PALLIATIVE care promotes quality of life for people with serious illnesses and for their families. It is an approach to care that brings together a broad team of health and social care professionals to manage people’s needs including, for example, doctors, nurses, social workers, physiotherapists and chaplains. Their input includes supporting family carers of those living with serious and progressive illness.
Palliative care focuses on more than medical issues such as pain and symptom management. It also aims to provide ‘whole patient care’ with support for practical, psychological, social and spiritual needs, including into bereavement.
Although often linked to end-of-life or hospice care, palliative care is widely recognised as having important potential benefits throughout the course of a serious and progressive illness.
Palliative Care Week, taking place this year from September 13-19, is an important opportunity to raise awareness and increase understanding of the quality of life benefits of palliative care. This year’s theme is Palliative Care: In This Together.
Palliative care needs to be person-centred and available whenever it is needed. This means that access to services should not be dependent on factors such as age, diagnosis, prognosis, insurance coverage, income or location. Not everyone will need to see a specialist to receive palliative care; in fact, the majority of Irish people with serious illness can, and do, have their needs supported by health care professionals in the community such as GPs, Public Health Nurses, social workers, paramedics and nursing home care staff. Input from specialist palliative care services is only required when people have more complex care needs.
Ireland has a long and proud history of providing palliative care, deeply rooted in the voluntary sector and strong hospice movement. Ireland consistently ranks high in international comparisons of palliative care access and quality. In 2001, Ireland became one of the first countries to publish a dedicated palliative care policy – a framework which continues to guide service planning and delivery. More recently, the Sláintecare report – a ten-year strategy to reform the health system and deliver universal healthcare in Ireland – recommended that universal palliative care should be provided within the first five years of the plan. If the recommendations are implemented, Ireland would be the first country in world to provide a legal entitlement to palliative care based solely on need.
Urgent gaps remain
Despite these substantial achievements, much more remains to be done. Research shows that 70% of Irish people with serious illness prefer to remain at home, provided that they can access appropriate services and supports. However, only a minority who wish to die at home are able to do so.
A recent study also found substantial unmet need in treatable problems in the last year of life, including unmanaged pain and depression. There are also ongoing differences in access to specialist palliative care services by region and diagnosis.
Some of these inequities are based on how services were first developed in Ireland.
Inequities in access have also been driven by more recent policy developments such as inadequate funding during the austerity years. Ireland is also the only country in Western Europe to not provide universal access to primary care, which means many people face financial barriers when accessing services such as GP care.
One of the most pressing issues is a lack of access to community-based services outside of regular 9.00am to 5.00pm office hours. Gaps in services during the out-of-hours period, even more difficult during holiday periods, often undermine patients’ and carers’ confidence that they will be able to access appropriate care and support at home. They are also directly linked to poor outcomes, including unnecessary A&E visits or hospital admissions, reduced patient and carer satisfaction, and prolonged grief among bereaved family and friends. The challenges are so significant that patients, carers, providers, researchers and policy makers in Ireland have all identified out-of-hours care as both a key deficit and research priority in palliative care provision.
Meeting the policy goals of having universal palliative care that is available according to need requires comprehensive care provision. At the same time, demand for palliative care is growing. Ireland has the youngest population of any country in Western Europe and the fastest-growing increase in palliative care need over the period 2019–2046. Continued delays in implementing national guidelines and the Sláintecare recommendations means the health service will struggle to continue to provide these essential services to everyone who needs them.
Persistent gaps in funding and service provision means that capacity must be more than doubled to meet future needs. This chronic under-investment also seems short- sighted as studies have shown that palliative care often provides excellent value for money compared to other forms of care.
Living with serious illness is difficult enough, without having to navigate complicated systems to access essential services. Although Ireland’s palliative care services are highly- developed, there are crucial gaps in coverage.
A ‘business as usual’ approach is simply not an option. Sláintecare’s commitment to universal palliative care offers a unique opportunity to ensure that those most in need of support are not neglected.
Dr Bridget Johnston is a Research Fellow in the Centre for Health Policy and Management, Trinity College Dublin. Dr Johnston was part of the Trinity team that provided technical assistance to the Oireachtas Committee on the Future of Healthcare for the Sláintecare report.
Palliative Care Week 2020 takes place from 13-19 September. For more information please visit www.thepalliativehub.com