An independent provider in the Wakefield area

2. Miss A complains about the care provided by the Hospice to her mother, Mrs B, in 2024. She says the Hospice:

• Failed to carry out the medication review her mother was admitted for

• Failed to provide her mother with appropriate care and treatment to help improve her condition so she could be sent home

• Incorrectly placed her mother on the end of life care pathway and kept her on it for 3 days

3. Miss A says her mother’s condition deteriorated, she became weaker and then died as a result of these failings. She believes her mother’s death could have been prevented.

4. Miss A says the death of her mother and the circumstances under which she died has caused her a great deal of distress. She would like the Hospice to acknowledge the failings, apologise and improve its service.

5. Mrs B had a medical history of heart failure, high blood pressure, previous stroke, atrial fibrillation (irregular heart rhythm) and progressive metastatic renal cancer. She was receiving care at home with input from the community palliative care team. She was admitted to the Hospice after her family reported she was suffering episodes of confusion. Mrs B sadly died in the Hospice 3 weeks later.

Failed to carry out the medication review her mother was admitted for

9. In its response to this point the Hospice said:

‘It is understood that the family were of the view that Mrs B was being admitted for the sole purpose of a medication review. Our formal response to the family acknowledged a potential miscommunication between the referrer (the community palliative care team), the Hospice, and the family regarding the reason for admission.

On admission to the Hospice, a holistic assessment was undertaken. This identified pain, delirium with hallucinations, increased overnight care needs placing significant strain on carers, and a high tablet burden as the main areas requiring assessment on admission.

Assessments were carried out to investigate the cause of the delirium, which included a medication review by the admitting doctor. The family expressed an expectation that all medications would be stopped and then reintroduced one by one to assess their effect on their mother’s delirium. The doctor explained this is not standard practice, and the investigation undertaken was broader in scope, with a medication review being a component of a more comprehensive clinical assessment.

There is evidence throughout the medical notes of appropriate medication reviews by the medical and pharmacy teams, and the family’s involvement in decisions regarding changes to medications.

At the Hospice, we value all feedback and view any incidents as opportunities to reflect, learn, and improve the care we provide. We reviewed areas for improvement within our referral and admission processes. To strengthen communication, the admitting nurse or doctor will clarify the rationale for admission with the referrer and ensure this is clearly communicated to the patient and their family prior to transfer.

This will be documented as part of the admission process, to promote clearer expectations and a shared understanding of the purpose of Hospice admission.’

10. The family reported to the community palliative care team that Mrs B had experienced episodes of confusion and queried whether her paracetamol medication was the cause of this. The community palliative care team discussed the option of hospice admission ‘to enable medications to be fully reviewed/changed in a controlled environment, enable staff to monitor for signs of confusion and hallucinations and adjust medications as required’.

11. The records indicate the management plan was for a ‘referral to the Hospice for symptom management and period of assessment to try and improve her quality of life.’ Our physician adviser said whilst a medication review is normally undertaken as part of such an assessment, hospice care would usually involve a more comprehensive, holistic assessment of the patient’s overall symptoms and needs.

12. The evidence in the records supports the response from the Hospice with regards to the miscommunication about the reason for Mrs B’s admission to the Hospice. The Hospice has acknowledged this could have been communicated more clearly to the family, it has apologised for the impact this had and taken steps to reduce the risk of this happening again in future.

13. Our principles say good practice with regard to remedies means:

• Getting it right • Being customer focused • Being open and accountable • Acting fairly and proportionately • Putting things right • Seeking continuous improvement.

14. We acknowledge the impact the initial confusion about the reason for admission to the Hospice had on the family and their understanding at that time of the care and treatment Mrs B would receive in the Hospice. We think the action taken by the Hospice to address this is appropriate and in line with our principles.

15. The GMC guidance states:

‘You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must:

• 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

• promptly provide or arrange suitable advice, investigations or treatment where necessary

• refer a patient to another practitioner when this serves the patient’s needs.

In providing clinical care you must:

• provide effective treatments based on the best available evidence

• consult colleagues where appropriate.’

16. Our physician adviser said the records indicate following her admission, the Hospice performed a comprehensive assessment of Mrs B’s needs. The records indicate as a result of the assessment the Hospice performed several medication reviews, primarily in relation to her symptoms of pain, confusion and delirium.

17. For her pain the Hospice reviewed Mrs B’s medication and provided treatment with buprenorphine patch (slow release morphine medication which is gradually released through the skin into the body) and then topical morphine (morphine in cream or ointment form applied directly to the skin of the affected area) for her pressure sores. The records indicate the medical team discussed increasing the dose of her morphine patch but Mrs B declined this. The medical team also considered continuous subcutaneous infusion of pain relief medication (where pain relief is provided steadily and continually through a syringe) if the pain relief medication they had put in place failed to achieve the desired results.

18. The records indicate, prior to her admission to the Hospice the local hospital performed a CT head scan which showed no signs of abnormalities affecting Mrs B’s brain, no evidence of brain metastasis or any other possible causes of her increasing confusion. To investigate her fluctuating confusion and symptoms of delirium with hallucinations the Hospice performed an infection screen (blood tests and a urine sample) to establish whether her symptoms were due to infection. The screen identified a urinary tract infection (an infection which can cause delirium, confusion and disorientation in older patients) and the Hospice provided treatment with oral antibiotics.

19. We carefully considered Miss A’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. Considering the reason for her admission and the symptoms that prompted it, we found no evidence to indicate the Hospice failed to carry out an appropriate medication review. We think the action taken by the Hospice was in line with the GMC guidance.

Failed to provide her mother with appropriate care and treatment to help improve her condition so she could be sent home

20. In its response to this point the Hospice said the care it provided was appropriate for her symptoms and did not contribute to Mrs B’s deterioration or her death. The Hospice said Mrs B died as a result of her underlying progressive metastatic cancer and the frailty associated with other comorbidities and advanced age.

21. Our physician adviser said the records indicate at the time of her admission Mrs B’s ongoing care needs included confusion, pain relief and pressure care. Our physician adviser said due to the significance of her needs, and the impact they were having on her and the people caring for her, the care she required was best delivered in a hospice environment.

22. Our physician adviser said the records indicate the Hospice provided appropriate treatment in line with the GMC guidance. The Hospice performed a comprehensive initial assessment and produced an individualised care plan for Mrs B aimed at supporting her with her significant needs and the symptoms she displayed.

23. The Hospice provided medication to treat her pain, the suspected cause of her delirium and her pressure sores, which were the main conditions that prompted her admission and required immediate treatment. The records indicate the Hospice regularly reviewed Mrs B to assess her condition, the impact of the treatment and to look for signs of improvement or deterioration.

24. Our physician adviser said the only indication of a failing in the treatment provided by the Hospice was the administration of a dose of co-amoxiclav (a penicillin antibiotic) despite Mrs B being allergic to penicillin. The Hospice has acknowledged this mistake in its response to Miss A’s complaint and apologised. The Hospice said although this was a failing it did not have a detrimental impact on Mrs B’s condition. The Hospice has reviewed its admission documentation to ensure allergies are accurately recorded by the admissions team and then reviewed by the pharmacist.

25. Our physician adviser said the evidence in the records supports the view that the administration of co-amoxiclav did not have an impact on Mrs B’s condition and no adverse reactions or side effects are reported in the records. We think the action taken by the Hospice to address this failing is appropriate and in line with our principles.

26. Sadly Mrs B’s condition did not improve despite the treatment the Hospice’s medical team felt she was approaching the end of her life and her treatment should focus on keeping her comfortable.

27. We carefully considered Miss A’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. It is important to note that underlying the symptoms that prompted her admission was Mrs B’s progressive metastatic cancer and her other significant comorbidities.

28. Other than the single dose of co-amoxiclav which the Hospice has already addressed, we found no evidence to indicate the Hospice failed to provide Mrs B with the treatment she required for the symptoms she was admitted with. We found no evidence to indicate her deterioration was due to inadequate or inappropriate treatment, or that there was any additional treatment the Hospice could have provided to reverse her decline or change her outcome. W found the treatment provided by the Hospice was in line with the GMC guidance.

29. The NMC standards say nurses should:

• demonstrate the ability to accurately process all information gathered during the assessment process to identify needs for individualised nursing care and develop person-centred evidence-based plans for nursing interventions with agreed goals

• demonstrate the knowledge, skills and ability to act as a role model for others in providing evidence-based, person-centred nursing care to meet people’s needs related to mobility, hygiene, oral care, wound care and skin integrity

• observe, assess and optimise nutrition and hydration status and determine the need for intervention and support

30. The NICE patient guidance says nurses should ensure the patient's personal needs (for example needs relating to continence, personal hygiene and comfort) are regularly reviewed and addressed. They should regularly ask patients who are unable to manage their personal needs what help they need. They should address their needs at the time of asking and ensure maximum privacy.

31. Our nurse adviser said the records indicate on admission the Hospice nursing team carried out a full assessment of Mrs B’s nursing needs, and the records indicate her needs were reassessed throughout her admission.

32. In relation to her nutrition and hydration needs, the records indicate Mrs B had no special dietary requirements, had no problems with chewing or swallowing, preferred a small portion of soft diet due to her poor appetite and preferred to drink tea. The records indicate Mrs B’s condition deteriorated and her nutritional needs were reassessed, noting that she would like milk from a beaker and needed assistance with meals due to fatigue.

33. The records indicate Mrs B’s family requested subcutaneous fluids (liquid solutions administered under the skin to provide hydration) when she deteriorated, and the Hospice provided this. Our nurse adviser said the nursing evaluations and food charts in the records demonstrate that the Hospice nursing team followed Mrs B’s nutritional and hydration care plan throughout her admission.

34. In relation to her toileting needs, the records indicate the Hospice assessed Mrs B and concluded she was continent of bowel and bladder but needed assistance to mobilise to the toilet or commode. Our nursing adviser said the nursing evaluations in the records indicate the Hospice nursing team provided this assistance. As Mrs B’s condition declined the Hospice provided continence pads to assist with her urinary incontinence. Later in her admission the Hospice put a urinary catheter in place.

35. The records indicate the Hospice nursing team put in place a personal hygiene care plan. The plan indicates Mrs B required the support of one member of staff with washing and dressing and that she was offered baths, showers or washes to meet her hygiene needs.

36. The records also indicate the Hospice nursing team completed moving and handling assessments and noted that Mrs B’s needs changed over the course of the admission. She initially required the assistance and supervision of two staff to access the toilet but her mobility fluctuated. The records indicate later in her admission Mrs B was bedbound and from this point the plan put in place by the nursing team was to assist her to regularly change her position in bed.

37. We acknowledge when providing care for patients who require an increasing level of support with their mobility and toileting needs there will be instances where they experience episodes of incontinence and require further hygiene care. We acknowledge that such incidents will be upsetting for the patient and also the family members who witness it.

38. We carefully considered Miss A’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. We found the Hospice nursing team assessed and evaluated Mrs B’s nursing needs appropriately and provided care in line with her preferences, the NMC standards and NICE patient guidance. We found no evidence to indicate the nursing care contributed to Mrs B’s deterioration or her death.

Incorrectly placed her on the end of life care pathway and kept her on it for 3 days

39. Ms A says her mother would sleep very deeply and the Hospice mistook this for being unresponsive. She says this meant her mother was left without treatment, care and nutrition for 3 days which had an impact on her condition.

40. In its response to this point the Hospice said:

‘The Hospice doctor who assessed Mrs B documented a significant clinical deterioration over the preceding 24 hours. This included increased drowsiness, new difficulty with drinking (for which she had previously been independent), and an episode of non-responsiveness that morning. Her breathing was described as laboured, and nursing staff reported episodes of apnoea (pauses in breathing during sleep).

In light of these changes, Miss A was contacted and encouraged to come to the Hospice as it was felt that her mother was approaching the end of her life. The Hospice doctor also discussed this deterioration with Mrs B’s son.

Mrs B’s son reported that his mother had experienced similar episodes at home, during which she would become non-responsive but then wake after several hours. The Hospice doctor explained that the main concern on this occasion was the change in her breathing, and that this suggested her time may now be shorter.

The Hospice doctor subsequently reviewed Mrs B with her daughter present and discussed the purpose of the end of life care (EoLC) plan and how this is very different from a pathway, including that there would be ongoing regular medical and nursing review. It was also recorded that, should there be sustained clinical improvement, the plan would be revoked.

There was later evidence of clinical improvement, and the family expressed concerns about the continuation of the plan. The EoLC plan was formally revoked 2 days later.

The doctor met with the family and reiterated that marked functional decline, reduced level of consciousness, and apnoeic breathing are clinical indicators that time may be very short. However, the Doctor explained that this remains a clinical judgement and that it can be very difficult to determine with certainty when a person is dying. The Doctor also explained that, while a patient is being supported under an EoLC plan, ongoing medical and nursing review continues and any sustained clinical improvement would lead to the plan being stopped.

The Doctor acknowledged that the EoLC plan had caused significant distress to the family and for this reason it could have been discontinued earlier. The Doctor apologised for this. However, the quality of care, while supported by an EoLC plan, was not compromised, with the only difference that non-essential medications had been stopped.

Medications were stopped following the commencement of the EoLC plan as Mrs B was unable to take oral medications due to her reduced level of consciousness. Medications were restarted and Mrs B was able to take her evening and nighttime doses. As such, medications were not administered for a period of approximately two days. It is the medical opinion that this would not have had any meaningful impact on the rate of her clinical decline.’

41. The NICE palliative care guidance says:

‘Recognising when someone is close to death means the right support can be given to them and also to their family, friends and other people who are important to them. It will also help the person who is dying to make any plans for how they want to be treated and cared for. It is not always possible to know for sure that someone is in their last days of life and it is hard to predict exactly when someone will die.

There are some symptoms and changes that happen to people which can be signs that they are close to death. Sometimes they might feel more tired and drowsy and want to spend lots of time sleeping. They might start to slip in and out of consciousness. Some people become very weak and less able to move around. Their breathing might change and become shallower or less regular, or it might become noisy from fluid collecting in the throat or chest. Some people become very quiet and withdrawn; others become restless and agitated. Often people lose their appetite and can lose a lot of weight; they might stop eating and drinking altogether.

If someone is dying, they should be checked every day for symptoms and changes that might show that they are close to death, and also for signs that they are not getting any worse or might be improving.’

42. According to the NICE guidance it is standard practice for non-essential medication to be discontinued when EoLC plans are put in place. The records indicate the Hospice stopped some of Mrs B’s medication for just over 2 days whilst she was on the EoLC plan as she was too unresponsive to be able to take her oral medications.

43. Our physician adviser said the evidence in the records indicates the Hospice’s decision to put in place an EoLC plan at this point was in keeping with the NICE guidance. The records support the view Mrs B developed changes in her breathing, difficulty drinking, episodes of apnoea, experienced increased episodes of drowsiness and periods where she became unresponsive.

44. We carefully considered Miss A’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. We acknowledge Miss A’s account that her mother had previously suffered episodes of unresponsiveness at home and that she would recover after a few hours.

45. We found no evidence to indicate the Hospice incorrectly placed Mrs B on an EoLC plan. The evidence in the records indicates the decision was clinically reasonable, consistent with her symptoms at that time and in keeping with the NICE guidance. As her condition improved over the next 2 days the Hospice took Mrs B off the EoLC plan in line with the GMC and NICE guidance.

46. Our physician adviser said the records indicate Mrs B suffered a deterioration in her general condition, including fatigue and reduced appetite, in keeping with a progression of her metastatic cancer. Our physician adviser said there is no evidence in the records to indicate her condition deteriorated as a result of the care and treatment provided by the Hospice.

47. We carefully considered Miss A’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. We found Mrs B suffered a gradual deterioration as she approached the end of life. We found no evidence to indicate the care and treatment from the Hospice contributed to her deterioration or that there was any additional treatment that could have been provided to prevent her death.

1. We have decided to not uphold Miss A’s complaint. We acknowledge how upsetting this incident was and that it continues to cause her considerable distress. We found no evidence to indicate Ms A’s mother died due to failings in the care and treatment provided by the Hospice.