We must count the cost of Covid-19 and invest in the future of end-of-life and bereavement care in Ireland writes Sharon Foley
We, as a nation, are still in the grip of a pandemic, unprecedented in recent living memory. Its effect was immediate and apparent. The necessary national response to Covid-19 has been – and is still – urgent and universal, affecting all aspects of our lives: personal, familial, social, psychological and economic. In a few short months it has brought about change and curtailment.
Huge sacrifices have been made and an enormous effort expended by people in essential, frontline services – particularly health and wider social care – but also transport providers, food suppliers and supermarket workers, postal workers, fire and ambulance services, public servants, Government and local authorities and in the voluntary sector, to respond to new and unknown challenges in an utterly changed landscape.
The future is still uncertain and the ongoing challenges to us all, individually and collectively, are as yet unknown.
In the midst of all of this unpredictability, one aspect of our human existence has remained constant. Dying, death and bereavement – always present – have unavoidably come to the forefront of our collective consciousness.
Since March 2020, approximately 16,500 people have died in Ireland, over 1,700 as a result of Covid-19. 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.
We have also heard the distressing stories of how people were not able to visit with their relatives as they died in the past number of months.
As yet, there is no concrete commitment from the current Government to remembrance, reflection, renewal and resilience in relation to all deaths in the Covid-19 era. Lessons learned must result in real action to engage people in dialogue, to evaluate end-of-life and bereavement experiences during the pandemic emergency and the effect of the (necessary) strictures and curtailments.
No time can be lost in planning how we respond. A population-wide, whole society response, led by Government, is required.
In our Irish Hospice Foundation (IHF) pre-Budget submission published this week, we renewed our call for a whole-of-Government strategy for end-of-life and bereavement care in Ireland. We are 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.
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 our IHF recommendations for Budget 2021 which were sent to Government earlier this summer.
Our Submission is based on our belief that everyone deserves the best care at end of life and in bereavement – a belief shared by the people of Ireland.
Our seven key policy recommendations 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 more people to die at home or place of preference
- Facilitate dialogue and planning for end-of-life
- Introduce a new national mortuaries programme.
IHF has long advocated for a more strategic, whole-of-Government approach. As a result of Covid-19 there is a significant, possibly unique, opportunity to equip all our State services –including health and social care – to meet the challenges presented by dying, death and bereavement in the aftermath of this pandemic and to allow all our citizens to contribute to that debate.
Our health and wellbeing are intimately bound up with the State and its services, as well as wider society. So too is dying, death and bereavement. The State has no power to take away death. But, what we as citizens can legitimately expect is that the Government equips us to cope with the myriad practical, social and emotional issues that present before, during and after a death.
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 is still not in place.
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 to live and die at home.
We know many people are unprepared for end of life. We need to reignite the national conversation on death and planning ahead. IHF has been to the forefront in the development of a citizen-led tool called ‘Think Ahead’. More support is required to bring the concept of thinking ahead to individuals facing end-of-life, the public and communities within Ireland, to encourage and enable them to open up conversations and plan for end-of-life. That this work is solely led by a charity is no longer acceptable. State support is needed now more than ever.
There is also a need to look at the possible effects of delayed or disenfranchised grief. These effects may be not only in those family members and friends directly and personally affected by death during the Covid-19 period, but also by healthcare workers at all levels, teachers and pupils, employers and employees, and the general public.
When the pandemic has subsided, we may well live in its shadow for years to come. How we, as a nation, respond to dying, death and bereavement post Covid-19 is critical.
Sharon Foley is Chief Executive Officer of the Irish Hospice Foundation. The IHF bereavement support line is on freephone 1800 80 70 77 and available Monday-Friday 10am-1pm.