Time in hospital



I’ve been told that losing someone after a prolonged disorder of consciousness increases  grief tenfold, and I would agree.  Not only have you lost them at the time of the event, which can be traumatic and violent, but you are bereaved throughout their time in a disorder of consciousness and you are unable to fully grieve but coping with loss and then after their death the grief and loss continues.  When a traumatic event like Paul’s crash happens, there are no condolences at the time.  Family are left to pick up the pieces, largely alone, as most people can’t identify with having next of kin in a coma and disorders of consciousness for a long time. This can often be for many years and it’s an unresolved and complicated grief for family. I still think every day and often can’t sleep because of the trauma of it all. This is the most difficult part to write, because there is a general lack of understanding of coma and disorders of consciousness caused by severe brain injury.

Nobody has ever apologised to Paul or explained how and why he was left in an awful state for so long. After finally pleading guilty late on, the dangerous driver received a 12 month custodial sentence on 8th July 2016 and a three and half year driving ban with an extended re-test. Paul dealt with dangerous & reckless drivers every day. He felt they never received sufficient punishment and it was a crime never taken seriously enough. Paul was a perfect driver. He was an Advanced Police driver & motorcyclist and never would have taken any chances; his family were far too precious to him.  From the start I didn’t need to question the crash but concentrated on the medical aspects.

Paul was brought back several times and some consultants hadn’t had training in the Mental Capacity Act (as admitted in The Court of Protection). Cause of death as confirmed by the Inquest and death certificate was traumatic brain injury caused by, and the conclusion of, the Road Traffic Collision. This is not a right to die case, as the Judge said. Despite media headlines. Paul was killed by the road traffic collision.

In July 2015 we thought that Paul was brain dead, he was unconscious at the scene and hadn’t subsequently awoken and we had to wait 5 excruciating days before they carried out a scan.  At that stage we were told by the consultants how serious this was and how we needed to think about what Paul would want.   It was an awful meeting because we would do anything not to ever lose him but were made and asked to think, not of ourselves, but of the reality.

Five days later, the scan showed extensive brain damage and the brain stem was damaged. He also had extremely severe diffuse axonal injury with damage to the basal ganglia and thalamus. Obviously we walked into that meeting thinking that they were going to “switch off the ventilator” which although absolutely terrified we had prepared ourselves for and extended family and friends had already said long and sad goodbyes to Paul at this point and we knew it was for the best as he had already gone through so much surgery, had so many injuries and it was bad enough as it was that someone like him was even on life support for any length of time. We’d also thought about organ donation as it was something Paul believed in and knew (or thought at least) we would need to give consent.

One of the neurosurgeons said, however, Paul had started breathing on his own and it became evident that they couldn’t/weren’t going to take him off life support but said he would need to have 24 hour care for the rest of his life in a care facility. We were not really wanting to believe or accept it. When they were told that this would be a nightmare for Paul, the consultants seemed to respect and understand that. Another consultant said “he wasn’t out of the woods yet anyway”, that it wasn’t “normal” to have all of this medical equipment. Most people so severely injured don’t get this far.

What followed was transfers to and from 3 different Trusts and several different ITUs/Wards, with me sometimes being asked, in the absence of medical records, what’s the story so far. Paul being made to suffer bouts of pneumonia, sepsis, staph aureus bacteraemia, seizures and infections, fighting to be at peace, but brought back each time and in addition to that until the day he was finally at peace, his leg, which was nearly amputated, had never fully healed, it was often reddened, weeping and causing infection.  The brain damage also affected his heart. We tend to forget sometimes the numerous other severe injuries he received; broken collar bone, broken arm, broken and vascularly damaged leg, smashed pelvis, damaged lungs, liver and spinal vertebrae and the countless operations, procedures and the blood transfusions, at least two, the first being at least of 10 units, he was given.

They placed a Do Not Resuscitate order on him as early as August 2015 because of his condition and the brain damage which,  as horrible as it was talking and thinking about, we agreed with as Paul wouldn’t have wanted CPR.  Paul suffered infection, was given antibiotics, oxygen, PEG changes and other procedures often without family being informed of him becoming unstable and without consultation or question as to whether he would want any of these. A lot depended on whose care he was under at any given time. Some doctors would initiate discussion as to what Paul would or wouldn’t want, but it seemed every time meetings were held he would then be discharged to another hospital or ward under the care of someone new. Some doctors didn’t want to raise any questions as to enquire about Paul as a person.

Four neurologists dealt with Paul over 18 months.  After twelve months two said he was in a minimally conscious state (his last consultant plus a second opinion that the Trust had sought, who was also the Court’s/Official Solicitor’s consultant) another independent neuro-rehabilitation expert said he was in a permanent vegetative state. None of the experts  were requested by us. Paul was non-responsive to us and it made no difference to what Paul would want and his beliefs. He would have wanted to be at peace and have nature take its course irrespective of diagnosis.   The only difference to me seems to be it’s presumed a person in PVS can’t feel pain but one in MCS may. The category MCS didn’t used to exist and giving treatment to someone in PVS is regarded futile. Both reports didn’t provide much difference in prognosis anyhow.

Both the Trust and family submitted separate Court applications at the same time. Family, friends and colleagues gave their own statements and attended the Court of Protection. Everyone independently and unanimously knew what Paul would and would not want. It was an outrage to us (as it would be to him) that he was left in this awful state for so long.  The hospital, I’m at a loss to understand they knew and were told Paul’s beliefs but wouldn’t agree to let him be at peace. The Judge, having weighed up the medical diagnosis, assessments, prognosis, best case scenario and Paul as a person (he also saw video footage and photographs) ordered the treatments he would never have consented to, to be removed. This is never a decision taken lightly and the Judge had taken almost a month after the hearing to decide what was the right decision for Paul. The Judge was fair and sympathetic throughout.  Best interests had not been carried in the hospital; they only referred to in Court something they called ‘Medical Best Interests’ which doesn’t exist and which the Judge commented on, so he had to decide objectively Paul’s Best Interests. During the week long hearing the Judge also asked for an up to date medical report and anonymised case studies of the outcomes of other people who had the same injuries as Paul provided by the consultants. I should add that by this point, Paul could have continued for another 8 1/2 years which all of the neurologists agreed on, not taking into account other injuries like his leg. None of us family felt he would have lasted that long; he was already skeletal, gaunt and constantly having infections. From the start his injuries were effectively terminal, decreasing his life expectancy by at least 30 years or so.

Paul’s last days were very peaceful and dignified but he still would have wanted to be at peace much sooner and why he had to suffer so long before receiving palliative care we will never understand. His time at the hospice was the most peaceful he had ever been in the previous 18 months. The staff were so kind, especially to our little girl. Paul died after 9 days that treatment and artificial tube feeding was withdrawn and it was a peaceful death, despite the perception others may have and try to make out to other people, in order to scare, saying it is barbaric and that people have to suffer couldn’t be further from the truth.  We would however, say that the time in hospital before Paul was moved to the Hospice with frequently being unstable, were those awful things. All the same this should not be the only way in which someone should die, but when someone is left so long and despite their beliefs and wishes being heard and ignored, it is currently the only way and a last resort.

I now know several other families who have had relatives in a permanent vegetative state or minimally conscious state who have also died after Court of Protection hearings and others who have recovered consciousness after a few years but still can’t do anything for themselves, and recovered consciousness in this context means they still have no real awareness or realisation of who they are, who anyone else is, don’t have mental capacity, unable to talk, bedbound (or placed in a chair) doubly incontinent and nil by mouth; the same best case scenario that Paul was given, if he ever regained consciousness (and no one could say if that would ever happen) over the following 8 1/2 years (until 2025) of his life expectancy if kept alive.  The reality of it, all of the families who have contacted me and those I have spoken to wish that their relative had died at the scene or shorty after.

PVS/MCS patients thrash around the bed, can have spasms (tonic clonic seizures are kept under control on medication) grind teeth and make sounds such as growling and roaring (not intentionally). A person in either of these states has already “woken up”, eyes open sometimes and they may track.

The first time Paul had a safeguarding/deprivation of liberty assessment, instigated by the hospital, he was officially declared deprived of his liberty by the local authority in early 2016 and at each assessment subsequently. Myself and family visited him regularly but some family couldn’t see him anymore, it was too difficult and upsetting for them to see Paul how he had become.

A disorder of consciousness is not peaceful or dignified at all; because people are nil by mouth for so long, even water, they receive oral care but their breath begins to smell bad, I know cases where people’s teeth began to rot and had to be extracted. As said before, people are of course doubly incontinent and there can be leaks.  They have to be moved several times a day to prevent pressure sores and this would need 4 or 5 people and/or specialist hoisting equipment.  Whenever Paul got a chest infection, a probe had to go down his throat to suction and clear out his lungs, which causes a reflex gag, as he couldn’t cough anything up. Oxygen would be often be given when infections occurred.   Arms and legs are strapped into splints to keep the limbs as straight as possible. For Paul at one of the hospitals, this caused blistering and bleeding to one of his feet. A tube delivering artificial nutrition & hydration and medications went into his stomach; this often would come out and he would have a procedure each time to have a new one put back in. In fact the first time he had the tube that went into his nose taken out and a PEG tube placed into his stomach instead I was told it was a difficult procedure in his case and took longer than expected. Passive physiotherapy was also given to stop limbs contracting, podiatrists would cut his toenails. It’s hard writing about Paul’s condition and no words can really convey the horror and misery.

We were told in Court that had the collision happened in 2013 or earlier, Paul would have died at the scene, or very shortly after.  We know he really died on 3rd July 2015 and that’s the date we lost him.

Paul didn’t deserve this happen to him; to have all of this done to him while he was bedbound and so helpless, being put through operations and complications with at best no real prospect of any kind of recovery, nobody does but some people are too good for this world.  I don’t think he or we on his behalf will ever receive apologies or satisfactory explanations any time soon, or in fact ever. What also hurts is that Paul was denied the opportunity to be an organ donor, which he believed in.

Coma and disorders of consciousness is such an isolating, lonely time for family members and an awful way to visit somebody and see them in,  as I found when I contacted Professors Kitzinger & Kitzinger from the Coma & Disorders of Consciousness Research Centre and Jakki Cowley, Advocate from Empowerment Matters.  Both organisations having vast experience in this field and supporting families. It was  around Christmas 2015 when I sought help, because families are left on their own as our young daughter and I were, we were going home to an empty, dark, house every day; bereaved but unable to grieve properly and feeling isolated while the world around you is still going on and no one seems to understand your pain.

It’s widely known by those in the field of chronic and prolonged disorders of consciousness, the reality and the prognosis of these conditions are poorly understood by the general public and the media with incorrect information, terminology and portrayal. I contacted the Coma & Disorders of Consciousness Research Centre in desperation because so many conflicting things were happening to Paul. I didn’t know who to turn to or ask advice from. Celia telephoned me and they have helped us ever since.

Going to the Court of Protection is not a nice experience. It is stressful, exhausting physically with in my case early morning train journeys and wrap around child care for Ella, as well as mentally draining and it is a last resort. The official solicitor and the Trust’s barristers make it horrible and so cold. The press who were there, you’re just at the mercy of them and what they decide to write. Some were pleasant enough and some not supportive, ignoring the Judge’s compassion.

I didn’t care then what I had to go through as our daughter and I couldn’t be hurt any more than we already had been. We had been grieving for over a year and were just existing.  There was no other way out for people in a disorder of consciousness than have their case heard in the Court.

This blog is just a summary. It would take a long time to write in detail about our experiences over one and a half years.