Dr T. K. Whitaker, chairman of the Fellows of the Foundation, Dr Mary Redmond, chairwoman, board of directors, and Dr John McCarthy at the launching of the Hospice Foundation in Our Lady ‘s Hospice, Harold’s Cross, Dublin on the 22/04/86
“For the figure of approximately 33,000 persons who die each year in the Republic of Ireland there are only three hospices. By far the biggest is at Harold’s Cross….But the resources at Our Lady’s Hospice are strained beyond capacity: it has 40 beds for patients with terminal cancer – and 1,500 people die each year in Dublin alone from terminal cancer….Then, too, take the Home Care Service which operates out of Our Lady’s Hospice, the only Home Care Team in the country….Started experimentally in 1985, its overwhelming success has secured for it a permanent role in community care. But the Home Care Team operates only within a six miles radius of Harold’s Cross.”
Mary Redmond’s words, delivered at the launch of Fundraising Activities for the Irish Hospice Foundation in May 1987, speak of the challenges which faced hospice care in Ireland 30 years ago: only three hospices catering for around 33,000 deaths per year, many dying (often in extreme and unrelieved pain) of terminal cancer without appropriate end of life care, and only one dedicated palliative Home Care Service in the entire country which, nevertheless, was necessarily constrained to a limited geographical area in Dublin. The overall picture was of a country where a dedicated and courageous few – such as those working in Our Lady’s Hospice – tried to meet the needs of those at end of life but also in which there was not an overarching culture (in either the charitable or state sector) that supported the specific needs – be they physical, psychological or spiritual – of the dying.
Today marks the 31st anniversary of the founding, by Mary Redmond, of the Irish Hospice Foundation and gives us a chance to look back to its origins, its early aims and how these still inform its work and how hospice care in Ireland has changed over that time.
The Origins of the Irish Hospice Foundation
The Irish Hospice Foundation came to be for the most personal of reasons for Mary Redmond: the death of her own father, Dr. John Redmond (Sean Reamonn). The sensitive and compassionate palliative care he received in Our Lady’s Hospice, coupled with her own growing awareness that a general lack of hospice provision meant that many others’ loved ones did not receive similar care at end of life, proved to be the catalysts that led her to write to Sister Frances Rose O’Flynn of Our Lady’s Hospice offering to set up a Foundation to raise funds. In a letter of May 6th 1985, she wrote:
“My dear father, Dr. John Redmond, was in the expert and loving hands of your sisters until he died on January 12 of this year. May he rest in peace. We in the Redmond family will never forget the sensitivity of Sr. Maura and of all the nurses in her ward.
Until my father had to leave Elm Park in the middle of last year and my mother as a result had to undertake the task of finding a suitable place for him to go, we had never encountered the difficulties which were faced by families in such circumstances. We had had no previous experience of the worry and anguish that can be felt when the task is to find a suitable place for a dearly loved one who is dying.
The point of my letter is that I wish to do more than simply thank you and your sisters for all that they have done….I remember asking one of your sisters early this year whether there was a formal committee or group looking after the raising of money for the Hospice in Harold’s Cross. The answer, which may not have been correct, was no. Whether the answer is no or whether there is already in existence some such group that I have mentioned, I believe I could be of most use in contributing my legal and administrative skills to fundraising of some sort.”
Sr. Frances Rose’s response was positive. As Mary Redmond noted shortly after they met a week later: “Sr. Frances Rose was very receptive to the idea of a foundation for hospice and it turns out the issue is timely. Our Lady’s Hospice is building an extension at the moment and also hopes to build a large educational centre at a cost of something in the region of 2 million – Sr. Frances Rose is a person of vision…”
From here, events proceeded quickly. The first committee meeting of the Hospice Foundation took place on September 11th, 1985. The committee grew to comprise: Sr. Frances Rose, Sr. Ignatius Phelan (both of whom would go on to be recognised as ‘People of the Year’ in 1987 for their contributions to hospice care), Mr. John Lynch (Chief Executive of the IPC), Dr. Anton Murphy (Economist, TCD), Mrs. Anna Farmar and Mr. Nicholas O’Connor (Chartered Accountant).
Invitation to the Launch of the Irish Hospice Foundation
The Foundation was officially launched on 21st April 1986. As mentioned above, one of the first aims of the Hospice Foundation was to raise funds for the considerable new building project in Our Lady’s Hospice for which around £2 million was needed. The state provided £250,000 while the Hospice Foundation successfully raised over £1.6 million from a wide range of fundraising initiatives, with the result that the building project was completed. These fundraising endeavours also led to the expansion of Our Lady’s Hospice’s home care services for patients suffering from advanced cancer in their homes. You can read the first fundraising leaflet the Hospice Foundation produced which focussed on the specific needs of Our Lady’s Hospice here.
The First Advertisement for The Hospice Foundation
The Aims of the Irish Hospice Foundation: Then & Now
While the most prominent early focus of the Irish Hospice Foundation was fundraising for Our Lady’s Hospice, it had significant other aims from the start, all of which still comprise part of the Foundation’s work today.
Research on Best Practice for End of Life Care and Provision of Bereavement Resources
One aim was a focus on researching the best practice for end of life care, with a particular focus on the best ways to prevent pain in those with terminal illness. To this end a research committee, focussing on funding projects relating to palliative care, was formed. Its first meeting was on the 9th of June 1986 and it comprised: Mr. Nicholas O’Connor, Chartered Accountant (Chairman), Dr. John McCarthy, Medical Director of Our Lady’s Hospice, Dr. Verona Hanley, Domiciliary Care Services in Our Lady’s Hospice, Dr. Michael Moriarty, St. Luke’s Hospital, Dr. Ciaran O’Boyle, Royal College of Surgeons, Dr. John Fleetwood (G.P.), Professor John McCormick, T.C.D., Dr. Therese Brady, U.C.D. and Professor John Feely, T.C.D. You can read the minutes from the first meeting of the research committee here. This focus on advocating for best practice at end of life care remains at the the core of the Irish Hospice Foundation’s work today, pushing for the best possible palliative care for many different patient populations, including dementia, heart failure, respiratory disease and various neurological conditions.
In addition, in an RTE radio interview by John Bowman on the day after the launch of the Foundation, Dr. Ciaran O’Boyle also highlighted how the Hospice Foundation should not just commission research but should also provide a research resource for those studying bereavement:
“…The Hospice Foundation will provide, a ‘research resource’, if you like, where we can provide both research information and training for medical students, both at under-graduate and at post-graduate level, and also indeed for nurses, because it’s very often nurses that have the major role in pain relief of patients…”
This need for a ‘research resource’ for issues relating to bereavement currently finds expression in a host of workshops on bereavement which the Irish Hospice Foundation provides and which are attended on average by 3,000 people each year, including nurses, doctors, psychologists and members of the public. It also finds expression in two postgraduate courses (provided jointly with the Royal College of Surgeons): the Msc in Bereavement Studies and a Professional Certificate in Children and Loss .Finally, there is also the Therese Brady library, the only library in Ireland dedicated solely to providing resources on bereavement. The IHF has invested €11.4 million in bereavement education, research and advocacy over 30 years and it is estimated that around 55,000 people have received training from the Irish Hospice Foundation in aspects of good end-of-life care and bereavement to date.
Putting Hospice Principles into Practice Outside of the Physical Hospice: Creating Hospice Friendly Hospitals & Expanding Hospice Home Care Services
“ ‘Solitary, miserable, uncared-for death beds are all too common even in this Christian land….’
These words are to be found in the first prospectus on Our Lady’s Hospice over 100 years ago. Alas and to our shame in this Christian land “solitary, miserable, uncared-for [and I might add painful] death beds” are still all too common. There is an enormous contrast between death within hospice and death without.”
Mary Redmond, 1988, Address to Naas and Newbridge Soroptimists
It was this kind of recognition – of the ‘miserable, uncared-for death beds’ outside of hospice settings – that went on to inform much of the Irish Hospice Foundation’s work in ensuring that the needs of those dying in Ireland be met, no matter whether they were in a hospice bed, a hospital bed or at home. From the beginning of the Foundation, hospice care was not seen as being confined to a hospice building. When asked on the same John Bowman RTE radio programme mentioned above whether the “hospice idea is to do necessarily with buildings, or is it also as much to do with attitudes and with care, whether in the home, in a hospital or in a hospice?”, Dr. Ciaran O’Boyle answered: “It is very much to do with attitudes. I think what we need to do is to bring the management of pain more centre stage, if you like, right across the spectrum.” It is this idea, of seeing hospice care as informing a whole spectrum, that has been at the core of much of the Foundation’s work, in particular as regards bringing hospice principles into hospitals and as regards providing home care hospice services.
As regards hospitals, first of all, the Irish Hospice Foundation aimed from its early days to bring the spirit of hospice care into acute hospital settings. An RTE report on the Irish Hospice Foundation on the 18th June 1992 noted that beds in general hospitals are often unsuitable for hospice patients as a result of the surroundings, noise and food, but that this was not something the decision makers realised. Speaking in that report, Mary Redmond said:
“I am talking about the Department of Health and I’m talking about the health boards and I am talking about their understanding that a hospice backup bed is distinguishable from a general type of hospital backup bed and that’s not to criticise one and to praise the other but it is a different form of care – hospice care is complementary to what is provided in a general hospital. And I think that aspect of what is happening in hospice at the moment has to be really severely looked at and reviewed to see if we are actually giving the best to people who are dying in Ireland.”
Today, this strand of the Irish Hospice Foundation’s work finds active expression in its ‘Hospice Friendly Hospitals’ programme. To date over 48 hospitals nationwide have been involved in this programme, with over €11.5 million having been invested in the programme. There are several key areas to the work of the Hospice Friendly Hospitals programme, including co-ordinating networks for hospital staff to promote improvements in end-of-life care and providing hospital staff with educational resources and support; developing and promoting the use of ceremonial resources at end of life care and co-ordinating the Design & Dignity project to transform the way end of life spaces in hospitals are designed. In this way, the hospice principles of dignity and compassionate care are becoming ever more implanted in hospitals throughout Ireland.
As regards hospice home care, another early aim of the Irish Hospice Foundation was to expand the successful and pioneering model which Our Lady’s Hospice used, at that time the only example of hospice home care in Ireland. At the launch of the Foundation’s fundraising activities in 1987, Mary Redmond said:
“The sisters, doctors and nurses at Our Lady’s Hospice…provide one of the best models for a therapeutic and caring Community. They certainly provide an unequalled model for the Hospice Foundation. We want to see the growth of enough Home Care Teams and hospices for the whole community…. in the Foundation we believe that an extension of hospice facilities, particularly Home Care, would complement the aims and objectives of the Government.”
Today, the Irish Hospice Foundation is actively involved in providing Home Care Hospice services. Through the ‘Nurses for Night Care’ service, the Irish Hospice Foundation funds nursing care and practical support for people dying with diseases other than cancer (while the Irish Cancer Society funds the service for those dying of that disease). In 2016, 600 families were supported by the service and 2027 nights of care were provided by nurses to those people who wished to die at home. From a time when such services were only provided within a six mile radius of Harold’s Cross in Dublin, it is now possible for anyone in Ireland to receive end-of-life care at home.
Supporting Children at End of Life
An early hope of the Foundation was to investigate the specific needs of terminally ill children and their families. In a research committee meeting of 20th October, 1986, Professor John McCormick ‘…proposed that research into the needs of dying children and their families be undertaken. The assumption is that parents and dying children have needs which are not being met. In order to meet those needs it is necessary to find out what they are by interviewing parents who have already been through the experience…’. This focus on the specific palliative cares needs of children was a recurring theme in the early days of the Irish Hospice Foundation at a time when very little active research was being undertaken in the area of children at end of life.
Today, supporting children at end of life is a central focus of the Irish Hospice Foundation’s work.There are around 4,000 children living with a life limiting condition in Ireland of which around 350 will die every year. The specific palliative needs of children were identified in an Irish Hospice Foundation led study, with the Department of Health & Children, in 2005, a study which informs government policy on children’s palliative care. Following that, the Irish Hospice Foundation funded 85% of the start of costs of the Children’s Care Programme which includes a team of Children’s Outreach Nurses and Ireland’s only Paediatric Consultant specialising in Children’s Palliative care – this service is now 100% state funded. Overall, the Irish Hospice Foundation has invested €4.5 million into the development of palliative care services for children since 2005.
Hospice Care in Ireland: Then & Now
Ireland’s approach to hospice care has come a long way since 1986. Indeed, the very concept of hospice care – as we understand the term today – was in its relative infancy at that time, not just in Ireland but throughout the world. When asked on RTE radio in April 1986 ‘But why haven’t we heard more about it as a movement, as an idea?’, Dr. Ciaran O’Boyle replied that the idea of Hospice:
‘…in Britain and in the States has really only been having an impact for the last ten years. The Hospice in Harold’s Cross was the first hospice in either Britain or Ireland. And it takes quite a while for the impact of organisations like this to permeate through to general medicine. That is taking place now, the movement is growing apace and it is having a considerable influence on the way in which patients, cancer patients particularly, are being managed in general hospitals.’
Interview with John Bowman on RTE Radio, 22.04.1986
Since then, the hospice movement certainly has grown apace in Ireland. Whereas in 1986 there were only three hospices in Ireland, today there are nine. Whereas then only one specific area in Dublin had access to hospice home care services, now this is a national service which anyone at end of life can avail of. Whereas then there was little recognition of the difference between a hospital bed and a hospice bed in hospital settings, today the need to incorporate hospice principles into hospital settings is a cornerstone of best practice. These changes have come about as a result of a focussed conversation between many sections of Irish society, healthcare groups and between the state and charity sector. They have also come about as a result of increased national awareness of hospice care from the ground up: the annual Sunflower Days and Coffee Mornings have raised an estimated €35 million for local hospice causes over the years. These are events that are largely run by local communities and which bring these communities together to focus on the needs of hospice care. The growth of hospice care in Ireland over the last 31 years has truly come about as a result of a national conversation at every level.
In that sense, TK Whitaker, the first Chairman of the Fellows of the Hospice Foundation, has been proved correct when, at the Foundation’s launch 31 years ago today, he said that:
‘I also feel sure that there will be a growing recognition of the as yet far from satisfied need for hospices of this kind and practical support from the community at large for the worthy aims of the Hospice Foundation.’
The efforts to meet successfully the multifaceted and complex needs of hospice care will always continue, but, from humble beginnings, so many of these have been identified and met successfully over the last 31 years in Ireland.
“As anyone with a dream will tell you, not only does it never go away, you see it, you can touch it and you talk about it at every opportunity”