What’s New in Psychology?
Loneliness and Isolation Following the Death of a Loved One
Jim Windell
If the study by Toni Miles and her colleagues at the University of Georgia, doesn’t sound the alarm about the impact of grief, another research project should.
Researchers at the University of Bristol and Cardiff University's Marie Curie Palliative Care Research Centre found that participants had many challenges relating to bereavement during the pandemic.
Participants in the research reported high levels of challenges around bereavement in the during a year of the pandemic with the three most common being 1.) Restricted funeral arrangements (93 per cent); 2.) Limited contact with other close relatives or friends (81 per cent); and 3.) Experiencing social isolation and loneliness (67 per cent).
When deaths were unexpected rather than expected, such as many COVID-19 deaths, the bereaved person was less likely to be involved in care decisions. Almost half (48 per cent) of participants reported that a healthcare or other care professional had not provided information about bereavement support services, even though this would have been relevant to them.
The objectives of the study was to identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement. The researchers designed an online open national survey of adults bereaved in the UK from March, 2020 to January, 2021. More than 700 people participated with ages ranging from 18 to 90. Of the deaths reported by the participants, 311 (43.8%) deaths were from confirmed/suspected COVID-19, while 410 (57.8%) deaths occurred in a hospital.
The results indicated that deaths in a hospital or during care at home increased the chances that the bereaved were unable to visit prior to death, were unable to say goodbye as wanted, and they only had limited contact in the last days of the life of the individual who died. On the other hand, when the deaths occurred in hospice or at home, it was found that this increased the likelihood that the bereaved was more involved in care decisions and that they were often well supported by healthcare professionals after the death. In addition, hospice deaths increased the likelihood of being given bereavement support information, which was least likely for care home deaths. And when the death took place in a hospital, the bereaved was unlikely to f know the contact details for the responsible care professional. In short, the results suggested that two-thirds of the bereaved people reported experiencing social isolation and loneliness.
The researchers collected stories that participants shared during the survey. For instance, a bereaved daughter commented in the survey: “When she (mum) took her last breath I called the nurse, they asked me to step out and they confirmed the death. I stepped into the ward area and just waited; it was so busy. They could have taken me somewhere. Then a few minutes later the nurse came out and gave me her things and said she couldn't remove her wedding ring. I was told to self-isolate for 14 days and the bereavement team would call. And I left. It was a cold, lonely experience; no compassion, no empathy – so different from my dad's death five years previous in a nursing home. The bereavement team called the following day and it was very business-like; there was no compassion.”
A bereaved wife added: “We were isolated for all of the two months he was ill and saw no one. His only sister was not able to visit him or attend the funeral as she lives over 400 miles away. I received messages, cards etc. from over 100 people but only five people were able to attend the funeral. The limited contact and loneliness has continued as I now live on my own and most family and friends are many miles away.”
According to one of the researchers, Dr. Lucy Selman, from thePalliative and End of Life Care Research Group and the Centre for Academic Primary Care at the University of Bristol: “Our research shows the huge challenges associated with being bereaved during the pandemic, highlighting how difficult experiences at the end of life have been compounded by high levels of social isolation and loneliness and a lack of support afterwards. With the average number of deaths in the UK projected to increase over the next twenty years, it is essential that bereavement services are adequately resourced and measures are put in place to ensure everyone who has experienced a bereavement is signposted to support options and information on grief and bereavement services."
Although this study was conducted in the UK, it is likely that people in the U.S. also share some of these feelings after the death of a beloved family member or friend. Essentially, it is during the grief period following a death that people need emotional support. And if they don’t receive that support from hospital staff or care-givers, hopefully they receive it from friends or psychotherapists.
To read this paper, which has not been published yet, go to the medRxiv website and search for the article entitled “Place, cause and expectedness of death and relationship to the deceased are associated with poorer experiences of end-of-life care and challenges in early bereavement: Risk factors from an online survey of people bereaved during the COVID-19 pandemic” by L.E. Selman et al., 2021.