The Hospice
Discharge
21. Mrs E and Mrs S raise concerns regarding their mother’s discharge from the Hospice. The family say they do not understand why their mother was discharged during the summer of 2018.
22. In its response, dated 26 July 2019, the Hospice explains there were no specialist palliative care needs identified for Mrs N. On further discussion with members of the multidisciplinary team, it felt the right decision was to discharge her from its services.
23. We can see Mrs N was diagnosed with end stage left ventricular systolic dysfunction, a common and serious complication of myocardial infarction (MI) that leads to greatly increased risks of heart failure and sudden death.
24. Mrs N was referred by the heart failure clinic to the Hospice in March 2017 for management of breathlessness. The records demonstrate she was seen on a number of occasions by the medical and therapy staff. She also attended a course of therapy sessions at the Hospice.
25. The notes show Mrs N was seen at the Hospice in May 2018. The notes suggest she appeared comfortable and there were no signs of breathlessness, although she did have an irregular pulse and a swollen leg. During this consultation there was no follow-up arranged, however there was contact between the family and the Hospice, including with medical staff.
26. An entry from July 2018, by GP 1, notes that breathing was not a problem and that they agreed with Mrs E that Mrs N would be discharged from the Hospice. We can see GP 1 wrote a letter to Mrs N’s GP informing them of the discharge from the Hospice, as there were no specialist palliative care needs.
27. Our adviser has reviewed Mrs N’s notes and confirms the decision to discharge Mrs N was appropriate. Our adviser explains Mrs N was initially referred in March 2017 for management of breathlessness. The case notes suggest breathing was well managed by July 2018 and that it was agreed with the family that Mrs N would be discharged from the Hospice.
28. We refer to NHS guidance on Hospice care, which states: ‘Hospices provide care for people from the point at which their illness is diagnosed as terminal to the end of their life, however long that may be. That does not mean hospice care needs to be continuous. People sometimes like to take a break from hospice care if their condition has become stable and they are feeling well’.
29. Based on Mrs N’s presenting symptoms, and the advice we have received, we consider it was in line with NHS guidance to discharge her from the Hospice as she no longer had issues with her breathing. The notes suggest Mrs N’s family were informed and also agreed with this decision at the time. As such, we consider there is no evidence of a failing in relation to the Hospice’s decision making.
The Practice
Domiciliary care
30. Domiciliary care involves a range of services put in place to support an individual in their own home.
31. In their complaint to us, Mrs E and Mrs S explain they called the Practice on 9 January 2019 requesting domiciliary care for their mother. The Practice asked if the care could wait until the next working day. The family agreed to the Practice’s request, as they felt guilty requesting last minute domiciliary care. Mrs E and Mrs S say they consider, in hindsight, it was inappropriate to suggest care for the next working day. They explain that their mother had an ischaemic leg and was dying, therefore she should have received domiciliary care on the same day.
32. On 3 January 2019, a discussion took place between the Practice and the family regarding Mrs N’s urinary urgency at night and difficulty sleeping. A urine sample was requested for testing and the Practice prescribed Zopiclone, sleeping tablets. The notes suggest the urine sample was sent to a laboratory on the same day and on 8 January 2019, the results were returned to the Practice. There was no evidence of a urine infection.
33. On 9 January, the family called the Practice again. The family informed the Practice they had been advised by a district nurse to contact the GP as Mrs N had poor appetite, a red toe and poor urine output. The GP advised the family to push fluids and arranged a review for the next day.
34. The ‘Patient info’ guidance on palliative care sets out the following: ‘Best practice in community palliative care - the multidisciplinary team can be large and, most often, the district nurses are the key players in orchestrating services around an individual's changing needs’
35. We also refer to the following GMC guidance: ‘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”.
36. We reviewed Mrs N’s records and sought clinical advice on this matter. We can see Mrs N’s daughter contacted the Practice on 9 January 2019, as advised by the attending district nurse. The telephone call notes demonstrate the GP reviewed the urine sample results, which were clear, advised the family to push fluids and arranged for a review the next day. Our adviser informs us that this was the appropriate course of action, as Mrs N had been seen by the main care provider, the district nurse, in line with the guidance.
37. We acknowledge that Mrs N’s family were understandably very concerned about the management of Mrs N’s symptoms at the time of events.
38. Based on the information we have seen so far, we consider the Practice correctly managed Mrs N’s care and treatment on 9 January 2019.
39. As we have explained above, we can see Mrs N had already been seen by the district nurses that day and the GP was aware of the urine test results on 8 January 2019, which our adviser confirms did not indicate any signs of abnormality.
40. The GP promptly provided suitable advice, which is in line with the GP guidance. The GP advised to push fluids to help maintain Mrs N’s hydration and provide fluids so there was a possibility that a urine sample could be obtained to retest the next day on the visit, though it proved to be difficult because she was wetting into a pad.
41. It is our view that the Practice acted in accordance with the GMC guidance.
Syringe driver
42. Mrs E and Mrs S say the Practice failed to organise a syringe driver for their mother on 10 January 2019. A syringe driver (or syringe pump) is a small battery-powered pump. It delivers a steady stream of medication through small plastic tube under the skin. The family believes the GP changed the electronic records to reflect a discussion had taken place around the use of a syringe driver.
43. We have reviewed the attending GP’s statement. The GP explained a discussion around the needs for additional analgesia (pain killers) in the form a syringe driver took place as Mrs N’s oral intake was likely to decline over the following days.
44. We considered Mrs N’s medical records from 10 January 2019. The records state the following:
‘will need driver soon or over the w/e. Poor oral intake, family aware, has everything needs at home’.
45. Mrs N’s notes show that a discussion around the syringe driver did take place and that a referral was made the following day. For these reasons we have not identified any evidence the Practice failed to arrange a syringe driver for Mrs N and that a discussion did not take place.
46. We acknowledge Mrs E and Mrs S’ concerns about the differing comments within their mothers’ medical records and recognise their belief that the GP changed the records to reflect a discussion around the use of a syringe driver.
47. The GMC Good Medical Practice (2013), outlines GP responsibilities. The GMC explains that in providing care, a GP must keep clear, accurate, and legible records which report the relevant clinical findings, the decisions made, the information given to patients, any drugs or other treatment prescribed and who is making the record and when.
48. We do not have an independent account of what was discussed during the GP’s visit on 10 January 2019, however, on the balance of probabilities, we are persuaded that the notes are an accurate record of what happened because of their consistency and content. We have also reviewed the Practice’s audit report and cannot see any indication of amendments being made. The medical records also appear to be in line with the GMC guidance.
49. Based on the evidence we have seen, we have not upheld this aspect of the complaint.
Issue 3– Urinary retention
50. Mrs E and Mrs S say their mother was showing signs of kidney malfunction. They explain that their mother was dehydrated and uremic (a build-up of toxins in the blood), which is often a sign of kidney disease. When a catheter was eventually inserted by a district nurse the bag immediately filled to the limit. The family explain urinary retention tests should have been carried out based on their mother’s presenting symptoms, as opposed to urinary infection tests.
51. We note urinary tract infections (UTIs) affect your urinary tract, including your bladder (cystitis), urethra (urethritis) or kidneys (kidney infection), whereas urinary retention is the inability to voluntarily urinate.
52. In its response, the Practice explains many of its patients die at home and by far the majority die without urinary catheterisation. Urinary pads are usually the way it deals with incontinence in end-of-life situations. This is less invasive, given Mrs N was dehydrated and uraemic. The Practice did not think catheterisation was necessary at that time, or that it would be needed going forward.
53. The Practice says the cause for urinary incontinence should always be sought. The Practice excluded a urinary infection but did not consider urinary retention. This could well have contributed to Mrs N’s pain and discomfort and the Practice agree this could have been alleviated earlier.
54. We refer to the ‘Lower Urinary Tract Symptoms in Women (LUTS) guidance. The guidance states: ‘Some of the LUTS women may experience are: • burning or stinging when you pass urine • constant lower tummy (abdominal) ache • needing to pass urine often (frequency) • an urgent feeling of needing to empty your bladder (urgency) • loss of bladder control (incontinence). needing to get up to urinate several times in the night • feeling of needing to empty your bladder even after urinating. or a dribble of urine • after you think you have finished • difficulty urinating; and • a slow stream of urine.’
55. As per the urinary retention guidance, ‘symptoms of acute urinary retention may include being unable to pass any urine despite a strong urge to pass urine. There is often also pain and bloating of the lower tummy (abdomen)’.
56. We refer to the guidelines for the management of urinary incontinence in the palliative care setting: ‘43.2.1 Assessment All patients should be asked about the presence of urinary symptoms on initial assessment and any findings should be documented.’
57. We also refer to the ‘Good Practice in Continence Services’ guidelines which state: ‘All patients presenting with incontinence should be offered an initial assessment by a suitably trained individual.
The key components of an initial continence assessment are: • review of symptoms and their effect on quality of life • assessment of desire for treatment alternatives • examination of abdomen for palpable mass or bladder retention • examination of perineum to identify prolapse and excoriation and to assess pelvic floor contraction • rectal examination to exclude faecal impaction (not to be carried out in children) • urinalysis to exclude infection • assessment of manual dexterity and • assessment of the environment, e.g. accessibility of toilet facilities’.
58. We can see that Mrs N’s symptoms were non-specific, with restlessness and a reduced urinary input. Our clinical adviser confirms that an appropriate test for urinary retention would be to examine the abdomen. The guidance for this test is set out in the guidelines.
59. We were very sorry to hear Mrs N suffered from urinary retention. We understand the family’s concern that the GP should have done more to alleviate Mrs N’s symptoms.
60. We have seen no evidence in the records to suggest an examination of the abdomen was carried out. As such, based on the information we have seen so far, we consider the care and treatment provided by the Practice fell below the appropriate clinical standards, which state the key components of a continence assessment should include an examination of the abdomen.
61. The Practice has acknowledged that it did not consider urinary retention and that this may have well contributed to Mrs N’s pain and discomfort. This acknowledgement is in line with our Principles of Good Complaint Handling. However, we consider an acknowledgement is not sufficient in the circumstances. We are proposing to make recommendations to put things right, in line with our Principles for Remedy.
62. We have considered the impact of these failings.
Impact
63. The impact we have seen is that Mrs N experienced pain and discomfort toward the end of her life and that her family were caused additional and unnecessary worry during an already very difficult time. We have made recommendations for the Practice to put this right. We will set these out at the end of this report.
Issue 4 – Hospice
64. We note Mrs E and Mrs S consider their mother should have been referred to a hospice by the GP as she entered the last few days of her life.
65. The Practice has explained, Mrs N had already been reviewed by the palliative care team some months before and everything was in place if she deteriorated, and there was no initial need for specialist palliative care input. This is why the Practice did not ask the Hospice for support or for Mrs N to be admitted. The Practice notes it was always Mrs N’s wish to die at home and this was included in her end-of-life care plan.
66. We refer to the Gold Standards Framework which states: ‘the last days of life are distressing to all concerned and the last days are usually discussed before with a decision on the place of death. The majority of patients want to die at home, so care is provided to enable them to do this in a structured way.’
67. We also refer to Department of Health ‘End of Life Care Strategy’ guidance which states: ‘Care in the last few days: • identification of the dying phase • review of needs and preferences for place and death • support for both patient and carer • recognition of wishes.’
68. The guidance goes on to state: ‘One of the key aims of an end-of-life care strategy is to ensure that services provided to people approaching the end of their lives are, as far as is possible, responsive to their needs and preferences’.
69. We have carefully considered everything Mrs N experienced and how it affected the family. We have balanced the evidence, including what the Practice said, the records, and information from our adviser, to reach a view on what should have happened. Based on the information we have seen, we have not identified any failings in the care provided by the Practice for this aspect of the complaint.
70. The evidence shows the Practice had identified Mrs N was at end of life, her care plan was engaged, and she was under the primary care team, being seen by the District Home Nurses (DHN). Her end-of-life medications had also been prescribed and the GP contacted the DHN team. We can see that the Practice adhered to Mrs N’s wish to die at home. This is in line with the guidance. Our adviser has also confirmed our view. It is for these reasons we have not upheld this aspect of Mrs E and Mrs S’ complaint.
71. We were very sorry to hear of Mrs N’s death and offer our condolences to the family for their loss. We also understand that the family are left with the feeling that their mother could have died without pain. We appreciate the upset and frustration the family have experienced as a result of these events and at having to pursue this complaint. We also accept the time we have taken to consider her complaint has added to those feelings and we apologise for that.