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Bereaved relatives deem privacy key to good end-of-life hospital care

Author: Petrina Vousden
19 June 2017
  • Research team, from left to right: Dr Sarah Donnelly, Margaret Codd, Geraldine Prizeman, Bettina Korn, Diarmuid Ó Coimín, Mairéad Curran and Dr Geralyn Hynes

A single room is key to providing good care at end of life in a busy hospital, according to the largest survey of bereaved relatives undertaken in Ireland.

The majority of relatives who responded to the survey rated the quality of care their relative received at end of life as good or excellent. But one in eight rated care as poor.

Car parking fees, lack of privacy and an absence of palliative care at weekends were among the concerns raised by people polled.

Seven out of ten respondents said their relative had died in a single room. For one quarter – 26 per cent – this was not the case.

For several relatives, problems with car parking caused additional stress at what was a very difficult time for them. They suggested that the cost of parking in hospitals was too high and while in certain circumstances, assistance was available, they were not made aware of

this.

The majority of respondents reported that they were cared for sensitively after their relative died. However 4 per cent indicated that this was not the case.

Ombudsman Peter Tyndall said the report provides honest, balanced and current feedback and can be used as a platform to further improve end of life care across our hospital system.

The next-of-kin of almost 800 people who died in the Mater Hospital or St James's Hospital in Dublin between August 1st, 2014 and January 31st, 2015 were contacted to take part in the pioneering research. A total 356 responded to the survey.

The purpose of the “VOICES MaJam” research led by principal investigators Diarmuid Ó Coimín and Bettina Korn was to evaluate, from the perspective of bereaved relatives, the quality of end-of-life care provided in two acute hospital settings to support a process of continuous improvement in the care of persons, including their families, at this time.

Mr. Paul Gallagher, Director of Nursing, St. James’s Hospital, said: “This is a unique collaboration between two acute hospitals and two Dublin universities, which has produced insightful findings and recommendations on end-of-life care from the perspective of bereaved relatives.

“Although the survey found that 90 per cent of relatives reported that patients were treated with dignity and respect, management and hospital staff need to continually work together to enhance this figure. End-of-life care is an experience that touches the lives of everyone on a personal and professional level.

“The Mater Misericordiae University Hospital and St. James’s Hospital will continue to strive to ensure that people who are diagnosed with a life-limiting illness or who die in our care experience a place of sanctuary where they are cared for in comfort and dignity and their families are supported in their bereavement.”

Key recommendations from the report are: 

  •      Healthcare staff need to proactively engage in earlier conversations with patients and families about advance care planning and end-of-life care preferences.
  •  Hospitals should ensure timely provision of a single room for end-of-life care in line with patient preferences.
  • The route of admission for terminally ill patients via the Emergency Department to acute hospitals in Ireland should be considered by hospitals and state agencies.
  • Surveying of bereaved relatives should be conducted at a national level to support benchmarking of end-of-life care quality improvement initiatives and collaboration between healthcare organisations.

 Prof. Tanya King, Director of Nursing, Mater Misericordiae University Hospital said:  “The VOICES MaJam report is a significant step to further understand, and most importantly promote, the continuous improvement of the quality of end-of-life care provided in both the Mater Misericordiae University Hospital and St. James’s Hospital.

“The VOICES MaJam report has proven to be a meaningful method of evaluating the care at end of life in an acute hospital from the perspectives of bereaved relatives. The high response rate, the unanticipated volume of qualitative data, including expressions of support for the survey, indicates that bereaved relatives value being asked about their care experiences. 

"Whilst recognising that 87 per cent of respondents viewed the quality of care provided as high, bereaved relatives have also outlined opportunities for the hospitals involved in this study to improve the quality of care provided at end of life. These findings shed a light on areas that need to be improved, and we will work hard to ensure these areas are fully addressed.”

The purpose of the “VOICES MaJam” research led by principal investigators Diarmuid Ó Coimín and Bettina Korn was to evaluate, from the perspective of bereaved relatives, the quality of end-of-life care provided in two acute hospital settings to support a process of continuous improvement in the care of persons, including their families, at this time.

The study examines care during the last admission to hospital with some questions focusing specifically on care in the last two days of life, providing insights into experiences of care at this critical time in a person’s life.

End-of-life care is a universal experience and 43 per cent of all people that die annually in Ireland die in adult acute hospitals with 6 per cent of people dying in hospices

Peter Tyndall said: “The sad reality is that each and every one of us has a vested interest in making sure that end of life care across our health services is of a high standard. Those moments at the end of a loved one’s life are extremely precious and will be relived over and over again. The complaints, which reach my desk frequently illustrate the profound and lasting impact poor experiences of end –of-life care can have on family members and friends alike.”

He said significant progress has been made in improving facilities and training for staff in our hospitals.

“This has primarily been achieved through the Hospice Friendly Hospitals Programme, which was initiated by the Irish Hospice Foundation in partnership with the HSE. The aim of this Programme is to ensure that end of life, palliative and bereavement care is central to the everyday business of hospitals. As it stands, some 47 hospitals across the country are signed up to the HFH programme and I would encourage all hospitals to actively participate in this most worthwhile initiative,” Mr Tyndall said.

He acknowledged the “excellent work” which is being carried out in many hospitals by End of Life Care Committees and End of Life Care Coordinators who are focused on implementing the Irish Hospice Foundation’s Quality Standards for End of Life Care in Hospitals.

Voices is an acronym for: Views of Informal Carers - Evaluation of Services and MaJam is an acronym for Mater Hospital and St. James' Hospital.

The full report can be viewed here.

 


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