Covid-19 Evaluation
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Share Your Experience

End-of-Life-Care Co-ordinator Network Submission to COVID-19 Evaluation

Introduction

This submission has been developed on behalf of the End-of-life-Care Co-ordinators (EOLCC) Network. The EOLCC network is part of the Hospice Friendly Hospitals (HFH) programme, which is an Irish Hospice Foundation (IHF) initiative delivered in partnership with the Health Service Executive (HSE). HFH seeks to ensure that compassionate end-of-life, palliative, and bereavement care is central to hospitals in Ireland. The EOLCC role is to lead, support and coordinate all activities associated with implementing the Quality Standards for End-of-Life Care in Hospitals (IHF & HSE 2010) and quality improvements identified by patients, their families, hospital staff, and the HSE. As EOLCCs, we were present in acute hospitals across the country throughout the pandemic. We witnessed first-hand the experience of patient’s, their families and healthcare workers in relation to dying, death and bereavement. We were instrumental in advocating for the preservation of dignity in dying, death and bereavement by supporting front-line staff and finding innovative ways to ensure dying patients and their families were a priority amidst the overall pandemic situation. We therefore feel well placed to offer valuable insights into the impact of COVID-19 on end-of-life-care in acute hospitals and the lessons that should be learned.

Protection of Compassionate, Family Centred End-of-Life-Care 

The pandemic and the associated public health measures caused major disruption in the normal functioning of hospitals and the delivery of quality end-of-life care. The increase in number of deaths, alongside public health measures to reduce the spread of infection, resulted in extreme pressure on an overstretched healthcare workforce.

The restrictions which were placed on family presence in hospitals, particularly when a person was dying, continue to have an impact both on those who were bereaved and healthcare staff who found themselves using their own mobile devices to help patients and families connect and frequently facilitating calls to allow families and dying patients say their goodbyes.

Restricted access for visiting continues to impact on the experience of end-of-life-care. This is illustrated by the National End of Life Survey (National Care Experience Programme 2023) which found that 38.7 % participants whose family member died in an acute hospital, reported that visiting restrictions prevented them from visiting as often as they wished. Furthermore, 33% of those who completed the survey indicated that they did not feel welcome to visit their relative or friend during their last stay in hospital.

Some healthcare organization adapted quickly to visiting restrictions by providing virtual visiting services. These services were offered to patients who required support to connect virtually with their family and friends, and helped meet their emotional and psychosocial care needs. Tablet devices were also used to ‘bring’ relatives on ward rounds, ensuring their perspectives were heard and they were informed about the patient’s situation. In an era where electronic equipment and telehealth is becoming embedded within healthcare, the communication needs of patients during restricted visiting times must be considered and met.

In addition to challenges around family presence and visiting in hospitals, many bereaved families experienced additional distress when their family member died with COVID-19. These families were often denied the opportunity to see their loved one after death, and did not have the opportunity to ensure the deceased person was dressed in clothing they would have chosen. All bereaved families were impacted by the lost opportunity to have a traditional funeral and the requirement to respect the guidance that was in place at the time for funeral arrangements e.g. capped attendance numbers, restricted access to graveyards, social distancing. The ‘Time to Reflect survey’ (IHF 2023) indicates that these experiences added to the grief burden of those who were bereaved during the pandemic and increased the risks of the bereaved developing complicated grief.

We therefore recommend that the COVID-19 evaluation recognises the importance of maintaining compassionate end-of-life care that is patient focused, in the event of a future public health crises. We also recommend that national visiting policies are revised to place an emphasis on the importance of family presence and enables clinical staff to invite and support families to visit as often as they wish, when a family member is at end-of-life-care, even amidst any future public health emergency. When visiting times must be restricted, we recommend that telehealth technologies are utilised to support patients stay connected with their family. Furthermore, we recommend that the impact of altered care after death protocols and funeral practices on the bereaved is taken into consideration in future public health emergencies.

Enhance Bereavement Supports

Prior to the onset of the COVID-19 pandemic, bereavement supports were inadequate to meet the needs of bereaved children & adults. This became even more apparent during the pandemic. We acknowledge that communities and community led organisations were, and continue to be, at the frontline of supporting people who are grieving. However, these organisations are not adequately supported or recognised in the delivery of this work. There is also a regional imbalance in the availability of services. Larger populated areas have more services, often with professional support, in comparison to rural areas where there are fewer services which are more reliant on volunteers. Funding and support for community-based organisations must be stabilised and multi-annual, allowing for development and continuity of support, particularly in future public health emergencies. In the acute hospital environment enhanced investment is required to ensure that each hospital can provide a bereavement support service. This could be achieved by ensuring that there is a dedicated Bereavement Co-ordinator in every hospital.

To address these concerns, and to protect and support future populations of bereaved people we recommend greater investment in bereavement support services in community, primary care and acute care settings.

End-of-Life Care Education and Training for Healthcare Staff

The value of a healthcare workforce that was educated and equipped to deliver EOLC became evident during the pandemic. In order to future proof for quality end-of-life-care experiences, resources need to be ring fenced to ensure that all healthcare staff (including nurses, doctors, , porters, catering, cleaners and clerical and reception staff) should receive targeted education and continuous training to equip them to deliver quality end-of life and bereavement care. We recommend that completion of available end-of-life-care and palliative care workshops and education programme such as ‘Final Journeys’, ‘Practical Language and phrases for end-of-life-care in acute hospitals’, ‘Palliative Care Needs Assessment’ e-learning package and ‘End of Life Conversations’ become mandatory for all relevant staff.

Bereavement Support for Healthcare Workers

The impact of COVID-19 on healthcare workers needs to be recognised. WE need to have access to specialised bereavement support that acknowledges that they will have ongoing personal and professional grief, not just through public health emergencies but routinely in their work. As EOLCCs, we were and continue to be a resource for healthcare staff who need to discuss their experience of delivering end-of-life-care and the sense of moral injury they continue to carry as a result of the pandemic. While advocating that health services are equipped to provide bereavement support services to patients and families, we also recommend that greater investment is needed in supports to enable healthcare workers deal with the impact of personal and professional grief and bereavement in their work. 

End-of-life-Care Co-ordinator Role

EOLCCs were able to use our expertise to assist HSE Acute Operations, local hospital management and hospital staff to mitigate many of the challenges that the COVID-19 pandemic created for dying death and bereavement. Our contribution included enhanced advocacy for person centred end-of-life-care, developing practice guidelines for care after death, assisting in development of protocols in the event that mortuary capacity was breached, implementing revised procedures for reporting relevant deaths to Coroners and providing ongoing end-of-life education to hospital staff. While the number of EOLCCs in the acute hospital system increased over the pandemic period, some of the post holders were redeployed to direct care posts at a time when the EOLCC role was critically important. We recommend that the role of EOLCC is expanded across the acute hospital system, protected from redeployment in the event of future public health emergencies and that vacant posts are filled promptly. 

Optimising Hospital Environment

The EOLCC network recognises the importance of enhancing the hospital environment to improve patient’s, families and staff experience of end-of-life-care. Collectively we have been involved in developing high quality spaces including family rooms, palliative care suites, bereavement suites in emergency departments and hospital mortuaries to create oasis of calm, privacy and peace for patients and their families at very challenging times in their lives. We acknowledge the support of Design & Dignity (an initiative of IHF & HSE Estates), HSE Mortuary Capital Development programme, as well as many local fundraising partners in bringing these projects to fruition. Many of these spaces were taken over for clinical purposes during the pandemic some of which have been restored to their original function whist others continue to be used as clinical spaces to the detriment of high quality end-of-life care.

Care in single rooms at end-of-life is a proven indicator of quality end-of-life-care in acute hospitals The National End of Life Survey demonstrated a strong correlation between deaths occurring in single rooms and bereaved relatives’ satisfaction on location of death. When death occurred in hospitals 81% of those whose loved one died in a single room indicated that they died in the right place, compared to 51% of those whose loved one did not die in a single room (National Care Experience Programme 2023). Single rooms are also a valuable asset in terms of infection prevention and control. The pandemic brought into focus the need to increase the available stock of single room accommodation in acute hospitals.

We recommend that Design & Dignity Guidelines (IHF &HSE 2020) are incorporated into all new building and refurbishment projects in relation to end-of-life-care and that family rooms are protected from repurposing during future healthcare emergencies. Furthermore, we recommend that single room capacity dedicated for end-of-life-care is increased across the healthcare system.

Conclusion

As EOLCCs we are committed to continually improving how end-of-life-care is delivered in acute hospitals. We have presented our key learnings and recommendations from our experience of the COVID-19 pandemic. These can be summarized as

  1. Protect compassionate, family-centred end-of-life-care.
  2. Utilise telehealth technologies to support patients stay connected with family..
  3. Resource community and hospital bereavement services sustainably.
  4. Mandate comprehensive end- of-life-care training for every staff role.
  5. Resource bereavement support for healthcare workers.
  6. Expand, fill and protect End of Life Care Coordinator positions nationally.
  7. Embed Design & Dignity principles in every acute-hospital environment and increase single room capacity for end-of-life-care across the healthcare system.

We urge the evaluation team to adopt these recommendations to ensure that future public health emergencies do not compromise the dignity and compassion which must remain at the heart of end-of-life-care.

References