Diarmaid Ferriter: Hospices show how State leans too heavily on volunteers

Attending a wake recently, I was reminded of the regular assertion that the Irish do death well. The author Kevin Toolis, whose family has lived off the coast of Mayo for two centuries, wrote powerfully on this subject in his 2017 book My Father’s Wake.

Although his father Sonny’s heart had stopped “his death had only just begun. Sonny’s body would be with us amidst his children, his clan, his people, till the grave . . . to be truly human is to bear the burden of our own mortality and to strive, in grace, to help others carry theirs; sometimes lightly, sometimes courageously. In communally accepting death into our lives through the Irish wake we are all able to relearn the first and oldest lessons of humanity. How to be brave in irreversible sorrow. How to reach out to the dying, the dead and the bereaved. How to go on living no matter how great the rupture or loss. How to face your own. And how, like Sonny, to teach your children to face their death too.”

Before the wake, however, there is the managing of dying and much has been done in recent years to develop more discourse about this, including by English doctor Kathryn Mannix, author of With the End in Mind: How to Live and Die Well. Drawing on her extensive experience with palliative care, Mannix focuses on the idea that death, rather than primarily a medical event, is essentially a human event with a medical element and if possible it needs to be prepared for.

Whoever is in power after this election will need to formulate some realistic vision of how we manage dignity and fairness in life and death

Hospices have played a vital role in that preparation for centuries. Historically, much of that was bound up with the religious calling to care for those dying. The Sisters of Charity, founded by Sr Mary Aikenhead in 1815, established hospices in the 19th century; one of them, St Joseph’s in London, led to what might be considered the modern hospice movement. What has been apparent since their beginnings is the reliance on community fundraising and volunteerism and this continues to be the case.

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Wicklow hospice

What appeared to be a very uplifting news story a few weeks ago centred on the opening of the new hospice in Co Wicklow. Established in 2009, the Wicklow Hospice Foundation set as its mission the provision of a 15-room inpatient unit at Magheramore that could serve as the hub of an integrated palliative care service for the county. Its members and supporters have worked entirely voluntarily for 11 years to successfully reach its goal, greatly assisted by the generosity of the Columba Sisters, who donated the site at Magheramore.

From the outset, the target was to raise €3 million, get the Health Service Executive to match that and then for the HSE to commit to funding the hospice annually. What has been involved in those years of effort to address what one member of the foundation referred to as the “absurdity that the county remains without a hospice facility of any sort”? Hefty anonymous donations, concerts, fashion shows, marathons – one team of hospice runners did seven marathons over seven days – a contribution from the American Ireland Fund and material and vocal backing from Oscar-winning actor Daniel Day-Lewis, who had to warn of “armed rebellion” in 2013 if the HSE did not support the project. Day-Lewis had been struck by “the compassion and consideration of palliative care staff at a cottage hospital in Britain”, who guided his mother Jill through the experience of dying.

Massive voluntary exertions

The HSE has now committed to meeting the operating costs, though not the capital and enhancement costs, and the opening of the hospice is obviously a good news story, made possible by the extraordinary dynamism and drive of the fundraisers. But what lies at the heart of this long effort is troubling: the massive voluntary exertions required to provide essential services to allow dignity for those suffering. The reality is that the availability of hospice care depends on where you live, such are the regional disparities. Another reality is that investing in hospices saves the state money in the long term as it eases costly pressure on hospitals.

During the last few weeks we have repeatedly heard how the problems associated with health, housing, pensions and childcare are causing acute distress. One Scandinavian visitor I spoke to recently, in Dublin for the first time in many years, was struck by obvious signs of increased wealth, but also the lack of basic social, public and care services. She was astonished, for example, to hear a mother break down during a radio interview because she could not get the assistance she needs for her disabled daughter.

Whoever is in power after this election will need to formulate some realistic vision of how we manage dignity and fairness in life and death so that we do not have to rely excessively on extreme volunteerism.