New publication builds on ethical framework for end-of-life care

A new book due to be launched by Cork University Press on November 16th develops and expands on the Ethical framework on end-of-life care produced by the Hospice Friendly Hospitals programme last year (more details HERE)

End-of-life Care ethics and lawwritten by Joan McCarthy, Mary Donnelly, Dolores Dooley, David Smith & Louise Campbell takes the eight modules of the ethical framework as its foundation.

The book draws on the body of research on the ethical issues in caring for patients at the end-of-life. It pulls together guidelines, codes of conduct, legal positions and bioethical perspectives to act as a multidisciplinary reference source for healthcare and legal professionals seeking clarification on these complex issues. Further details and context on the publication are available HERE.

National Council of the Forum on End of Life – Annual Forum October 12th

One can survive everything nowadays, except death…‘ Oscar Wilde

Following on from its extensive public consultation during 2009 and 2010 which culminated in the publication of ‘Perspectives on End-of-Life; report of  the forum‘ the Irish Hospice Foundation’s National Council of the Forum on End-of-life in Ireland was established in July 2010 and is now engaged in a work plan based on the public consultation. Their work plan identifies a number of areas for action and among other initiatives they are currently engaged in addressing the lack of regulation in the Irish funeral industry, more details of this are available HERE 

The range of activities of the National Council of the Forum will be brought together under the theme of ‘Resilience’ at their annual seminar to be held on October 12th in Croke Park.

The annual forum will see the formal launch of the ‘Think ahead’ project, by an Taoiseach Enda Kenny. The ‘Think ahead’ initiative aims to instigate communications about end-of-life wishes and preferences in the event of serious illness or death. The programme of talks and workshops for the forum cover a broad spectrum of perspectives on death and dying including a workshop on the Medicalisation of dying by Professor Aidan Halligan (former Deputy Chief Medical Officer for England) and the Mary Holland Commemorative lecture will be delivered by author & foreign correspondent Conor O’ Cleary.

The event aims to engage participants from a wide range of backgrounds and disciplines in examining the challenges of achieving a good death.

The full programme for the forum along with booking details are available HERE      

Taking a lighter look at death

A new print and online magazine launched at the end of July is the latest venture aimed at making death less of a taboo.

Eulogy magazine is the first glossy lifestyle magazine to tackle the subject of death head on. The outlook is intended to be upbeat rather than morose and the aim is to get people talking about and celebrating life and death. Features will include personal stories of loss, approaches to mortality, funerals and coping with bereavement.  The first issue features articles on near death experiences in extreme sports and the Mexican day of the dead.

In a similar vein is the US focused Obit Magazine which also casts a cold eye on life and death and its features include a best send off strand documenting larger than life funerals as well as daily ‘died on this day’ updates. Obit has a strong arts and literature focus, illustrating the impact of mortality on creative output.

The Death reference desk blog equally aims to illuminate both the sublime and the ridiculous approaches to mortality with features on death in literature, memorials,  rituals and multicultural responses to death.

Irish views on death & dying

New research published in the current volume of the Journal of Medical Ethics (Vol 36) presents the findings of a survey aimed at examining the Irish public’s understanding of death and dying.

The national survey, funded by the Irish Hospice Foundation asked respondents to comment on a range of ethical issues in relation to death and dying including questions about their familiarity with terms like advance care directive, palliative sedation or artificial hydration as well as questions about their attitudes to death and dying, their preferences for treatment and decision making in event of terminal illness.

Responses indicate that there is a general lack of awareness of the terminology of end-of-life care, that most respondents expect honest communication in relation to terminal diagnoses and that a large degree of trust still exists in physicians ability to make the right end-of-life care decisions. Consistent with patient and family responses in the National audit of end-of-life care, the research indicates that for most people the quality of death is important.

Article abstract is available HERE and access to a full text copy is available via the Therese Brady Library

Kaleidoscope Conference 2010

Kaleidoscope, the annual palliative care conference organised by St Francis Hospice took place in Dublin Castle yesterday and today (June 2 & 3).

The conference which focuses on palliative care brought together delegates from Ireland, The UK, Australia, The USA and New Zealand.

Among the keynote speakers was Dr Michael Kearney whose address on ‘Being a healer’ drew upon greek mythology and Jungian archetypes in discussing the movement toward clinician self-awareness and fostering of the innate healing ability.  Dr David Oliviere of St Christopher’s Hospice addressed the resilience inherent to the spirit of palliative care.  Of the many speakers, a personal favourite had to be Dr Sinead Donnelly, palliative medicine consultant at Wellington Regional Hospital, New Zealand whose talk  ‘The Ends of the Earth: Cultural and Social Diversity in Palliative Care’ skillfully blended her own experience of adapting to practising in New Zealand with touching, beautifully detailed accounts of patients she had treated during her time in Wellington. Dr Donnelly closed the Wednesday afternoon session with the Irish premier of her documentary ‘Going home’, an intimate portrait of four families’ personal experiences of their loved ones death. The documentary distilled both the philosophy of palliative care to enable a ‘good death’ and the central theme of the conference; to promote connection and caring in palliative care practice.

Conference presentations and handouts are available HERE . Well done to the team at st Francis Hospice for a very well organised conference

Launch of Quality standards for end-of-life care and audit on end-of-life report

Standards development coordinator Helen Donovan & Minister Mary Harney at the launch of 'Quality standards for end-of-life care in Hospitals' Clontarf castle May 19

Wednesday’s Hospice Friendly Hospitals conference ‘End-of-life care; from the margins to the mainstream’ saw the launch of the report on the first ‘National audit of end-of-life care in Hospitals in Ireland’ and the new ‘Quality standards for end-of-life care in Hospitals’

These publications mark the end of phase one of the Hospice Friendly Hospitals programme and represent a significant contribution to the understanding of current practice and future development of end-of-life services in Ireland. The audit, which surveyed end of life care in 24 acute hospitals (75 % of the acute sector) and 19 community hospitals (20% of community sector) presents a unique multi dimensional approach to assessing death and dying in Irish hospitals illustrating the  varying perspectives on quality of care at end of life from doctors, nurses, hospital staff patients and relatives.

Among the audit findings are;

  • 20/25% of patients could have died at home were adequate supports in place
  • Information given to patients’ relatives is often not adequate
  • Quality levels vary across diseases with cancer at the high end of the spectrum and dementia at the lower end
  • The hospitals treatment of the family has a lasting effect

The Quality standards, launched by  Minister Mary Harney at Wednesdays conference were  developed as a framework around which to implement quality care. They have been arranged around the four key areas of Hospital – Staff – Patient -Family and aim to provide access points from which hospitals can integrate compassion and communication into processes and practice.

The quality standards and the audit report are available to download from the Hospice Friendly Hospitals website or hard copies can be obtained from the Irish Hospice Foundation