Discharge
24. Mrs E complains the Trust did not listen to her request to delay her mother’s discharge on 26 July 2018. Mrs E says at the time of Mrs P’s discharge she had flu. As she was her mother’s main carer, she was concerned that in being unwell she would not be able to provide the care her mother needed. She complains the Trust did not arrange appropriate district nursing care.
25. In its response dated 8 March 2019, the Trust says it cannot see that a discharge meeting was required. Mrs P was known to the complex discharge team and its notes show that an occupational therapist had confirmed Mrs P’s care would restart upon her discharge.
26. The Trust says it had also sent Mrs P’s total parenteral nutrition (TPN), which is the feeding of nutritional products to a person intravenously, bypassing the usual process of eating and digestion, to the team at Hospital A for this to be continued following her discharge. It says Mrs P was fit for discharge and the package of care would be restarted on her discharge.
27. It apologises for not arranging a discharge meeting which would have given Mrs E the opportunity to discuss her concerns. It also apologises that it discharged Mrs P at a time when Mrs E was unwell.
28. The Trust says Mrs P was under the care of the Intestinal Failure team at Hospital A. The Trust said it had made Hospital A aware of Mrs P’s discharge and they should have provided follow up care. The Trust apologises for not communicating this with Mrs E clearly.
29. The Trust accepts it did not arrange any discussions or provide any training regarding the care and management of stoma bags. The Trust apologises for this and has informed its nursing team that the management of stomas should be discussed with patients and their carers going forwards.
30. We asked our nursing adviser about the discharge planning for Mrs P.
31. Discharge or care transfer is an essential part of care management in any setting. It ensures that health and social care systems are proactive in supporting individuals and their families and carers to either return home or transfer to another setting.
32. The Department of Health: Ready to Go? Guidance says, ‘discharge should not be an isolated event but rather an ongoing process that starts from admission.’
33. It further explains: ‘the need for timely discharge and care transfer requires clinicians and others to plan, communicate, negotiate and ensure a smooth transition for individuals and their families. Patients and carers should be involved throughout the discharge planning process so that they can make informed decisions and choices that deliver a personalised care pathway and maximise their independence. A discharge checklist should be used 24–48 hours prior to transfer. It is essential that the discharge or transfer of care plan is satisfactory before the actual discharge takes place. This involves checking that the necessary actions have taken place 24–48 hours prior to the discharge date, including ensuring that the specific timing and organisation of services will provide continuity of care. This requires effective liaison between the patient and carer and their family, members of the core Multi-Disciplinary Team, multi-agency services and community providers as appropriate.’
34. The records show the Trust used a multidisciplinary approach to discharge planning with evidence of engagement and involvement of Mrs P and Mrs E throughout the process. There was also liaison with Hospital A to ensure Mrs P’s feeds were the correct quantity, and that they started again on her discharge. There is some input from the occupational therapist. The records also show Mrs P was back to her baseline with regards to mobility and she was walking with her Zimmer frame, as per her physiotherapy notes.
35. We do not have a copy of a discharge checklist. After requesting this missing document from the Trust, the Trust has explained that it is also unable to locate this document. It says during this time it was not using booklets, but loose leaf paper records, and it has not been able to identify a completed discharge checklist dated 26 July 2018.
36. We have seen the Trust discussed the existing care package with its occupational therapist and it was restarted on discharge. Our nursing adviser says there were appropriate referrals made to social services, community rehabilitation, and the home parenteral nutrition teams.
37. Prior to Mrs P’s admission, her records show she had district nursing input once a fortnight for a review of her stoma. There is one documented episode on the records that Mrs E had changed her mother’s stoma bag on 24 July 2018. The records do not document a referral was made to district nurses following her discharge on 26 July 2018.
38. Our nursing adviser says district nursing input should have been re-established and a referral made to ensure on-going support and education was provided regarding Mrs P’s stoma management.
39. We understand it would be distressing for a patient to be discharged without the care plan they require, and it will leave a carer feeling very anxious and uncertain. We appreciate Mrs E’s anxiety would have been compounded because of her concerns that she would not be able to care for her mother appropriately, when she was suffering from flu herself.
40. Mrs P was declared medically fit for discharge and whilst we understand Mrs E was concerned about how she would cope as she had flu, this would not be a key reason to delay a patient’s discharge.
41. We have seen that as part of the discharge occupational therapy, TNP, and contact with the Intestinal Failure team was arranged. This is in line with the Ready to Go guidance, but it did not go far enough. The Trust has not been able to provide a discharge checklist and so we do not know if one was completed. It is not possible to say with certainty if one was completed, and if it was completed correctly.
42. Throughout Mrs P’s admission there is nothing on the records to indicate that Mrs E was ever involved in the management of her mother’s stoma. There is no indication that she was provided with any education or support. While we note Mrs E did change her mother’s stoma on 24 July 2018, there is no evidence on the records that she was provided with any education. There is no evidence to show if a conversation took place to clarify if she was happy to continue doing this following her mother’s discharge, or if district nursing input would be required. Overall, the discharge was not in line with guidance and is a failing. We consider the impact of this failing further below in this report.
Trust did not listen to Mrs E
43. Mrs E complains the Trust did not consider that she was her mother’s carer and did not listen to her or involve her in her mother’s treatment plan.
44. In its response, the Trust apologises that Mrs E felt she was not listened to. It says Mrs E’s views and opinions in her capacity as her mother’s main carer were of significant value, and that it recognised this in a multi-disciplinary team (MDT).
45. Paragraph 33 of the GMC Good Medical Practice states ‘you must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.’
46. The medical records document an understanding of family concerns in a Best Interest meeting on 28 August 2018. The records also show the Trust met with Mrs E, who asked staff to find ways to ‘keep Mrs P at home’ because ‘frequent admissions are affecting her mum’s mental health’. The records show the Trust listened and documented Mrs E’s wishes as her mother’s carer, and suggestions were made in accordance with them.
47. On 16 September 2018, we can see the renal consultant suggested discussing with the family the possibility of dialysis. On 18 September 2018, Mrs P’s deterioration and move to palliation was discussed with the family.
48. We sought advice from our consultant adviser who says there is evidence the family were appropriately involved in the care decisions of Mrs P.
49. Our consultant adviser explains carers and relatives are an invaluable source of information, however a doctor’s duty is to the patient and their wishes, not the carer. It is not unusual for doctors and carers to disagree over a particular recommended treatment of course of action.
50. In such circumstances, it is good practice for the doctors to take into consideration the views of the carer, however there is no legal or professional obligation for them to carry out the carer’s wishes. The doctors must act in what they feel is the best interest of their patient, and the wishes of a competent patient would outweigh those of their carer.
51. We appreciate Mrs E was concerned that her views, as her mother’s main carer, were not considered by the Trust. This was distressing for her as she felt she was not being listened to. There are documented discussions with Mrs E and the family at key points in her mother’s admission to the Trust. The Trust have acted in line with GMC guidance in that it listened to Mrs E’s concerns and included the family in discussions about Mrs P’s prognosis. From the evidence we have seen, the family were appropriately involved in Mrs P’s care.
Nursing complaints
52. Mrs E complains that the nursing care provided to her mother during her admission at the Trust was not appropriate. She says there was a lack of hygiene and personal care, nursing staff did not administer her mother’s medication correctly, and failed to frequently monitor her condition. Mrs E says the nursing team did not provide appropriate palliative care.
53. Mrs E describes three incidents relating to poor nursing care, including when her mother was suffering confusion. She says staff left Mrs P’s breast exposed which did not maintain her dignity. When a nurse was inserting a cannula in her mother’s arm, this caused excessive bleeding and Mrs E was left to change her bed sheets. Finally, when Mrs P was in pain on her final night, the family requested pain relief and they had to chase nursing staff after thirty minutes for the medication.
54. In its response, the Trust apologises for these nursing incidents. It says it has discussed these with its nursing team to ensure service improvements.
55. While the Trust says there are no records of excessive bleeding after inserting a cannula into Mrs P’s arm, it admits Mrs E had to change her mother’s clothes and change her bedding after this incident. It said this is not the standard of care it expects from its nursing team. It apologised for this and says it has shared this incident formally in a team meeting for reflection and to ensure service improvements.
56. We asked our nursing adviser about the care Mrs P received.
57. Maintaining personal hygiene is a fundamental aspect of nursing care. The NMC Code states:
‘1.2 make sure you deliver the fundamentals of care effectively...
1.4 make sure that any treatment, assistance or care for which you are responsible is delivered without undue delay. The fundamentals of care include, but are not limited to, nutrition, hydration, bladder and bowel care, physical handling and making sure that those receiving care are kept in clean and hygienic conditions.’
58. To comply with the NMC Code, there should be evidence of assessment, care planning (identifying what support was needed), and daily evaluations or care rounding charts to evidence that the care plan was being followed.
59. The NMC Code of Practice states ‘3.2 recognise and respond compassionately to the needs of those who are in the last few days and hours of life.’
60. Frequency of monitoring is determined by a calculated National Early Warning Score (NEWS). NEWS is a tool developed by the Royal College of Physicians which improves the detection and response to clinical deterioration in adult patients and is a key element of patient safety and improving patient outcomes. The minimum frequency of observation should be every 12 hours as set out by the Royal College of Physicians guidance. This guidance explains when clinical teams decide that the routine recording of data for the NEWS is not appropriate because patients are on an end-of-life care pathway such decisions should be discussed with the patient (or their family/carer as appropriate) and recorded in the patient’s notes. In addition to physiological observation and monitoring, a patient will also be monitored when nursing care interventions, for example, meeting personal hygiene needs and repositioning are provided.
61. The records show evidence of assessment and care planning. We can see daily entries on the records indicating that Mrs P’s personal care needs were attended to daily, except where it is noted that Mrs P declined this support. The repositioning charts show hygiene checks of cleanliness were completed every two to four hours, when she was in palliative care. We can also see completed nursing evaluations, intentional rounding charts, urostomy (a surgical procedure that creates a stoma for the urinary system to pass urine), ileostomy (a procedure where the small bowel is diverted through an opening in the lower abdomen and a stoma bag is attached to collect urine and faeces), and stoma care (this involves the daily management of a stoma bag including emptying and changing the bag itself and cleaning the surrounding area).
62. The records document that as Mrs P was approaching end of her life, the plan was for comfort and symptom management only. The records show Mrs P was seen by a palliative care nurse and end of life medication was administered via a syringe driver. The repositioning charts show Mrs P was regularly repositioned to make her comfortable. The records show documented discussions with Mrs E and her husband.
63. With regards to Mrs E’s complaint about her mother’s breast left exposed, we cannot find anything documented in the medical records about this incident. Similarly, there is no documented reference to the site of the cannula being removed, causing excessive bleeding. We can see there are completed visual infusion phlebitis charts (VIP charts), which are a common method of assessing the insertion site for early signs of line related local infection, that document when cannulas have been inserted and removed. There is also nothing on the medical records documenting the delay in administering pain relief when Mrs P was in palliative care.
64. Based on the evidence, in the form of nursing evaluations, intentional rounding charts, repositioning charts, urostomy, ileostomy and stoma care charts, the Trust provided appropriate assessment and care planning to Mrs P.
65. With regards to palliative care, our nursing adviser explains the focus of end of life care is to ensure that the patient remains comfortable. The monitoring shifts from monitoring for acute deterioration (measuring physiological observations using NEWS, to monitoring for signs of end of life). Symptoms such as pain, ensuring regularly changing position to maintain skin integrity, and addressing hygiene are key. This is in line with NICE QS13 End of life care for adults.
66. The Trust acted in accordance with guidance as there was a plan to keep Mrs P comfortable. It minimised interventions that may have been distressing to Mrs P. It is evident Mrs E was fully involved in discussions about her mother’s end of life care, including discontinuation of observations. The entries on intentional rounding and repositioning charts indicate that Mrs P was reviewed at least every two to four hours, which is line with guidance.
67. We understand it was distressing for Mrs P and compounded Mrs E’s anxiety to witness the care she describes, at what was already a difficult time. There is evidence that Mrs P’s hygiene and personal care needs were met, and she received appropriate palliative care, which is in line with national standards and guidance.
68. There is nothing in the records about the three separate incidents Mrs E has described. We understand these three distressing incidents would have compromised Mrs P’s privacy, dignity, and caused her additional pain and distress. Although the specific incidents are not documented in the records, given the Trust has acknowledged the changing of clothes and bedsheets by Mrs E, it is more likely than not that, when the cannula was being removed it caused bleeding.
69. There is no evidence to dispute Mrs E’s recollection of her mother’s breast being exposed. We can understand how upsetting this would have been for her. While nurses aim to maintain dignity of patients, there can be incidents in hospital settings where this may happen accidently. We cannot say this care falls so far short that it would be a failing.
70. There is also no evidence that pain relief was not provided appropriately. The records show that palliative care was provided in line with guidance.
71. We can see the Trust has apologised for these nursing incidents. We consider this is appropriate action.
Delay in diagnosing Mrs P’s kidney infection
72. Mrs E complains the Trust did not diagnose her mother’s kidney infection in a timely manner. She says this meant there was a delay in her treatment, and she developed sepsis.
73. In its response, the Trust explains the medical records documented on 15 September 2018, show a discussion took place with the urology team to investigate if Mrs P’s nephrostomies were blocked. A nephrostomy is a thin plastic tube which is used to create an artificial opening between the kidney and the skin, to drain urine from the kidneys. On 16 September 2018, Mrs P underwent an urgent ultrasound scan, and an attempt was made to flush the nephrostomies, without success. The Trust explains the ultrasound scan showed an obstruction of the nephrostomies which led to a procedure on 17 September 2018, where it replaced the nephrostomies.
74. The Trust says during this procedure it found the presence of debris in the kidneys and the samples of pus and blood clots were sent for analysis. It says Mrs P was diagnosed with multifactorial acute kidney injury and its likely to have been caused by obstruction and sepsis.
75. In its response, the Trust provides a list of the antibiotic therapies Mrs P received during her admission at the Trust. The Trust apologises that it did not communicate this with Mrs E thoroughly at the time.
76. GMC Good Medical Practice, Apply knowledge and Experience to Practice states:
’15. You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must: a. adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient b. promptly provide or arrange suitable advice, investigations or treatment where necessary c. refer a patient to another practitioner when this serves the patient’s needs.
16. In providing clinical care you must: a. prescribe drugs or treatment, including repeat prescriptions, only when you have adequate knowledge of the patient’s health and are satisfied that the drugs or treatment serve the patient’s needs b. provide effective treatments based on the best available evidence c. take all possible steps to alleviate pain and distress whether or not a cure may be possible d. consult colleagues where appropriate e. respect the patient’s right to seek a second opinion f. check that the care or treatment you provide for each patient is compatible with any other treatments the patient is receiving, including (where possible) self-prescribed over-the-counter medications.’
77. The medical records show on 30 August 2018, during the consultant ward round, Mrs P was deemed to be medically fit for discharge. The following day, she was noted to have developed a temperature and other signs of an infection. The records document Mrs P refused further investigations. The Trust started treatment for a hospital acquired pneumonia, having diagnosed SIRS (systemic inflammatory response syndrome). The records show Mrs P was treated with different types of antibiotics.
78. Our consultant adviser says on 30 August 2018, Mrs P did not display signs of infection apart from a raised, but stable, CRP. C-reactive protein is a protein found in blood plasma and when it is raised it is a sign of inflammation, which can be caused by a variety of conditions including infections. In the absence of a temperature, clinical signs, or a raised white cell count, this would not ordinarily prompt an experienced physician to take further action.
79. Our consultant adviser says the initial treatment of oral co-amoxiclav (an antibiotic) was unlikely to be effective in a patient with short gut syndrome. This is because the antibiotic would not be absorbed. However, the Trust commenced treatment of other types of antibiotics shortly after including, Tazocin, and Teicoplanin which were commenced the following day. These are known as broad spectrum antibiotics and are given intravenously. Providing antibiotics was in line with GMC good practice as it was an appropriate treatment based on the evidence of an infection.
80. There was a delay in diagnosing the kidney infection because a nephrostomy urine dip was not taken until 14 September 2018, and then sent for analysis. Our consultant adviser explains there were a number of possible infection sources which the Trust were considering during the period 31 August 2018 to 14 September 2018. This included the Hickman Line site, which was noted to be mildly red (a possible sign of infection), and Mrs P’s chest radiograph had signs consistent with pneumonia. The investigation of different sources of infection was in line with GMC good practice, as the Trust was assessing symptoms.
81. Mrs P was treated with a broad spectrum antibiotic whilst these investigations were taking place to identify the site of infection. These antibiotics would have covered most infections in the kidneys. Our consultant adviser says it is unlikely that this infection would have been cleared without changing the nephrostomy tubes. This is because the bacteria on the plastic would act as a source of ongoing infection when the antibiotics were stopped.
82. There was involvement of a consultant microbiologist, and their advice was sought throughout this period. Our consultant adviser says they cannot see convincing clinical evidence that the source of the infection was in the kidney until 14 September, when the urine dip test and subsequent microbiology report confirmed it.
83. Mrs P developed clinical signs of an infection on 31 August 2018, and over the next few days a treatment plan of various different antibiotics commenced. While the first type of antibiotic was unsuitable for Mrs P, we can see it was quickly changed to a broad spectrum one to cover most infections. The Trust were investigating the source of infection and there were various possible sites.
84. While there is delay in identifying the source of infection, the standard of care was appropriate because the Trust were eliminating possible sources of infection, and were treating Mrs P with a broad spectrum antibiotic. This antibiotic would have covered most infections in the kidneys, and it would not have had an adverse effect Mrs P’s prognosis.
85. We understand Mrs E expressed her concerns of a kidney infection to the Trust. The delay in diagnosing and commencing targeted treatment of the precise infection caused distress and anxiety to Mrs P and her family.
86. The urine test was not taken until 14 September 2018, and we understand this two week period would have caused uncertainty and worry to Mrs P and her family.
87. While there was a delay in undertaking a urine dip test and arranging microbiology reports, the care did not fall below a reasonable level to amount to a failing. There were multiple sites where the infection was possible, and we can see the Trust was investigating which site was the main source of infection. During this elimination process, it was also treating Mrs P with a broad spectrum antibiotic. We consider that actions taken were in line with GMC good medical practice.
Sepsis via the Hickman Line
88. Mrs E feels her mother contracted sepsis via the Hickman line (a small silicone tube) because of poor nursing practice and hygiene. Mrs E says she often saw the end of the Hickman line uncovered and believes it was exposed to dirt and bacteria.
89. The Trust says its nursing and medical team checked Mrs P’s Hickman line when her presentation deteriorated on 31 August 2018. It says blood cultures were taken to look for signs of infection and it notes the exit site was red at this time but there were no other obvious signs of infection. It says when the infection was identified the Hickman line was removed on 7 September 2018.
90. Hickman lines do present the risk of infection and to reduce the risk they require maintenance. The national guidance (NHS Improvement 2017, Saving Lives. High impact Interventions) for the on-going care of a Hickman Line says the following actions should be taken:
‘1. Hand hygiene • Hands are decontaminated immediately before and after each episode of patient contact using the correct hand hygiene technique.
2. Personal Protective Equipment • Wear personal protective equipment only when indicated and in accordance with local policy.
3. Continuing Clinical indication and Vessel Health • Indication of ongoing need and vessel health should be documented at least once a shift.
• The insertion site should be visually inspected at a minimum during each shift and, a visual infusion phlebitis (VIP) score may be recorded on central vascular access devices, in line with local policy • Central venous access devices should not be routinely replaced
4. Central Line Device Access • Access ports and catheter hubs are decontaminated with 2% chlorhexidine gluconate in 70% isopropyl alcohol solution and allowed to air dry. (If the patient has a sensitivity povidone-iodine in 70% alcohol application is used).
5. Administration set replacement • Administration sets for continuous infusions are changed, at a minimum, every 96 hours.
• Administration sets in continuous use for blood and blood components should be changed every 12 hours, or when transfusion is complete. Platelets must be transfused through new giving sets.
• TPN administration sets should be changed when the TPN has finished or 24 hours after commencement of the infusion
6. Dressing • Sterile, transparent dressing should be changed, at a minimum, every 7 days or sooner if the integrity of the dressing is compromised.
• Cleaning of the access site should be carried out with 2% chlorhexidine gluconate in 70% isopropyl alcohol solution and allowed to air dry. (If the patient has a sensitivity povidone-iodine in 70% alcohol application is used) at each dressing change.
• Dressings must be changed using a recognised aseptic technique.’
91. The medical records show daily Hickman line and TPN records were completed. However, we cannot find a complete record for 22 August as the document does not show that the TPN set had been changed after administration.
92. Our nursing adviser said from the Hickman line and TPN records they have seen, they have been completed in line with NHS Improvement, Saving Lives. High impact Interventions guidance.
93. The records show the infection of the Hickman line was identified on 31 August 2018. The line was removed on 7 September. There is a chart indicating that bionectors (needle free access devices) were changed and these changes were in accordance with guidance.
94. We understand Mrs E feels her mother contracted sepsis via the Hickman line, and saw the lines uncovered. This feeling has left her clearly dissatisfied and distressed with her mother’s treatment, especially because the site of the Hickman line later became red, demonstrating signs of an infection.
95. Hickman Lines present a natural risk of infection. While there is an incomplete record for 22 August 2018, we cannot identify any failings in the maintenance of the Hickman line. In general, Mrs P’s Hickman line and TPN records were documented correctly and in line with NHS Improvement, Saving Lives. High impact Interventions national guidance. There is no evidence to suggest there was a lack of hygiene or lack of nursing practice.
Fluid Balance Charts
96. Mrs E complains that 12 out of 46 days of fluid balance charts were recorded inaccurately and this was detrimental to her mother receiving the correct treatment.
97. In its response, the Trust upholds this complaint. It admits there were 12 examples out of 46 charts where the records were incorrectly documented, and that there were some missing entries. The Trust apologised for this. The Trust says it has arranged for its senior nurses to undertake an improving quality project. This will include staff training and education to improve the understanding of the importance of completing these forms correctly, and the implications it can have on a patient. It also says it has anonymised Mrs P’s charts and they will be used in training so staff can reflect on the errors that were made here.
98. When a person is admitted to hospital, an episode of illness may result in a requirement for an increase or reduction of fluid intake. The NMC Code of conduct says it is important, in such circumstances for nursing staff to ‘accurately record fluid intake and output and ensure that any plan of care, concerning fluid intake and output is followed.’
99. The Royal Marsden Manual says: ‘To monitor fluid balance, nursing staff must maintain accurate records of intravenous fluids, oral fluids, fluid from drainage sites (wounds and NG tubes), vomitus and urine. To promote adequate hydration and safe and effective care, nurses should always report any significant abnormalities reported in the patient’s fluid records.’
100. There is nothing in the nursing records to account for the discrepancies identified by Mrs E. We can see on top of each fluid balance charts it states ’24 hour fluid balance total must be reviewed by a Registered Nurse/Doctor.’
101. Our nursing adviser notes the fluid charts, in general, were completed in line with the Royal Marsden Manual guidance and the NMC Code of Practice. Where discrepancies have been noted, the main omission was the totalling of the input and output and the checking of the fluid balance chart by a registered nurse or a doctor.
102. For administration of the TPN, the prescription was for 2500 mls to be administered over 12 hours. On 11th August 2018, 2727 mls was administered. On 13th August 2018, 2043 mls was administered. There is nothing documented in the nursing evaluation records to account for these discrepancies.
103. Our nursing adviser says Mrs P was not on fluid restriction and it is clear from the charts that she was not over or under hydrated. There was therefore no impact on her health or prognosis.
104. The fluid balance charts should have been checked by a registered nurse or doctor, as per the Trust’s local policy and in line with national guidance. Had this happened on each occasion, the total could then have been checked and amended if there were any inaccuracies.
105. Mrs E correctly identified that her mother’s fluid charts were not correctly completed, and the Trust admitted this occurred on 12 occasions. We appreciate this was deeply upsetting for Mrs E and left her without the confidence that the Trust were monitoring her mother appropriately.
106. Mrs P was not on a restricted fluid intake and her charts did not demonstrate signs of her being dehydrated or over hydrated. While this complaint was distressing for Mrs E, it did not adversely impact her mother’s health or presenting condition at the Trust.
107. We can see the Trust has admitted its mistake, apologised, and has implemented a comprehensive training plan to educate its nursing staff of the importance of completing these forms correctly. This is appropriate action. We will consider the impact further at the end of our report.
Discussions regarding End of Life
108. Mrs E complains the Trust communicated with her mother about End of Life forms. She says it did this despite her records stating that it was not in the patient’s best interests to discuss these documents.
109. In its response, the Trust apologises for the upset it caused. It says that its staff promote patient involvement in their care and independence. This includes having difficult conversations around end of life. It acknowledges that some patients do not wish to be included in these discussions, but it must be guided by patients. It says following this incident a prompt was added to team handover process that these conversations should not take place in front of Mrs P.
110. GMC guidance paragraph 132, states: ‘as with other treatments, decisions about whether CPR should be attempted must be based on the circumstances and wishes of the individual patient. This may involve discussions with the patient or with those close to them, or both, as well as members of the healthcare team. You must approach discussions sensitively and bear in mind that some patients, or those close to them, may have concerns that decisions not to attempt CPR might be influenced by poorly informed or unfounded assumptions about the impact of disability or advanced age on the patient’s quality of life.’
111. The palliative care notes dated 19 September 2018, states’ family fully aware of current situation, Respect/DNAR in place…unable to obtain verbal consent due to clinical condition.’ We cannot see from the Respect form dated 16 September 2018, that the decision on end of life was discussed with Mrs P.
112. Our consultant adviser says guidance suggests that unless it will cause the patient undue distress, their treatment must always be discussed with them to ascertain their views and come to a common understanding of what would be done. In this context ‘undue distress’ must mean significantly more than ‘being upsetting’.
113. Giving news of this nature is always likely to be upsetting however this does not negate the need for it to be discussed with the person it concerns. Families often feel that they wish to spare their relatives the pain and distress of such a conversation. It is considered in law and medical guidance quite wrong for doctors to collude with families in failing to discuss such matters with the person they concern.
114. We appreciate being informed when you are approaching the end of your life is devastating and as her mother’s carer, Mrs E knew this was something which would upset her mother deeply. Mrs E knew it was a conversation her mother did not wish to participate in.
115. National guidance is clear that patients must be involved in all aspects of their care and treatment and their wishes must be discussed. The Trust acted in line with guidance in trying to gauge Mrs P’s views on her declining prognosis. From the records it is not clear if Mrs P was given the opportunity to understand she was approaching the end of her life, and neither was she able to participate in the decision making around it.
116. The Trust acted in line with national guidance, and it was appropriate to try and discuss end of life care with Mrs P. We can see the Trust listened to Mrs E’s concerns about the upset it caused her mother and it noted at the time that any conversations of this nature would not take place in front of Mrs P going forwards.
117. We cannot identify a failing because it was appropriate for the Trust to act in line with guidance to understand Mrs P’s wishes. Once it was established that Mrs P did not want to engage in these discussions, the Trust only communicated with the family.
Impact
118. We have identified two failings in the Trust’s treatment of Mrs P, these include:
· the failure to arrange district nursing care for the 13 days Mrs P was discharged back to her home, · the fluid balance charts that were incorrectly completed on 12 separate occasions
119. Mrs E says the lack of a district nursing plan caused her distress and anxiety as she, and her mother, were left unsupported. Having no district nurse to change the stoma bag meant that Mrs E had to do it. Mrs E describes herself as her mother’s carer and from the records she was able to change the stoma bags. The Trust should, however, have made it clear that this was its expectation, and if it was not, it should have requested the appropriate district nursing care at home to enable it to be done.
120. We understand Mrs E was distressed by the lack of district nursing support for her mother during this time. Being left without support and having the sole responsibility for the management of her mother’s stoma would likely have caused uncertainty and added to Mrs E’s anxiety and worry for her mother’s health. We can link the distress she experienced to the failing we have found.
121. We can see the Trust, in line with our Good Complaints Handling Principles, has been open and accountable in acknowledging it did not discuss or provide any training or education to Mrs E about the management of stoma bags, and has said it will put things right going forwards by discussing this with its nursing team. It has also apologised.
122. Mrs E has said that finding that fluid charts were not being completed correctly caused her distress and her to question whether her mother was receiving the correct care. This was a difficult time for Mrs E. Her mother was unwell, and she had been her main carer. We can link the distress to the failing the charts were not correct. This would have compounded her worry at was already a difficult time as her mother’s health was deteriorating.
123. The failings we have identified would not have caused Mrs P’s death, as overall we have found care in other areas to be appropriate. We understand that Mrs E says the incidents impacted on Mrs P’s mental health, and her own physical health. The failings we have identified caused Mrs E distress at what was already a challenging time. We acknowledge this was stressful for Mrs E, however, we cannot say the failings in isolation had an ongoing impact on her health. The loss of a parent in any circumstances is difficult and these incidents would have compounded her feelings at an already difficult time.
124. The Trust has already acknowledged the failure to arrange district nursing care and the discrepancies found in the fluid balance charts. The Trust has admitted its mistake, apologised, and put in service improvements. This is in line with our Principles of Good Complaints Handling. The Trust has been open and accountable with regards to these failings. However, it has not done enough to remedy Mrs E’s claimed injustice and we make a recommendation below.