The collection and use of patient-centred information
Differing views and practices existed in relation to the collection and use of patient-centred information. One team member expressed particular dissatisfaction regarding the collection and/or sharing of such information, when occasionally some patients may be presented at the MDM without team members having any prior knowledge about them: "I mean there are certain recommendations that you should make, I mean they’re common sense recommendations anyway which is firstly that somebody who knows the patient well is available at the MDT to present the case and knows all the various social circumstances, who knows the family situation, who knows what the patient’s wishes are because if that information is not available - we can make a decision based on the science, we can make a decision based on the imaging but that’s not a patient-centred decision … for me the whole purpose of getting everyone together is because we’re not robots and because patients do matter and they’ve all got, they do have their opinions and they’ve all got very different social, economic circumstances and different religions" (Dr Simons, Team B).
A nurse from Team A felt that the quality of patient-centred information was related to the professional group of the team member preparing the case for discussion: "I think that probably in most patients you could do with more information on their social situations but I think that is to do with whoever fills out the form and my bias would be that the nurse specialist who fill them in probably put in quite a bit of information as usually is our nature and I would say that maybe junior registrars or junior doctors may put in what they see as essential" (Nurse Roberts, Team A).
Most of the members of Team B stated that collection of patient-centred information was a particular responsibility of the CNS and recognised the value of having such information when making treatment decisions: "a lot of the nurse specialists that report in, some of them are extremely good at making those assessments and they will often say to us that patients and their relatives don’t want any active treatment, we’ve spoken to them about it and they’re quite happy to have palliative treatment, and that’s fine. We don’t argue any further, and the nurse specialists on the whole will act as an advocate. It sounds rather judicial, but on the basis on the patient’s wishes, we do that" (Dr Jones, Team B).
Within Team A, both CNS’ discussed how they saw it a part of their role to collect patient-centred information and present it at the MDM: "I always feel as a CNS - this is a really big part of my role to get the patient’s wishes over because - I see that as a form of support" (Nurse Roberts, Team A). However, other team members reported that collection and presentation of such information in the MDM should be the responsibility of whoever refers the patient to the MDT: "it’s very much the person that refers the patient to the MDT what they’ve put on the form or what they say in the meeting and that’s why it’s so important that someone is there to know what the patient, to represent those patients wishes" (Dr London, Team A).
Two patients (both retired healthcare professionals) recalled being asked specific questions about themselves which they assumed would inform decision-making about their treatment. James stated: "Oh yes all the time I’ve been asked these questions - who’s at home, who looks after you, what will things be like when you are at home and also my previous medical history - I think they might influence what decision the MDT comes to but again that’s entirely what you’d expect them to do having the information made available to them" (James, Upper GI cancer patient). Celia described how her living conditions and caring responsibilities might impact on the treatment decisions made: "in my case it was important because [I live in] a house with stairs and steps and complications and an elderly husband who partly needs looking after. So there was quite a bit of that being thought about" (Celia, Upper GI patient).
Several patients (all without knowledge of medicine) recalled their discussions with team members to be solely clinically or tumour-focussed, rather than person-focussed. Catherine stated: "No they didn’t really ask me anything about my life, didn’t ask about children if I remember, the only thing, at the initial interview I had with one of the team when I was told that this is what’s going to happen - and I said `oh, well I’m a carer for my Mum’ and they said `you’ll have to sort that out", that sort of attitude, you can’t do it - have you got somebody in mind, and I said `oh yes I’ve got sisters, I’ll sort that out’” (Catherine, Gynaecological cancer patient).