End of life care survey reveals toll of pandemic restrictions on families and workforce
Families have felt “bereft of involvement” in saying goodbye to their loved ones due to pandemic restrictions, according to a new nursing survey.
Staff involved in end of life care said families had received terrible news over the phone, while a dying woman felt unable to choose which one of her children should be her sole visitor in her final days.
The poll of 893 nurses and caring staff for Nursing Standard and the Marie Curie charity found more than two thirds (70%) had found it harder to have compassionate conversations with patients’ families about end of life care during the pandemic.
More than a third (38%) said there was not enough capacity to provide high quality end of life care during a second wave, while a third said personal protective equipment (PPE) was the main barrier to providing good end of life care.
One nurse said of PPE: “A dying person’s last contact with another person is through a gloved hand, a smile that can’t be seen because of the mask.”
Nurses spoke of the emotional challenges for staff, patients and families, with one saying: “Not having the relatives with the patients during the time of death felt like a huge responsibility on nursing staff to get it absolutely right.”
Another said: “During Covid it felt like the nursing staff absorbed the emotions when our patients died.”
Nurses said visiting restrictions left families “bereft of involvement”, with one saying: “We had one palliative care resident at the end of life due to a brain tumour who refused to have her family visit because she would not choose which one of her four children it should be.”
One nurse said: “I put the phone down and cried my heart out. To give someone bad news over the phone, not knowing where they are and who they are with, not holding their hand or sitting down with them, [was] horrible.”
Nurses also spoke of their exhaustion.
“We are all tired mentally and physically,” one said. “We do what we do because we want to help but I can see that it is affecting my own health.”
Another said: “I have many colleagues experiencing PTSD (post-traumatic stress disorder) symptoms relating to patient deaths in the department.
“Many have had to take time off sick or are planning to leave the profession.”
In mid-April, Health Secretary Matt Hancock highlighted the death of Ismail Mohamed Abdulwahab, 13, from Brixton, south London, from Covid-19.
Ismail died alone in hospital and his close family were then unable to attend his funeral because they were self-isolating.
Mr Hancock said the reports had made him “weep” and published new guidance for social care providers saying care homes should still “limit unnecessary visits” but that visits at the end of life “should continue”.
Julie Pearce (pictured), Marie Curie chief nurse and executive director of caring services, said the mental health and wellbeing of staff was in jeopardy during the second wave, but added: “While compassionate conversations about dying, death and bereavement have been difficult for nurses and caring services during the pandemic, conversations about what matters most to people is central to the person’s experience at the end of life.
“For Marie Curie nurses we found that advance planning with patients and their families was possible by video conference and by telephone. It isn’t ideal but it is possible.”
Nursing Standard editor Flavia Munn said: “The death of a patient is never easy but PPE and visiting restrictions are leaving nurses distressed that they are unable to provide the kind of care they ordinarily would in a patient’s final days.
“Our survey findings further highlight why mental health support is so vital for nurses right now, whether that’s dedicated counselling lines, structured debriefing sessions or a post-shift chat with a colleague.
“Nurses’ wellbeing needs care too.”
Jude Diggins, deputy director of nursing at the Royal College of Nursing, said: “This survey highlights the truly heartbreaking circumstances that more and more nurses are finding themselves in throughout the pandemic.
“It is not surprising that caring for patients at the end of their life in these unprecedented working conditions is leaving some of them feeling exhausted or even traumatised.
“NHS, social care and other employers must ensure that staff have time to talk about their experiences, whether that’s through formal counselling or conversations with their colleagues.”
Copyright (c) PA Media Ltd. 2020, All Rights Reserved. Picture (c) Marie Curie.