Case Studies

Care Campaign for the Vulnerable is receiving an increase in the number of distressing reports saying care homes and GP's 'falsely' reassure families that loved ones are not nearing the end but then they miss the opportunity to say their final goodbye when suddenly and unexpectedly they pass away. Some families say this is lacking in transparency around organising end of life care plans and failing to communicate with relatives that hold a lasting power of attorney when they raise care concerns (LPOA).

''We received a call from our late mother's Care Home on the afternoon of Tuesday 3rd November 2020 advising us that our Mum had fallen and that an ambulance had been called. When we asked how it happened and what her injuries were we were advised that it was unwitnessed and she was on the floor by the chair on the landing.

We were told that the 'First Responders' administered gas and air for the pain from Mum’s left hip and the Care Team Supervisor and the Care Home Manager remained with Mum to keep her calm. When the ambulance arrived Mum was taken to Hospital. I followed the ambulance but was not allowed to accompany Mum into A&E due to COVID. She remained in A&E overnight, without a member of her family to support and reassure her, or ease her confusion. We were unable to help communicate her injuries or pain to the hospital staff, or provide any background medical history. A&E later confirmed to us that Mum had fractured her left hip and her right thumb. At that point, we called the Care Home to see if it would be possible for them to review their camera footage of Mum’s fall as this might help the hospital doctors to ascertain the full extent of Mum’s injuries as she could not communicate for herself, and may have had other injuries that had perhaps gone undetected. We were advised that a witnessed report of her fall had been sent with Mum to A&E, and the camera footage was never shared or discussed with our family.
As Mum suffered from advanced Alzheimer’s some days were better than others. Although muddled, confused, very quietly spoken, and becoming frail, she was still mobile and took regular walks unaided along the first-floor landing, was physically capable of feeding herself, and with prompting, guidance and support would mostly comply with personal hygiene and getting dressed. Her dementia had been slowly progressing in terms of her awareness of the world around her but on good days during COVID Lockdown she would stand on the first-floor landing and wave to us at the front door, recognising who we were. She had also recently asked me some appropriate questions e.g. did I need any money as I had agreed to buy her some chocolates and new slippers. Mum maintained good general health and our understanding was that she continued to take Ramipril for high blood pressure, and Cetirizine for allergies. She had also received the flu vaccine at the end of September 2020.After her hip operation on Thursday 5 November, Mum was put into isolation as she had reportedly been exposed to COVID whilst in A&E, and she remained isolated for the full duration of her stay, without family or a carer to support or encourage her. Consequently, Mum made limited progress in the hospital. The staff agreed that we could visit Mum from outside looking in through the window to see if hearing our voices would aid Mum’s recovery. She recognised our voices and smiled which was encouraging as that is how she would have been before her fall. The hospital Physiotherapist also reported that Mum was strong enough to resist all attempts to be moved. We again checked with Care Home to ensure that there weren’t any other undetected injuries that were hindering Mum’s progress as she could not voice these for herself, and we were advised that the witnessed report of the fall should be with the hospital staff. The Physiotherapist had been unaware of it. There was also a concern for Mum’s mental state as she appeared very flat and disinterested, refusing to move, eat or drink. The hospital staff suggested to us that this could be linked to the effects of the anaesthetic and recovery could take longer in a patient with dementia. As Mum was confirmed to be consistently stable and clinically fit by all the hospital doctors, she was returned to the Care Home to a more familiar environment that could aid her recovery.
Once back at the home we were informed that Mum had begun to make some progress, talking, drinking, eating small amounts, even sitting in a chair with help, and reportedly complying with the Community Physiotherapist by moving her arms and legs. Our regular enquiries on Mum’s progress were met with similar or sometimes encouraging progress. We were also advised and reassured by staff that if there was any deterioration or change in Mum’s condition they would call us. We felt that Mum was still ‘Mum’ and progress was still looking promising. We had no call from the home to advise otherwise and we were therefore still of the opinion that Mum was stable and making some progress.
On Friday 4 December we received a call from the care home to say that Mum wasn’t well and that the G.P. had been called. The G.P, called us a short while later to inform us of her diagnosis. She reported that Mum was listless and could be withdrawing from life but she wasn’t sure. She had been told by staff that Mum had problems breathing but on examination, she confirmed her chest seemed clear, although an XRay could be done. She also felt that Mum may have an underlying urinary tract infection which could be making her more subdued. The GP then discussed our wishes for Mum's continuing care and we all agreed that it would be in Mum’s best interests to stay at the home. Mum was prescribed a course of liquid antibiotics for the possible urinary tract infection and was to be kept comfortable. The GP confirmed she would visit the following week to see how Mum was doing. She also suggested we may wish to prepare ourselves that Mum could be withdrawing from life, although not imminently, but could be several weeks. We asked if it would be possible to visit Mum as we hadn’t been able to sit with her for so long due to COVID, and the doctor agreed, reassuring us that nothing in her opinion would happen to Mum over the weekend. We made arrangements to see Mum the following day but she passed away in the night.As her family, we always felt that it was important to ‘hear’ what Mum couldn’t say. We did that from the outset of her dementia thirteen years ago by being with her, watching her behaviour, her change in health and constantly finding ways to support and help her whilst keeping her safe, well, and able to access life to the best of her ability and desire. Due to the severe COVID restrictions regarding access to Mum we were unable to monitor the change in her after her discharge from the hospital and relied heavily on our calls to the care home. We seek these answers to gain a complete understanding of all the facts leading up to our Mum’s death so that we can remove the confusion over how she fell, the initial diagnosis after the fall including all the injuries sustained, clear up the discrepancies between the reports, and learn the true cause(s) for her sudden deterioration culminating in her death.

The questions we wanted to be answered are, can we have visual clarification from the CCTV footage of the fall to understand exactly how Mum fell and what happened leading up to the fall. On arrival at A&E, the Emergency Department Charge Nurse documented the following injuries: a haematoma to the forehead and a haematoma to the left wrist and hip pain (as indicated in the Stoke Mandeville Hospital report by Dr Chi Yuen Yau, point no.3). Why wasn’t the forehead injury reported on the Care Home Accident Report? Was the fall witnessed first hand or via the CCTV footage? We've asked the coroner can she confirm Mum’s total injuries as the hospital reports are not consistent with the Accident Report. Did Mum have all of the following: A haematoma to the forehead and a haematoma to the left wrist, a left hip fracture, a right thumb fracture? Could the injury to the head have been in any way related to the deterioration in Mum’s condition?

Given Mum’s medical history of being at high risk of intracranial bleeds was it safe to prescribe anticoagulants for twenty-eight days? She had previously been advised by both a Cardiologist and a Neurologist in 2014 that it was too risky (this was documented in her discharge notes for Atrial Fibrillation treatment in hospital dated 27th March 2014 and would have been accessible to hospital staff). At what point in the last twelve days of life did our Mum’s condition start to deteriorate and what changed during that time both in her mental and physical condition?

Why were we not informed by the care home of the deterioration in our Mum’s condition if they believed her death was expected? We lost the chance to sit with her or say our goodbyes, both of which had been intended to happen. The care home manager stated that this was an ‘expected death’. However, the G.P’s diagnosis to our family on 4th December was not considered to be imminent or even definite at that time. Who confirmed that diagnosis to the home and why not also to our family? (see GP Patient Summary under Consultations, a conversation between the home and the G.P. on 8th December). Our Mum’s level of frailty was scored in hospital as Clinical Frailty Score 7 which we understand to mean that a person is stable and not at high risk of dying within six months which is not in keeping with an ‘expected death’.

Why did the GP only discuss the referral of our Mum’s death to the Coroners Office with the Care Home on 8th December, and not our family? As we were not aware that a post mortem was being considered what was the ultimate reason for deciding against a post mortem, who had that discussion and who made that decision? (see GP Patient Summary under Consultations, the conversation ‘might not go to PM’ between the care home and the G.P. on 8th December). We had no call from the GP or the Care Home. We were not included in any discussion regarding the possibility or requirement to hold a post mortem. We were not advised as to why the death certificate could not be signed.
This took away our right to understand what was happening, or, to discuss whether a post mortem should possibly even have been a consideration. We waited a week to receive any communication. The Coroner’s Office was the first to call us a week after our Mum’s death to inform us of the situation and discuss the opening of the inquest.

Care Campaign for the Vulnerable is supporting this family. If you need support with an issue in a care home, please contact us in confidence at ccftv.cares@gmail.com