Dying is Everyone’s Business: We must count the cost and invest for the future
- Deaths in Ireland due to increase 25% by 2030 but State not ready to meet the challenges this will bring
- Demand for Nurses for Night Care is on the rise, yet only 8% of cost covered by the State, despite commitment to 50% funding
Tuesday 2 July 2019, Dublin –
The Irish Hospice Foundation (IHF) says the Government needs to invest now in palliative, end-of-life care and bereavement supports and infrastructure.
At our Pre-Budget Briefing this afternoon, the country’s only charity dedicated to death, dying and bereavement called on the Government to invest in healthcare infrastructure and adequately support end-of-life and bereavement services. The CSO estimates annual deaths in the Ireland will increase to 38,000 by 2030 with 3.8m people bereaved.
Sharon Foley, CEO of the IHF said: “The costs of dying, death and bereavement cannot be ignored as they affect us all. End-of-life infrastructure, such as our mortuaries, need investment. Gaps in specialist palliative care services, such as the need for a Midlands Hospice, need to be addressed. Essential services provided by NGOs, such as Nurses for Night Care, also need to be adequately funded by the state. These are not huge investments but urgently need attention.”
In addition to capital investment in healthcare infrastructure, the state needs to adequately fund end-of-life support services. The IHF Nurses for Night Care service, operated in association with the Irish Cancer Society, enables people to die at home. The service costs €3.2m annually yet receives 8% funding from the state – despite its recognition under the Palliative Care Framework 2017-2019 as a core service which should be State-funded at a rate of 50%.
The IHF also asks the Government to concentrate research and resources on bereavement, which is largely invisible in formal policies. The economic as well as the emotional and societal impacts of bereavement need to be researched – research which the IHF is offering to co-fund.
Embedding the best end-of-life and bereavement care in all care settings, investigating and responding to the cost of bereavement and long-overdue capital investment in infrastructure, underpin all nine IHF recommendations for Budget 2020.
Key Submission Asks
- Government to provide the stated commitment to fund 50% of the Nurses for Night Care service
- Ring-fence capital funding in 2020 to upgrade mortuary facilities across the acute hospital sector
- Develop a new National Policy on Palliative Care to include all elements of current policy and address policy gaps
A need to Plan Ahead
The IHF believe dying, death and bereavement are everyone’s business. Citizens have repeatedly told us they want to be able to discuss and record their wishes about end of life, and to be assured that their wishes will be respected.
The Government’s own legislation – the Assisted Decision-Making (Capacity) Act 2015 (ADMA) – is a welcome development in this area, but it has not yet been brought into full effect. The IHF’s planning tool- Think Ahead– has been leading the way in this. There has been a groundswell of support for Think Ahead – largely citizen-led – culminating in a 75% increase in demand from the public for Think Ahead forms between 2018 and 2019.
Angela Edghill, Advocacy Manager said: “It’s very important this Act is brought into effect as soon as possible, particularly because it legislates for the making of an Advance Healthcare Directive. In the meantime, it is essential the public, health and social care professionals are fully informed and supported to benefit from the new provisions within the Act.
What the Government must now do is fully resource and support the Decision Support Services. It is evident from the increase in demand for Think Ahead forms that the public want to be able to engage on issues and express their wishes. The Government should lead and encourage them in this.
With each death and each bereavement, there is only one chance to get it right. Small investment now in helping the public and professionals engage in advance care and end-of-life planning will help us to get it right more and more often. It’s a price worth paying.”
The IHFs budget 2020 recommendations are additionally informed by the People’s Charter on Dying, Death and Bereavement. The Charter arose from the 2016 “Have Your Say” survey in which 3,000 people in Ireland expressed their views, fears, hopes and anxieties on dying, death, care and loss.
A full copy of the IHF Pre-budget submission is available here.
For more information on Have Your Say, click here.