Tragic impact of coronavirus restrictions on loved ones' final days revealed in new Healthwatch Suffolk report
Coronavirus restrictions meant a family's last words with their dying father had to be over the phone, a shocking new report has revealed.
Research from Healthwatch Suffolk released today has told of the final hours and months of people receiving end of life care in the county, from the perspective of family members or friends.
And the impact of the coronavirus pandemic has been revealed, with it affecting almost every experience shared with the organisation.
The chief executive of Bury St Edmunds-based St Nicholas Hospice Care said the hospice had played a key role in supporting people at the end of their lives — and their families – during the pandemic.
Barbara Gale said the Healthwatch Suffolk report highlighted the good work that is happening. She added: "There is so much more we can all do to make sure the experiences people have when facing dying, caring and grief are as good as they can be.
“This isn’t work that one organisation can do on its own. As a community, we have to come together to see what we can change so that the end of life experiences people have can be the best they can be."
One respondant in the Healthwatch Suffolk study said they had to make the impossible decision to end their father's treatment over the phone.
"My father spent 23 days alone in hospital due to lockdown. As named next of kin I was given information daily. It was hard to get get through to the hospital to get that information," they said.
"Because of a speech impediment, he was unable to communicate by phone. So, it meant I was asked to withdraw treatment without seeing him.
"I have to live with that. I finally got to say goodbye on the phone 30 minutes before he died, but I don't know if he understood."
Some families said they felt a lack of contact and social stimulation had accelerated a decline in their relative’s health and wellbeing.
And others found it hard to access the help they needed, experienced delays in receiving vital medical treatment, or faced challenges to their own wellbeing because of loneliness, isolation and feelings of guilt.
But not all experiences were negative, with some being highly complementary about the levels of care provided by health professionals, as well as the compassion they were shown during some of their most difficult moments.
As part of the report Healthwatch Suffolk has highlighted the need for better communication with patients and families, and called for more information to be given out regarding what people should expect when someone is dying.
Wendy Herber, the independent chairwoman of the organisation, said the stories shared in the report were 'one of the most emotionally challenging shared human experiences we all can face'.
"We believe there are a number of ways people’s experiences could be improved and this includes things like making sure people have access to the information and tools they need to prepare for a death, the continued development of new technologies to improve care planning, better integration of services, and making sure every contact with health and care professionals is compassionate," she said.
“We have been working closely with local NHS and care leaders to explore people’s experiences, and to develop our recommendations. We are therefore confident that this extensive research will be used to shape the future of support, and to drive improvements in local end of life care.”
The report also called for the wider local health and social care system to build on ongoing work to address inequalities experienced by black, Asian, and other ethnic minority groups, to better understand the end-of-life experiences of people from those communities.
At St Nicholas Hospice Care, in the first days of the pandemic staff, volunteers and members of the community began to knit and crochet hearts to help forge emotional links between loved ones. More than 4,000 have been made to date.
Meanwhile, the hospice has improved its telephone advice line and utilised online communication; worked closely with care homes and care agencies to help co-ordinate the care needed for those dying, with or without the virus and provided training and courses via Zoom.
Meanwhile, Hospice Neighbours and bereavement volunteer teams have supported people over the telephone and delivered groceries and prescriptions.
Mrs Gale said: “The past 16 months have been difficult for all of us in so many ways, but for those who have experienced the death of a loved one, it has been particularly hard. The pandemic has meant we haven’t been able to be together, comfort and support each other in the ways we are used to.
“I am reminded of the quote from Dame Cicely Saunders, founder of the modern hospice movement – ‘How people die remains in the memory of those who live on'."