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How and what do you measure to ensure quality palliative and end-of-life care?

Author: Professor Richard Harding, Herbert Dunhill Chair and Director of the Centre for Global Health Palliative Care, Cicely Saunders Institute, King’s College London, UK.
11 July 2017

Continuing the Salzburg Questions series that encourages a global discussion about the key issues affecting palliative care.

Today, 11 July, is World Population Day. Professor Richard Harding, Herbert Dunhill Chair and Director of the Centre for Global Health Palliative Care, Cicely Saunders Institute, King’s College London, UK, explores the fifth question in the Salzburg Questions that asks how and what you measure to ensure quality palliative and end-of-life care.

Quality and outcomes matter more than ever

It is 50 years since Dame Cicely Saunders began to help the world think differently about ‘what matters’ in health care. Many things have changed in that time. Some major shifts have been the requirement of health services to measure their effectiveness and prove they make a difference. Others include the introduction of ‘patient-centredness’ in medicine, nursing and allied health professions; a growth in ageing and complex comorbidity that is projected to increase rapidly; and a global expansion from palliative care’s origins in terminal care of cancer patients in a handful of high-income countries.

The majority of countries (regardless of wealth) are facing resource restrictions in health and social care. More than ever, we have a duty to patients, families, funders and policymakers to ensure that we measure what matters and the quality of our work.

The benefits ­ – and risks – of measurement in palliative care 

We have a wealth of evidence of what matters to our patients and families – and it is usually very different from other fields that measure ‘outcomes’ in healthcare. For people using palliative care services, in addition to the outcomes that might matter in other groups (such as pain, anxiety, depression), we have outcomes such as spiritual wellbeing, family support, meeting preferences for place of death, advance care plans, as well as for a wide range of common symptoms. The challenge we face is that we care about all of these outcomes for each patient – not just one or two. And our patients and families are often very sick and it would be inappropriate to ask them to complete long outcome measures.

The science of measurement can be complex – patients, families and clinicians want to know that a simple, brief and valid tool will quickly and accurately help them to identify their main symptoms and concerns, inform care planning, and monitor their response. The field of palliative care needs to know it can conduct high-quality research based on well-designed and evaluated measures. Without good science underpinning our measures we risk them not reflecting what matters to those they intend to help, or not being seen as useful and therefore not adopted in routine practice by care teams. And crucially, badly designed and poorly tested tools risk not picking up meaningful changes for patients and families under our care – and therefore giving us a false impression that our care has had no effect.

Outcome measurement – a global story of success in palliative care 

Outcome measurement has become a standard around the world – for example informing the funding tariff in the UK, and being a requirement to be an accredited 5* hospice in South Africa. An example of a scientifically robust measure is the Palliative Outcome Scale (POS) – with more than 8,000 registered users in 126 countries (see www.pos-pal.org). Other common measures include the Edmonton Symptom Assessment Scale (ESAS), and FACT-Pal.

Outcome measurement enables clinical services to drive up quality and to underpin research. Most importantly, the use of outcome measures has enabled us to focus on what matters to patients and families, while building the evidence base for the effectiveness and cost-effectiveness of palliative care. Choosing robust measures, and ensuring mechanisms to allow data to drive better practice, are essential in achieving this.

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