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

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.

Planning good health with patients

I’m just getting myself into the right frame of mind for the training we are going to do for our Benbecula House of Care project. I’ve also been stockpiling journals with articles that have caught my eye, and there has been a theme. Many of them are about empowering patients, and dealing with clinical complexity.

One of the articles stood out for me tonight. It discusses how we help patients lose weight. Much of the article covers change theory, identifying motivators for change, setting goals, signposting and support.

In the top right of the third page was the most interesting bit of all: a bubble diagram. How simple, how powerful, for the patient to set out what they wish to focus on.

Bubble diagrams can be used to help patients decide what to discuss. Blank bubbles allow people to tailor the topics to meet their own needs.

There are loads of bubble templates on the internet, in the shape of trees, or networks, beautifully designed and probably copywrited. But as you can see, a pen and paper and an open mind are fine.

The article? It was called ‘Top Tips: talking about weight’ published in Guidelines in Practice from February 2019.

Patient safety and co-production, from the BMJ

I was very excited when I read about this study, about improving inpatient safety by systematically improving communication with patients and families during ward rounds. I could see immediately how this could be transferable to our own setting in the community hospital.

The entry in the paper BMJ is quite short and humble, and it is worth visiting the online version for more detail, and to see the short video clip introducing the key researchers, who describe the design and outline of the project.

https://www.bmj.com/content/363/bmj.k4764

Structured ward rounds aren’t new, and neither is the concept of ‘no decision about me without me’. No-one would deny that families are an important part of the team providing care to patients. Using a structured communication tool has been embedded in our practice for many years. Teach-back is an excellent way of ensuring that the person receiving information has truly understood. The genius idea was to do all these things as a single process, and designing the intervention with service users.

 

 

 

The lead researchers are from the Children’s Hospital in Boston, Harvard Medical School, Mothers against Medical Error, and the Patient-Centred Outcomes Research Institute. They set out to introduce a method of improving communication with families. Their theory that this would improve outcomes was based on the observation that improving communication between clinicians improves safety, and that poor commmunication is a leading cause of adverse events.

The study group was made up of over 100 people, patients, nurses, family members, doctors, health literacy experts, researchers and medical educators. They co-produced the structured ward-round tool, to be used on ward rounds where the family is present. The communication tool is called I-PASS. They also produced a training package and a range of support tools including patient information leaflets.


A word about communication tools: We use SBAR locally, whereas I-PASS is the tool used in the study. It is designed to be used for structured communication with patients and families. It focuses more on the recommendations, and adds synthesis and teach-back as part of the communication tool.

I–Illness severity (family reports if child was better, worse, or same); nurse input solicited
P–Patient summary (brief summary of patient presentation, overnight events, plan)
A–Action list (to-dos for day)
S–Situation awareness and contingency planning (what family and staff should look out for and what might happen)
S–Synthesis by receiver (family reads back key points of plan for day, prompted by presenter, supported by others as needed)


The measures used were:

  • Outcome measure: Looking at error rates, and harmful errors
  • Outcome measure: Patient and family satisfaction
  • Balancing measure: Length of ward round
  • Balancing measure: Amount of teaching on ward round.
  • Process measure: Communication processes on ward round.

Although overall error rates were unchanged, harmful medical errors decreased and Satisfaction scores rose and communication processes improved. There was no significant impact on ward round length or teaching on ward rounds.

My own experience over the years has been that I have shifted from asking family members to leave the room during rounds, to asking if they can stay. The conversations around progress and plans for care involve families and patients equally. Bringing in students adds a dimension of teaching, usually in patient-centred language, and it enriches the discussion. These conversations lead to patient-centred decisions, which are understood by relatives as well as the patients.

In the words of Helen Haskell, president of Mothers against Medical Error, one of the lead researchers, ‘It doesn’t just feel good, it can help improve the safety and quality of care – I would add, improve health literacy, agency and opportunity for realistic, patient centred care to be forefront of care planning. This study is a model of how families and care provides can co-produce an intervention to make care safer and better.’

And more realistic.

 

The Handbook of Non-Drug Interventions

Thank you to the British Journal of General Practice for pointing me in this direction. HANDI is a project launched by the Royal Australian College of General Practitioners in 2013, to promote effective non-drug treatments. Now the RCGP is partnering with the RACGP to bring this approach to the UK.

https://www.racgp.org.au/clinical-resources/clinical-guidelines/handbook-of-non-drug-interventions-(handi)/handi-interventions

The HANDI resource collects evidence based non-drug interventions relevent to and practical for GPs. Many of the interventions on the webpage are common-sense, and practical. Many of them are treatments I already use or prescribe, like the Epley manoevere, or wet combing for headlice. There are other recommendations that I had previously dismissed, not realising that there was an evidence base.

Delivering non drug interventions in practice promotes health literacy and reduces clinical dependence; for these interventions to be effective, patients and families will need to understand how they will help, and can apply the learning in the future.