Health economists must become more involved in palliative care research to help ensure better use of health resources in end of life care, according to a leading specialist.
Professor Irene Higginson, Director of the London-based Cicely Saunders Institute, says end-of-life care often does not prolong peoples’ lives, and can be traumatic and expensive.
“We need to get better at measuring the cost effectiveness of care provided to people at the end of their lives,” she told Croakey’s correspondent, Jennifer Doggett, during an interview at the 12th Australian Palliative Care Conference in Canberra today.
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Coffee and collaboration: vital ingredients for better palliative care
Jennifer Doggett writes:
“It’s all about the coffee machine,” says Professor Irene Higginson, when asked about her work as Director of the London-based Cicely Saunders Institute, the world’s first purpose-built institute of palliative care.
When building the Institute, Professor Higginson says a key focus was on bringing clinicians and researchers together with consumers, carers and families.
“We realised that by creating a single place in the building where everyone had to come to get their coffee, we would facilitate interaction between these key stakeholders in palliative care.”
This simple design feature has, she says, helped the Institute integrate research and clinical practice and promoted interactions between consumers and palliative care professionals.
Professor Higginson, who also holds a Chair of Palliative Care and Policy at Kings College London, is a passionate advocate for the palliative care sector and has worked globally to promote the need for a better evidence base to inform the development of palliative care policies and programs.
She thinks that over the past decade Australia has made impressive progress in a number of areas of palliative care. In particular, she points to the dedicated funding for hospices as an important step in securing their future role within the health system.
She is also impressed by the ground-breaking work being done in measuring outcomes in the palliative care and hospice sector. “Australia has the potential to lead the world in this area if you continue to focus on this area,” she says.
Improve education and training
One challenge Professor Higginson identifies for Australia is in the area of education and training for health care professionals. She has found that our doctors receive much less training in palliative care than do those in the UK.
“A doctor could have as little as two days of training in palliative care in their undergraduate years, with no ongoing education during their professional life. Australia really needs to focus on increasing the amount of training doctors receive in palliative care both at the undergraduate and professional development levels,” she says.
Another major challenge, which is facing all developing countries, is how to fund the increased need for palliative care resulting from the ageing of the population.
She sees a role for a broad community debate on values and priorities to inform resource allocation decisions within the health sector, and does not believe these are issues that individual doctors should address.
Professor Higginson identifies health economics studies as a key gap in existing palliative care research. “Most western countries spend around 20% of their total health care budgets on providing care in the last year of people’s lives,” she says.
“Yet we know that often the care provided during this time does not meet the needs of consumers or does not prolong their lives. I’ve seen examples of cases where people have been taken off for expensive brain scans on the day they died, even when their death was predicted.
“This is an unnecessary use of resources and also can be traumatic for patients and their families.
“We need to get better at measuring the cost effectiveness of care provided to people at the end of their lives. This means we need to find accurate measures of quality for this stage of life.”
The first step to increasing the involvement of health economics in palliative care, according to Professor Higginson is to address the two major problems with the use of QALYs (quality-adjusted life years) to measure outcomes in palliative care.
“Firstly, QALYs measure functionality and not symptoms or quality of life. Functionality is not always a good indicator of people’s experience in living with an illness or disability,” she says.
“Secondly, QALYs are based on a concept of time which is not relevant to palliative care. Perceptions of time and the value of time change dramatically when people are close to death and we need a measurement of quality which reflects this.”
In reflecting on the professional silos that characterise so many areas of health care, Professor Higginson describes how palliative care may have something to teach the rest of the health system.
“Palliative care is often provided to patients in conjunction with other forms of care, so palliative care professionals are used to working within an existing care team to coordinate the care they provide,” she says.
“While this may be difficult in some cases, it means that palliative care provides some positive models of successful collaboration across traditional professional boundaries. There’s a lot that the rest of the health sector can learn from palliative care.”
Professor Higginson will be part of the conference’s closing plenary session at 1.30pm on Friday answering the question ‘What’s the one thing you would change to make sure palliative care becomes everybody’s business?’
• You can track Croakey’s coverage of the conference here.
