Scots over 70 missing out on palliative and end of life care

Most people aged 70 and over in Scotland are missing out on palliative care as healthcare professionals can find it difficult to know when to introduce this approach in older people, according to a new report from the University of Edinburgh and terminal illness charity Marie Curie.

Published in the European Journal of Palliative Care ‘Why do older people get less palliative care than younger people?’[1] the report examines the end of life experiences of 65 patients in Scotland who were diagnosed with brain and bowel cancer, liver failure and frailty. The report concludes that more effort should be made to identify triggers for palliative care in older people.

The findings suggest that the introduction of a palliative care approach or referrals to palliative care services didn’t happen because many older people were not aware about this type of support.  Some healthcare professionals did not think it relevant. This is unlikely to be a directly ageist response, but rather that there were less clear signs which would have indicated a patient’s condition might soon deteriorate and that they would now benefit from palliative care.

The study highlights there can be a lack of a clear diagnosis of dying as people in this age group are viewed merely as ‘old’ or ‘infirm’. Frailty, the most common condition of someone aged 70 or over in the study, is a terminal condition that many older people can develop and they would likely benefit from palliative care to improve their quality of life. For people with conditions other than cancer there is often an assumption that palliative and end of life care would not benefit them.

The report authors conclude that further research is needed to understand age-related inequalities. Co-author Professor Scott Murray University of Edinburgh Primary Palliative Care Research Group and St Columba’s Chair of Primary Palliative Care said: “People need to know that palliative care has something to offer everyone so that they can live as well as possible wherever they are. It can prevent much unnecessary distress by helping people with whatever worries them most, whether they have cancer, heart failure or living with frailty.”

Dr Anna Lloyd, research fellow at St Columba’s Hospice and part of the research team, said: “The research we have undertaken has highlighted the need to help healthcare professionals recognise when people may be helped regardless of diagnosis or age and how palliative care can support patients at all stages of many illnesses. Palliative care can be beneficial to people living with many conditions or illnesses whether they have months, weeks or days left. At St Columba’s Hospice our Centre for Education & Research already works closely with the NHS and other medical and healthcare providers to train practitioners and we are pleased to be contributing a solution that helps to alleviate this problem.”

The study echoes findings of a report from the Personal Social Service Research Unit at the London School of Economics and Political Science (LSE), commissioned by Marie Curie.[2] The report published in April 2015 revealed serious inequities in terms of who receives the right care and who doesn’t. Richard Meade, Marie Curie Head of Policy and Public Affairs, Scotland, said this latest study is concerning since the need for palliative care is fast increasing as the population ages with the number of Scots aged 75 or over predicted to increase by 85% by 2039 to over 800,000 people. Richard Meade comments: “Everyone who can benefit from palliative care should get access to it. Yet, this report worryingly highlights that older people, especially those who are frail, are missing out on that care. We fully support the Scottish Government’s vision that everyone who needs palliative care will have access to it by 2021. To achieve this, we would urge the new health and social care partnerships to assess the needs of older people approaching the end of life in their localities and to make sure they are getting the care they need.”

The findings of this report will be discussed at a seminar in Edinburgh on 15 September. ‘Challenging Inequities in Palliative Care’  will also discuss barriers faced by those from lesbian, gay, bisexual and transgender communities, black, Asian and minority ethnic communities, people from deprived backgrounds and those living in social isolation.