Impact of COVID-19 on the Bereavement Experience

COVID-19 completely changed the bereavement experience for people. Disrupted funerals,
no wakes, and a handful of mourners, were completely alien to an Ireland that
is known for its funerals, for its wakes and the comfort that they provide for families and
friends. Mourners had to observe social distancing and refrain from handshaking and
hugging. All the age-old Irish rituals synonymous with remembering the dead and
supporting the bereaved were taken from us. We also recognise that new ways to
mourn and honour the dead emerged during COVID-19, but the reality remains that
many people had to grieve in isolation, disconnected from their networks of support.

The findings from Time to Reflect confirmed the depth and breadth of grief and suffering
among so many of those bereaved. The public health guidelines during the pandemic
had a big impact and were very socially isolating. Over 20% of participants to the study
were unable to attend the funeral of their loved one and almost 70% reported that
family and friends were excluded from funerals due to COVID-19 guidance.
“…We walked to the church; kind neighbours lined the route but only the
immediate family were allowed into the graveyard. The gate was closed. We
were not permitted to carry the coffin. The priest quickly said a few prayers. It
was over in a matter of minutes. Almost no one spoke to us as we walked home
in shock.”

What is positive in the Time to Reflect report is that it shows that we did find alternative
ways to support people in their grief. People were lining the streets when someone was
being buried because they could not go to the grave. It demonstrated that as a
community we did rally around when someone died.

“The need to be able to share a death with your community was something I took
for granted. Having sadly been at a number of close relatives’ funerals, I see that
the funerals with restricted numbers do not permit a family to hear lovely stories
about the deceased or feel the support of the community.”

Participants in Time to Reflect emphasised the need to grieve properly, to attend
funerals, and have the opportunity to say goodbye. However, the pandemic hindered
these activities, which are essential components of the grieving process and are core to
the Irish culture of community. One person talked about going home after the funeral of
a loved one, not having had a memorial service, not being able to share the memories,
and how difficult that was.

“When you bury a loved one during a pandemic, like I did… and you turn away
from their grave and go home to an empty house, no memorial gathering, no
extended family and friends to share the loss or share a memory. It’s by far the
loneliest of times. Something as a nation we wouldn’t be used to.”

Many calls to the Bereavement Support Line spoke openly of loss, with raw emotional
pain, both in relation to recent deaths and to deaths that had happened before the
pandemic, where anxiety and grief had resurfaced.

“Partner died suddenly in July, 33 years together. Their only son aged 16 died
suddenly 16 years ago. Never lived alone before, only dog for company. Partner’s
sister and own sister good to her. Were due to be married in June, rescheduled to
October. Partner buried in wedding suit.”

Respondents to the Time to Reflect survey also highlighted a lack of bereavement
support during the pandemic. This was often a lack of support given by a professional or
difficulty accessing support while grieving. Over 60% stated that the pandemic made
their grieving process more difficult.

Irish Hospice Foundation’s Response in the Pandemic
IHF recognised that a public health emergency required a public health response. We
advocated for a public health approach to end-of-life and bereavement care that was
strategic and coordinated.

People of all ages, in many different circumstances and with a wide range of
consequences – psychological, physical, social and economic were being faced with
the consequences of dying, death and bereavement throughout the pandemic.
The public health approach we took to our responses aimed to identify the needs
related to dying, death and bereavement and map out the appropriate informal,
community, organised and professional responses which were required.

Advocacy and Lobbying
IHF engaged in ongoing discourse with key government departments and healthcare
stakeholders such as the Oireachtas COVID -19 Committee, Minister for Health, HSE
Operations team, Chief Medical Officer and the COVID-19 Nursing Homes Expert
Panel. The purpose of our engagement was to highlight areas of concern in relation to
dying, death and bereavement and how IHF could respond in terms of providing
information, care and supports.

We actively engaged and supported the importance of national commemoration events
with An Taoiseach’s office advocating for these events to reflect the experience across
communities.

At the beginning of the pandemic, we called for hospitals and care settings to put in
place clear guidance and explanations for their visiting policies where families were
concerned. This lack of clarity led to great uncertainty and unnecessary additional
stress for people, staff included. We advocated for the numbers permitted to attend
funerals outdoors be increased.

We noted that if an absolute no-visiting policy at end of life was in place, then proactive
measures must be put in place to ensure that dying patients and residents were not left
alone and that staff used a variety of methods to bring comfort, compassion and
company to the dying person, as well as, communicating these measures and
approaches to the families sensitively.

COVID-19 was a particularly difficult time for our Hospice Friendly Hospitals (HFH) 1
programme which seeks to ensure that compassionate end-of-life, palliative, and
bereavement care is central to hospitals in Ireland. We provided additional supports
and outreach sessions to hospital staff on the issues they were facing. Most critically
HFH worked with the HSE to prepare for the mass body storage facility that was
thankfully not required.

A key outcome of our advocacy work was the establishment of the Caru nursing home
programme which was developed in response to the COVID-19 Nursing Homes Expert
Panel Report recommendations published in August 2020.

Finally, IHF used print and media to ensure that the experiences that we were hearing
about through our public engagement were being reflected in the national discourse on
dying, death and bereavement.

Services and Support
The Bereavement Support Line (BSL) was quickly established into the onset of the
pandemic (June 2020). IHF knew that we would need to respond to the anticipated
increase in bereavement needs among the population. This national freephone service
provides a confidential space for people to speak about their grief experience. We
noted that one year after the pandemic people’s grief experiences during COVID-19 still
dominated the calls.

IHF funds the Nurses for Night Care service for people dying with illnesses other than
cancer enabling them to receive expert nursing care and support at night in their own
homes in their final days. COVID-19 was a very difficult time for this service which
supports people to die in the community. The service was left very compromised by a
critical shortage of PPE and nurses, due to widespread healthcare staffing issues and
increased demand on PPE across all sectors. Nurses had limited visits and limited time
with families. At one stage when COVID-19 was very widespread, the night nursing
service was temporarily scaled back to phone support only, which operated remotely to
reduce risk and ensure safety.

1 Please note the Hospice Friendly Hospitals End-of-Life-Care Co-ordinator Network
Submission to the COVID-19 Evaluation for further exploration of the issues and
responses that arose.

Information and Resources
IHF’s COVID-19 Care & Inform Hub was launched in April 2020, to keep the public,
carers and healthcare professionals informed and supported during the pandemic.
We hosted many webinars which provided information and support around grief for the
public on topics such as Grieving in Exceptional Times, Supporting Colleagues and Staff
Who Are Grieving, Children’s Grief, and our annual Living with Loss evening.
We delivered webinars to the members of our Bereavement Networks – comprised of
mental health professionals, bereavement care providers and aligned services –
working with bereaved people to keep them up to date on COVID-19 related matters.
The Irish Childhood Bereavement Network, which is managed by IHF developed a
resource Helping children grieve during COVID-19, which focussed on sharing
practices and resources for adults supporting a child through grief.

We developed a bereavement support campaign in partnership with HSE to increase
awareness of enhanced supports and services available for people who were grieving.
With support from the Creative Ireland Programme we established an Arts & Creative
Engagement programme, which allowed us to develop arts programmes across the
country providing an outlet for people to express their grief and loss through the arts.

Education and training
IHF delivers a wide range of education and training courses for those working in the
areas of end-of-life and bereavement care. This work all had to transition rapidly online
during COVID-19 but it was an opportunity for us to grow our reach.

Organisational Response to COVID-19
Prior to COVID-19 IHF was an organisation that was primarily office based, therefore
the work from home measures had a transformative impact on how we deliver our work
although we had to overcome many challenges.

Remote access was not a feature of our work prior to COVID-19 so the work from home
measures necessitated a quick scoping and implementation of SharePoint. We had to
adopt online and collective meetings platforms, in our case Zoom was the key resource
used. We had to introduce these systems with very little training and IT expertise
available.

Fundraising activity in IHF was fundamentally altered by COVID-19. It led to an
increased interest from the public, trusts, foundations and corporates in supporting our
work but the ceasing of face-to-face fundraising events meant we had to innovate and
create successful digital appeals/challenges, which continue today.

Recommendations to Guide Future Decision Making for Public Health Emergencies

COVID-19 brought immense pain and suffering, it is incumbent on us to reflect on our
experiences during the pandemic and to use what we have learned to maximise the
potential for every person and their family to die and grieve well, whatever the cause
and wherever the place. Every death matters and we need to ensure that we do
everything we can to honour a person’s wishes and ensure dignity in death and care for
those bereaved.

The recommendations presented here are based on a number of factors: IHF’s nearly
40 years of experience working in the areas of dying, death and bereavement, the
responses we brought to bear during the pandemic, the findings from our Time to
Reflect report and the other insights we have drawn upon in considering this
submission.

1. Inform Future Public Health Policy and Practice
   In the event of future public health emergencies or pandemics, IHF as the national
   charity addressing dying, death and bereavement in Ireland, would welcome early
   and continuous engagement with public health officials regarding these pivotal
   experiences.
   
   Given our national reach and expertise across dying, death and bereavement IHF can
   be instrumental in the dissemination of information, resources and support. We are a
   recognised and trusted brand with the Irish public.
   
   We demonstrated this during COVID-19 in the effective and swift implementation of
   services such as the Bereavement Support Line and the COVID-19 Care & Inform Hub.
   These both played an important role early in the pandemic in supporting people through
   their grief and to navigate challenging end-of-life care experiences. Consideration
   should be given to how these types of resources and services can be upscaled quickly
   during future public health emergencies.
2. Importance of End-of-Life Care during Public Health Crises and
   Emergencies
   Prioritise the importance of maintaining compassionate end-of-life care which is
   patient focused with family involvement in the event of future public health crises
   or emergencies.
   
   The sheer volume of death, alongside public health measures to reduce the spread of
   infection, resulted in extreme pressure on an overstretched and exhausted healthcare
   workforce and unpaid carers. As a result, the pandemic and the associated public
   health measures were very challenging for the delivery of quality end-of-life care and
   caused a major disruption in the normal functioning of hospitals and nursing homes.
   More targeted education is needed to equip all those working in healthcare settings
   (e.g. reception, porters, nurses, doctors, healthcare assistants, cleaners, maintenance,
   admin) to future proof quality end-of-life experiences to discuss the experience of
   death and dying with patients and families. All healthcare staff, across all care settings,
   should receive targeted education and continuous training to equip them to deliver
   quality end-of life and bereavement care.
   
   The pandemic also shed light on the resilience and increased collaboration and
   innovation by palliative and end of life care services, which were able to adopt new
   ways of working with great speed. It is vital that some of these innovative approaches,
   such as expanding out-of-hours services, the role of pharmacies, anticipatory
   prescribing and telehealth continue to be scaled up.
3. Develop a Public Health Approach to Bereavement
   A strategic and coordinated public health approach to plan for and develop policy
   for bereavement care is needed. Greater resourcing and investment into the
   expansion of bereavement support services to protect and support future
   populations of bereaved people in both primary and acute care settings.
   
   Bereavement happens to people at any age, in different circumstances and with a wide
   range of consequences – psychological, physical, social and economic. A public health
   approach identifies their needs and maps out the appropriate informal, community,
   organised and professional responses which are needed.
   
   Bereavement supports were not adequate to meet the needs of people during the
   pandemic but importantly they were not adequate before the onset of COVID-19.
   Learning from the pandemic demands that, in normal times as well as in crisis, we
   identify factors that promote healthy grieving, intervene with those at risk of
   complications and treat people who are experiencing prolonged or other disturbed
   grieving processes.
   
   Health services must be equipped with additional resources for patients and families,
   and healthcare staff should receive training in social-emotional skills to better support
   grieving families, and bereavement support groups—both online and in-person—
   should be expanded.
   
   The impact of COVID-19 on healthcare workers needs to be recognised. Investment is
   needed to enable healthcare workers have access to specialised bereavement support
   that acknowledges that they will have ongoing personal and professional grief, not just
   in times of public health emergencies.
   
4. Highlight and Promote the Importance of Advance Care Planning
   Investment is needed to raise awareness and actively promote the importance of
   people planning ahead for their wishes at end of life, which can alleviate many of
   the stresses that occur in public health emergencies.
   
   For this to be meaningful a register of Advance Healthcare Directives (AHD) is
   essential to ensure that citizens can be confident that their expressed wishes are
   accessible when needed and wherever the place.
   
   We all have a right to be involved in decision-making processes affecting our lives
   regardless of illness, age, ability, or life circumstance. COVID-19 created an urgency
   and heightened relevance for the importance of these conversations.
   
   Advance care planning can provide people with the opportunity to express their
   preferences around treatment and care towards the end of life, and these discussions
   can take place when care decisions are not imminent, or a crisis is occurring. Patient
   involvement in end-of-life decisions is frequently named as a core component of a
   “good death”. The increased recognition during the pandemic of the importance of
   early conversations relating to healthcare decisions at end of life must be utilised for
   positive impact.
   
   As part of our work in IHF we support, encourage and enable the people of Ireland to
   plan and talk more confidently about dying and death by ensuring they have access to
   good quality resources and information. Our Think Ahead Planning Pack contains
   accessible information and resources that the public can use to plan ahead.
   The Assisted Decision-Making (Capacity) Act 2015 (ADMA) is a law that establishes a
   legal framework for supported decision-making in Ireland. The ADMA enshrines
   people’s right to make a legal AHD.
   
   While advance care planning considers all end-of-life care needs an AHD is a legally
   binding document that allows a person to record their wishes about healthcare and
   medical treatment decisions in case they are unable to make these decisions at some
   time in the future. Importantly an AHD should be registered in a place that can be easily
   accessed by all those involved in making decisions about a person’s care.
   Part 8 of the Assisted Decision Making (Capacity) Act 2015 states that the Minster for
   Health may make regulations to provide for the notification of a making of an AHD to the
   Decision Support Service (DSS) and for the Director to maintain a register of same.
   Currently, people do not have to notify the DSS that an AHD has been made. This is a
   real shortcoming of the ADMA as there is no centralised repository for healthcare
   professionals to reference or determine if an AHD has been made, therefore a register
   of AHD is needed.
   
5. Future Research
   Further research on the long-term impacts of COVID-19 is warranted. This research
   should include large population-based samples, as well as studies that focus on
   specialised groups.
   
   Research monitoring the severity of grief and wider impacts of bereavement amongst
   different groups (e.g. healthcare professionals) would also be beneficial to inform
   public health responses and practices.
   
   For more information, contact:
   Avril Easton
   Advocacy & Policy Manager
   avril.easton@hospicefoundation.ie
   Irish Hospice Foundation
   Morrison Chambers (Floor 4)
   32 Nassau Street
   Dublin 2, D02 X627
   hospicefoundation.ie
   info@hospicefoundation.ie
   RCN: 20013554