"End of life care - lack of information"

About: Hull Royal Infirmary

Mother (92) died recently in Hull Royal Infirmary’s Ward 80. Staff generally attentive and professional, but I have a few comments. Mother collapsed at home, taken to Hull Royal. Next day it was decided she was too ill and treatment would only increase her suffering, so put on end of life care. I was not at meeting where doctor informed relatives of decision. Speaking to relatives later, they seemed unsure whether they had been asked for permission for this to happen or just informed that it was happening. They went along with it in a spirit of “doctor knows best”. They were not all clear about what end of life care involved. Mother could not swallow (“nil by mouth” was on her door). When end of life care began, the drip supplying her with liquid was removed. This disturbed me, and I had queries about the decision to put her on end of life care. I raised my concerns with the senior nurse, who got a young doctor to talk to me. Nurse and young doctor gave me some reassurance, but they had presumably not been involved in the decision to put mother on end of life care. It was middle of the night at the weekend. Consultant would not be in until Monday. I’m not saying it was wrong to put mother on end of life care, but I would have liked more information about it from someone who’d been involved in making the decision. For instance, how many people had been involved in making the decision and would a 2nd opinion have been possible? Mother had pneumonia and eventually she was given a continuous infusion of sedative (midazolam) and medication to stop liquid build-up on chest. She was given (dia?)morphine occasionally. All administered professionally, as far as I could tell. Staff changed mother’s body position occasionally, to keep her comfortable. Staff/relatives moistened mother’s mouth and tongue now and then, constant open-mouth breathing tending to dry her mouth. Early in end of life care, during my visit from 10 pm until 7:30 am, mother was coughing and spluttering, unable to clear throat properly. I asked the senior nurse if anything could be done. Nurse was sympathetic, but nothing was done. I cannot remember mother’s body position being changed that night. Next day a tube was used to suck phlegm from her throat and the infusion mentioned above was started. This made her more comfortable. Why was this not done the night before? Maybe team specializing in end of life care not available overnight. Despite the care, mother had bouts of deep, rapid breathing for more than an hour. Presumably there’s nothing more staff can do in such situations, since they can only give (dia?)morphine in restricted doses, for fear of committing euthanasia. End of life care options were: treatment in hospital, at home, or in a hospice. We chose hospital. Ward 80 treats various elderly patients, not just terminal ones. Maybe a hospice would have been better, staff there only having the terminally-ill to care for. Without experience in such matters, difficult to say.

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Response from Hull Royal Infirmary

Thank you for placing your posting on the NHS Choices website. We are sorry to read of your recent experience and we will ensure that the staff concerned are made aware of your mothers experience. If you would like to discuss this matter further with us, please do not hesitate to contact our Patient Advice & Liaison Service on (01482) 623065 or email on pals@hey.nhs.uk . If you would like to become more involved in decisions about local healthcare, we are recruiting members. By becoming a member you receive our quarterly newsletter, find out more about your local NHS and help us improve local services. You can also attend our ‘medicine for members’ sessions and respond to questionnaires. You don’t need any special skills or experience to become a member; you just need an interest in local health services. There is no commitment, you can get involved as much or as little as you choose. For more information please either email foundation.trust@hey.nhs.uk or telephone the Corporate Affairs office on telephone number (01482) 675165. Thank you once again for taking the time to provide us with your views on local NHS services. Kind regards, Patient Advice and Liaison Service (PALS) Hull and East Yorkshire Hospitals NHS Trust.

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