NCRI 2015
Systematically assessing a patient's unmet needs
Prof Miriam Johnson - University of Hull, Hull, UK
The World Oncology Forum highlights three priorities for cancer patient care: firstly, good access to diagnostics; secondly, good access to cancer treatments but, thirdly, good access to supportive and palliative care. Whilst the first two are self-evident and well recognised – if you don’t get good diagnosis then you present late and you don’t do well; if you don’t get access to cancer treatments you don’t do well. But the last is not so well recognised, which is really odd, because cancer affects people in every domain of their life and the people who they love and who care for them. If I ask a patient in the clinic, ‘How are you doing?’ then the odd thing is that I will get on average one concern from that patient. But when you think about it that’s not odd really because why should they know what I think is interesting, why should they know what they bring to the doctor, why should they know that I’m interested in their information needs and their worries about their will or the legal aspects or the psychological distress. So I might get that one thing that they think I want to know. If I use a systematic approach to ask them about their needs I will get on average ten; that is a dramatic difference. So the session that we put on is looking at how to systematically assess these concerns and needs that are so important for patients and their family so that we can really address that third priority in the World Oncology Forum for good access to supportive and palliative care.
What kind of concerns do patients typically have?
It may be unresolved physical problems, so persistent pain, nausea, fatigue; it may be psychological distress: anxiety, future worries about death and dying. They may be having a spiritual crisis. These are really important things that they may not bring into the clinic they may not think I’m interested. They may have worries about work, finance; a diagnosis of cancer takes someone’s life and turns it upside down. They may be desperately worried about what’s going to happen to their husband or their wife if they become too sick to be able to look after them. These needs are wide-ranging and affect everything.
How does this systematic approach work?
There are two ways that you can approach this. Firstly you can help the clinician to have a structured approach to this and the second is you can help the patient to have that structured approach and signal to them what’s important. So one of the things that we’re presenting at the session is about the needs assessment tool progressive disease. Now this is a clinician rated tool developed by colleagues in Australia in the oncology clinic which guides the clinician to remember to ask about the different issues that might affect the patient. So not only physical symptoms but also about the difficulties of activity of daily living, the practicalities of washing, cooking, cleaning, going to the shops, these real practical things that we may forget to ask, and the psychological things and those difficult things about levels of sexual intimacy or body image that we can feel quite uncomfortable as clinicians to ask and to have something to remind us to ask is important.
The other important thing about the needs assessment tool is that it reminds us to ask about the carer’s concerns. Carers are these unsung heroes who have a huge burden to carry. They didn’t ask to be in this position and they’re having to watch someone they love terribly much, who is desperately important to them, go through this process and try and help as best as they can with no training, it just happens. And yet in the clinic, if they attend, they may be sat in the corner quietly, not realising that this is actually about their needs as well. So the needs assessment tool encourages us to ask about the carer’s needs.
Not only does it encourage us to say what are these needs and how concerned are we, it makes us do something about it. Because these tools can so easily just be tick-boxes but the needs assessment tool says, ‘Right, what are you going to do about it?’ So there’s a section in it that says, ‘Can I deal with this myself? Can I ask another member of the team to deal with it or am I going to have to refer this patient to a special service, for example, specialist palliative care?’ And it’s all in one quick tool that can be incorporated into clinical practice.
When it has been tried in clinical practice, not only was it filled in pretty completely, which is quite extraordinary because as clinicians we’re really good at not filling in the things that we think are a waste of time, but it didn’t take any longer in the clinical consultation to do this. But the most important thing is that when this was tested we found that the level of unmet need for the patients and carers went down.
The other way of looking at it is use the patient report measures, so something like the patient outcome scale, otherwise known as the palliative outcome scale, where the patient fills in a structured assessment. That’s really useful to do the first time you meet the patient, it gives us an idea of the breadth and level of the concern but then if we ask the patient to do this on repeat visits it helps us monitor whether we really are helping. Because often the patient might just give up telling us if we’re just not being very effective. The first time the patient says, ‘Oh the pain is not much better,’ the next time the patient says, ‘Well the pain is not much better,’ and then by the time the patient says, ‘Oh, it’s alright,’ I know they’ve given up. So something which encourages that patient to say, ‘No, we still need to work at this,’ is very important.
What do you make of the UK’s track record in terms of end-of-life care?
Historically we’ve been one of the first countries in the UK to take this seriously within cancer care. The difficulty is that if it only becomes focussed on the point of death then we lose the opportunity to help support people much earlier on in their disease. We know that people experience great concerns right from the point of diagnosis and so the concept of supportive and palliative care rather than end of life care actually is quite important. Then the end of life care flows naturally from the supportive and palliative care because we’re systematically routinely identifying the needs and then we can triage them as to who is best there placed to care for these needs. We can’t just leave it to the specialist services and we shouldn’t leave it until we’re absolutely convinced this person is dying because by then we have often missed that opportunity to support that patient and to prepare them for what’s coming and to help them live as long as we can. To help them live as long as they can as best as they can, that is one of the main things that we’re trying to do with this approach.
