Continued lack of openness about end of life.
Story 1 – When my elderly, widowed uncle fell down the stairs and taken to the usual hospital for people in the south of West Essex area in the early hours of the morning, it was the first intimation to the rest of the family that there was something seriously wrong. We knew he had been ill with what he thought was flu and an upset stomach. It rapidly became clear to us that there was something much worse going on with him. He was unable to stand unaided and had difficulty moving his arms or head. We were told by the doctors treating him that they needed to do investigations to find out what was wrong. Those tests never appeared to happen. Or if they did we were not informed. Every time we asked my uncle or the doctors we were told they had been postponed because either the person needed to do them was not there, the theatre was not available, etc. All the time he was becoming weaker. The initial ward he was admitted onto was quiet, he had reasonable privacy and the nurses ensured he was clean and eating and drinking. After about two weeks he was moved to a different ward. The new ward was noisy, seemed to have less space around the bed and less privacy. Food and drink was left out of reach. We had to remind the staff to carry out mouth care. We were then told by the registrar that my uncle needed an operation to repair a fistula between the bowel and bladder. Over the next three weeks the op was cancelled several times. We had numerous conversations with the doctor, expressing our concern that my uncle was becoming weaker, what would happen if he didn’t have the operation, how and where he could be cared for. My parents and aunt were reassured by the doctors. My cousins and me felt however, by things the doctors had said and their lack of treatment, that my uncle had cancer and that he was probably too frail and/or cancer too advanced to treat. At no time did any of the doctors we spoke to acknowledge that he was seriously ill or that they were unable to treat him and that palliative care should be started. He became semi conscious. My cousin and I spoke to the duty doctor about our concerns that his condition was changing rapidly but the young doctor we spoke to was extremely arrogant and appeared to be rather annoyed that she had been asked to speak to us and insisted that she hadn’t noticed any change in his condition. The next day he was not conscious . My parents and aunt who were visiting were told that he had bowel cancer, would not live more than 48 hours and they were moving him to their palliative care centre. The facilities and care on the palliative care ward were fine and made my parents and aunt feel better. However my uncle had spent over 5 weeks, not being told what was happening, being fobbed off, getting substandard care on noisy busy wards . It was the equivalent of being cared for in a 1 star hotel and then when unconscious and unable to appreciated it, being upgraded to a 5 star hotel. It wasn’t done for my uncle’s benefit but for the benefit of the hospital’s palliative centre guidelines and criteria. Because of the doctors lack of openness about my uncles condition we were unable to have a discussion about where he would like to have been cared for in the last weeks/days of his life and for him to let us know his wishes.
Story 2 – My husbands uncle had been unwell over a period of about 6 weeks and had been unable to visit us as usual. He had been for blood tests and his GP had referred him to hospital as he said he thought there was a problem with his blood. Before the hospital appointment he fell in the street, knocked his head and was admitted to one of the major London teaching hospitals through A&E. Due to the fall and droopy left eyelid we were told initially he may have had a stroke. No other symptoms of a stoke, eg. general left sided weakness, speech, cognitive problems were apparent. He was completely self caring and able to walk to the toilet, although complaining of tiredness and weakness. He continued to decline, stating he had never felt so unwell, had a huge thirst and was sweating a lot. Further tests were spoken of by the doctors, some carried out, some cancelled, postoned, reconsidered etc. No results were given other than they thought he had anaemia. He was moved onto three different wards during this period. Again, drink was left out of reach, no mouth care given. He was quite deaf and more often than not his hearing aid was not put in and was then lost. The best I can say is that the wards were cleaner and more spacious than with my uncle in his hospital a year earlier. The family continued to be told that more tests were needed even though it was fairly obvious that he was now very, very sick. He was now completely bed bound and needed help with food and drink. The last ward he was moved to was a cardiac ward where he had various monitors and drips up. By this time he was only semi concious and difficult to rouse. In this state he was taken and a biopsy done on his ankle. The next day, Friday afternoon, his niece was phoned and told he had acute myeloid leukaemia and was not expected to live past Sunday and they would put him on the Liverpool Care Pathway. When we went in to see him shortly after that, he was still in the same ward, still on the drips and with sheets soaking wet. When we spoke to the Sister on duty she told us that yes, he was not expected to live past Sunday and that the Liverpool Care Pathway could not be started until Monday as their palliative care team were no longer on duty and did not work over the weekend. When she realised I was aware of what the LCP was and suggested, gently, that what she had just told us was not acceptable and the ward he was on was not the right environment for a dying man, had no privacy and there were restricted visiting hours on the ward she did have the grace to look extremely embarrassed and immediately went to speak to the doctors. When she returned she said the doctors had agreed to start the LCP, he was moved wards and into a single room. From then I can’t fault the care and attention he got. However, unfortunately, once again we were never able to have that conversation with him about how and where he would have liked to have been cared for. In particular his niece was distraught as she would have wanted to have had him home to care for him herself for those last weeks. Two hospitals, one year apart, same old story. In both cases because of a lack of openness over end of life, my uncle and my husbands uncle and our families were denied the right to make their own decisions over their care and where that care would be carried out. It also denied them the ability to put their affairs in order or to have necessary conversations with their loved ones.