Just call me Aude - why end of life care matters
The writer is a consultant geriatrician in England
On a post-take ward round before Easter, I met a 97-year-old retired priest. Recently she had been in hospital for three weeks after a fall and fractured pubic ramus. Two days after discharge home with care three times a day she was readmitted with melaena and haematemesis. She was clerked overnight by the medical SHO who handed her over to me as being someone to prioritise. She was anaemic but haemodynamically stable and her vomiting had stopped with an antiemetic. He had discussed treatment options with her, and her daughter and they had agreed together not to pursue an endoscopy but to manage the bleed conservatively.
I went to see her first thing. She was in her twelfth hour in A&E majors; monitor and transfusion pump both blaring asynchronously.
“Just call me Aude” she said when I greeted her and asked how she’d like to be addressed; her title was recorded as Reverend. We talked through the options for her care. We could try doing a gastroscopy, we could watch and wait and manage her conservatively.
“I want to go home to die” she said. “I just want all these machines and all this noise to stop and to go home to die.”
I explained that it wasn’t clear that she was imminently dying, that it might be that the bleeding was a slow ooze that might stop. “I don’t care, I just want to be in my own home”.
I endeavoured to do my best to achieve that but warned that often the logistics in these situations are difficult. She then kissed my nitrile-gloved hand and started offering a blessing to me and the nurse practitioner.
“May God bless you and keep you,” she said “and offer you strength and courage in the work you do.”
The nurse practitioner and I were reduced to tears. I turned off the monitor so that I could stop some of the noise that was disturbing her.
I called her daughter who had been with her when she became unwell on the day of admission but lived some distance away. She told me she had had to call 999, the out of hours GP had directed her to, as there wasn’t a care plan in place for her. She was very dubious about the plan for her mother to go home but after some discussion about the ReSPECT form I had completed with her mother, the role of the community palliative care and community nursing teams, use of PRN medications and continuous infusions for symptom control and involvement of the community nursing team, she was largely reassured. I left an occupational therapist (OT) assessing Aude’s ability to transfer to a commode and the medical nurse practitioner writing a discharge summary and medications to take home, including end-of-life medications to use if needed.
I caught up with the OT a couple of hours later. “Is Aude going to get home?” I asked. She shook her head. “The other doctors who came to see her said she needed to stay in for a post-transfusion blood test and they have told her daughter that.” I was so sad. I had been doing my best to deliver person-centred care and a specialist team came and trumped that with a disease-specific pathway. She was admitted, the daughter’s trust in my team’s ability to formulate a plan to get her home dashed.
I was on call over the Bank Holiday weekend. The palliative care team were trying to organise a 24-hour carer to get Aude home. Unfortunately, she died on Easter Saturday in hospital. I wondered how many doctors Aude had seen in the last month and whether, if just one of them had started some advance care planning conversations, the outcome would have been different. It may well not have been, but nothing ventured, nothing gained.
We ALL need to ask our patients what matters to them and then listen to our patients and what they want. Each patient is a person, but too often that personhood is considered after the presenting complaint. Just because a patient’s illness is “potentially reversible”, it does not follow that admitting them against their wishes to reverse that illness is good care. I reflected on what Aude had taught me. Often it’s not the patient, or their carer, who fears death, it’s the medical team who fear that death is a sign of something lacking in the care they provide.