What the doctor learned

This needs no commentary – just worth reading about the work of being a patient and managing a disease.

https://www.shinecancersupport.org/programmes/read-blog

A brief format to be used when consulting with patients

By Glenn Colquhoun, Playing God: Poems about medicine (2002)

The patient will talk.

The doctor will talk.

The doctor will listen while
the patient is talking.

The patient will listen while
the doctor is talking.

The patient will think that the doctor
knows what the doctor is talking about.

The doctor will think that the patient
knows what the patient is talking about.

The patient will think that the doctor
knows what the patient is talking about.

The doctor will think that the patient
knows what the doctor is talking about.

The doctor will be sure.
The patient will be sure.

The patient will be sure.
The doctor will be sure.

Shouldn’t hurt a bit, should it?

A systematic approach to providing best supportive care.

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.

Control: What is in a name?

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?

You can read the article here: https://doi.org/10.1136/bmj.k3119

Guidelines and the burden of treatment.

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.

References:

Honesty and uncertainty: A patient writes.

https://doi.org/10.1136/bmj.l6803 (Published 08 January 2020)

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.

https://doi.org/10.1136/bmj.l5918 (Published 15 October 2019) is a good partner article, where a doctor shares his experience of using the words ‘I don’t know’.

How shared decision making cuts costs – a worked example.

I read with interest about Bernhoven Hospital in the British Medical Journal last year. The description of the ethos of the hospital is a good fit for what I aspire to in the provision of care in our community hospital. The beautiful idea is that ‘good healthcare starts with a good conversation – in this hospital we decide together’.

To read the original feature article: https://doi.org/10.1136/bmj.l5900 

The hospital, like many others in Holland, was trying to manage rising costs, but instead of cutting services, it aimed to reduce unnecessary interventions by focusing on patient-centred care and management of risk.

The article includes flowery imagery and the pictures of the beautiful wild flowers around the hospital, and the tone of the writing implies a hospital nirvana. The vignettes of two patients give us a little more insight of how they have pursued this agenda; it is a highly complex system, which has taken years to grow and will continue to evolve.

One thing that really caught my attention is that they started with a vision, which they have stated clearly. The medical director and his team set out to create a climate in which their vision could thrive.

Examples include good access to senior decision support and a suite of decision-making tools. They stopped paying clinicians for procedures done, and provided a fixed salary instead. They included medical staff as hospital directors, and patients as shareholders. They added telemonitoring, and online support, and gave patients more control over their follow-up arrangements. They rolled consultant clinics out to the community and built better multidisciplinary teams with allied health professionals. They set up weekly brainstorming sessions that didn’t just involve the interface between primary and secondary care; they included patients as well.

Lead by the vision, instead of focusing on the cost of components, they have taken a leap of faith. Looking at patient-centred care as an ethos has bought best value to patients and to the health care service.

When I read this article, I recognised with joy many of the values I hold myself; that patient-centred care and shared decision making is a core attribute of a successful health care system.

Our community hospital and our GP practice incorporate this style of work, but it is not up-front and in our faces. We do not explicitly reference this cornerstone with every new change in care provision. I have no clear idea where patient-centred care sits within our NHS board – the stated aim is ‘The best at what we do’ – which is not that specific.

This is a complex and evolving process, not one that can he copied and emulated with ease. I would love to go on a study visit to see how this works, perhaps with some senior managers from our own health-board.

The brand of Realistic Medicine in Scotland seems to be forging along the same path. The annual report published in April 2019 is called Personalising Realistic Medicine. It sets an expectation that the NHS in Scotland will engage clinicians, managers and patients in the redesign of services, enabling the delivery of realistic, patient-centred, therapeutic goals.

This worked example shows that putting values ahead of cost has lead to better patient experience, and that has turned out to be financially prudent.