Last Sunday I sat and held Grandma’s hand as she died. She had advanced metastatic stomach cancer and was 90 years old. Unbelievably throughout her whole illness this was the first time she had ever been admitted. She had always said she wanted to stay at home but in the end the intractable vomiting was not able to be managed adequately in the community, so an urgent admission to the hospice was arranged with Grandma’s agreement.
When I went to see her on the Saturday in the hospice she said to me “I’m not sure I should have come here.” She was really feeling the sedating effects of the anti-emetics and analgesia, having been such a bright, cognitively intact lady and the fact that she couldn’t articulate herself properly was really frustrating her. As the over protective medical Granddaughter I reviewed her medication with the hospice doctor and agreed a non-sedating regimen of anti-emetics which I took care to explain to Grandma so she was able to understand. That was the last time we had a conversation.
The following day we received that dreaded phone call to come to the hospice as soon as we could and found Grandma comatose. There were no obvious reversible factors and she was commenced on an end of life care pathway after discussion with us. Grandma was put right at the centre that day. The nurses were fabulous and took so much care repositioning her, allowed me to help with some of her personal care and sat with us for ages after she died. This is my vision of perfect patient-centredness with compassionate, caring staff that were competent and genuinely seemed interested in the lady they were looking after even following her death.
The following Wednesday I attended an Oncology out-patient appointment to receive some scan results. My Oncologist had very kindly agreed to see me outside of the usual sarcoma clinic arrangements due to some unmoveable work commitments. I haven’t been seeing Oncology routinely for a number of months and feel disengaged from the whole process. I am sure one of the main reasons for this is because of the psychological distress going to clinic causes me. This may appear irrational but working yourself up before the appointment, being made to sit for hours on end surrounded by people at various stages of their cancer journeys and the whole ‘scanxiety’ process is draining emotionally to say the least. At my last clinic appointment it was the final time I had seen a dear friend and cancer buddy alive. She looked so ill and selfishly speaking seeing her in such a state of disarray was an uncomfortable window into my future.
I think DtM picked up on my reluctance to engage with Oncology anymore especially when he had to convince me it was a good idea for him to examine my abdomen. We discussed the distress that the clinic visits cause and how that could be alleviated. He himself described the Monday morning sarcoma clinic as “a cattle market”. Is this a patient centred way of practising medicine? I completely understand the rationale for seeing all the patients with a particular condition at one time as a clinician but I wonder if we could do better to relieve the associated anxieties? I am pretty sure I am not the only patient who finds the whole process distressing. Could we schedule clinic appointment times better? If a clinic always runs 90 minutes late I’m sure the timings could be altered to help reduce the amount of time patients spend in the dreaded waiting room. Could we reduce the amount of time patients wait for scan results? Possibly by making better use of technology?
I am lucky to be looked after by some lovely clinicians who try their absolute hardest to be patient centred, but on occasion the NHS system restricts this. Perhaps it is time for a whole new rethink of how we run things to make sure our patients are put firmly in the centre of our practice…