Alisha and Rita – Experiences of intensive care with COVID-19
Alisha’s father Arjun died of Covid during the second wave of the pandemic. Rita is his wife. Whilst he initially seemed to do well on non-invasive ventilation, he declined over a period of three weeks.
Time of interview June 2021.
Arjun, husband to Rita and father to Alisha, was a healthy man in his fifties. He was fit and had no underlying health conditions. He had been careful not to contract Covid since the beginning of the pandemic. The family felt they had no particular reason to be worried about his health, particularly in light of the government information of who was at risk of contracting and of dying of Covid.
Alisha recounts that in December 2020, after Christmas with the family, her mother started to feel unwell. She tested positive for Covid. Alisha and her father had no symptoms at the time. They did get tested a few days later, and these results also came back positive.
Whilst Alisha and her mother were quick to recover, Alisha’s dad remained extremely exhausted. He had a high fever which would not go down. They tried all kinds of possible home remedies – mostly steam to clear his airways. Because Arjun was not coughing the family did not think there was particular cause for concern.
The NHS followed up with a couple of calls to see if the family was at home. Rita feels that this was done mostly out of wanting to see whether they were isolating, rather than from a caring point of view. She feels strongly that these calls would have been a good occasion to provide information, based on existing data at the time, regarding critical points in the trajectory of a Covid patient: What could they do at home? When to seek medical attention? When to call 111, or 999? As few of these calls provided such information, these questions were left for the family to grapple with on their own, until a family friend recommended buying oximeter. Rita and Alisha believes NHS should have given Oximeter to any family member testing positive on day one, should have educated the family to record the readings and given the family advice on when to raise concerns should the readings drop below certain levels. She feels that her father’s life could have been saved had this been done then.
Alisha and her mother started to measure Arjun’s oxygen levels. These fluctuated between 84 and 95. Alisha took pictures to be able to document these fluctuations. After 1 or 2 days (in early January), she and her mother decided to call 111 (4 Jan). Looking back, they wondered whether they should have done it sooner. When the paramedics arrived, Arjun’s oxygen levels were relatively high (94). They were not sure whether to take Arjun in: they felt there was 50% chance of him recovering in hospital, and 50% chance of him recovering at home. Alisha showed the paramedics the pictures of the fluctuating oxygen levels. Rita told them she had seen him decline. The paramedics said that at the time, the hospitals were not the best place to b; if he could stay home, he would be better off. When Arjun decided to stay at home, Alisha and Rita were not convinced this was the best thing to do, as both of them had seen him deteriorating and they were worried about him.
Admission to hospital
A few hours later, when Arjun’s oxygen levels dropped again, Rita called another ambulance. When the paramedics came, they agreed to admit him. He was initially admitted on a general ward for Covid patients. Alisha emphasises that this was at the peak of the second wave, and that he was lucky to get a bed within a couple of hour.
At this point the family was in touch via texts, as Arjun was able to type. But one hour later Rita and Alisha got a call from a doctor explaining that Arjun had had a scan which showed pneumonia in both his lungs. For Alisha and Rita this was hard to believe, as Arjun had not had had trouble breathing. The doctors were positive, and thought he was doing well and could go home in a couple of days. They prescribed Arjun steroids (Dexamethasone) and antibiotics to treat the infection. Arjun was also given oxygen via a mask, which helped him breathe.
But then things took a very different turn. Arjun’s breathing got worse, and his oxygen dependency increased. As he found it harder to speak on the phone, Rita and Alisha kept the calls to a minimum to preserve his energy. After a total of 10 days on the ward, Arjun’s reliance on oxygen via the mask had increased so much, that the doctors informed the family that they were going to have to admit him to ICU, just in case he was going to need more support. This really shocked Rita and Alisha; it was hard to understand how he had deteriorated. Eventually, he did need to be intubated. Alisha and her father had a videocall. This is the last time Alisha spoke with her father.
Communication with ICU staff
Doctors called them daily. The family feels the doctors were generally good in relaying information. But at times there were doctors who lacked communication skills and empathy, and things were not always explained clearly. After some calls, Rita and Alisha did not know what next steps were going to be, or what possible steps could be taken if Arjun’s condition would deteriorate. This caused them to be anxious and stressed and meant that some nights they did not sleep. They feared that his life support would be switched off. Alisha noted that doctors started to say he is dyin early on in the ICU stay, which made Rita and Alisha feel like they were going on statistics, rather than just on how Arjun was doing. Alisha and Rita were invested in staying hopeful for his survival.
Arjun was proned in ICU. This initially seemed to be helping, but then failed to show any benefit. Whilst Rita and Alisha took his being stable; to be as a good sign, the doctors made it clear that they felt differently: being stable meant neither decline nor improvement, so it could still go either way. The proning was initially planned for five days, then continued for another two, and then discontinued when it was proving more risky than beneficial. Alisha and Rita then realised that doing everythin, as they had been trying to do, could kill him, so they understood why the proning had to be discontinued.
By this time, Arjun’s his kidneys had failed, making him reliant on a dialysis machine. When clinical staff cleaned the machine, thus temporarily taking Arjun off it, he seemed to pass urine on his own, and so it was decided that he would not be put back on the machine. But then his kidneys failed again, and yet he was not put back on the machine. This made Rita and Alisha angry. But the doctors insisted again that he was dying, and that now it was time for them to come into hospital.
(Digital) End-of-life visits
Because Alisha was still testing positive, she could not go to hospital to see her father. Her mother Rita went to the hospital alone while Alisha waited in the car park. Rita video-called Alisha and other family members when she was there, and they all prayed for him, hoping that he would hear, and that their prayers would be heard.
In the days that followed Alisha and her mother were afraid every time the phone rang. They were anxious that a call would bring bad news. But Arjun kept on pulling through. Stories on the news spoke of survivors, and so Alisha and Rita had hope. They researched online and in academic journals for things Arjun was suffering from, possible causes and what things were being tried in other clinical settings around the world. Alisha recalls, We were becoming doctors ourselve, and recounts how they took that information back to the doctors in the hospital, hoping to make a difference.
Arjun developed a secondary infection. The doctors were communicating with colleagues elsewhere to gain an understanding of what they could possibly do. They increased Arjun’s steroids despite considerable risk to his health if he were to survive, a risk they deemed worth taking. But Arjun nevertheless deteriorated. The doctors told Alisha and Rita once again that he was not going to make it, and that Alisha should come in to say her goodbyes.
Alisha tested negative this time, went to the hospital and saw her father there. Her mother came with her. Alisha describes this visit as both luck, in the sense that she still got to see him, and scar as her father’s body had changed in such a way that he no longer looked like her father. He passed away on the day after she saw him, in the beginning of February. On that day, Rita and Alisha were not allowed to come in again. Instead, they were connected with the hospital via videoconferencing; they spoke to him and prayed.
Bereavement
There was no bereavement follow-up from the hospital; both mother and daughter received counselling via work, but this was not specific to bereavement, nor did they find it particularly helpful. They told us that the sadness and bitterness about it all remains. There is also so much to arrange – the funeral, things to do with the house, and companies requiring various bits of paperwork over and over again – that Rita and Alisha both felt that there had not yet been time to grieve. Arjun’s death still feels unreal and unfair to them, and the what-if questions; stay with them: What if they had received advice on when to be concerned and call for help? What if they had called an ambulance earlier? What if the first ambulance had taken Arjun to hospital?
When asked what could be improved, both feel that some doctors could speak with more empathy with family members, and that the NHS could do better in providing information on critical points in the illness trajectory, based on data that has now been collected – perhaps if people know how and when to act at home, more lives could be saved. Both feel that bereavement services need to be better.