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Posts Tagged ‘End-of-life’

Dying is Everyone’s Business. Can we afford to forget Grief? IHF Pre Budget Submission

Posted on: July 6th, 2017

Irish Hospice Foundation Pre Budget Submission calls for a national strategy for palliative, end of life bereavement care

  • 300,000 newly bereaved every year
  • IHF pre-budget submission calls for change
Irish Hospice Foundation Pre-Budget Submission 2018 L-R Orla Keegan, Head of Education, Research & Bereavement, Marie Lynch, Head of Healthcare Programmes and Angela Edghill, Advocacy & Public Engagement Manager

Pictured at the Irish Hospice Foundation Pre-Budget Submission 2018 L-R Orla Keegan, Head of Education, Research & Bereavement, Marie Lynch, Head of Healthcare Programmes and Angela Edghill, Advocacy & Public Engagement Manager.
Photo By Paul Sherwood

Today (Thursday July 6th)  the Irish Hospice Foundation (IHF) calls for the government to show that bereavement, palliative care, end-of life issues are priority areas for policy development and investment. At their Pre-Budget Briefing in Dublin today the IHF strongly advocates for the development of a national strategy on palliative care, end of life and bereavement to include both health and non-health areas of public policy. This underpins all 23 IHF recommendations for budget 2018. Death is an inevitable and universal experience – a fact of life. While most people will experience ‘death denial’, it is not appropriate that the State adopt the same attitude. Dying, death and bereavement present myriad challenges to the health service and to other state services. That means that a whole society approach is essential. We believe dying, death and bereavement are everyone’s business with the assumption that healthcare and other services will recognise and address our needs. The recent Sláintecare report is an important development outlining a ten year plan for radical reform of Ireland’s health system. Despite its comprehensive look at the health services, sadly bereavement was forgotten in the report. Is no-one grieving in Ireland? The facts differ. In the next 10 years[1]: Almost 300,000 people will die in Ireland Over 3,000 of those deaths will be of children Over 240,000 will be of people over 65 years of age Almost 3 million people will be bereaved[2] and up to 150,000 of these will encounter significant difficulties or ‘complicated grief’[3] Grief is the common ground on which we all stand. We urge the Government and all Oireachtas members to ensure bereavement issues are priority areas for policy development and investment. If current trends continue 5% of grieving people will require specialist mental health services/psychological intervention[4]. Given this evidence, it is essential that the healthcare system meets the needs of people facing dying, death and bereavement and ensures that everyone gets equal access to good care. By careful planning, we can make the best use of the substantial funds that we directly and indirectly invest in the care of the dying and the bereaved, and, crucially, that this planning includes helping people to live well until they die. Orla Keegan Head of Education, Research & Bereavement, IHF said: “The implications of bereavement stretch across our society – all ages, all circumstances, all cultures. The cost of building caring communities is a small investment for long-term gains. Amongst the calls being made by the Irish Hospice Foundation is one for research to uncover the financial impact of loss which will help to reframe the bereavement grant for future generations. Support for joint-working by the voluntary sector in children’s and adult bereavement care is also identified as a primary need.”

Everyone deserves the right to a good death

“Everyone in Ireland deserves to have a good death. For this to happen, improvements are needed in Primary Care, Residential Care and in Hospital settings. These improvements need to specifically focus resources and expertise available outside traditional working hours as well as the development of Specialist Palliative Care in the Midlands and North East. From a public health perspective, the IHF recommend that the Assisted Decision Making (Capacity) Act 2015 is fully commenced this year. In the meantime there is an urgency to invest resources to ensure that Irish citizens and healthcare staff are aware of and fully understand the implications of this Act, particularly the impact on advance healthcare planning and facilitating people to make choices about their own healthcare” stresses Marie Lynch, Head of Healthcare Programmes, the Irish Hospice Foundation.  

Call for delivery of the best palliative, end of life and bereavement care in all care settings

The IHF asks the Government to: Ensure everyone has access to the best care at end of life and in bereavement through a political and public policy commitment to a strategic, responsive, population-wide approach to end of life issues and ensure the health care system delivers best palliative, end of life and bereavement care in all care settings. The IHF believes that with a more strategic approach, better end-of-life care can make a real difference to both the quality of healthcare provided to the citizen and the cost of health and social care to the State – a view supported by an Oireachtas Committee in 2014. [5]
  • According to Angela Edghill, Advoacy and Public Engagement Manager said “such a strategy supports: Government policy set out in the 2016 Programme for a Partnership Government[6] which seeks to ensure that we have an Ireland that looks after its people from the time they come into the world to the time they leave and promises investment in end-of-life care at all life stages. This proposed integrated approach echoes that set out in the National Positive Ageing Strategy[7] and most recently by the Finite Lives Reports[8] [9].
  • Delivery of the targets set out in the Sláintecare Report[10] of the Oireachtas Committee on the Future of Healthcare 2017 which builds on the 2001 National Strategy on Palliative Care (NACPC, 2001[11]) and the new framework for palliative care services, publication of which is expected.
In some cases the challenge is to simply join the dots – to enable, encourage, mainstream and replicate good practice and innovation across the whole of government and community areas.” Recommendations in the IHF pre-budget submission relate in particular the Departments of Health, Social Protection, Education and Skills, Finance, Public Expenditure and Reform, Children and Youth Affairs, Jobs, Enterprise and Innovation and An Taoiseach, but are relevant across the whole range of Government Departments and Agencies. READ FULL PRESS RELEASE AND REFERENCES HERE>>>  

A full copy of the IHF Pre-budget submission is available HERE

For further information please contact: Angela Edghill, Advocacy and Public Engagement Manager      

Welcoming “Finite Lives” Report

Posted on: May 19th, 2017

The Irish Hospice Foundation welcomes the newly published report Finite Lives which examines State Services around dying, death and bereavement.

  Angela Edghill, Irish Hospice Foundation, Advocacy and Public Engagement Manager said the ground breaking report is the first of its kind and proves that dying is everyone’s business. Ms Edghill added: “It provides great evidence for a more coordinated and strategic approach to dying, death and bereavement by all of the agencies and Departments of State. Only good can come of this report since the issues it examines affect us all, without exception - but only if the State acts on Senator O'Donnell's sensible, practical and reasonable recommendations.”
The report makes 16 key recommendations including the promotion of the Irish Hospice Foundation’s Think Ahead planning tool. The purpose of the Think Ahead document is to guide members of the public in discussing and recording their preferences in the event of emergency, serious illness or death.
Further information is available on www.thinkahead.ie Finite Lives by Senator Marie-Louise O’Donnell was launched by An Taoiseach Enda Kenny this afternoon (Wednesday, 17 May) at Government Buildings.  

The report is available here for download.


C’mon the Camino with Katherine Lynch

Posted on: April 18th, 2017

From Dancing Shoes to Hiking Boots

Make every step count for hospice care this September by walking the Camino de Santiago with actress Katherine Lynch in aid of the Irish Hospice Foundation (IHF). The Leitrim-native will walk the scenic coasts of Portugal and northern Spain to support hospice care and IHF programmes such as Nurses for Night Care and Hospice Friendly Hospital Programme (HFH). Katherine's idonate link if you wish to support is here. The IHF event takes place from September 24th to 1st October taking in beaches, rolling hills and gentle, flat paths with walking distances of approximately 20km daily. This section of the Camino is located in the region of Galicia – a region also known as the ‘Ireland of Spain’.  
Helen McVeigh, IHF Director of Fundraising, commented: “By stepping out on the Camino you are embarking on a personal challenge but also supporting people nationwide who are facing death or bereavement. Our vision is for no one to face these difficult times without the care and support they need. This is your chance to make every step matter.
Katherine is an amazing ambassador and we’re delighted to have such a high profile personality leading the way. Nurses for Night Care service provided 2,027 nights of care in 2016 and helped 600 families. 48 hospitals have been involved in our HFH programme since it was founded 10 years ago.”

Flights, accommodation and full board are included and full details can be found here or by calling 01 6793188.


Rose Room Refurbishment for University Maternity Hospital Limerick

Posted on: March 7th, 2017
University Maternity Hospital Limerick (UMHL) has been granted funding to refurbish their Rose Room as part of The Irish Hospice Foundation (IHF) and the HSE’s Design & Dignity Grants Scheme which transforms hospital spaces for patients at end of life. Approximately €7,200 has been provided – €5,003 of which is a Design & Dignity Grant with the remainder coming from UMHL. Marie Hunt, CMM2 Bereavement Counselling Midwife, UMHL, said: “On average there are 4,500 babies born here every year. Although the majority of women presenting at the Antenatal Clinic have a positive outcome, sadly there are women who experience fetal loss or fetal abnormalities.
Our ‘Rose Room’ is a quiet room for compassionate care where parents can receive difficult news in privacy. It is situated adjoining one of the main ultrasound rooms with an interconnecting door.  When a doctor or ultrasonographer identifies a fetal abnormality on the ultrasound scan or when a woman/couple have been asked to return to the hospital for the results of diagnostic tests, there needs to be a private dignified comfortable space where they can be met and cared for. For the remainder of their antenatal care the women need to have this space available for them if they wish,” said Ms Hunt.
Refurbishing the room will include painting the door and walls, change of flooring, installing soft lighting, removing the wall cupboards, installing soft furniture and adding an art feature. Clinical staff have been involved in drawing up the plans from the beginning, and many of the ideas have come from midwives, doctors and ultrasonographers working at the front line. “The newly refurbished Rose Room will represent our commitment to providing sensitive and compassionate care to women and their families when receiving bad news while providing a private and dignified space for them to receive their care,” added Ms Hunt. The Design & Dignity scheme previously funded a mortuary refurbishment in University Hospital Limerick as well as family rooms in St John’s Hospital and Nenagh Hospital and a bereavement suite in Ennis Hospital. Mary Lovegrove, Design & Dignity Project Manager with the IHF said: “The Design & Dignity programme has been running since 2010 and has funded 32 hospital projects across Ireland to date. Four important projects have already benefitted from the UL Hospital Group. We hope that this new ‘Rose Room’ will offer parents a dignified private space to be together at an intensely emotional time.
“Our vision for the Design & Dignity project is for an end of life sanctuary in every public hospital in the country by 2021 with approximately 60 projects completed as well as a HSE National Mortuary Capitals Programme underway,” concluded Ms Lovegrove.
Design & Dignity is a partnership project of the IHF and HSE Estates and originated in the IHF’s Hospice Friendly Hospitals Programme. The HSE has adopted Design & Dignity Guidelines for all refurbishment and new builds. UMHL Staff Caption: Pictured recently are Staff at University Maternity Hospital Limerick including Noreen Mann, Eileen Ronan, Eileen Quinlan, Jean Rafferty, Maria Gibbons, Rita O’Brien and Marie Hunt. UMHL has been granted funding to refurbish their Rose Room as part of The Irish Hospice Foundation and HSE’s Design & Dignity Grants Scheme. The IHF receives core funding from Pobal from the Department of Housing, Planning, Community and Local Government’s Scheme to Support National Organisations 2016-2019.

Retired Supreme Court Judge Catherine McGuinness calls for a national conversation on end of life as “Death cafe” to feature at major end of life conference in Dublin Castle

Posted on: June 14th, 2015
Retired Supreme Court Judge Catherine McGuinness has called for a national conversation on death and dying in Ireland. Announcing details of a major conference, Forum 2015, in Dublin Castle on September 10th with the theme “Dying to talk? - Conversations about End of Life” Mrs. Justice McGuinness said death is a fact of life and as a country we need to talk about our wishes and our fears to allow us make most of our lives. To book a place at the conference click here “Young people don’t think about death. Middle age ignores it. There are things to look forward to - starting a family, buying a house, retirement. The reality is we never know what is around the corner. As sure as we have been born, we will die, and we have to stop turning a blind eye to this fact of life.” Judge McGuinness is Chair of The National Council of the Forum on End of Life in Ireland, an initiative of The Irish Hospice Foundation (IHF), which hosts a conference every two years.  The National Council was formed five years ago with a remit to highlight end-of-life issues that matter most to people. Research shows that annually 29,000 people die in Ireland each year.  “Death will come to all of us at some stage and there is hardly a family in Ireland that will be untouched by death this year. We need to start talking more openly about it and to listen to people’s wishes and views.” She pointed to a recent Irish Hospice Foundation (IHF) national survey which revealed that 75 per cent of people wish to die in their own homes surrounded by their loved ones. “The reality is that only 25 per cent of people will get to do so, due partly to huge to gaps in services. A national conversation needs to be supported by good policy to make sure people can access good services.” This year’s conference will feature a “Death Cafe” where people can discuss all aspects of dying and breathe life into the conversation as they drink tea and eat cake. (Death Café was founded by Jon Underwood based on the work of Bernard Crettaz.) The key note speaker is Dr Katherine Sleeman, a lecturer in palliative care medicine at Kings College in London who will talk about having a good death. Dr Sleeman said recently: “Death isn’t failure – but avoiding the conversation is. We are all going to die. And while medical science gets better and better, many aspects of death and dying have reciprocally become worse and worse. Dying has become a casualty of medicine’s triumphs: medicalised, sterilised, institutionalised and interventionalised. She added: “A good death is possible, and there is more than one way to die well. But there are minimum requirements. These are that we recognise the fact that our patient is likely to die, that we communicate this with them openly and honestly, and that we sensitively explore their priorities, their hopes, and their fears. If we want to die well as a society we need to stop whispering about death and start talking about it.” Journalist Mick Heaney, son the late Poet Laureate Seamus Heaney, will deliver the Mary Holland Commemorative Lecture, and popular broadcaster Senator Marie Louise O’Donnell will address the afternoon session of Forum. RTE’s Claire Byrne will Chair the morning session. There will be workshops at Forum 2015 on the following themes:
  • Conversations at End of Life: Maintaining hope to the end
  • Good Grief: How to facilitate a therapeutic conversation
  • My conversations: Thinking and planning ahead
  • Everything you need to know when making funeral arrangements
Forum 2015 is open to interested members of the public as well as healthcare professionals. For more information click here or call 01 6793188.

Thinking ahead on the John Murray show

Posted on: April 23rd, 2015

Wendy Coughlan and her Daughter Helen

The John Murray Show on RTE Radio 1 today (April 23) interviewed Wendy Coughlan from Greystones (who has terminal cancer) and her daughter Helen.

Starting the conversation

Wendy has used Think Ahead and the Think Ahead form to plan for her end-of-life and discuss her wishes with her family. Both Wendy and Helen spoke openly and passionately about how Think Ahead has helped the entire family on this journey. You can listen back to Wendy and Helen HERE  

More on Think Ahead >>>  


Irish Hospice Foundation to launch Irish edition of ehospice – a global online end-of-life news resource

Posted on: April 2nd, 2015
The Irish Hospice Foundation announced today (Thursday, April 2nd) it is to launch the Irish edition of the global online news and information resource ehospice. (www.ehospice.com)   ehospice publishes news, commentary and analysis from the hospice, palliative, and end of life care sector in editions around the world including the UK, South Africa, the USA, India, Australia and Canada.  It is aimed at anyone with a professional or personal interest in palliative care offering a single point of access to intelligence and good practice.   The launch editor of ehospice Ireland will be well known journalist and former editor of the Irish Independent, Claire Grady.   David Praill, Chair of ehospice and CEO of Hospice UK, said: "We are delighted that the Irish Hospice Foundation is launching an Ireland edition of ehospice. The vision of ehospice is to improve patient care by ensuring everyone working in palliative care is part of a networked world.   “ehospice will provide those working in the sector an opportunity to share their news and good practice with colleagues in Ireland and globally, leading to better care for more people and greater awareness of hospice and palliative care.”   ehospice launched in October 2012 and has had almost half a million users and over 2.5 million page views. It is available on mobile and desktop websites as well as an iPad and iPhone app. An Android app is currently in development.   Sharon Foley, CEO of the Irish Hospice Foundation, said ehospice Ireland is an important development for the entire hospice movement here.   “It will provide a dedicated online platform - not in existence in Ireland at the moment - for health professionals, policy makers and service users to share news, views and analysis on hospice and palliative care, bereavement and end-of-life issues.   “ehospice Ireland will offer a single point of access to intelligence and good practice from around the world and will help professionals here keep up to date.  It will also give a voice to those receiving care and an opportunity to tell their individual stories and will help creative awareness of what palliative care is, and dispel some of the myths.   “I believe ehospice Ireland will increase the profile of the sector here, thereby helping raise awareness around the important issues.”   ehospice Ireland will go live in early May. As well as editor Claire Grady the editorial team will include Miriam Donohoe, Head of Communications with the Irish Hospice Foundation (and former senior editor with the Irish Times) and Mary Ellen Breen, IHF Communications Officer (and former editor with the Waterford News & Star).   ehospice Ireland can be contacted by emailing ehospice@hospicefoundation.ie or calling 01 6793188  

Taoiseach urges people to Think Ahead and plan for End of Life

Posted on: July 17th, 2014

Mrs Justice Catherine McGuinness, An Taoiseach Enda Kenny and IHF CEO Sharon Foley at the the launch of Phase Two of Think Ahead



TAOISEACH Enda Kenny today (Thursday) launched phase two of Think Ahead, an initiative which encourages people to plan for end of life by recording their wishes in the event of an emergency, serious illness or death.

Developed by the Forum on End of Life in Ireland, a project of the Irish Hospice Foundation, (IHF), Think Ahead urges people to Think, Talk, Tell, and recordand review their personal preferences for future medical, financial and personal care.

Currently available as a printed form, the IHF announced that agreement has been reached with Patients Knows Best, the world’s first patient-controlled, online medical records system to pilot ‘Think Ahead online’ in Ireland as part of phase two of the initiative. This will allow people record, store and retrieve their end of life wishes and care preferences, including their medical records, online behind a securer server.

A pilot of ‘Think Ahead online’ is to be funded by Third Age, a voluntary community organisation which aims to promote the resources of older people.

Speaking at today’s launch the Taoiseach welcomed the next phase of Think Ahead. He said: "Above all Think Ahead is empowering. It puts the person who is ill at the centre of operations, making sure their end-of-life care is as close to their wish as possible. For our part in Government, we are committed to providing a framework where people’s wishes around end-of-life care can be met, including the legislation providing for Advanced Care Directives which is currently being advanced.  Of course, Think Ahead encompasses more than care preferences; this valuable tool also covers other issues like legal and financial matters, organ donation and funeral arrangements.”  

Ms Justice Catherine McGuinness, Chair of the Forum on End of Life in Ireland, said while dying and death can be difficult and daunting topics, end of life care is an important discussion that we all should have with our loved ones.

“Think Ahead is a valuable guide for people planning their financial and legal affairs. It helps prevent shock, avoid confusion and gives control, choice and peace at the end.”

“Not enough people have a pension or have made a will. Fewer still have taken the time to decide who they would like to be contacted in the event of an emergency, or how to make important decisions known to their loved ones. Our ambition is that every citizen in Ireland will use Think Ahead as an important planning tool.”

Sharon Foley, CEO of the IHF, said everyone has the right to a say in their care at all times, including end of life. “But we also have the responsibility to let other people know our decisions and this is where Think Ahead can help."

“Open and honest discussion about death and dying can ensure that someone's wishes for end of life are known and respected. It can also support those they love through bereavement.”

She described the roll out of Think Ahead online as a “very exciting development”.

Phase One of Think Ahead was launched in 2011 by An Taoiseach. Think Ahead 2 is a revised form which is slimmer and more accessible than the original. The biggest change is a section allowing users create an Advance Healthcare Directive, reflecting changes currently proposed in draft legislation.

The form was revised after consultation with a wide variety of different groups and individuals including legal and healthcare professionals. One important source of feedback in revising Think Ahead was research conducted by Dr Brendan O’Shea on the use of Think Ahead in General Practice, published in the Irish Medical Journal in May 2014. Dr. O’Shea made a presentation on his research at today’s launch which showed that 86% who took part felt that Think Ahead should be used more widely.  83% said they had discussions on end-of-life planning with family members after reading Think Ahead.

Dr Mohammad Al-Ubaydli, founder and CEO of Patients Know Best which will do an online pilot of Think Ahead in Ireland said at today’s launch:  “Patients Know Best is delighted to add a digital version of Think Ahead's work within its patient-controlled medical records. The feedback on Think Ahead from a variety of users was full of praise – the end of life care planning forms are easy to understand, simple to use and useful in that they help patients and their families become more prepared.

“We’re very pleased to provide end of life care planning functionality to all Irish citizens and to our customers across seven other countries. We too believe that everyone should Think Ahead."

Patients Know Best is a fully secure online tool which enables patients to better organise, manage and control their own health care provisions.

Áine Brady, CEO of Third Age which is funding the development of the online version of Think Ahead through PKB said: “We are delighted to support the further development of Think Ahead so it can be made available online. It will be an important resource for SAGE, the Support & Advocacy Service for Older People, which we are currently developing with the HSE and Atlantic Philanthropies.


The ‘Think Ahead' form can be downloaded from www.thinkahead.ie.



IHF welcomes Dáil Committee report calling for development of national end of life strategy

Posted on: July 15th, 2014

The Irish Hospice Foundation, (IHF), today welcomed the report from the Dail Committee on Health and Children calling for the development of a national strategy on palliative care, end of life and bereavement.


Chief Executive Officer of the IHF, Sharon Foley, said she hoped the government will act on the findings of the report and put palliative and end of life care at the top of health and other policy agendas. She commended the Dail Committee chairman, Jerry Buttimer TD, and members for the hearings saying “a great service” had been done for the country.


Ms Foley said on average 29,000 people die in Ireland each year and as many as 290,000 are left bereaved annually.  Using international research, there is an estimated €1.3 billion being spent on end of life care every year, but this spend is largely unplanned and uncoordinated.


“We passionately believe that much more can be done to support the health and social services to deliver better end of life care everywhere and this report is a major step in this direction.”


“It is the right of every person to die in comfort and dignity but this is something we must plan for. It is possible to secure high quality care for those facing death while also ensuring the very best use of resources. A national strategy on palliative care, end of life and bereavement, as recommended in todays report, will play a key role in ensuring this.”


Ms Foley said this strategy must be for the entire population – from those who need GP support to those who need special palliative care to manage their pain and other complex symptoms and to those left behind and facing grief. The strategy, she stressed, needs to be relevant to patients of all ages with all conditions including dementia.


“It also needs to be wider than healthcare. It needs to look at the economic, administrative and legal issues including the funeral industry and bereavement.”


Ms Foley also welcomed the committee recommendation that the Government address the regional disparities which exist in the provision and funding of specialist palliative care services in Ireland.


“As many as 2,500 patients have no access to in-patient hospice care in their area as they don’t exist. We have three regions in Ireland with no in patient hospice units – the north east, the midlands and the south east, as well as Kerry, Wicklow and Mayo.  Citizens are living and dying with an inequitable system. We have approximately 150 hospice beds today but we should have 450 and we also have significant deficits in hospice staff. “


Ms Foley said more need to be done to help people fulfil their wish to die at home. Figures show that while 67 per cent of us would prefer to die at home only 26 per cent of us will do so while another 25 per cent will die in long stay settings. “Lots of good work is being done through the IHF Primary Palliative Care programme, the Hospice home care teams and national hospice homecare for children programme.  In the latter, we we are funding 85% of the programme which is supporting families to care for children, with life limiting illness, at home.”


“This report, along with the recent report by the Ombudsman on end of life, will make a serious contribution to the national conversation on death and dying and bereavement and I warmly welcome it.”


Note: Link to Oireachtas Committee report on End of Life launched today http://www.oireachtas.ie/parliament/oireachtasbusiness/committees_list/health-and-children/reports/


New report from ombudsman highlights end-of-life care

Posted on: June 27th, 2014

A 'good death' in Ireland  

A new report released today (June 27th) by the office of the ombudsman examines the care given to patients and families at end-of-life. 

A good death - Office of Ombudsman report June 2014

 'A good death; A Reflection on Ombudsman Complaints about End of Life Care in Irish Hospitals'  reviews complaints made to the office in 2013.


The report acknowledges the long lasting effects of poor communication, lack of patient autonomy and dignity in end-of-life care. As the impact of these failures on bereaved family is traumatic and long lasting, it highlights the need to learn from complaints received. 


The ombudsman highlights the work of the Irish Hospice Foundation and the Forum on end-of-life in promoting national dialogue and encouraging end-of-life care planning. 

The full report can be accessed HERE and is available on the Office of the Ombudsman website.