Measuring the effectiveness of Palliative Care: Conference Summary

St Christopher’s CARE was the venue for an eagerly awaited conference, Measuring the Effectiveness of Palliative Care, in partnership with Hull York Medical Centre.

The one-day event was succinctly summarised by one of the speakers, Dr Joanne Droney, a consultant and research lead in the Symptom Control and Palliative Care Team at the Royal Marsden Hospital.

She said: “What was really exciting about this conference is that with nearly 100 people in the room who are all passionate about outcomes, this shows there’s been a change and that outcomes really matter to people giving and delivering clinical care and engaging and designing clinical services to meet the needs of the patients.”

So, what changes have there been, how and why do outcomes matter and how should healthcare organisations be using outcome measures to design clinical services to best meet needs of patients?

The answers to those questions comprised the content of the conference, presenting delegates with a complete overview of the history, current status and future shape of outcome measures.

They were also, through several in-depth case studies, provided with practical, actionable insights to help them and their organisations understand how best to use data effectively to improve palliative care for individual patients, for service delivery and design, and for healthcare on a population-wide basis.

Dr Fliss Murtagh, Professor of Palliative Care at Hull York Medical School, set the scene, telling the history of outcome measurement and presenting the most persuasive case possible for why everyone in the room should be doing it as well as providing pointers as to how to do it most effectively for all.

“With a fast growing elderly population there’s an increase in pressure on services which places an even greater importance on using resources wisely, effectively and sustainably – we need to know the impact to do this. There is no imperative to do everything for everyone,” she said.

As a further incentive for all at the conference, Dr Murtagh said that patient experience is more central to the Care Quality Commission strategy than ever before, adding: “It’s not what’s the matter with someone but what matters to them – and outcome data provides assurance of that.”

She said that while historically, the only measures in palliative care used on a population level have tended to relate to hospital admissions and number of bed days, quality of life is starting to creep in, and she encouraged delegates to get ahead of the curve to influence commissioners.

This isn’t strictly speaking a new concept, either, Dr Murtagh said. Dame Cicely Saunders recorded individual clinical level outcomes back in the 1960s.

Collecting data is one thing, Dr Murtagh said, using it well is what will make it effective. Sharing the data with staff, telling them why you do it and what difference it’s making is a key element in ensuring its effectiveness.

“For a number of years we haven’t really had ability to demonstrate the impact of palliative care. We still have a lot of work to do. We have started to measure outcomes in patients with advanced illness and their families and have begun to look at service level – but I would really like us to begin to see how we can look at population level – who gets access into palliative care and whether we really deliver the impact we hoped for.”

How St Christopher’s uses data

The next speaker, Dr Alison Landon, palliative care physician at St Christopher’s, helped place the history of outcomes measurement in the context of St Christopher’s.

St Christopher’s has used Outcome Assessment and Complexity Collaborative (OACC) and User and Patient Reported Outcome Measures as well as more recently developing its own St Christopher’s Hospice Index of Patient Priorities. This is complemented by an individual patient assessment called How Are You, which includes all of the IPOS questions plus more about patient goals so as to focus on what matters to them.

St Christopher’s is now looking to add an app, Airmid, to its outcome measurement armoury. There was a question about the accessibility and inclusivity of this for those who may not have access to or feel less confident with technology.

Alison emphasised that St Christopher’s uses data in MDT meetings to see where action is needed. “It helps us to focus on patient outcomes and helps us prioritise time, focus our discussions and intervene where it is most necessary, flagging the patients who in the greatest need of attention.”

St Christopher’s also uses the data to communicate widely with stakeholders including in annual reports, on quality boards in wards and offices, funding and grant applications, as well as simply to share with team members.

How the Royal Marsden uses data to shape services

In the first of the case study presentations, Dr Droney, described how she and her colleagues at the Royal Marsden set out to find out how best to make data work for them and their patients and to improve their service more widely. They launched a six-month pilot project, collecting data and then analysing it.

She provided delegates with a concise summary of how they have used outcome measures.

Dr Droney explained: “We’ve used outcomes to really shape and deliver our clinical services, both day to day care for patients, and redesigning our service. In our day to day clinical service we use outcomes measures to define complexity, to triage which patients should be seen and by whom, and also to manage our caseload. We have outcome measures embedded into everything we do in our MDT and in our day to day patient handovers.”

With demand for palliative care expected to continually rise in the coming years, Dr Droney said effective use of outcome measures will help determine how best to cope. “We can now though use of outcome measures to decide who needs it most and use our resources effectively enable patient care in future.”

Work out the problem you’re trying to solve

The pandemic provided the backdrop for the next, joint presentation by Dr Heather Richardson, Director of Education, Research and End of Life Policy at St Christopher’s and Katy Nex Associate Director for health and Social Care and the lead for End of Life Care at Social Finance, an organisation that sits at the intersection between funders and providers, and has invested in ten end of life care services that have been developed using an outcomes based contract

Heather related how St Christopher’s was faced with an unprecedented scale of grief and mental health issues during COVID-19, for which it was not prepared.

St Christopher’s response was to facilitate Community Aid, a network of 600 volunteers, to support this huge cohort. This prompted the idea for a peer-led service. How to implement it, was a whole further question. It needed to be bigger than just the hospice and needed to be co-produced, potentially with whole new groups with which the hospice had never worked. Most importantly it would need input from commissioners of mental health services, not end of life care.

So when St Christopher’s approached Katy she looked at the case for change based on an outcomes based approach, asking straightforward questions like, ‘what’s the problem you’re looking to solve?’ and ‘’Are you a national outlier compared to other geographic areas and where are patients experiencing health inequalities?’ This involves really drilling down to find out the gap the proposed solution is looking to fill.

Katy said: “The NHS pays us on outcome measures, money focuses the mind and drives outcomes that matter. It focuses you on what’s important. If you’re not meeting outcomes, then you have to look at what needs to change. That means working dynamically. If the way you’re working needs to change, then change it.”

The afternoon session was devoted largely to demonstrating how four teams at St Christopher’s have used outcome measures to improve patient care service delivery.

Using data to measure patients’ goal attainment

St Christopher’s physiotherapist Gail Preston described how her department had used outcome measures to guide impeccable holistic assessment, using what matters to patients as the driver of everything they do – for the patients themselves, for staff satisfaction and for commissioners.

The team use the How are You? form. This helps them understand what really matters to people so they can then concentrate on trying to empower them. Gail explained that she and her colleagues do this using Goal Attainment Scaling (GAS) which establishes the difficulty of a task, how achievable it is and then records if it has been achieved.

Measuring what makes a difference

Joy Ross, Consultant in Palliative Medicine, St Christopher’s shared her experience of running a pilot programme using outcome measures positively to affect the heart failure service at the hospice.

Joy and her colleagues used IPOS and focused on three particularly tricky symptoms: weakness, lack of energy, lack of breath and poor mobility.

The data from the end of the pilot showed that while many of the patients had become more poorly, 85% reported that the palliative care they were receiving had made a real difference.

Furthermore, there were 35% fewer hospital admissions amongst this patient group and 51% fewer bed days, outcomes that please both patients and commissioners. Dr Ross says:

Dr Ross says: “The outcomes data meant we got funding for community heart failure nurses as we were able to use the measures to describe the patient need and the benefits. It helped me to understand the gaps in service provision and how to make better use of our limited resources.”

She added that having someone dedicated to collating and analysing the data was key to the success of the pilot. Outcome measurement is now embedded in the service and evaluation continues.

How data helps nurses plan care

Caroline Phillips Clinical Paramedic Specialist, St Christopher’s undertook to explore unplanned contacts at the hospice, a part of her work she enjoyed but realised was growing and was probably not best for patients.

Caroline explored the entire patient journey of 1% of the caseload in July 2021 (11 patients) and found 44% of their contact with the community teams were unplanned.

The hospice’s close relationship with London Ambulance was one contributor, along with the large elderly frail population in two of the boroughs it serves.

After establishing that phase of illness guidance was not being followed as closely as it could be, a plan was put in place for a dedicated Clinical Nurse Specialist (CNS) to be given her own discrete caseload of 34 patients and encouraged to proactively plan her follow-up appointments using the guidance. The rate of unplanned contacts fell to 26% and the nurse felt more confident planning these follow-ups.

Caroline said this trial had made the team look more closely at continuity of patient relationships and reinforced the message that patients need to be empowered to contact their GP or other professionals where appropriate.

Techies and clinicians make the data dream team

Helena Talbot-Rice, Rehabilitation and Wellbeing Consultant Lead, highlighted the challenge of ensuring the efficacy of data in an organisation that undergoes regular organisational change and has multiple stakeholders, advising delegates to ensure they don’t compare two different measures.

She now leads a team that sits down every Thursday to review the caseload data. It provides them with a chronology for each patient, the deaths and discharges and a wider picture across all of the London boroughs St Christopher’s works in. with this they can plan care and resources for the following week.

The team now has three years of comparable data and are constantly reminding colleagues of the importance of front-end data collection – that you only get out what you put in.

Helena provided delegates with some of her key learnings. These included, ensuring that you engage the expertise of both clinicians and techies. Knowing the right questions to ask was another key determinant of success.

She also reminded delegates of the difference between assessment and outcome – and the importance of understanding that one provides a snapshot, but without the second ‘photo’ provides no picture of change.

“You can’t deal with outcome data in isolation. It needs to be embedded in everything you do and you need to inspire staff as to its importance.”

Helena shared a number of case studies demonstrating real human outcomes – crucial for joining the dots and driving home the merit of measuring outcomes.

The final session of the day was devoted to some future-gazing with Dr Libby Sallnow, Honorary Senior Clinical Lecturer at St Christopher’s and Professor Catherine Evans Palliative Care and Honorary Nurse Consultant, Cicely Saunders Institute, King’s College London alongside Dr Murtagh.

Dr Sallnow urged delegates to look beyond the clinical and in particular symptom control to the wider factors that have an impact on people at the end of life.

“We know that health is not just determined by good clinical services. There are many more determinants that contribute to that and we’re used to thinking about social determinants of wellbeing and they matter just as much when people are dying, caring and grieving.

“These might be like relationships and networks people have, the resources they can draw on, going beyond how a carer is managing but looking at how a network or community that is supporting that person. We have to capture that for different people and services, and then at population level.”

The outcomes any healthcare organisation doesn’t measure can be just as important as those they do, Libby stressed.

“The really important things about outcome measurement, is that it is powerful. The things you measure end up counting and the things you don’t measure end up not being valued – so it’s really important to think about the whole landscape of measurement and outcomes, not just the easy ones to capture.”

Dr Evans followed up further on the theme of what hospices don’t know, encouraging them to think about placing greater emphasis on the gaps in their provision, not just focusing on what they know works well.

“One of the most important areas we should be looking at is better serving communities who don’t normally access palliative care, identifying who these people are, where they’re dying and what we need to know to make sure they get the care they need.”

That, she added, might require a major of piece of work involving giving members of the public the language they need to express their need in a language common to health professionals and vice versa.

The final word was left to Dr Murtagh: “Over the next five years, expect us to be looking at different models of care and to step outside of our silos to work with new partners. It will require us to be brave to work with different people.”

Find out about the packed conference programme at St Christopher’s