Berkshire Healthcare NHS Foundation Trust

Trust A

6. Mr K complains about the care and treatment provided to his aunt Mrs P, by Trust A in June 2024. Specifically, he says Trust A:

• communicated poorly with the family and gave conflicting information about Mrs P’s prognosis • carried out unnecessary procedures and treatment including biopsies and dalteparin injections.

Trust B

7. Mr K complains about the care and treatment provided to Mrs P in July 2024, by Trust B. Specifically, he says Trust B:

• would not administer dalteparin injections • did not understand Mrs P’s diagnosis or prognosis • failed to provide appropriate care to minimise pain and dehydration.

8. Mr K says Mrs P endured months of unnecessary suffering due to the lack of appropriate care and treatment from both Trusts. He says the family will never recover mentally from witnessing her go through such pain and distress in the final months of her life.

9. Mr K tells us he was tasked with administering the dalteparin injections. It is not something he has experience with and had to be trained by a nurse at the hospital. He says the injections were painful and Mrs P would scream, and this was extremely distressing for them both.

10. Mr K tells us due to the poor communication by Trust A, the family and Mrs P were unaware as to the extent of her illness and when she began to deteriorate rapidly at the end of her life it was very shocking as they had thought she was coming home to recuperate, and she would recover.

11. Mr K says due to the conflicting advice about Mrs Ps diagnosis they were unaware she had terminal cancer. Mr K says the family have feelings of guilt as they encouraged Mrs P to have the biopsies and injections. He says had they known she was so near to the end of her life they would not have made her go through this.

12. As an outcome to his complaints, Mr K would like service improvements and financial compensation.

13. Mrs P had been housebound since 2012. She suffered a fall and a subsequent long lie on the floor and was admitted to hospital on 24 June 2024. She reported a four-week history of vomiting and decreased appetite as well as new onset immobility. Mrs P also reported a prolonged history of post-menopausal bleeding and abdominal pain.

14. Trust A carried out a CT scan on 24 June which showed probable metastatic cancer of gynaecological origin. Trust A had difficulty obtaining a biopsy due to Mrs P’s size and reduced mobility. Trust A was eventually able to take a biopsy on 27 June, and this was sent for urgent testing.

15. On 9 July Trust A advised Mrs P the biopsy had been unsuccessful, and they were unable to confirm a diagnosis at that time. Mrs P was discharged from hospital on 11 July and Trust B provided community nursing care in her home.

16. Mrs P was discharged as ‘bedbound’ having refused physiotherapy input on the ward to aid her mobility. She was discharged with blood thinning injections as she had blood clots on her lungs.

17. Trust A referred Mrs P to the high-risk anaesthesia clinic for its opinion on taking a further biopsy under general anaesthetic. The anaesthetist confirmed on 31 July a general anaesthetic would not be appropriate due to her poor health and co-morbidities (medical conditions that coexist alongside a primary diagnosis). Mrs P sadly died on 2 August.

Trust A

Communication

21. Mr K told us Trust A communicated poorly with Mrs P’s family and gave conflicting information about her prognosis.

22. We reviewed this matter with help from our oncologist adviser using Mrs P’s medical records.

23. Guidance from GMC’s Good Medical Practice for sharing information with patients’ states, ‘the exchange of information between medical professionals and patients is central to good decision making. You must give patients the information they want or need in a way they can understand. This includes information about:

• their condition(s), likely progression, and any uncertainties about diagnosis and prognosis • the options for treating or managing the condition(s), including the option to take no action • the potential benefits, risks of harm, uncertainties about, and likelihood of success for each option.’

24. The guidance also states, ‘you must listen to patients and encourage an open dialogue about their health, asking questions to allow them to express what matters to them, and responding honestly to their questions’ and ‘you must make sure that the information you give patients is clear, accurate and up to date, and based on the best available evidence.’

25. On admission to the Emergency Department (ED) on 24 June, Trust A identified Mrs P’s two-and-a-half-year history of post-menopausal bleeding was a concern and carried out a CT scan. The CT scan revealed metastatic gynaecological cancer which was likely to be endometrial (in the lining of the uterus). The scan also showed enlarged lymph nodes and lesions (abnormal growths) on the liver.

26. Endometrial cancer is also known as uterine (uterus) or womb cancer. Metastatic cancer is cancer which has spread from the primary site and is usually classed as stage four cancer.

27. Treatment for endometrial cancer depends on several factors. These include the general health of the person, type of cancer, how big it is, whether it has spread (what stage it is) and the grade. The grade of cancer describes how abnormal the cancer cells look and indicates how aggressive the cancer is likely to be.

28. Predicted survival of endometrial cancer depends on the stage of the cancer at diagnosis.

29. The CT scan results were discussed with Mrs P in the ED as soon as they were available. The records show Mrs P was aware of the CT findings of likely gynaecological cancer that had spread across her body. Mrs P asked about the prognosis (the likely course and outcome of an illness including chances of recovery and survival) and the doctor explained they were unable to say. The doctor told Mrs P her case would need to be discussed at the multidisciplinary team (MDT) meeting and then the next steps would be communicated to her.

30. The doctor offered to explain the situation to Mrs P’s family. Mrs P had asked her family to leave the room when the clinician had arrived. Mrs P declined the offer saying she wanted to explain it to them herself.

31. Trust A re-discussed the CT scan result with Mrs P on 25 June with a plan to carry out an ultrasound of her pelvis and a biopsy.

32. On 26 June Trust A attempted to perform a pipelle biopsy in the Urgent Gynaecology Service. An endometrial pipelle biopsy is performed by passing a thin plastic straw through the cervix into the uterus and retrieving the biopsy sample by slight suction as the inside of the straw is pulled out. Unfortunately, the pipelle biopsy was unsuccessful as Trust A could not visualise Mrs P’s cervix.

33. Trust A then made a plan to perform a hysteroscopy to obtain the biopsy. A hysteroscopy involves inserting a thin, lighted tube called a hysteroscope through the cervix into the uterus. This allows clinicians to visually inspect the lining of the uterus and identify any abnormalities or signs of cancer. The clinician can take a biopsy using specialised tools passed through the hysteroscope.

34. Trust A explained to Mrs P with her family members present the reason for the hysteroscopy was to aid diagnosis and plan treatment. Trust A obtained Mrs P’s informed consent, and the hysteroscopy was carried out on 27 June.

35. The same day Trust A held another discussion with Mrs P and Mr K about the need to get a tissue biopsy to confirm the diagnosis and guide treatment.

36. On 1 July Mrs P had a medical review. The doctor explained to Mrs P she likely had endometrial cancer that had spread to her liver and lymph nodes. They explained the cancer had probably been growing for some time given she had post-menopausal bleeding for the last two and a half years.

37. At this stage the doctor said they were waiting for the results of the biopsy to assess whether she would be a candidate for palliative treatment such as chemotherapy or radiotherapy.

38. The doctor noted they were frank with Mrs P and explained this was not a cancer that could likely be cured and a prognosis could not be given yet.

39. During this review the doctor explained to Mrs P she had blood clots on her lungs which they were treating with blood thinning injections. The doctor said these injections would have to be continued for at least six months and would need to be administered by a family member at home.

40. We note by saying the blood thinning treatment would last a minimum of six months, this may have given Mrs P the impression the doctor expected her to live at least this long. We understand how this may have been confusing or potentially have given false hope to Mrs P.

41. We also recognise the six-month time frame was given in the context of the blood thinning treatment and during the same conversation it was explained the doctor did not know how long Mrs P may have to live.

42. Later the same day Mrs P had a discussion with another doctor. Mrs P told the doctor she was upset as ‘someone told her she has two weeks to live’. The doctor explained to Mrs P no one can say how long she had to live as the biopsy results were not yet available.

43. We understand how frightening this must have been for Mrs P. We are satisfied the doctor looking after Mrs P was able to give her the correct information about her prognosis.

44. We recognise the correct information still provided no certainty or reassurance to Mrs P, but the fact was nobody could say how long she had and this was the message she was most strongly given throughout.

45. Unfortunately, on 9 July Trust A informed Mrs P and Mr K it was unable to provide a diagnosis or prognosis as the sample tissue obtained from the biopsy was necrotic (dead tissue).

46. Trust A continued to explore how it could successfully obtain a biopsy and referred Mrs P to the high-risk anaesthesia team for its opinion on obtaining a biopsy under general anaesthetic. Until a successful biopsy could be performed Mrs P’s diagnosis and prognosis remained uncertain.

47. Trust A discharged Mrs P to her home with a package of care on 11 July. She was bedbound, incontinent, and still waiting a formal diagnosis. She was also receiving treatment for blood clots on her lungs. Mrs P had carers attending to her daily with support from community nurses and her family.

48. On 30 July, a consultant anaesthetist spoke to Mr K and advised Mrs P was not a candidate for any surgery or anaesthetics due to her poor physiological reserve.

49. The consultant anaesthetist said it would be more sensible to attempt a biopsy under local anaesthetic again. They advised Mr K about palliative care and Mr K agreed it was more important Mrs P was made comfortable.

50. Sadly, Mrs P died on 2 August before any further attempts could be made to successfully obtain a biopsy.

51. Mrs P’s condition declined rapidly following her discharge. Our oncologist adviser said given there was not a large volume of metastatic disease on the CT scan and her blood tests all showed reasonable organ function, they would have expected Mrs P’s prognosis to have been at least a few months even without treatment.

52. Given Mrs P was cared for at home there are no further investigations such as blood tests to provide a clear reason as to why she declined so fast. Our oncologist adviser said the community nursing notes document Mrs P was eating and drinking very little and becoming dehydrated so this may have been a factor in her rapid deterioration.

53. Our oncologist adviser told us it would have been difficult to estimate Mrs P’s prognosis as this would depend on the exact type of endometrial cancer she had. Sadly, due to the biopsy being unsuccessful Trust A did not have enough information to be able to provide a prognosis.

54. The only information about prognosis that could have been given to Mrs P was general using Cancer Research UK figures which give the average survival rate for stage four endometrial cancer as 12-15 months with 18% of patients remaining alive at five years.

55. This is population-based data and clearly did not apply to Mrs P given her actual prognosis ended up being very much worse than the average and so this information would not have been helpful.

56. To provide more specific information on prognosis Trust A would have needed more detailed information on the type of cancer and its characteristics from a successful biopsy.

57. We asked our oncologist adviser if Trust A missed an opportunity to convey more clearly to Mrs P and her family about her prognosis. Our oncologist adviser said Trust A gave Mrs P and her family the information they had in a timely and supportive way. It is not always possible to be specific about the prognosis when important information such as cancer type and characteristics is not available.

58. We saw Mrs P asked about her prognosis on several occasions and each time she was correctly told it was not possible to say given the diagnosis had not yet been confirmed.

59. Mr K and his family were hopeful of a diagnosis and treatment options as this was the ongoing plan. Understandably, Mr K and his family held onto the hope of an eventual diagnosis and were perhaps reassured by the fact doctors were continuing to explore ways to obtain a biopsy right up until Mrs P died. Sadly, it could not be predicted how close to the end of her life Mrs P was.

60. We are satisfied Trust A communicated with Mrs P and her family to the best of its ability with the information it had available. This is in accordance with Good Medical Practice.

Dalteparin injections

61. Mr K told us Trust A prescribed dalteparin (blood thinning) injections. Mr K says they would not have agreed to putting Mrs P through the pain of these injections had they known she had so little time left to live.

62. We reviewed this matter with help from our oncologist adviser using Mrs P’s medical records.

63. The CT scan carried out on 24 June showed Mrs P had a significant pulmonary embolus (blood clot) which was causing right heart strain. Large pulmonary emboli are frequently life-threatening especially if they are causing cardiac dysfunction. Anti-coagulation (blood thinners) was necessary to start dissolving the clot and prevent new clots from forming.

64. Trust A chose dalteparin injections (blood thinners) after discussion with a consultant haematologist (blood specialist) because of the presence of vaginal bleeding. When patients have bleeding and blood clotting occurring at the same time, they are at increased risk of catastrophic bleeding if anti-coagulated and of life-threatening clots if not.

65. NICE guidance recommends dalteparin should be administered subcutaneously (injection under the skin) for the treatment of pulmonary embolism.

66. The balance of risks and benefits has to be carefully weighed. Doctors will choose to treat the more significant problem which in Mrs P’s case was the blood clot due to the effect it was having on her heart.

67. In this case, it was appropriate to choose dalteparin injections over an oral anti-coagulant because the effects of dalteparin wear off more quickly and is easier to reverse if bleeding becomes significant.

68. Actively managing the blood clot by starting anti-coagulation would also have provided symptomatic benefit to Mrs P by improving her heart and lung function as the clot dissolved.

69. We recognise that with hindsight it may seem unnecessary to have subjected Mrs P to daily painful injections considering she only survived for three weeks after being discharged from hospital.

70. We do however consider the dalteparin injections were necessary to treat the serious pulmonary embolism which was placing strain on Mrs P’s heart. Trust A prescribed dalteparin injections in accordance with NICE guidance.

Biopsy

71. Mr K told us Trust A carried out a biopsy unnecessarily. He said the family would never have encouraged Mrs P to have this biopsy had they known her prognosis was so short.

72. We reviewed this matter with the help of our oncologist adviser using Mrs P’s medical records.

73. British and European guidelines for the investigation of endometrial cancer recommend a physical examination including the abdomen and pelvis with direct visualisation of the cervix using a speculum. Endometrial biopsy either with pipelle or hysteroscopy should also be performed.

74. We consider the initial investigations carried out by Trust A were appropriate and carried out in a timely manner (within three weeks of presentation).

75. Trust A obtained consent from Mrs P to undertake the biopsy in the presence of her family, and it was explained the reason for the biopsy was to aid diagnosis and plan treatment.

76. Our oncologist adviser told us it was necessary to perform the biopsy to obtain a diagnosis as this would have provided valuable information on both the prognosis and possible treatment options.

77. We recognise Mrs P did not live very long after the biopsy and understandably her family will feel she was put through this procedure unnecessarily. Sadly, at the point the biopsy was carried out no one could have known how little time she had left.

78. We are satisfied Trust A performed a biopsy in accordance with relevant guidance for the appropriate reason of providing a diagnosis and treatment plan.

Trust B

Dalteparin injections

79. Mr K told us the community nurses refused to administer dalteparin injections to Mrs P, and he was expected to administer them himself.

80. We reviewed this matter with help from our nurse adviser using Mrs P’s medical records.

81. Community nursing services are commissioned by the local integrated commissioning board (ICB) and are funded to work to an agreed contract.

82. In its final response Trust B explained it was not commissioned to deliver long term injections outside of normal working hours, and it would have been outside its agreed contract to do so.

83. Trust B’s community nursing services are not commissioned to provide routine services after 4.30pm, only emergency calls.

84. Trust A deemed Mrs P ‘medically’ fit for discharge on 4 July, but she was not ‘physically’ fit having chosen to decline physiotherapy input and requesting to be discharged as ‘bedbound’.

85. Mrs P refused to be discharged to a care home as she was not happy with the reviews of the care home that had been selected. On 9 July, Mr K was worried Mrs P was not getting enough sleep on the ward and wanted her to be discharged home as soon as possible. Mr K said he could provide care for Mrs P but would need help from the community nurses.

86. Mrs P was being discharged with a six-weekly course of twice a day dalteparin injections.

87. Dalteparin injections do not have to be administered by a health care professional. Dalteparin injections can be self-administered. Trust A’s website provides advice to patients about how to self-administer dalteparin.

88. The nurse’s code states, ‘share with people, their families and their carers, as far as the law allows, the information they want or need to know about their health, care and ongoing treatment sensitively and in a way they can understand.’

89. The community nurses explained to Trust A they were able to administer the morning injections but could not commit to administering the evening injections as this was outside their normal working hours.

90. Discharge was planned for 11 July. It had still not been confirmed who would be responsible for administering the Dalteparin injections in the evening. Mr K agreed to administer the evening injection and signed a consent form for the ‘carer administration of Dalteparin’.

91. The form states a nurse will show the carer the procedure and supervise the carer administering the injection. The carer will not be expected to try it on their own until they feel confident, they are comfortable with the process.

92. A nurse provided training to Mr K, and he reported he was confident he could administer the injection that evening.

93. We understand Mr K accepted responsibility for administering Mrs P’s injections as he was keen for her to be cared for in her own home. We appreciate Mr K found it difficult to administer the injections to Mrs P as she found them to be painful and we recognise this was distressing for them both.

94. We are satisfied the course of action taken by Trust B to ensure Mrs P’s dalteparin injections could be safely administered in her home was appropriate and in accordance with the nurse’s code.

diagnosis and prognosis

95. Mr K told us the community nurses caring for Mrs P had no understanding of her diagnosis or prognosis.

96. We reviewed this matter with help from our nurse adviser using Mrs P’s medical records.

97. Trust B provided community nursing care to Mrs P from 12 July following her discharge from hospital on 11 July.

98. As we have seen previously in this report, Trust A were unable to obtain a biopsy to determine Mrs P’s diagnosis. Until a successful biopsy could be performed Mrs P’s diagnosis and prognosis remained uncertain. For this reason, the community nurses could not have known exactly how ill Mrs P was or what her prognosis might be.

99. NICE guidance for advanced planning for people approaching the end of their life outlines steps that can be taken to ensure the person is supported and comfortable and their wishes for end-of-life care taken into consideration.

100. The guidance states. ‘advanced care planning is a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline. An advanced care planning discussion might include:

• the individuals concerns and wishes • their important values or personal goals for care • their understanding about their illness and prognosis • their preferences and wishes for type of care and treatment that might be beneficial in the future and the availability of these

101. The ReSPECT form plays a crucial role in advanced care planning. ReSPECT is a document outlining a person’s emergency care and treatment preferences detailing what the person wants to happen in the event of an emergency. It is particularly relevant for people with complex health needs or those at risk of sudden deterioration.

102. A DNACPR order is another essential part of advanced care planning. DNACPR stands for ‘do not attempt cardiopulmonary resuscitation’. A DNACPR order is a form indicating CPR should not be attempted in the event of cardiac or respiratory arrest. The decision is based on the patient’s health status, preferences and discussions with healthcare professionals and family members.

103. Mrs P was bedbound and incontinent with carers attending to her four times a day to help with changing her incontinence pads and pressure care.

104. The community nurses were attending once a day to administer the dalteparin injection. The community nurses also arranged for Mrs P to have the appropriate equipment within her home (adjustable bed, air mattress and bed rails) to ensure her care could be delivered safely.

105. On 16 July Mr K expressed his concerns to a community nurse that they had called paramedics out to Mrs P twice since she had been home and both times, she had declined to go to hospital despite being diagnosed with a chest infection. The community nurse noted the GP was coming out to see Mrs P.

106. Mr K told the community nurse the family were very upset and feel Mrs P should be in hospital. The community nurse reassured Mr K they would provide support and referred Mrs P to the community matron to see if anything further could be done to keep her well.

107. The community nurse suggested a ReSPECT form be discussed to make Mrs P’s wishes clear. Mr K said he would mention it to the GP.

108. On 17 July a community nurse recorded Mrs P’s appetite was virtually non-existent and her mood was very low likely due to her being bedbound when she had been previously mobile and not having a definite diagnosis.

109. The community nurse noted there was no ReSPECT form for Mrs P and was unsure if this had been discussed with the GP. They felt it was not appropriate to discuss on this day as an MDT meeting was taking place that day and they did not yet know the outcome of the meeting.

110. On 25 July a community nurse attended to Mrs P and noted she had not been eating or drinking due to constant nausea. Mrs P discussed her wishes about resuscitation (DNACPR) and place of care with the community nurse and advised she would not want to go to hospital in the event of a cardiac arrest, but she would want to be resuscitated.

111. The community nurse contacted Mrs P’s GP to refer to discuss their concerns and request a medical review. The community nurse advised the GP the DNACPR needed to be rediscussed. The community nurse discussed with the GP that Mrs P should be referred to the local hospice for palliative care input.

112. The community nurses attended to Mrs P on 29 July. Mr K reported a palliative care nurse from the hospice had told Mrs P and her family that she only had a few weeks left to live and that her time was short. Mr K said this was upsetting as they had been told by Trust A the diagnosis was inconclusive and they were looking to repeat a biopsy under general anaesthetic.

113. Mr K was also concerned that the palliative care nurse had arranged anticipatory medications. The community nurse explained it did not mean Mrs P needed them now, but they were in place to avoid any delay should she need them.

114. On 31 July a community nurse noted Mrs P’s family had called an ambulance the previous evening as she had ‘taken a turn’ and ‘was not looking great’.

115. Mr K told the community nurse a palliative care nurse from the hospice had visited the day before and told them CPR would be unsuccessful. Mr K told the community nurse Mrs P had said she wanted to be resuscitated.

116. The community nurse was concerned Mr K may not have fully understood what DNACPR meant and explained the success rate in the community for a well person is low but given Mrs P’s medical conditions and deterioration the chance of survival would be even lower.

117. The community nurse told Mr K they agreed with the palliative care nurse’s clinical judgement that CPR would likely be futile and distressing.

118. On 1 August Mrs P had deteriorated significantly. A community nurse had a joint visit with a palliative care nurse to give clarity to Mrs P and Mr K on the plan of care. The community nurse noted Mrs P’s wishes not to go to hospital and to be made comfortable at home. The community nurse noted Mr K was reluctant to accept Mrs P was deteriorating.

119. We saw evidence the community nurses referred Mrs P to the GP, community matron and the palliative care team as they were concerned about her deterioration.

120. The community nurses had several conversations with Mrs P and her family about her wishes for her end-of-life care to facilitate advanced care planning.

121. The community nurses would not have been able to provide any further information about what Mrs P’s prognosis might be but provisions to ensure Mrs P was comfortable at the end of her life were put in place which is in accordance with national guidance.

122. We have seen evidence, the community nurses understood Mrs P’s care needs and that she was clinically declining. We are satisfied Trust B provided appropriate care and support to Mrs P in accordance with NICE guidance.

Pain and dehydration

123. Mr K says the community nurses did not provide adequate care to minimise Mrs P’s pain and dehydration.

124. We reviewed this matter with help from our nurse adviser using Mrs P’s medical records.

125. The nurse’s code states. ‘make sure you deliver the fundamentals of care effectively.’

126. The fundamentals of care involve providing safe, compassionate person-centred care that integrates physical, psychosocial and relational needs. Physical needs include nutrition, hydration, mobility, hygiene, sleep and pain management.

127. Mrs P was prescribed oral analgesia (pain relief), which she was taking mainly for back pain.

128. The community nurses and the community matron provided advice on pain management to Mrs P during their visits. The community nurses also referred Mrs P to the palliative care team for support and Mrs P’s GP reviewed her regularly.

129. We saw nothing to suggest Mrs P was in uncontrolled pain during the time she was receiving care from the community nurses.

130. Anticipatory medications for end-of-life symptoms such as pain were prescribed from 29 July. These are referred to as ‘just in case’ (JIC) medications.

131. JIC medication was discussed with Mr K who was concerned about why they had been prescribed. The community nurses explained they were to manage any symptoms ‘if needed’ and it was ‘better to have them in the house if Mrs P was suffering’.

132. Anticipatory prescribing and JIC boxes are an important part of end-of-life care, as outlined by the British Medical Association and are recommended within national guidance.

133. ‘Medicines are sometimes prescribed in advance for symptoms that might happen in the future. These medicines are often called 'just in case' medicines and may be provided in a specially marked container called a 'just in case' box. Providing medicines in advance means that there is no delay in getting medicines that might be needed quickly to help with symptoms. This may be particularly important for people who are not in hospital’.

134. We are satisfied the community nurses gave appropriate advice and support to Mrs P and her family to help minimise her pain in accordance with the nurse’s code.

135. Mr K was also concerned the community nurses did not provide adequate care to minimise Mrs P’s dehydration.

136. On 16 July Mr K told a community nurse he was worried about Mrs P and felt she needed to be in hospital, but she was refusing to go. The community nurse referred Mrs P to the community matron for additional support.

137. The community nurses noted on 17 July Mrs P’s ‘appetite was virtually non-existent, she drinks but has no real wish to keep her fluids up’. Mrs P had been referred to the GP who was issuing build up drinks for her.

138. On 19 July Mr K discussed his concerns about Mrs P’s diet with a community nurse. The community nurse advised Mr K not to worry about meals but to try her with light snacks and flat lemonade as Mrs P had reported water felt too heavy to drink. The community nurse noted Mrs P was having Ensure drinks (nutritional supplements for people who cannot meet their dietary needs through regular food) and advised trying small amounts initially.

139. The community matron discussed Mrs P’s fluid intake with Mr K on 22 July. They noted she was having sips of Ensure drinks and water. Mr K reported Mrs P was drinking more. They discussed keeping a fluid chart to monitor intake and advised the carers could help with this.

140. On 25 July Mrs P reported she was not tolerating the Ensure drinks due to feeling nauseous all the time. Mrs P said the anti-sickness tablets were not working. When the community nurse checked the anti-sickness medication, they could see Mrs P had not been taking them regularly and advised her to take them three times a day for a few days to see if that helped.

141. Later the same day Mrs P’s family called paramedics. The paramedics referred Mrs P to the urgent community response (UCR) team. The paramedics told the UCR team Mrs P had not been eating for a couple of days due to feeling nauseous and that she was clinically dehydrated.

142. The UCR team advised they had limited capacity to see Mrs P. The paramedic advised they had contacted Mrs P’s GP, but the GP could only offer a home visit early the next week. The UCR team suggested contacting the out of hours GP for an admission to a community ward if Mrs P would consent to that.

143. Mrs P declined to be taken to hospital. The paramedic advised Mrs P she was at high risk of death if she refused to go to hospital. The paramedic offered to take her to an alternative hospital and she declined this also. The UCR team noted Mrs P had capacity to make this decision.

144. The following day Mrs P told the community nurses she had called the paramedics and had refused to be taken to hospital. Mrs P told the community nurse she was feeling fine now.

145. The community nurse contacted Mrs P’s GP and voiced her concerns following this visit. The GP was aware Mrs P was not tolerating Ensure drinks due to nausea and was dehydrated but refusing to go to hospital.

146. The community nurse requested a medical review from the GP and to rediscuss the ReSPECT and DNACPR forms.

147. On 30 July Mrs P told a community nurse she had been told by ‘lots of doctors’ that she needed to drink more fluids as she was ‘deemed to dehydrate’. Mrs P said she was taking note of the advice and drank a full cup of water during the community nurses’ visit. The community nurse noted Mrs P had two full cups next to her on the table also.

148. On 31 July Mr K asked the community nurses if Mrs P could have IV fluids in the community. He was concerned her poor fluid intake would affect the antibiotics she had taken for a chest infection, saying her fluid intake had reduced in the last few days.

149. Our nurse adviser told us providing artificial fluids would be a medical or specialist nurse decision to make.

150. Research by the British Medical Journal concludes actively providing dying patients with artificial fluid may not be beneficial.

151. ‘It is rarely appropriate to start artificial nutrition and hydration in the last few days of life. Patients and the people close to them often ask whether they can have artificial hydration and nutrition. For some conditions, this is an option. But for other conditions, and when patients are in their last days, there's no evidence that it helps them to live longer or improves their quality of life.

152. We have seen evidence Mrs P’s fluid intake was variable, she was aware she tended to become dehydrated and was aware the advice from doctors was to drink more. The community nurses gave advice on how to increase her intake and referred her to the GP for medical review when it became apparent, she may be struggling to eat and drink due to nausea.

153. We are satisfied the community nurses gave appropriate advice and support to Mrs P and her family to help minimise her dehydration in accordance with the nurse’s code.

Summary

154. We hope our report goes someway to reassuring Mr K and his family, the care and treatment Mrs P received from both Trust’s was appropriate. We do not underestimate the pain and distress they experienced during this difficult time. Mrs P was clearly loved very much and the devotion shown by her family is to be admired.

1. We have carefully considered Mr K’s complaint about the Trust’s. Having done so, we have seen no indication anything went seriously wrong in Mrs P’s care and treatment by either Trust A or Trust B.

2. We are very sorry to hear about the sad loss of Mrs P. We recognise Mr K and his family have been through a difficult time, made even more challenging by having to raise concerns about the care Mrs P received.

3. We saw no indications anything went wrong in the way Trust A communicated Mrs P’s diagnosis or that the procedures carried out were unnecessary.

4. We saw Trust B provided appropriate care to Mrs P in relation to pain and hydration and think they acted in accordance with guidance in response to Mrs P’s needs. We saw no evidence Trust B refused to administer injections.

5. We have therefore decided we do not need to take any further action on Mr K’s complaint. We understand our decision may be disappointing to Mr K, and we are sorry if this causes any additional distress.