As a retired consultant after 30 years at Great Ormond Street Hospital NHS Trust, I am fit and well and looking forward to my 77th birthday in May. Due to the Coronavirus pandemic two friends and I have been forced to postpone completion of our 118-mile walk from the Wye to the Thames. If, however, I develop Coronavirus pneumonia, and looking at the consequences of surviving mechanical ventilation, I have decided that I would refuse any mechanical ventilation. I have a written advance decision which states this. I have also discussed this decision with my family.
A joint statement from the British Medical Association, CQC and Royal College of GPs advises the public to have a personalised care plan should they get Coronavirus infection. A care plan would include any advance decisions to refuse treatment and what treatments you would like to receive. The joint statement identifies vulnerable groups to include older people, those with frailty and anyone with an underlying serious condition. It mentions completion of Do Not Attempt Resuscitation (DNACPR) or the new ReSPECT forms. However, there is no information on the consequences of mechanical ventilation nor on the various options open to those who may become very ill, to help them make an informed decision about which treatments they may wish to refuse.
For example, for some who develop Coronavirus infection the possibility of suffering severe respiratory difficulty is high. Treatment for the severe complications requires hospital admission and intensive care with ventilation. The current evidence suggests that of those patients with Coronavirus infection who are admitted to hospital, 30% will require critical care and of those 80% will die. Due to anticipated high demand hospitals may be forced to limit admission especially to intensive care.
However, the consequences of long-term ventilation are hardly discussed. Many patients who required mechanical breathing support and who survive, suffer from physical and neuropsychological disabilities afterwards. For example, a recent report of 391 patients who survived after receiving 7 or more days of mechanical ventilation in Intensive Care Units (ICU), shows that over one-third of the older age group required hospital readmission in the year after discharge. Forty percent of this older group died within the first 12 months after discharge. All patients had severe and persistent functional dependency after discharge. Cognitive dysfunction, including problem solving and memory, also affected all age groups. It usually takes years of rehabilitation to get back to anywhere near baseline physical function. As one gets older, has pre-existing medical problems or frailty, it is increasingly difficult to return to the level of function that you had before.
It is therefore useful to consider what might go into a personalised care plan. What treatments one would like to receive. Importantly what are the options to refuse treatment:
o No mechanical breathing support. The person would still receive oxygen via a face mask or nasal specs (nasal canula). There is a serious possibility that the person may die.
o Non – invasive ventilation. This requires a tight-fitting mask over the face; the mask is connected to a machine which provides positive pressure (CPAP) to support breathing. The person will be awake during this and may still be able to eat and drink. Most people find non-invasive ventilation, of which CPAP is one type, moderately uncomfortable
o Full ventilation. The ventilator is connected to the individual either via a tube through the mouth passing into the windpipe (endotracheal tube). This process requires individuals to be deeply sedated, namely placed into an induced coma. In time, it may be considered appropriate to change this mouth type breathing tube to a tracheostomy.
At times of extreme stress on NHS facilities which exacerbate the ethical choices and decisions health professionals are having to face, people with care plans who state what treatments they select to refuse, will relieve the huge burden facing both health teams. However, the public needs information so that they can be helped to make their own difficult decisions, and families need to have conversations with their loved ones about these.
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