An interview and analysis of bereavement.
I am a 32- year-old, black male from Bristol, UK. I work in Accountancy for the local council. Here, I share my experience of losing a loved one (my father – Trevor Rhoden) to COVID-19.
What happened, how did you feel and what communication did your family receive when he was hospitalised?
Right, where do I start? I was casually watching television when I received a phone call from my mother. She was very distressed, and I remember her repeatedly mumbling something before I could say “Hello mum, you alright?”
“Your Dad isn’t very well, Ash. He can’t move and he isn’t speaking and he can’t get out of bed!” she replied. Via video call, she then proceeded to show me my dad lying down on the bed, seemingly lifeless.
“Well, call 111 then” [111 is the NHS helpline contact number in the UK] I shouted, to which she replied they already had and were told to just watch him for the next few hours. I was bemused by this and got her to call 111 again and to put the phone on loudspeaker so that I could tell them how bad my dad was. Thankfully, the NHS decided to send out an ambulance to take my dad to the hospital. The sight of the paramedics dressed in full PPE left us all speechless. It was a stark reminder of the reality of COVID-19.
I felt helpless, useless and most of all, like I was in limbo, unable to comprehend what was happening. I don’t think words can capture the distress I was feeling.
The nurses and doctors were very blunt with me from the start, stating that my father was in a bad way and they needed to put him on a ventilator as his blood oxygen levels were life-threateningly low. They gave me regular updates via phone for the first 10 days. Thereafter, I had to call them for updates, as they said they would only update me from now onwards if his condition worsened or improved. Being deeply concerned, my family and I still called most days for reassurance.
Nothing could have prepared me for such an experience. It is profoundly distressing not to be by a loved one’s side when they are in such a critical state in hospital.
During the first lockdown in the UK, COVID-19 patients were not allowed to receive visitors. Due to the difficulties with ensuring the safety of visitors, many of the same restrictions remain. Revised guidance enables some visits, depending on the circumstances.
Can you tell us more about your dad’s circumstances?
My dad was in hospital for 23 days before he finally passed on 19 April 2020. The days leading up to this moment were an emotional roller-coaster. He did not die suddenly. The doctors explained that because my dad had underlying health conditions (none of which were immediately life-threatening) it would be difficult for him to live a normal life if he miraculously recovered from being on a ventilator for more than 20 days. My dad’s lack of fitness alongside the battering his lungs had taken from smoking meant a miracle was needed for him to survive.
To date, according to John Hopkins University, the UK has the third-highest COVID-19 mortality rate in the continent of Europe, at 2.8% [after Belgium (2.9%) and Italy (3.5%)].
Analysis in the Netherlands concludes more acute grief elicited dealing with loss during the ongoing COVID-19 health crisis. Researchers predict an increased prevalence of prolonged grief disorder and persistent complex bereavement disorder among the general bereaved population (Eisma, 2020).
What was your bereavement like?
Bereavement support from the NHS offered us a few leaflets detailing phone numbers to call and that was it. This may be the norm, but it was the first time I was exposed to such an ordeal and tragic loss. I felt that more support could have been offered.
The funeral was, again, such an emotionally detached process. In black culture, we normally have a wake, which is a celebration of the life of the deceased. This was not possible due to COVID-related restrictions, making the grieving process much harder.
In the first lockdown in the UK, ten people were allowed to attend a funeral. During the most recent lockdown, 6 January 2021, up to 30 people can attend a funeral. It is reported that since March 2020, among those bereaved by COVID-19, ‘85% were unable to say goodbye to their loved one as they would have liked’ (2021).
During the Ebola outbreak, “certain funeral rites contributed to the spread of the disease”. Overall, WHO-recommended practices for COVID-19 are less strict than those used to manage the Ebola epidemic. After the Ebola epidemic, WHO and other institutions updated their guidance to allow for “safe and dignified burials” (Healthwood, 2020).
How do you feel about those who have suffered like you?
I feel deeply empathetic towards everyone that has gone through the same situation as I have as well as for those currently going through it. Being on a ventilator does not guarantee your survival. Knowing this makes every day that you are waiting for an update from the doctors a very emotionally challenging time.
It was especially difficult for me because my father was admitted to hospital in the days leading up to my son’s 1st birthday. So the doctors assured me that if they had any bad news, they would not relay it on my son’s birthday, which was slightly comforting.
I understand that patients are isolated from their loved ones for their safety. However, this separation makes it even more surreal when you hear about their passing because such a loss is so unbelievable that it plays on the imagination, and there is a need to witness death to believe it has really happened.
Do you have recommendations?
I believe families need to be offered family visits and online updates, among other measures.
I think there should be more accessible and personalised bereavement information. Follow-up calls should be made to affected communities to check-in on them and provide support while ensuring they are aware of community and social support groups.
The National Bereavement Alliance recommend the following support:
- proactive outreach to those in need;
- central coordination of locally delivered support;
- training for providers in crisis-specific core competencies;
- structured psycho-education as well as group-based support and use of existing social networks;
- formal risk assessment for prolonged grief disorder; and
- referral pathways for specialist mental health support.
Do you have a message for families?
For those who currently have loved ones admitted to hospital, I would suggest they reach out to all loved ones to try and support each other through the ordeal. Be a good listener to other family members too.
Most importantly, try to remember that you are still alive and that you can still make a difference to this world.
8 February 2021
By Ashley Rhoden
A member of the Public Health Pathways team.
Analysis was provided by Public Health Pathways.