Scenario 11: A well-oxygenated death
Scenario 12: A poorly-oxygenated death

These scenarios relate to the following article: COVID-19 AND THE ROLE OF OXYGEN IN PALLIATIVE CARE AT HOME

Scenario 11 - a well-oxygenated death

Dr Lyn Jenkins

You are 85, living at home with a daughter who has come to stay for the duration of the epidemic. You are fit for your age, apart from slightly raised blood pressure and mild obesity. You used to be a district nurse and your daughter is a recently retired headmistress. She has left her husband to fend for himself.

Early on in the epidemic, your GP, with whom you get on very well, phoned about how you would wish to be cared for if you became severely affected by Covid-19. You talked through the options and he gave you his best guess on your likelihood of surviving ventilation should you be admitted to hospital. You also discussed in detail what would be available if you chose to stay at home and how you could access it when required. He told you that the local GP practices had set up a 24-hour rota
for providing care for those who had made a considered decision to stay at home. One of them would come and visit to assess what was needed during the first phase of the illness in preparation for possible progression to the severe stage. Drugs and oxygen would be left at your house and any carers would be trained on using the oxygen and giving medication. You discussed all this with your daughter and between you decided that you would rather spend your last days with her at home,
even though there was a small increased chance of survival if you went to hospital.

When the second wave of the epidemic took hold, somehow the virus got into the house and you and your daughter both went down with it. She was fairly mildly affected and managed to keep going and look after you both. She contacted your GP and he arranged a test to be done at home. When it came back positive the next day, he visited with the oxygen and drugs as promised and trained your daughter how to administer the oxygen and give the injections of the drugs. He also left instructions about dosage and what to expect. He said to phone the Covid emergency team number if you became distressed in any way before starting the oxygen or drugs. After rallying on day 7, you took a turn for the worse, becoming increasingly breathless, and on the evening of day 9, phoned the emergency number.

A doctor called within the hour and, fully protected, examined you and checked your blood oxygen level. He set up the oxygen, delivered through a mask, and after 10 minutes rechecked your blood oxygen. It had responded well and you felt less breathless. He said to continue with the oxygen at that level and if the breathlessness increased, it could be turned up gradually to a maximum. He also gave you two injections and said that after an hour you could try reducing the oxygen to see how
you felt, and even stop it altogether if the drugs were sufficient to keep you comfortable.
You felt comfortable and cared for. You stayed on the oxygen all night and got some sleep. In the morning a nurse came and checked you over. She stopped the oxygen and found that it was not making much difference to your blood oxygen, but the drugs were making you quite relaxed and the breathlessness was no longer a problem. Over the next two days, you managed to talk to your son and grandchildren several times and your daughter was with you throughout. You overheard that
your daughter was adjusting the drugs after discussing with a doctor from the team as you drifted in and out of consciousness. You felt loved and supported and thought what a wonderful life you had had and how much you had loved and been loved. Peacefully, you passed away.

Scenario 12 - A poorly-oxygenated death

Dr Lyn Jenkins

You are 85, living at home with a daughter who has come to stay for the duration of the epidemic. You are fit for your age, apart from slightly raised blood pressure and mild obesity. You used to be a district nurse and your daughter is a recently retired headmistress. She has left her husband to fend for himself.

Early on in the epidemic you contacted your GP to discuss the possibility of being cared for at home rather than in hospital, as you had read about the poor outcomes of being ventilated at your age – plus the possibility of dying on your own in hospital filled you with dread. Initially, the receptionist responded with incredulity that you would even consider not going into hospital, but after a lot of persistence, a GP got back to you. She was new to the practice and as you didn’t know her and she seemed unsure of her facts, the conversation didn’t go well. She told you that there was no provision at the moment for a rapid response to a request for palliative care at home if you had severe Covid symptoms, especially if it was out of hours. You asked whether oxygen at home would be beneficial and she said she wasn’t sure but she would try to find out and get back to you. She said she would make an entry in your notes that you had expressed a preference for not going into hospital with Covid-19, and she would send you a form to fill out to that effect. Afterwards you felt uncertain about what you wanted. After all, it felt as if staying at home would not be a safe or comfortable option if nothing was in place to support you. When you received the form, you didn’t fill it in and you never heard back about the oxygen.

You discussed all this with your daughter, who then made inquiries and did some on-line research. After wading through a lot of complicated information on various websites, she came away with the impression that oxygen for breathlessness was helpful if blood oxygen levels were low. She also learnt from her newspaper that many people in hospital were now being treated on sleep apnoea machines rather than being ventilated with a tube. She wondered
whether this could be done at home. Deciding to be proactive, she ordered a pulse oximeter and a CPAP machine, and managed to source a reconditioned oxygen concentrator online.

During the second wave of infection, you both developed symptoms of the virus. Fortunately, your daughter only had a mild dose and was able to look after both of you. After a week you rallied, then suddenly got much more breathless. At 9pm your daughter phoned the surgery and was redirected to 111. She told the person on the phone that you would prefer to stay at home. They said they would send an ambulance anyway to check on you. In about half an hour two paramedics arrived in full PPE. They seemed exhausted but were very friendly and explained that if you went into hospital you would be looked after on the Covid ward with oxygen, then transferred to ICU for ventilation with a non-invasive machine initially, then an intubation machine if you became worse. Also you would be given drugs to help with any symptoms. They said that although they had the correct drugs with them, they weren’t authorised to give them for Covid. Anyway you hadn’t been tested so they couldn’t be sure of the diagnosis.

You felt so panicky that you couldn’t decide what to do. Your daughter showed them the CPAP machine and oxygen concentrator and said she would like to try this first before deciding. They helped her to fix the oxygen to the machine and the special Covid mask and put it onto your face. It was very tight and you found the pressure of the machine uncomfortable in your chest, but your breathing eased and the paramedics said your oxygen level was improved, although still low. They said they had to go to the next case but to ring 111 again if there was a problem, or ring the GP in the morning. Your daughter thanked them profusely, but you were unable to speak through the mask.

You didn’t get any sleep as the mask was uncomfortable and the machine noisy. Your daughter spent all night adjusting the machine and taking the mask on and off to give you sips of water as your mouth was getting very dry. You had a brief time to talk when the mask was off but you soon became panicky as the breathlessness took over.

By the morning, you were both exhausted. Your daughter had almost rung 111 again in the night but couldn’t bear to increase the burden on the paramedics. She rang the surgery first thing and asked for a visit. The receptionist again recommended ringing 111, but your daughter was insistent and eventually the GP you had spoken to arrived wearing PPE. After examining you carefully and confirming that you did not want to be admitted to hospital, she said she would arrange for a nurse to come to make you comfortable. She did not have any suitable drugs with her and gave your daughter a prescription. She also recommended increasing the pressure on the CPAP machine.

Once she had gone, you felt very uncomfortable. Your chest was hurting and you felt as if you were fighting the machine. Your daughter turned down the pressure, but then your oxygen level dropped and you felt more breathless, so she turned it up again. Your panic was returning and your daughter began to cry quietly. At last the nurse arrived. She was professional and reassuring. She said she would take the prescription to the chemist and come back with the drugs and a syringe-driver.

While she was gone, your anxiety and distress worsened and you felt you were going to be sick. You tore off the mask and vomited all over your chest. Your daughter shrieked and tried to sit you up, but you were gasping for breath and fought back. She lost her footing and fell, pulling you onto the floor. You lay on the floor together, smeared in vomit, hugging each other in despair.

When the nurse returned, she found you dead on the floor. Your daughter was cradling your head in her arms and sobbing. The machine chuntered on in the background. The nurse slowly shook her head, mumbled something about ‘another bloody disaster’ and started to tidy up the mess.