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What future research is needed to improve care for people with advanced illness and towards the end of life?

Author: Irene Higginson, Professor of Palliative Care & Policy and Director of the Cicely Saunders Institute, King’s College London
10 November 2017

On this, World Science Day for Peace and Development, the #allmylifeQs series launches its final, and perhaps most important, question: What future research is needed to improve care for people with advanced illness and towards the end of life?

Irene Higginson, Professor of Palliative Care & Policy and Director of the Cicely Saunders Institute, King’s College London, explains why research is so important, and what you can do to support it.

Palliative care puts the person before the disease. (View our video here). Our role is to look after the whole person and those close to them, and this means assessing and offering the very best in therapies, treatment and care, to help people live well despite their illness as well as controlling symptoms at the end of life. The person-centred approach does not mean that we have it right yet; it should mean striving to improve what we do.

As a doctor trained dually in palliative medicine and public health medicine, I have long been concerned that the treatments, therapies and services that we can offer patients and families need to improve. In the future, I want to be providing patients and families with better treatments, therapies and care, especially in the hard to manage areas.

Research needs to test and discover better treatments for the many complex physical problems and symptoms that people have, such as breathlessness, fatigue, frailty, pain and nausea, as well as for emotional, social and spiritual issues. There is a need for research into better ways to support those who currently miss out on the best in palliative care, especially those groups that form part of growing populations (such as older people with multiple morbidity) who are most likely to require palliative care in the future. We also need to be realistic. Health and social care resources are constrained in many countries, so we need research into solutions that are cost-effective. Research into better services is also vital, as services are a key component to influencing quality of life for people.

Those close to the patient often provide so much, and research into ways to support them is urgently needed. We work closely with our Patient and Public Involvement (PPI) group, whose feedback and insights enable us to steer our research according to the needs and concerns of the people who will directly benefit from advances in palliative care practice and provision. Pam Smith, one of our PPI members, describes her reasons for becoming involved in the work of the Institute:

“Without ongoing research into palliative care, the lives of the people suffering from advanced illness, and also the lives of their carers, will never be improved. A compassionate society cares about the people who live in it!”

Scientific discovery takes time to progress. Palliative care has had some major successes over the years, but now we need to be thinking about what people will need in five to ten years’ time, and what research, investment, workforce and capacity are required to deliver this.

So with this #allmylifeQs, I am asking all of you who read this to speak to four other people today about why you think that research is important, and what you can do to support it.

Links and Resources

  • Watch a video in which Professor Higginson describes the principles of palliative care.
  • Follow the global dialogue on Twitter using the hashtag #allmylifeQs. The nine Salzburg Questions have been debated throughout 2017.
  • Read all nine posts published on the EAPC Blog in the Salzburg Questions series.
  • Cicely Saunders Institute.
  • Follow Prof Irene Higginson @ij_higginson
  • Follow Cicely Saunders Institute @CSI_KCL

Coming up on the EAPC Blog . . .
To mark Human Rights Day on 10 December 2017, a final blog post will draw together the key issues of the nine questions discussed in this series.

See more articles in Research

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