It is very stressful having a relative on intensive care. When you cannot see them or speak face-to-face with those looking after them, it is even worse. I have written this to try and alleviate some of the pain you are suffering but in the full knowledge that I can only take the edge off it (at best).
Covid-19 is a virus that spreads from human to human. Just like the flu virus, it can attack the lungs and just like the flu virus it tends to be more damaging to older people, those who have weakened immune systems and people who are just unlucky.
Your relative has been unlucky. They are probably on intensive care because it is the only place that has the equipment and people who can now prevent the virus from proving fatal. Over 3 million people have died from Covid, more than 130,000 in this country alone.
The following treatments are used on intensive care (ICU). If they have not been used on your relative, then you can be sure that they’ve been considered and only rejected if not thought beneficial:
- Dexamethasone – a steroid which was shown to be beneficial during the first wave.
- Remdesivir – an antiviral drug which may be of benefit if given early to some patients.
- Tocilizumab and Sarilumab – powerful immunosuppressant drugs which switches off the body’s immune system. They may be of some use in some people when given at a very specific time. It can harm some patients.
- Ronapreve – this drug stops the coronavirus from entering cells and is useful for those without their own antibodies to the virus. It is several hundred times more expensive than the covid vaccines which induce most people to produce their own antibodies.
The following supports are used on ICU to allow patients to fight off the virus and the peculiar effects the virus has on how their immune system responds:
- Oxygen – the lining of the lungs get inflamed by Covid and oxygen cannot get across into the blood stream. The more oxygen the patient is given, the more chance it has of getting into the body.
- CPAP – (Continuous positive airway pressure) – usually delivered by a tight fitting mask (which is uncomfortable), oxygen is given at pressure in order to open up as much lung as possible. The more lung that is open the more chance the oxygen has of getting into the body.
- Proning – This is where we put patients on their front. In some patients, putting the lungs ‘upside down’ helps to get the blood to meet up with more oxygen.
- Invasive Ventilation – The ventilator is a machine which pumps oxygen into the lungs. It is of most use when patients cannot get enough breath into themselves. With Covid, getting enough breath in is seldom a problem – it’s the lack of oxygen that is the issue. Once on 100% oxygen using CPAP the main value of a ventilator is to give the patient a rest from breathing for themselves. The process of putting the patient on a ventilator (involving a general anaesthetic) can be fatal and, for complicated reasons, it usually results in the patient getting even less oxygen in the short term. Late on in the course of Covid (2 weeks and beyond), ventilators can cause severe damage the lungs. Hence, putting your relative on a ventilator, whilst superficially attractive, is not always of benefit and could cause harm.
Facts and Fictions
Your imagination will be running wild and you’ll find yourself flitting between pessimism and optimism, trust and suspicion, despair and hope. This is normal, unfortunately, and it can make YOU very ill if you don’t have support. The following information may be of some benefit:
- The doctors and nurses are so busy they will not have time to look after my relative properly. There are standards of care below which those caring for your relative will not drop unless a national emergency is called and there are simply too many patients to cope with. Under those circumstances, staff will have to do the best they can with whatever resources are available to them. We are not at that stage, yet.
- Covid is new, so the doctors do not know what they are doing. The consultants on intensive care have spent 5 years at medical school and at least 7 years as junior doctors specialising in intensive care – that’s 12 years, minimum. Some have more than 20 years intensive care experience above that and are members of at least one medical royal college. They would not claim to be infallible but, having battled through the first wave, have got some idea of what they are doing. Their first duty is to their patients (not the government, politicians, the hospital or even you).
- I have a right to be informed of what is going on. Patients have a right to confidentiality. There are only two reasons, with Covid, to break that rule: First – to ask relatives to help decide what the patient would want in the event that they cannot decide for themselves (‘best interests‘). Second – to keep relatives informed of progress on the assumption that the patient is happy for their confidential information to be shared with them. The first is a legal requirement but the second is more of a courtesy than a right. Staff tend to assume that patients are happy for relatives to be kept informed of their progress but this is not always the case. You may be given a password – to ensure that the person calling is who they say they are.
- My relative will be ‘switched off’ or denied treatment if someone else needs their ICU bed. This is not true. The only lawful reason to withdraw or withhold treatment is where it is not in the ‘best interests’ of the patient to start or continue with a particular treatment; the therapy is either useless or not wanted.
What relatives can do to help
- Start by looking after yourself. There’s not much you can usefully do at this stage that will make a positive difference to ICU outcome. However, if your relative does survive ICU then they will need a lot of support when they get home. They will need you to be on top form.
- Give the doctors and nurses time away from the telephone. If staff are on the phone it means they are not by the bedside of their patients. If there are ‘best interest’ decisions to be made – you will be involved. If there are significant changes in the condition of your relative you will be informed.
- Have a single point of contact. This is often the next-of-kin but may not be. Rather than having to explain the same thing to several family members it is helpful to be able to rely on just one to be the go-between. The current infection control limitations, whilst necessary, do nothing for good communication; it is as much a source of stress for staff as it is for you.
- Stay away from the hospital. The concentration of Covid patients in hospitals is greater than anywhere else in the country. Your physical health is at risk if you do visit. However, we are all human and have emotional needs, especially when we have relatives who are very unwell. If you are allowed to visit then make sure you are aware of the risks you are taking in doing so.
Further useful information:
General information about intensive care – https://icusteps.org/guide
Useful videos about intensive care – https://healthandcarevideos.uk/critical-care
Some of the treatments used on intensive care – http://www.explainmyprocedure.com/icu