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Pre-Budget Submission 2021

Pre Budget submission

Irish Hospice Foundation renews call for whole-of-Government strategy on end-of-life and bereavement care

Increase in numbers dying at home – more investment needed in this area in wake of COVID-19

Tuesday 8 September 2020

Ahead of Budget 2021 next month, Irish Hospice Foundation (IHF) has renewed its call for a whole-of-government strategy for end-of-life and bereavement care in Ireland.

In its Pre-Budget 2021 Submission, published today, Ireland’s charity dedicated to death, dying and bereavement is asking the State to invest in healthcare infrastructure and adequately support end-of-life and bereavement services to ensure we, as a nation, respond correctly and compassionately to the issues that have arisen recently in the care of the dying and bereaved.

Since March, approxminately 16,500 people have died, with over 1700 of these COVID related. Continuing visiting restrictions and infection control measures across healthcare settings and the limit on numbers attending funerals are impacting on those receiving and delivering end-of-life care as well as on the grieving process for families, their extended social circles and healthcare workers.

Sharon Foley, CEO of the IHF said:

“We are still in the grip of COVID-19. The necessary national response has been – and is still – urgent. However, now that we are coming to live with COVID, we must meet the challenges presented by dying, death and bereavement in the wake of this pandemic. We have heard the distressing stories of how people were not able to visit with their relatives as they died in the past number of months.”

“No time can be lost in planning how we respond to this experience. The recommendations in our submission are practical steps to secure a shared future which takes into account the reality of our common humanity, mortality, care and grief.”

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 seven IHF recommendations for Budget 2021 which were sent to Government earlier this summer.

They are:

  • Develop a whole-of-Government Strategy on End-of-Life Care
  • Renew the National dialogue on death, dying and bereavement
  • Plan Community Supports and Education on Bereavement
  • Establish a dedicated Programme of Work to improve end-of-life and palliative care in Nursing Homes
  • Enable people to die at home or place of preference
  • Facilitate dialogue and planning for End of Life
  • Introduce a new National Mortuaries Programme

Dying at Home

Demand for Nurses for Night Care (IHF funded) has risen over the past six months as more families dealing with the imminent death of a loved one at home needed supports during the night. The free national service allows people with non-cancer related illnesses to spend their final days at home. This year additional funding was provided for this vital service. However, the long-term commitment by the State to fund 50% of the service (as outlined in the HSE Palliative Care Framework) is still not in place. The total cost of the service is €3.2 million and a commitment of 50% funding of €1.6m is well overdue.

Most adults in Ireland say they want to die at home. It’s a simple vision; yet, anecdotal and scientific evidence suggests it is becoming rarer and harder to achieve. COVID-19 has strengthened the IHF belief that more can and should be done to enable people live and die at home. As a result, the organisation is also asking for government commitment to develop a statutory home care scheme to enable more people to remain at home towards the end-of-life, regardless of whether there is a family carer(s) in place. The provision of a statutory home care scheme, it says, should be considered essential post-COVID.

Nursing Homes

COVID-19 has also highlighted other areas of end-of-life and bereavement need – primarily in the community and generalist palliative care settings, such as residential care. At the time of writing, 56% of deaths from COVID-19 are in nursing homes.

IHF welcomed the opportunity to contribute to the recent COVID-19 Nursing Homes Expert Panel review. One of its recommendations included the development of a joint HSE / IHF collaborative national programme on palliative, end-of-life and bereavement care for the nursing home sector that engages all stakeholders and improves quality of care across the sector.

Head of Healthcare Programmes at IHF Siobán O’Brien Green said:

“This has been an incredibly distressing time for residents, families and staff in nursing homes and residential care settings. This is an experience that should not be repeated. We here at IHF are very willing to contribute our experience and expertise in the development of a dedicated national and sustained programme for the nursing home sector, which is now imperative. We urge Government to progress and invest in this initiative, in consultation with all relevant stakeholders.”

A full copy of IHF Pre-budget submission is available here.