Published on 15 June 2017
*Voices is an acronym for: Views of Informal Carers - Evaluation of Services and MaJam is an acronym for Mater Hospital and St. James' Hospital
Ladies and Gentlemen, I would like to thank the CEOs and the Directors of Nursing in the Mater University Hospital and St James Hospital for their kind invitation to launch the Voices MaJamSurvey of Bereaved Relatives Report today. My sincere congratulations to all those involved in this important piece of research which represents the largest survey of bereaved relatives in two acute Irish hospitals to date.
I very much welcome this Report which provides honest, balanced and current feedback and can be used as a platform to further improve end of life care across our hospital system.
As Ombudsman, my role is to examine health and social care complaints, independently and impartially. I engage with both complainants and health service providers to determine whether individuals have been treated fairly in their own right and to seek redress for those who have been adversely affected. I also ensure that complaints are always considered from a wider learning perspective with a view to creating possible systemic improvements for others.
Unfortunately, it is difficult to capture information about end of life experiences. For sensitivity reasons, bereaved families are often excluded from patient experience audits or surveys. But, death and dying is part and parcel of life in every Irish hospital. I would, therefore, like to commend all those involved in the undertaking of the Voices Survey for their genuine interest and commitment to quality care. 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.
In 2005, my predecessor, Emily O’Reilly, published a report following an investigation into a complaint from a bereaved family about their late father’s care. The report highlighted the need for clear communication with relatives about prognosis and for all hospital staff to be familiar with last rites policies. In this case, the deceased’s belongings had been placed in black plastic bags and positioned under the hospital’s Christmas tree. The bags were later found to contain a box of disposable gloves. The report triggered considerable debate at the time and resulted in the introduction of the “hand over” bag nationally for the deceased’s belongings.
The Good Death Report, which I published in 2014, was a reflective and learning exercise covering the areas of communication, privacy, pain management, provision of written information for families and the importance of good record keeping. The need for patient privacy was reinforced in my Report by the quote from actor Gabriel Byrne who said:-
‘I attended the bedside of a friend who was dying in a Dublin hospital. She lived her last hours in a public ward with a television blaring out a football match, all but drowning our final conversation.’
However, since the publication of both reports, it is fair to say that 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.
In addition, I would like to acknowledge 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 focussed on implementing the Irish Hospice Foundation’s Quality Standards for End of Life Care in Hospitals.
It would be remiss of me not to mention that recently a Joint HFH/HSE Oversight Group, with a representative from my office, has also been established. This Oversight Group, under the Chairmanship of Professor Cillian Twomey, was formed to further support the embedding of the HFH Programme nationally within HSE structures and to enable shared learning across our hospitals.
Sadly though, the many competing demands within our hospital services can often distract from the needs of dying patients and their families. As one respondent to the Survey wrote -
“We as a family never had a family room to talk to mam in private, everyone can hear your business in wards. Even on her last day when we were advised to come in, we had nowhere to make a cup of tea or sit in private. We had to use a storage room which just adds to your distress”.
It was interesting for me to see that the shortcomings identified in this Survey mirror the complaints that reach my desk. Some recent complaints I have received related to, for instance:-
One complainant told me how his late wife was placed in a small cramped room, which held cleaning equipment in the hospital, in order to give her and the family some level of privacy during her end of life stage. Clearly, hospital staff were doing their best within available resources to meet that family’s needs but it was hardly ideal.
The most important person in all of this of course is the individual whose life is imminently due to end. Acute hospital services staff, who are responsible for the person’s care in their final days, have to ensure that the person’s dignity is maintained and the wishes of his or her family are met, in so far as this is possible, in the lead up to the person’s demise.
Another complainant told me that she was left unsure about her husband’s prognosis having been told by the doctor that it “was unclear where his demise would be”. I am also aware of a doctor who advised a patient, who had been diagnosed with cancer, that his condition was “incompatible with life”. The Survey itself quotes a respondent who said that “The lady that rang me told me that he had “expired”. I had to ask her a few times what she meant”…
These examples highlight the absolute importance of conveying information, which is clearly going to have a profound impact on the patients and/or the families involved, with the utmost sensitivity and clarity. I fully appreciate that imparting bad news about a terminal illness is never easy for the staff involved. While past experience of managing such situations helps, it must be acknowledged that conveying devastating news to patients and families alike also takes its toll on the person imparting the news.
In this connection, there is an excellent short video that can be accessed from the Irish Hospice Foundation’s Website that has been specifically designed to assist staff on how to go about delivering bad news. It provides a 5 step plan to help staff do this effectively and sensitively using simple and clear language. The video is a valuable learning tool which is easily accessible to our health professionals who have to impart life changing news to patients or their families.
The results of the Survey Report provide us with considerable “food for thought” in this regard. I would strongly urge service providers to reflect on its recommendations which, in my view, provide us with a clear pathway to improve end of life care in our hospitals.
The Survey Report has made a number of important recommendations which provide clear pointers to areas for improvement. These recommendations are applicable to a wider audience and could include all healthcare settings involved in the provision of end of life care. Some of the key recommendations include:-
On a positive note however, it is most reassuring to see that 90% of relatives reported that patients were treated with dignity and respect all or most of the time. Furthermore, 75% of relatives said they were involved in decision making and 81% had visited their relative outside of visiting time. All of these outcomes reflect very well on both hospitals involved and are a credit to the staff who clearly strive to provide compassionate and patient focused care.
As I often think, it is the small and unexpected kindnesses in life, which mean the most to us. This Survey shows that relatives deeply appreciated it when staff showed them kindness that went above and beyond what was expected of them. I was particularly touched by some of the thoughtfulness reflected upon by respondents who said:-
“They came to know my name - as I was still working fulltime they would wait for me to arrive from work to give me a daily report and sometimes a hug for which I will be eternally grateful”.
And another quote
“The care my mother (92) received was outstanding. She was treated with love, care and respect until the minute she died. The staff did their utmost at all times to ensure her comfort and well-being. They were so kind to her, doing small things such as putting curling tongs in her hair. This was on top of her usual personal hygiene and nursing care”.
I fully recognise the almost impossible challenge for health care managers and health care practitioners in seeking to ensure a positive experience for all patients and their families. However, caring staff who are attuned to the needs of their patients and relatives can make a tremendous difference to their final journey.
It is encouraging to note that the reported experiences are mainly positive and the hospitals concerned can be proud of their achievements. It is clear that the hospital staff are focussed on delivering compassionate end of life care. It is also clear that they have been proactive in seeking to find out, from the perspective of the service user, how they can do better.
I sincerely believe that the report provides us with a very sound basis to develop policy in the area of end of life care. It identifies a series of practical recommendations that fully reflect the feedback from the research undertaken. I cannot stress enough the need to ensure that in delivering end of life services, we put the welfare and dignity of the dying person, and the need to sensitively provide information and comfort to relatives, at the forefront of our thoughts. I am pleased to note that these two objectives are very much reflected in the report’s recommendations.
Finally, I would like to conclude by commending the Senior Management Team in both hospitals for endorsing the implementation of this Report. I am confident that the recommendations made will be widely adopted as a means of improving our hospital facilities and services for terminally ill patients and their families.
I think it would be fitting to finish on a quote from the late Dame Cicely Saunders, founder of the modern hospice movement which says:
“You matter because you’re you, and you matter to the end of your life. We will do all we can not only to help you to die peacefully, but also to live until you die.”
Thank you very much.