IMCA Client C
C was a patient in hospital and was referred in relation to a Serious Medical Treatment decision. C is an elderly lady diagnosed with dementia and had been living in a residential home prior to being admitted to hospital. C had been suffering from urosepsis and had a number of other health problems, including previous cardiac failure and osteoporosis. The referral stated that C’s condition had deteriorated during her time in hospital, and that she now suffered from dysphasia and was under the care of the speech and language therapist and the medical team. C was assessed as being at risk of aspiration and a nasal gastric feeding tube had been inserted which C had removed. C was being given stage 2 fluids and was not being fed due to the risk of aspiration. Due to her risk of aspiration, C had not been fed in over 5 weeks and so a referral for a Percutaneous Endoscopic Gastrostomy (PEG) had been made.
Barriers faced in being heard:
The IMCA visited C to ascertain her wishes and views regarding the proposed decision around PEG. The IMCA was unable to ascertain C’s wishes and views on the treatment due to her presentation and communication difficulties.
Advocacy undertaken:
- The IMCA attended a best interest meeting on C’s behalf. The MDT raised concerns that C was currently being hydrated by receiving subcutaneous fluids and that they were unable to give intravenous fluids or take blood samples due to the fragility of C’s veins. A nasal gastric tube had been attempted but C had removed it. It had been decided to refer C for the insertion of a PEG.
- The dietician involved was not in attendance but had sent a report to the ward which raised a number of concerns. The dietician considered C to be at risk of re-feeding syndrome and stated that there were “contra indications for a PEG”. The dietician report also stated that if C was kept ‘nil by mouth’ and only minimally hydrated, she would be unfit to undergo surgery.
- On reading C’s health records, the IMCA noted that C was receiving end of life medication. However, there was no record of assessment or review by the palliative care team. A DNAR was active on C’s file. It held no information as to whether anyone had been consulted on this matter or whether an IMCA referral had been considered. The IMCA requested further clarification regarding the dieticians’ report and that clarity was needed regarding the specific risks of the proposed surgical intervention as it applied to C’s specific case, taking all her medical issues into account.
- If C was considered a palliative care patient, it needed to be investigated further as this could have an impact on whether the surgical procedure being proposed was in the best interest of a person in end stages of life.
- The consultant stated that he was unable to make a decision due to the outstanding queries. He and the ward staff met with a colleague following the meeting to attempt resolution of some of the issues raised and progress the case.
Outcomes:
Further attempts were made to gain access to C’s veins for both the transfer of fluid and to take blood samples so as to monitor C’s health. These were successful resulting in C being able to receive proper hydration.
The consultant reviewed C’s condition and determined that she was physically stable and not at an end of life stage. He discussed C’s case with a consultant gastrological surgeon and was advised that an attempt be made to fit a nasal gastric tube but employ a bridle to secure it. This was done successfully and C was able to received nutrition.
A further Best Interest meeting was convened for a final decision to be made. The outcome was to not proceed with the insertion of a PEG as, looking at C’s specific medical status it was felt that the risk factors (anaesthesia, aspiration pneumonia, re-feeding syndrome) were too high and would compromise C’s quality of life.
C tolerated the nasal gastric tube for a few days. However, her presentation had now improved to the extent that she could be risk fed with a pureed diet and thickened fluids. A suction machine has been made available to help with any problems of aspiration.
Both dietician and speech and language continued their interventions. C was successfully fed using a less restrictive alternative to the surgical intervention.