I’m writing to highlight another article in the BMJ written by a patient about goal setting. The article is very simple, about a patient raising the issue of taking up running in an asthma review. It is also very deep, and considers the difficulty of breaking into the nurse’s routine review to raise the issue.
The Quality and Outcomes Framework included many items on a checklist to cover in an asthma review, and even though we are post-QOF in Scotland, we are still using our QOF template.
Some of the suggestions for patient participation made by the article are already in use. For example our asthma nurse makes good use of the self-assessment tools on the Asthma UK website.
I think that the real challenge to our practice is to encourage patients to set their own agenda before their appointment, and to make that appointment a space where the patient’s goals are at the forefront. I plan to take the article in to our practice as part of our preparation for ‘House of Care’
As the patient writing the article says: ‘These appointment had never felt like a two way conversation where I had the space to ask as well as answer questions’. What a wake-up call to all of us who run chronic disease management clinics. This patient felt apologetic raising her goals at the consultation, and this was done at the end of the time with the nurse.
I felt so strongly that the patient goals should be the first, biggest thing about chronic disease management reviews that I took the article in to work, and gave it to our LTC nurses to read. We need to come up with a new language and way of that invites these conversations, that creates this teamwork between clinician and patient naturally.
By Kathleen Jamie from Frissure: Prose Poems and Artworks (2013)
At midnight the north sky is blues and greys, with a thin fissure of citrine just above the horizon. It’s light when you wake, regardless of the hour. At 2 or 4 or 6am, you breathe light into your body.
A rose, a briar rose. A wild rose and its thorned stem. What did Burns say? ‘you seize the flo’er, the bloom is shed’.
To be healed is not to be saved from mortality, but rather, released back into it: we are returned to the wild, into possibilities for ageing and change.
2016 – the year I went to the International Forum of Quality and Safety in Healthcare in Gothenburg. There were many memorable moments. It inspired a passion in me for showcasing quality improvement in primary care and in Scotland. These ambitions are still to be realised.
It also took me to Jönköping where I visited Qulturum, an amazing resource for bringing healthcare improvement ideas into practice. Here is where I first saw a description of a citizen’s jury, and a reasoned explanation for why they are valuable.
Before this, I had only seen single patients being asked about single issues. These lone lay people have attended meetings, to represent all patients, all demographics, all ethnographic minorities, and orientations. The agenda has been set by the medical establishment, and the lay person has been, at best, a commentator. Their participation has allowed organisations to tick the box on patient participation.
A Citizen’s jury changes this. First of all, a group of people get to debate the issues. This gets around the need for one person to represent all demographics. Secondly, this is more than a poll. The jury is provided with facts, as well as well reasoned and possibly opposing expert opinions. Members of the jury develop knowledge about a specific policy area. They may call expert witnesses to present evidence relevant to the issue being explored. Their viewpoint is therefore both independent and well-informed, and not fixed to one demographic.
The BMJ published an analytical article examining how citizens’ juries can review current medical practice. The article looks at the role of these juries in evaluating acceptability and legitimacy of screening policies. Relevant examples are provided.
I earmarked this article https://doi.org/10.1136/bmj.k5017 a year ago as an important analytical piece on using a systematic approach to improve care. It spoke to me about personalising care, and systematising how that is done, and about reducing wasteful variation by targeting resources on care that met patients needs. It also spoke about communication, and assessing patient need based on conversations.
The article tackled something else too; semantics. The authors debated the meaning of the term ‘best supportive care’, and whether it is the same as palliative care. ‘Best supportive care’ is a phrase that comes back to us from MDT meetings, where patient treatment options are systematically reviewed and agreed by experts. Patients who are too unwell, or who reject, active treatment of their cancer are allocated to ‘best supportive care’. What that means, who provides it, and whether it is different to palliative care is all a moot point.
In the responses to the paper, the debate continues; will this term become a euphemism for palliative care? And who decides what best supportive care entails, and who is responsible for delivering it?
Looking at the experience of patients with newly diagnosed lung cancer in Fife, it was clear that something was not right. Patients and those around them described uncertainty about who was overseeing their care. There was a lot of variation in actual care and support provided, but this did not equate to need, and was a product of a lack of a systematic approach.
The system that the team in Fife devised based itself on realistic medicine principals.
While this plan looks only at the care of patients with lung cancer, it could be a blueprint for the development of similar services. For example, on our small patch of the Hebrides, it would be sensible to use this approach for all patients requiring best supportive care.
The plan starts with a comprehensive, patient-centred assessment of need, led by a senior clinician. In Fife, where the team started with lung cancer patients, the assessment was a senior palliative medicine clinician. In the Hebrides, we would have to cut our cloth accordingly, and this may be a cancer care lead GP, or a MacMillan nurse. Our own experience is that patients like to know which GP and MacMillan nurse is overseeing their care. One key feature of the assessment is that it is about exploring understanding, discussing implications, and evolving the conversation towards care planning and support.
The second key step in Fife was communicating with all of the professionals identified in the initial plan, including setting up a Key Information Summary. Communication is so easy to do badly, and makes such a huge difference when done well.
My own experience is that this is an iterative process, and the cycle could easily be repeated as circumstances change. The experience in Fife was that over the first three years of the project, systematic change spread through palliative care service delivery.
A treatment that lacks evidence, does not have a realistic outcome or benefit, or that is not really useful for the patient, is a resource wasted. Saving the patient from unnecessary treatment also saves resources, which can then be redirected into support. The health economics of this change in focus is mentioned, but not described; the authors mention this as a barrier to achieving change, as the savings and investments are across organisations and budgets.
Their argument is that delivering what really matters to patients enables effective clinical care without overuse of resources. We know that sounds right, even if the healthcare economics are hard to pin down.
The British Medical Journal has sporadic articles under the theme ‘what your patient is thinking. In November 2018, the article was about control, and it was written by a woman called Judith Hendley, who has diabetes.
The article shows us how language in the consulting room can reduce patients to being their condition, a diabetic, a sufferer from diabetes, an unhealthy person, whose job in life is to control the only thing of interest to the clinician, their HBA1C.
She says ‘any kind of open question that allows me to feel understood and supported and not judged for the choices I make about how I manage my condition is more helpful. For example, “How are you feeling about your diabetes at the moment?”, “What is most important to you right now?”, or “What ideas have you thought about for how you could handle that?” ‘
This is where I think we are heading when we move to ‘House of Care‘ – shifting our focus to a style of working where the patient teaches us about their condition, and we help them deal with the important issues and problems that they bring to us.
In a small community, this is probably a bit easier, as we know our patients well as individuals, but the years of QOF have made us slaves to the check-list, the need to get in our questions about control early. Time to break that mould and bring in the new.
The article includes this wise guidance:
Listen to the language patients use and try to reflect it back to them in your observations or questions
Take the time to find out what matters to your patients—the things that they are worrying about might not be obvious to you
Think about the language you use when you are referring to or writing about people with diabetes or other long term conditions—would they find the language you have used empowering or disempowering?
Nearly a quarter of our patients are over 65 years of age. Many of them have multiple long-term conditions; as people age, the number of conditions that afflict them increase.
Long term conditions such as chronic obstructive airways disease and diabetes don’t go away. Management, rather than cure, involves routine work to avoid exacerbation events, detect and avoid recurrence, and to mitigate – and sometimes prevent – disease progression. For each condition, there are guidelines for the best management, and these guidelines have become a yardstick to measure performance of clinical teams.
If you have many conditions, each one with guidelines, and specialist nursing teams and clinics, then the work of looking after each condition becomes considerable. For our rural patients, each trip to the surgery or hospital can be costly and hard to arrange, calling on favours from friends and family. Medications all have side effects, and monitoring with blood tests puts clinicians in judgement of the success of your labours and of your compliance.
Over the last five years, there has been discussion in the journals about how to manage this dilemma. How should we measure burden of treatment, and how should we minimise it? There are measurement tools such as PETS (Patient Experience with Treatment and Self-management) – but this has 48 questions, and is surely devised as a research tool rather than something that can be slipped into General Practice
How do we optimise the workload for patients? The answer lies in the following big ideas:
Patient-centred rather than disease centred care.
Good communication about risks and benefits, including the treatment burden of each intervention.
Patient-centred goal-setting based on good communication.
It will be interesting to see how well we can move more in this direction as we contemplate ‘going live’ with House of Care this spring.
I have many experiences of managing uncertainty about the clinical explanation for the patient’s illness. Many of these patients get referred on to a consultant clinic, further investigations and expertise bring some sense of narrative or explanation, a plan is set out and treatment is recommended.
Sometimes, this doesn’t go well. The tests show nothing, the specialists discharge the patient without a diagnosis, suggesting another specialism. The patient ends up waiting for another referral, another test, another GP is consulted for new avenues to explore.The burden of worry grows, the burden of investigation, of waiting and of ineffective treatment gets heavier and larger.
Many of these patients have symptoms that appear to be neurological in origin. They impair function, such as mobility, use of a limb, speech, concentration, and stamina. These symptoms get labelled as functional disorders.
This patient writes powerfully about how two clinical teams approached his illness. The first team diagnosed a functional neurological disorder. It is an answer that describes the clinical picture, but provided the patient with no explanation for why he was ill, or what should be done about it.
The second team admitted that they did not know what was wrong, and this allowed the patient and clinical team to discuss the management of uncertainty. To quote the article ‘Although I was no closer to an actual diagnosis, I finally thought that my symptoms were being taken seriously. I felt reassured that a team … was working alongside me during my struggle with an unknown condition, and that … I was no longer facing this uncertainly alone.’
I thought of a young patient that I saw in the last decade, with a similar tale. They had a long and difficult journey with a mysterious illness, many tests and clinics, tears and anger, long waits for investigations, more appointments. The clinical journey was terrible. The amount of resources expended in that time seemed increasingly futile and burdensome. At what point could we have the ‘I don’t know’ conversation? I’m sure the number of referrals and investigations caused psychological harm as well as physical distress.
Eventually, after another second opinion, a consultant and the patient achieved a sense of teamwork. Instead of trying to create a clever label, they agreed that all possible investigations had revealed nothing treatable.
The big learning point from this point of view, and from our own case, is that sharing uncertainty with the patient, whilst acknowledging the severity of symptoms, can be very supportive for the patient. It can also allow for a more realistic approach to finding a path through the uncertainty.
For readers who want to find out more about functional neurological conditions, I recommend ‘It’s all in your head’ by Suzanne O’Sullivan. Written by a neurologist, it explores the difficult area of neurological symptomatology where there is no detectable physical cause.