Published on 20 September 2018

Good morning Ladies and Gentlemen,

Tá fáilte romhaibh chuig seoladh an tuarascáil seo.  I would like to extend a very warm welcome to you all and especially to those of you who have travelled long distances to be with us this morning.  I will be talking about the very significant progress that has been made in end of life care in Ireland over the past four years, along with some of the key areas that still need attention. I am delighted to be joined by –Liam Woods, National Director, Acute Operation, HSE, Sharon Foley, CEO, Irish Hospice Foundation, Professor Cillian Twomey, Chair, Joint HSE/IHF Oversight Group and Mr Tom Curran, Voices4care. The panel of speakers will be talking about their ongoing work in improving end of life care and we will also be launching the HSE/IHF’s public information booklet entitled:-

 “When someone you care about is dying in hospital – What to expect”.

I would like to congratulate the HSE and the IHF on the publication of this booklet, an excellent resource for patients approaching the end of their lives and their loved ones.

Every year, 29,000 people die in Ireland and up to 290,000 are newly bereaved. At some point, dying, death and bereavement affects us all. Not everyone will be able to die at home, so the need to improve the experience of dying in hospital for patients and their families is an important consideration.

My role as Ombudsman is to examine complaints about public services and to recommend improvements where possible. If something goes wrong with the care provided at the end of a patient’s life, it is clearly too late to put matters right for the person who has been most affected. A poor experience of a loved one’s death in a hospital can leave a lasting negative impact on the family and will often make the bereavement process so much more difficult. It is important to understand that dying with comfort and dignity is a human right. Therefore, compassion, dignity and respect must be part of everyday practice.

In addition to complaints, hospital surveys (such as the Survey of Bereaved Relatives: Voices MaJam in 2017) of bereaved relatives also provide insight into the experience of families and can lead to improved standards of care. The information and feedback from that Survey is invaluable and can be applied across the hospital system. Information is key for service providers. Currently, the IHF, in conjunction with the Acute Hospitals Network, is trying to ascertain whether hospitals have the ability to log information about the number of patients who died in single rooms in the month of September, along with the actual number of family rooms available. I believe that Sharon will be speaking more about the ongoing work of the IHF.

Four years ago, I published “A Good Death” report that reflected on some of the end of life care complaints that my staff had examined about Irish hospitals. The complaints arose from their bad experiences in public hospitals at the time of a final illness and death of a loved one. All of those people believed that this distress was avoidable. The cases in that report highlighted lapses in standards with regard to communication, a lack of regard for patient autonomy, inability to access specialist palliative care and poor management of complaints.

The purpose of that Report was not to lay blame on particular institutions or professions, but was intended to be a reflective and learning exercise. I am pleased to note that since its publication in 2014, there has been a heightened focus on providing quality care for dying patients in hospital and in residential care settings.

There have been:

  • increases in the range and extent of education and training for staff;
  • improved physical facilities for dying patients and their families; and
  • greater emphasis on the provision of information to patients and their families on end of life.

These achievements are due to the dedication of the staff in the HSE and the Irish Hospice Foundation who have worked continuously to drive improvements across the services. I am particularly pleased to note the increase in the number of End of Life Co-ordinators and End of Life Committees in hospitals nationally. They play a key role in ensuring that Hospice Friendly Hospital practices and protocols are in place for patients who are dying.

One of the more recent key initiatives and drivers of change has been the establishment of the HSE/IHF Joint Oversight Group. Last year, I met with delegates from the Group chaired by Professor Cillian Twomey, who will be speaking today. This partnership approach seems to be working very well and I have no doubt that it will achieve all that it has set out to do.

Our health services come under fire on a daily basis. We seldom hear about the “good outcomes” in our hospitals. I wanted to help address that imbalance and give credit where it is due. This Progress Report provides us with an opportunity to take stock of the achievements so far. It also helps us to consider the next four years and to highlight the key areas that warrant attention.

Let us look at some of the developments under the headings in the Progress Report:-

“A Good Death” report described how inadequate communication affected patients and their families. In response to need to provide ongoing training and education for staff, the IHF has developed training workshops for hospital and residential care staff that include:

  • the Final Journeys Workshop;
  • Breaking Bad News Workshop; and
  • The CEOL (Compassionate End of Life) Programme for residential settings. This provides a framework for staff to reflect, review and enhance the end of life care provided in nursing homes and a system for introducing improvements.

In health and social care, patient autonomy involves the person who uses services in making informed decisions about the care, support or treatment that he or she receives. Since the publication of “A Good Death” report, public health campaigns and advocacy groups have highlighted the value of using the Think Ahead form, which includes an Advance Healthcare Directive. The Irish Hospice Foundation also has put in place training programmes for staff and families, as well as a suite of information materials for people with life limiting illness to help them plan for their future. In 2015, the Assisted Decision Making (Capacity) Act (ADMA) was enacted. This legislation promotes the autonomy of the individual in making decisions about their treatment. I understand that the Decision Support Service is developing a governance structure for Advanced Healthcare Directives, but that the service will not be fully operational until 2020. Meanwhile, however, hospitals and care centres will generally comply with the stated wishes and preferences of patients as set out in their Advanced Healthcare Directives.

A Pilot Project in St Vincent’s University Hospital introduced new guidelines and systems for the early identification of patients with palliative care needs in the Emergency Department (ED). A Clinical Nurse Specialist in Palliative Care is employed in the ED to facilitate the early and rapid review of patients. The impact of this pilot project on both patients and staff alike has been very positive. St Vincent’s Hospital has extended the project and it is about to be introduced in the Mater University Hospital.

The HSE’s Project ECHO (Extension for Community Healthcare Outcomes) provides palliative care training and support for staff in nursing homes in South Dublin directly from Our Lady’s Hospice through videoconferencing. The project has helped to address the growing need to provide palliative care training and support to healthcare professionals working within the nursing home sector.

Practical supports for family and friends are in place in many HFH hospitals to help the families and friends of the dying person including:

  • Single rooms for end of life care
  • Family rooms
  • Refurbished mortuaries
  • Car parking
  • Flexible visiting times
  • National information booklets on end of life related matters
  • Handover bags
  • Multicultural guides
  • Use of end of life symbol on wards and in rooms
  • Remembrance services for patients who have died
  • Sympathy cards sent to bereaved relatives.

In response to the need to make information on post mortem examinations more widely available the HSE/IHF Oversight Group has recommended that a National Patient Information Leaflet should be developed. This will be based on the HSE Standards and Recommended Practices for Post-Mortem Examination Services document, and build on the existing staff resources, including the material recently developed by St James’s Hospital. The hospital has developed a ten-minute video detailing the range of documentation the different professions are required to complete when a patient has died. It provides a checklist for the care of the deceased patient and aims to support staff to undertake the steps necessary when caring for the deceased patient and his or her family.

Short information videos are an excellent way of providing training and relevant details for staff. I would like to congratulate the staff at St James Hospital for this initiative.

From an Ombudsman’s perspective, I believe that a more consistent, timely and compassionate approach is still needed in the handling of complaints about end of life care. Making a complaint can be a daunting prospect for people generally but this is particularly true of bereaved families who are grieving the loss of a loved one. It is vital that complaints officers are properly trained so that they can examine a complaint in an empathetic manner. Delayed, defensive and incomplete responses only serve to heighten the sense of frustration, anger and upset felt by complainants who are recently bereaved. Good complaints management is a key element of public administration. It is essential that complainants have access to an open and responsive complaints system that objectively identifies and acknowledges shortcomings when they occur and readily apologises for them. Complaints provide us with an opportunity to reflect on the way services are provided and to learn from the poor experience of others.

This Progress Report sets out eight key recommendations which if implemented should ensure that quality end of life care is available for every patient across our hospital services. Much progress has been made in recent years thanks to the determination and hard work of all those involved. However, there is still considerable variation in care within hospitals in terms of access to specialist palliative care and physical facilities for dying patients and their families. We need to ensure high standards are in place throughout all hospitals for the sake of dying patients and their families.

I would like to thank you all for coming today and to wish you continued success with this vital work.

Peter Tyndall