Blog: Improving palliative care for people with chronic breathlessness

Published: 9 Sep 2019

Author: Miriam Johnson
Blog: Improving palliative care for people with chronic breathlessness

Breathlessness is a serious, frightening condition. When it is bad, people fear they are dying. My Churchill Fellowship in 2015 explored how palliative care services can better support people with this chronic and misunderstood condition.

Many people live with the daily burden of chronic breathlessness syndrome, a disabling breathlessness which occurs despite treatment for the underlying medical disease that causes it.

 Although there are a number of palliative treatments to help breathlessness, we need better research to find better solutions. Palliative care research is hard, and a lot of existing studies are small. Even though many patients would like a chance to help, often they are not offered the opportunity to say ‘yes’ or ‘no’ for themselves. We need large studies to give us the answers needed by people living every day with this symptom.

Learning from palliative care services in Australia

 In Australia, I went to visit the Palliative Care Clinical Studies Collaborative (PaCCSC), to learn and bring back ideas about how to recruit patients to clinical studies. I aimed to learn:

  • How PaCCSC sites get research into everyday clinical practice at their recruiting centres
  • What research team members found led to good recruitment
  • How PaCCSC helps recruiting site clinical teams
  • The impact of their research on patient clinical services
  • What particular things need to be thought about for breathlessness studies

I spent four weeks visiting several recruiting sites and the co-ordinating centre. At each site I met with the site principal investigator (consultant palliative physician responsible for the trial at their service), their research nurses, study co-ordinators, other clinicians, and where possible, the Directors of Research at the institution.

 I found that successful recruitment to multi-centre clinical trials required commitment from the institution, the site principal investigator, research nurse and clinical team. Particular considerations for breathlessness trials were important because of the difficulties experienced by such patients. Multi-centre research was helped by a formal collaboration  between interested clinicians, and benefited from a central co-ordinating unit such as at PaCCS. These findings are directly applicable to the UK and cover areas that we have already identified as issues.

 The organisation must understand that clinical service, education and research need to act together to prevent ongoing use of outdated treatments and to ensure best patient outcomes. Research must be seen as a legitimate activity for clinical services, and the time taken to help research should be taken into account in clinicians’ workloads.

The site principal investigator must be committed, and have a good relationship with the research nurse and the clinical team. They must be an inspirational, resilient leader who can make changes if needed. The PI must be supported by the co-ordinating centre to do this. 

The research nurse is the bedrock of the team (as one research nurse interviewed said, “no research nurse, no recruitment”), supports the research study participant through study procedures and spares the clinical team much of the work of data collection. Both clinical and research skills are important and the research nurses need to make regular and frequent contact with the clinical team to ensure trials are kept in the mind of the doctors and nurses ‘on the ground’.

We know that patients do better in a unit which takes part in research studies research active unit whether or not the patient is participating in a trial. The over-riding ethos should be, "This is a research unit - this is what we do." However, where research has not been part of a service’s practice, culture and attitudes take time to change, and perseverance and consistency are needed to develop an evidence-based clinical team. Regular feedback of research trials and results is important to develop pride in being part of a research unit.

For breathlessness studies in particular, the team needs to be able to respond quickly to get interested patients on to the trial, as their condition may vary over a matter of days. As many study assessments as possible should be offered by phone or with a home visit, the follow up time kept short, and the number of assessments kept to the absolute minimum. Good relationships with other relevant specialities, such as respiratory medicine, are important.

PaCCSC itself provided a research community with peer review, knowledge, standardised procedures and processes, advice and mentorship, which helped build up palliative care research capacity. Multi-centre research was seen as the only way to conduct large clinical trials that gave results that change everyday clinical practice. There was a palpable sense of recruiting sites being part of something big, and of contributing to something important – especially when trial results come out with real answers to important clinical questions: “We helped find that out…,” “We are part of changing practice round the world…”

A woman sits on a bench with a rose bush behind her

An image from Bringing Breathlessness into View, an exhibition at the Hull York Medical School. The exhibition gives an artist’s impression of one person’s experience of living with chronic breathlessness.

How I’m putting what I learnt into practice

 Since my return, I have overseen the development of the new Wolfson Palliative Care Research Centre at the University of Hull, and chaired the Hull Health Trials Unit (HHTU) Implementation Group. Although we have not gone down the road of a dedicated palliative care trials unit, the HHTU, which opened its doors in 2017, is developing particular expertise in breathlessness trials. Currently it is helping to run three of these, including a large placebo-controlled trial of long acting morphine tablets in people with chronic breathlessness across about 15 sites. We have embedded the lessons learnt on my Fellowship so that:

  • It is the patients themselves who have the opportunity to say yes or no to taking part in a trial
  • The trial designs are tailored for people living with chronic breathlessness
  • Recruiting sites are supported by the central co-ordinating unit and feel part of a trial community

For too long, people with palliative care needs have had to make do with treatments and other interventions that have been either tested on patients who are less unwell than they are, or have not been tested at all. Given the real risk that we may cause more harm than good, we must do all we can to provide people with advanced disease treatments for which we understand the balance between benefit and making things worse.

Read Miriam's report

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