plan for the possibility.
34. He states he believes Mrs A’s understanding that a diagnosis of ‘end-of-life’ was given was a misinterpretation of Mr R’s sensory issues (his deafness) and an unclear protocol on deciding to reinstate fluids between the Home and the Practice.
35. He explains that death can be hastened should somebody have fluid/food removed though nobody was intentionally trying to hasten Mr R’s death. He advises that the policy of avoiding aspiration of food and fluids in somebody that is believed to have reduced consciousness becomes the opposing issue. Death can occur suddenly, especially in the very frail, or it could be more predictable over a number of days. There is often an anxiety to not cause aspiration in these final days.
36. At the end of the letter, he advised Mrs A that there will be a situation in the future where her father will have changes in his consciousness. He says that they may be transient on occasions, but at some point, will be in his final days of life. He explained that the Practice are going to make any judgements carefully and hopefully in conjunction with Mrs A, but he reiterates Mr R had expressed his wishes in the ‘RESPECT Care Plan’. He advised Mrs A she should inform the Practice if she thinks they should be doing things any differently, but he expects with memory of this conversation it will be done with appropriate communication and assessment.
37. In the response provided on 21 February 2025, the doctor acknowledges his video call to the care home on 9 June 2024, gave a strong impression that Mr R’s death was imminent. He says he profoundly apologises for this, as he can see the knock-on effect it has had and has contributed to further difficult communication to the surgery.
38. He also acknowledges this set up a difficult conversation between Mrs A and the Nurse Practitioner (PHSO will consider that conversation in a separate point later in this report). The doctor explains he has learnt he needs to consider the level of comfort and specifically residential home staff have in seeing patients who are in that difficult position of being both end of life versus entering the terminal stages and says this is an area where they find more ease within nursing homes. He makes it clear that he would not criticise the staff at the home and refers to the previous actions he mentioned in earlier letters to and discuss these issues with them.
39. He offers further clarity on the previous letter (after Mrs A asked for this) and says he understands he was not clear with the sentence “what you have clarified I believe, is a misinterpretation of your dad’s sensory issues and an unclear protocol of deciding to reinstate fluids between the Home and the Practice”.
40. He explains that what he was trying to say to Mrs A here was that from her own experience with her father, she had pointed out issues regarding his ability to hear and communicate, which was not evident to the doctor when he called the home on 9 June 2024.
41. He says he feels that clinical scenarios which involve the withdrawal of food and fluids should, in the cases of residential homes at least, be pro-actively managed so there is no further miscommunication as residential home staff will need constant reassurance of what to do.
42. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.
43. As part of our investigation, we sought advice from an experience clinician with relevant experience in the field. They reviewed the clinical records and other documents and were then able to respond to a number of questions we had.
44. One of the most important questions we had was regarding the ‘end of life’ diagnosis that Mrs A has said was incorrectly made. The response from the Practice suggested that no such diagnosis was ever made, and that this made be down to a miscommunication with Mrs A when matters were explained to her.
45. We asked the clinician to review Mr R’s clinical records, and whether they were able to confirm if there was such a diagnosis in the records relating to the call on 9 June 2024.
46. They explained that the consultation on that date was not from the patient’s usual GP surgery but the wider PCN to cover out of hours. The letter from the Practice explains this cover is given remotely via telephone or video call.
47. Our clinical advisor noted that, importantly, according to the clinical records advanced care planning was already in place from 10 May 2024 from Mr R’s usual GP surgery where the decision was made with the patient not to be admitted to hospital, not to be resuscitated, anticipatory (JIC) medication prescribed, and for end-of-life care at the care home when needed. The records show this was discussed with the next of kin (Mrs A) at the time.
48. The consultation notes on 9 June 2024 do not explicitly say for end-of-life care and does not have much detail overall. It indicates Mr R’s condition was deteriorating and that the anticipatory medication was discussed.
49. The response letter from the Practice expands on this saying that the GP just provided the anticipatory medications in case of further deterioration to keep Mr R comfortable and not to proactively give food or drinks to avoid the risk of aspiration as he was drowsy.
50. Another response letter does acknowledge that the overall impression seems like end-of-life-care was started and the GP apologised for this. It can be hard to know, and patients often fluctuate but proactively trying to feed or hydrate someone when they are drowsy can be dangerous.
51. In considering this complaint, we reviewed NICE guidelines NG142 ‘End of life care for adults: service delivery’. This document covers organising and delivering end of life care services, which provide care and support in the final weeks and months of life (or for some conditions, years), and the planning and preparation for this. It aims to ensure that people have access to the care that they want and need in all care settings. It also includes advice on services for carers.
52. Section 1.6 of the guidance covers advance care planning, and states:
“1.61 Service providers should develop policies to ensure that advance care planning is offered to adults who are approaching the end of their life. Policies should take into account under-served and vulnerable groups.
1.6.2 Service providers should develop processes to support carers and other people important to the person to be involved in advance care planning, if the person approaching the end of their life agrees.
1.6.3 Service providers should have systems in place to ensure that adults approaching the end of their life each have a copy of their advance care plan available in their place of residence or with them if admitted to a hospital, care home or hospice.
1.6.4 Service providers should develop processes to take into account the views of carers and other people important to the person if the person approaching the end of their life lacks capacity to make decisions in line with the Mental Capacity Act 2005.
1.6.5 For advice on supporting decision making, assessing mental capacity and advance care planning, see the NICE guideline on decision-making and mental capacity.
1.6.6 For advice on starting advance care planning in adults who: • are at risk of a medical emergency • • have motor neurone disease • have multimorbidity • have dementia • have learning disabilities”
53. While this complaint doesn’t look at the advanced care planning itself, it provides important context to show that it was in place prior to the events we are looking at, as that would guide how the doctor should have acted.
54. Similarly, we refer to the NICE guidance ‘Palliative Care – general issues’, which contains a section on ‘anticipatory medicine’. This section explains that clinicians must:
• “Use an individualized approach to prescribing anticipatory medicines for people who are likely to need symptom control in the last days of life. Indications for use and the dosage of any medicines prescribed should be clearly documented in the individualized care plan.
• Assess what medicines the person might need to manage symptoms likely to occur during their last days of life (such as agitation, anxiety, breathlessness, nausea and vomiting, noisy respiratory secretions, and pain).
• Discuss any prescribing needs with the dying person, those important to them and the multi-professional team.
• Ensure that suitable anticipatory medicines and routes are prescribed as early as possible. Review these medicines as the dying person's needs change.
• Health professionals should consider: • The likelihood of specific symptoms occurring.
• The benefits and harms of prescribing or administering medicines.
• The benefits and harms of not prescribing or administering medicines.
• The possible risk of the person suddenly deteriorating (for example catastrophic haemorrhage or seizures) for which urgent symptom control may be needed.
• If anticipatory medicines are administered: • Monitor for benefits and any side effects at least daily, and give feedback to the lead healthcare professional.
• Adjust the individualized care plan and prescription as necessary.”
55. With this in mind, we wanted to examine whether it was appropriate for the 9 June 2024 assessment to take place remotely and sought advice on this.
56. We also reviewed the General Medical Council (GMC) guidance document ‘Good medical practice’, which says on offering remote consultations:
57. “You must provide safe and effective clinical care whether face to face, or through remote consultations via telephone, video link, or other online services. If you can’t provide safe care through the mode of consultation you’re using, you should offer an alternative if available, or signpost to other services.”
58. As we have seen from the clinical records, Mr R was already palliative, and considering his age and frailty, advanced care planning already made. This was an expected deterioration, and a decision did not need to be made whether he needed hospital admission.
59. It is important to note here that what we are examining here is whether it was appropriate for the assessment to be carried out remotely, not what the diagnosis was. As has already been established, there is nothing to suggest an end-of-life diagnosis was made during the assessment, and the advice we received indicates that a video consultation meant Mr R could be observed and a home visit was not likely to have changed management.
60. Taking this into account, along with the NICE and GMC guidance, it does appear that the Practice was following guidelines correctly in conducting a remote assessment, and as such we cannot find any maladministration or service failure here.
Communication with Family
61. Mrs A is unhappy that the doctor did not include the family in the decision-making process. She believes that had this happened, they would have had the opportunity to make it clear to the doctor that her father was regularly awake on visits by her and other family members and had been able to take food and liquids unaided.
62. In the response of 17 June 2024, the doctor advises he said to the care home that if there were any concerns regarding the communication of what was happening to Mr R, then he would be happy to speak with Mrs A himself that day. He does apologise to Mrs A for not taking further steps to communicate directly with Mrs A so she understood what was happening, and that he allowed the care home to advocate on his behalf.
63. In the response of 12 February 2025, the doctor advised Mrs A that her father’s case was discussed at a significant events meeting on 22 August 2024, in the present of the wider clinical team.
64. He agreed the family did not have a discussion when he was called by the care home on 9 June 2024. He notes that Mr R undertook a respect plan in May 2024, in person with another member of staff from the Practice, where he was deemed to have capacity and made his own decisions about end-of-life care planning. The doctor explains family members should be made aware if the patient wishes to discuss this further.
65.
66. He explained all clinicians were made aware of the communication issues that can arise for frail and elderly residents, especially in care homes. It was agreed to have a meeting to discuss this further with the home regarding the Practice’s approach to end-of-life care, to avoid any further communication issues as outlined in Mr R’s case.
67. We sought further clinical advice on this point, with a view to finding out if it is in line with correct NHS practices to provide such instruction without input from the family. As well as speaking with our clinical advisor, we consider the NICE guidance ‘Palliative Care – general issues’.
68. The guidance has a section entitled ‘How should I address the needs of the family and carer?’ which is relevant here, which states clinicians should:
• “Offer family members and carers the opportunity for their needs (for example for support and information) to be assessed separately from those of the person receiving palliative care. They may have specific concerns such as: • Fear of the person dying.
• Anxiety about an emergency occurring (for example what constitutes an emergency and how to deal with it).
• Feelings of inadequacy with regard to caring for the person at home (for example lack of knowledge about how to make the person comfortable or appropriate lifting techniques).
• Suppression of their true emotions in order to protect the person they are caring for.
• Financial worries.
• Altered role and lifestyle.
• Whenever possible and appropriate, invite family members and carers to be involved during clinical encounters and decisions about treatment and care (if this reflects the wishes of the person receiving palliative care).
• Ensure that family members and carers are made aware of local sources of information, advice, and support, to address their own needs.
• Particularly address the needs of the family and/or carers at demanding times in the person's illness, and when extra help may be needed.
• Consider that people of different ethnic backgrounds or cultures may have specific preferences regarding family involvement.
• Be aware that the demands of being a carer can sometimes present as physical symptoms (for example fatigue or weight loss).
• The family can be helped by: • Facilitating communication between the person and their family and healthcare professionals.
• Recognizing areas of stress in other areas (for example work or coping with children).
• Education to provide the skills and knowledge to provide the necessary aspects of care to enhance the person's comfort.
• Discussion of pain management to reduce anxiety regarding potential addiction or tolerance.
• Encouraging expression of fears, concerns, uncertainty, and emotional strain.
• Providing information regarding the person's death and what to expect.”
69. The guidance does suggest that best practice would be to involve or inform the patient’s family, especially of the deterioration he was judged to have undergone.
70. However, this could have been complicated since it was out of hours, and it would usually be the responsibility of the care home to inform the family of any deterioration. In addition, the care plan was already in place, and a decline was expected in some way.
71. While it might have been best practice, the fact that the Practice did not do this would not appear to go against policy, and so we would not look to investigate this point further.
Comments by the Nurse Practitioner
72. Mrs A explained that following an email attempt on 12 June 2024 to have her father reassessed, the Nurse Practitioner (NP) at the Practice told her that her father was close to death and unconscious.
73. Mrs A says she told the NP that on each day from 9-12 June 2024 her father had been conscious during numerous visits by various family members, and that on the visits from 10 June 2024 he had complained of being thirsty and hungry.
74. Mrs A says that the NP told her again that her father that he was dying, and she must get used to it. She says the NP ignored what she was being told about Mr R’s condition and told her that people commonly have an energy surge when they are near death, and that was all that was happening in her father’s case.
75. In the Practice’s response of 12 February 2025, the doctor confirms that he recalls having to debrief the Nurse Practitioner (NP) after she spoke to Mrs A on 12 June 2024. He recalls her being upset and says that the conversation she had with Mrs A clearly did not go well.
76. He says that he can understand how this may have occurred, and from Mrs A’s comments and the context she provided can see why she was driven to advocate strongly for her father and felt an injustice would occur if she did not raise it.
77. He says that he is sure some of the expressed sentiments were regrettable but ultimately did not impact on Mr R’s clinical care (though he accepts it has caused hurt feelings). He says that the Practice reflected on this last year but doesn’t go into detail about this.
78. In a follow-up response on 21 February 2025, he advised that he has discussed this with the NP again, following Mrs A’s recent letter. He says the NP is sorry for any hurt feelings and agrees the conversation was detrimental to the understanding of Mr R’s situation
79. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the event(s) complained about had a negative effect which the organisation has not put right. Having done so we have found the Practice has already done enough to put right the impact of these events.
80. We can fully appreciate why the comments alleged to have been made by the NP would have been so hurtful to Mrs A, particularly at such a vulnerable time.
81. We can see that the Practice has accepted the impact of the comments and has provided feedback to the NP that made them. We can see that the Practice has provided an apology on behalf of the NP. These are the actions we would expect to see the Practice take in such circumstances, and do not expect that there would be further actions we could recommend should we move forward with a more detailed investigation of this point. With this in mind, we will end consideration of this matter here.
In-person Visits
82. Mrs A explained a promised in-person visit by the doctor to examine her father, scheduled for 13 June 2024, was instead conducted by telephone. The doctor called Mrs A at home, so her father was not present for the telephone visit. She said that during the call, the doctor told her that all weekend appointments are by video/telephone call.
83. Mrs A says that the first time her father was seen by anyone from the Practice at all was during a ward round with the Practice’s Nurse Practitioner on 17 June 2024, and it is unclear whether this was conducted in-person or remotely.
84. Mrs A advised that the doctor did not conduct an in-person visit until 21 June 2024.
85. In the response of 21 February 2025, regarding the in-person visit agreed following the email Mrs A sent to the Practice, the doctor says they can see all the issues addressed in the email were picked up. He adds that the same day it is documented that the Practice had a conversation with Mrs A to discuss what had happened.
86. He confirms that the visiting doctor’s assessment of Mr R was initiated by the email and then explains that reviewing the RESPECT plan would be a common activity on any contact with any resident in a care home or known to be significantly frail.
87. He acknowledges it would have been wiser of the Practice at the time to confirm that the visiting doctor had seen Mr R, though the person who replied to the email may not have been completely able to interpret the notes at the time. He confirms Mr R father was seen in person on 19 June 2024, after the visiting doctor had finished that day’s surgery. He also notes the remote review carried out by the NP on 17 June 2024.
88. He explains telephone and video ward rounds started with the Primary Care Network (PCN) contract 6 years earlier, and that Practices were contracted to provide weekly rounds to nursing homes. He advises this is done by all Practices in the area with a combination of telephone, video and usually a monthly visit. This does not stop the Practice from doing other visits as issues occur.
89. While investigating this point, we once again reviewed the NICE guidance ‘Palliative Care – general issues. Scenario: Management approach’, as well as seeking further clinical advice.
90. The first thing we were looking to establish was whether Mr R’s clinical records backed up the centre’s assertion that an appropriate in-person assessment by a doctor was carried out on 19 June 2024, and not on 21 June 2024 as claimed.
91. The records do show that an assessment was carried out on that date (a face-to-face review).
92. According to the records, this appointment was made due to Mr R displaying high blood pressure and vomiting, rather than a planned palliative review.
93. The notes are brief and just mentions that Mr R’s blood pressure had improved but he was frail, under palliative care and that his family were aware.
94. Having established when the appointment took place, we also wanted to look at whether this appointment should still have taken place sooner and sought further clinical advice on this.
95. Our advisor noted that the review on 19 June 2024 seems to have happened because of an acute change rather than a planned palliative review as described above. There is no record of a planned doctor review for 21 June 2024.
96. According to out advisor, the records suggest a face-to-face visit should have been considered following the consultation on 9 June 2024 where Mr R was deemed to have deteriorated. This is when Mrs A daughter requested that a visit take place on 12 June 20204, which did not happen.
97. The records show Mr R’s condition was fluctuating and the family were concerned whether the correct decisions were being made. Although it may not have made much clinical impact to Mr R, it may have at least provided reassurance to the family during a difficult time if this had been carried out sooner.
98. The NICE guidance ‘Palliative Care – general issues. Scenario: Management approach’ carries guidance for clinicians on ‘How should I address the needs of the family and carers’, which we referred to in the earlier section on ‘Communication with Family’. As with that point, it seems here that while it might have been best practice, the fact that the Centre did not do this would not appear to go against policy, and so we would not look to investigate this point further.
Change of Status
99. Mrs A complains that the Practice were reluctant to monitor or change her father’s status despite evidence that his condition was improving.
100. While investigating this, we again sought clinical advice. We were looking to establish what status was in the clinical records at the time of the events, and whether this was justified.
101. We can see that at the time of 19 June 2024, the records state ‘EOL/palliative’ but do not elaborate further.
102. We also know from the records that Mr R was eating and drinking soon after 9 June 2024 and he had a medication review to stop any unnecessary medication. The main aim was to keep him comfortable in case of any further deterioration. The notes end on 4 July 2024.
103. Having discussed this with our clinical advisor, it seems it is difficult to know in this case what the difference in management between end-of-life vs palliative care was and seems likely there would be very little difference in what care was provided whichever of the two statuses was used.
104. From the evidence we have seen, the consultation on 9 June appears to have been carried out reasonably, but the follow-up care from the patient’s GP could have been better, with a face-to-face review being provided sooner. However, as noted, it appears the actual clinical impact would have been minimal at worst.
105. With there being no apparent change in care that would have been provided even if the status had been changed, we see no caused to proceed with a further investigation of this complaint, and there is o indication of any injustice caused.
Lack of Response
106. Mrs A complains that the Practice did not respond to the Care Home’s urgent request to resume giving her father liquids and foods until she contacted them herself on 12 June 2024.
107. Mrs A emailed the Practice at 13:44 on 12 June 2024.
108. In the Practice’s response of 12 February 2025, the doctor advises there was daily contact with the home regarding Mr R during the period after the weekend. He agrees though that more could have been done to avoid the upset caused to Mrs A.
109. He explains the discussion with the care home came to the conclusion that Mr R could restart liquids and foods but given the time that has passed and a lack of information, he cannot confirm ‘who said what’, as Mrs A had asked him to do. He confirms the hospice gave the instruction to reinstate fluids.
110. The following day, he explains, the Nurse Practitioner (NP) had a conversation with the staff at the home and Mr R was reported to have been ‘settled’.
111. In a further response (sent on 21 February 2025), the doctor notes Mrs A had requested more detail on how the daily contact was conducted.
112. He explains daily contact was between with the staff at the home with the NP, until the other doctor later that week. He says the conversations are documented, and there was no further noting of the need to withdraw food and fluids.
113. He says that the NP believes she had told the staff Mr R could eat and drink prior to the involvement of the Hospice, but that the Practice cannot comment on how that information was managed by the home.
114. We asked our clinical advisor to review the clinical records and confirm whether daily contact was made. They advised that the records suggest Mr R was reviewed on a regular basis, but not daily.
115. As already established in the previous section, we are satisfied that the care and monitoring being provided was in line with clinical guidelines, and we do not see that there are indications of a failure here that would require us to carry out a wider investigation.