11. Mrs R says the GP did not act on the recommendations from her husband’s oncology consultant and hospice nurses in relation to his symptom control. She says the GP did not give her husband the correct pain relief and he have had a syringe driver (which gives a continuous flow of medication to help manage symptoms like pain and sickness). Mrs R feels the GP should have referred her husband to a hospice sooner and that his symptoms could have been better managed there.
12. 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.
Pain and symptom management
13. GMC guidance for treatment and care towards the end of life says there should be careful consideration of the patient’s clinical condition with thorough assessment. It says a doctor must seek advice or a second opinion from a colleague with relevant experience (who may be from another specialty, such as palliative care) if they are uncertain about how to manage a patient’s symptoms effectively or they are in doubt about the range of options, or the benefits, burdens and risks of a particular option for the individual patient.
14. Doctors should also seek advice if there is a difference of opinion within the healthcare team, or between the team and those close to a patient who lacks capacity, about the preferred option for a patient’s treatment and care.
15. Mr R had an aggressive brain tumour. Our adviser says, from their experience, symptom control in this condition is very difficult and it may not be possible to provide complete symptom control without over-sedating the person. It can be impossible to prevent seizures and pain at all times. Our adviser says Mr R’s symptoms were as you would expect for someone with this condition towards the end of life. We understand this must have been distressing for Mrs R and her children to see.
16. The GP did face to face assessments of Mr R regularly and was also reliant on the information the nursing home staff gave them. This would only be a moment in time, so we appreciate the family say there were times where Mr R’s condition did not reflect the GP’s view. Based on the GP’s assessments and information they had from staff, we can see they did the right things to monitor and manage Mr R’s symptoms. The records indicate Mr R’s symptoms were controlled as best as the they could. Our adviser says the GP prescribed the necessary medications and continued to review and monitor this, increasing Mr R’s pain relief accordingly. This was in line with GMC guidance. Where Mr R’s medication was to be given as and when required (PRN), this was not something the GP could control. Care home staff who were responsible for managing Mr R’s care day to day and would administer this.
17. The GP got advice from the hospital oncology team and palliative care team at the hospice who were involved in Mr R’s care. Those teams gave conflicting advice on the use of dexamethasone, the steroid prescribed for symptom control and seizures. The hospital team said this should be reduced and tapered off, but the hospice said the GP should increase the dose at times.
18. There was a difference in opinion based on the different teams’ own assessments and views. Our adviser says there is no right or wrong answer for the decision around dexamethasone, it is difficult to manage symptoms in Mr R’s situation and is down to clinical judgement. The GP did what they thought was best to keep him comfortable. This does not mean there are indications the GP got something wrong as both approaches were advised.
19. We understand to the family it may have seemed the GP was disagreeing with the other medical professional’s advice. The records do not indicate that was the case. Better communication with them around this at the time could possibly have limited their concerns. We can see the GP acted in line with GMC guidance by seeking advice from other specialists to reach a decision based on that, their own clinical assessment and judgement.
20. Mrs R also complains the GP should have given Mr R a syringe driver to manage his symptoms. We asked our adviser if this was something he should have had. The GP prescribed a syringe diver and end of life medications to Mr R on 9 January in anticipation for when he may have needed them. But our adviser says based on his clinical condition documented in the records and information provided there is no indication he needed this in the period of care we are considering, before he went to the hospice. The records said it could be difficult to manage a separate syringe driver as it could complicate Mr R’s dose regime. Staff in the care home were managing his medicines, and the records do not indicate they had any problems administering these, until he began to have some difficulty swallowing a few days before the decision to admit him to the hospice. At that time consideration of a syringe driver would have been clinically appropriate, but Mr R was being moved to the hospice where they considered this. We have not seen indications of a failing.
21. When we weigh up the available evidence, we think the GP acted in line with the GMC guidance on end of life care. They assessed Mr R regularly and sought specialist advice to make appropriate decisions based on his clinical condition. There were a number of agencies involved in making sure Mr R had the right care at this time. We can only look at the GP’s responsibility and we think that based on the information they had, they did the right things.
Delay in hospice referral
22. We have also considered whether the Practice caused a delay in Mr R going into the hospice. Our GP adviser says there is no standard or guideline for when a patient should be admitted to a hospice, the decision is based on clinical judgment. A patient would be referred where symptom control is not possible in another setting. It is not a GP’s decision and does not need the GP’s agreement. It is usually a joint decision with the palliative care team.
23. We can see the hospice staff reviewed Mr R on 8 January and did not say Mr R would be better managed in the hospice. They said the family felt he was settled in the nursing home and it would be his preferred place of death to avoid the upheaval of moving. On 10 January, the records say Mrs R changed her mind and wanted Mr R to be admitted to the hospice. The hospice staff reviewed Mr R later that day and again did not find Mr R would be better managed in the hospice and noted it would be second choice if his symptoms were not well managed.
24. The GP had also discussed Mr R with a hospice nurse on 12 January, and they both felt Mr R’s symptoms were appropriately managed. At the time he was noted to be comfortable and had no seizures, so there was no indication moving him to a hospice was appropriate unless his symptom control became difficult. They were aware this also depended on bed availability at the hospice.
25. The notes around this time and thereafter include: ‘[Mr R] very bright this morning, no complaints, hasn’t required and PRN analgesia overnight or today. Now settled and sleeping…no non verbal signs of distress or agitation.’ And ‘had a settled weekend, engaging, more alert and bright, awake sometime during my visit very smiley.’ It also recognises Mr R had ‘a few days of headache pain which then settles on taking paracetamol regularly and as needed Oramorph’. Mr R’s presentation and symptoms do not indicate he could not be managed in the care home or that the GP should have pushed for an urgent referral to a hospice.
26. On 15 February, the day before the decision to admit Mr R to a hospice, the GP assessed him and discussed him with the nursing team. They were both happy with his care and did not feel he needed to be admitted. The previous day, however, a hospice nurse had made a referral for Mr R to be admitted, as she felt he needed admission and a syringe driver for medication due to difficulty swallowing.
27. There had been a difference in opinion between one of the hospice nurses and the GP from their assessments. This does not indicate the GP got something wrong in their assessment, and there is no suggestion the GP was against an admission to the hospice. The records show the GP regularly considered whether Mr R needed to be moved there. Their clinical opinion was that he was being appropriately monitored and managed where he was. We appreciate the family disagreed with this. The family had spent more time with Mr R than the GP, and their account suggests they witnessed him experiencing more episodes of pain. This is because the GP would only have seen Mr R for short periods, and relied on information passed on to them by staff caring for him.
28. The GP discussed Mr R’s care with a palliative care consultant. This is in line with GMC guidance on seeking advice from a colleague with relevant experience. Between them they agreed it was best to admit Mr R to the hospice at that point, based on all the information they had from those involved in his care, and from the family. Our adviser said this was the right decision at that point based on the information available to the GP when considering Mr R’s condition and the family’s views and preferences. At this time it was noted Mr R had began to struggle swallowing. There is no indication that when hospice admission was previously considered, the GP should have reached a different view as the records clearly documented how Mr R’s symptoms were being managed throughout.
29. Our adviser said that records after Mr R went into the hospice, do not indicate a significant improvement in his symptom control. Sadly it does not appear Mr R’s symptoms could easily have been managed. But we can see the family felt he seemed more comfortable and relaxed, so we can understand why they would have wanted him to move sooner.
30. We have not seen indications of failings. The evidence indicates the GP acted in line with GMC guidance when managing Mr R’s symptoms and pain and when communicating with those involved in his care around his referral to a hospice.
31. We can only imagine how distressing and upsetting it was for Mrs R and her children to witness Mr R in pain and having seizures. We understand Mrs R wanted to keep her husband as comfortable as possible in the circumstances and did everything she could to do so. We hope Mrs R does not feel our decision in any way diminishes the impact this time and these matters had on her and her family.