1st May 2015

It’s now a couple of months since Brian passed away. Sometimes it feels like just a couple of days. As a close friend for nearly forty years who shared many good times with him and was looking forward to perhaps twenty more years of the same, I find it very hard to accept he is no longer around.

Brian travelled extensively in his career as a teacher and examiner of spoken English, visiting dozens of countries in Europe, Asia and South America. He met lots of people, many of whom liked to keep in touch or visit him when passing through London. Unfortunately, it was not possible to let these further-flung friends and colleagues know what in the first two months of 2015 so swiftly overtook Brian, and some of them may still be wondering why they have not heard from him in a while. If you are one of those, and your enquiry has brought you here, you will by now understand the reason.

It was in January that Brian fell ill on his way back to London from Manchester, where he had been giving a presentation for TCL. Arriving at Euston in considerable pain, he was taken to UCL Hospital and diagnosed with acute pancreatitis. During the first two weeks of his stay there he seemed to improve, and at one point was told he might soon go home. But complications arose, as they do in about 5% of such cases, and on the morning of 12th February, Brian was admitted for a second time to Critical Care. That evening after a series of consultations he was prepped for another operation. It was not successful, the complications worsened and over the next two weeks he remained in an induced coma as the medics, walking a perilous tightrope with him, made many attempts to address the root causes of the disease whilst guarding against multiple organ failure. On the evening of Friday 27th they tried one last time to save him, but the complications proved insurmountable and Brian died in the early hours of the next morning.

Brian’s funeral was held in the afternoon of 16th March at Golders Green Crematorium. It was attended by about 80 mourners, made up not just of family and friends but also many present and former colleagues from Trinity College London. It was conducted by the Rev Jane Morris. Tributes, which were read by Brian’s friend and former colleague Carole Moss, were offered by Brian’s brother Denis on behalf of family, and by myself on behalf of friends and colleagues. A collection was taken for Brian’s favourite charity Cancer Research UK, and also for CORE, a small charity that funds research into gut diseases including pancreatitis. Afterwards about forty people went on to an informal gathering at the Windmill Hotel in Cricklewood.

I was the last person to spend time with Brian while he was still fully conscious. If I had known on the night I left him with the doctors about to anaesthetise him for a procedure that we would never speak again, I’d certainly have said more than just: “See you tomorrow.” For a month I had constantly thrust out of my mind the slightest consideration that Brian might not survive his illness. My body must have picked up on the reality of that situation, however, for as soon as I left the ward, I suddenly 'felt' the dread that he wouldn't.

Brian was only 66 and had a lot to live for. He had already conquered cancer twice to get to where he was in his life and he enjoyed reasonably good health overall. After a remarkably dynamic and creative career, which touched the lives of so many people, he was finally starting to look forward to a relaxing and well-deserved retirement. Tragically, it was not to be.

Brian was for 36 years my dearest friend. From the moment our paths crossed we realised we had so much in common. For me it was like having another brother, but closer. We shared much of what was going on in our lives and were there for each other during ups and downs alike. I always valued his input into important decisions and could confide in him about any difficulty. He was a person of great honesty, integrity and kindness, a true gentleman and a lovely man.

Bob Jenkins
West Yorkshire
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Brian's remains were interred with those of his parents in the Cooper family plot in July 2015. The address is Grave No 25912, Sutton Road Cemetery, Southend-on-Sea, Essex, SS2 5PX.





ONE YEAR ON...

28th February 2016

It's now a year since my best friend Brian died after a six-week struggle with complex acute pancreatitis.

There is nothing like the death of someone close, and especially someone of the same age and gender, for bringing one's own mortality into sharp relief. I have gotten through the worst of the pain now, I think, and am no longer so emotionally cut up by memories of Brian's last weeks. I still think of him every day, and what he might have to say about this or that situation or event. It was usually something droll or wise, and often both. Naturally, I think too about what he could still have enjoyed if he had not left us so soon and so suddenly. At times I feel again some of the frustration I used to feel as I listened to him talk about issues in his personal life, over which --though he would deny it-- he had so little control. What still makes me angry is that he fell ill just as he was beginning to re-create the space for himself to resolve those issues. Indeed it was most likely the stress of dealing with them that had all along been aggravating the underlying gall bladder disease that eventually killed him.

I learned so many things about living my own life from sharing parts of Brian's, and in this piece I want to commemorate this anniversary by drawing a lesson also from his death.

What stands out most about Brian's death for me is that, sadly, the manner and circumstances of it were far from dignified. None of us can know how we will eventually depart this world but if I could avoid dying while hitched to so-called 'life-saving' equipment, I definitely would. And if that meant never being attached to such equipment in the first place --even if it were deemed strictly necessary to 'save' me-- then so be it.

Now, I don't doubt for a second the positive intentions of the staff in Critical Care at UCLH who, doing their best for Brian, fought and eventually lost a three-way battle with sepsis and multiple organ failure. But I do seriously doubt the wisdom of 'modern' medicine and its all-or-nothing approach to pushing life's envelope beyond what most people would deem natural.

The weaponry deployed on Brian's behalf was massively iatrogenic: heart rate, blood volume and pressure monitors, dialysis, transfusion, anaesthetic and other drips, catheter and bowel drains, and of course breathing tubes. Paradoxically,what makes all that even worse is the need for sedation. Moreover, once the bridge into unconsciousness is crossed in such conditions, the doctors have complete control over the process, and patients and carers must relinquish, possibly forever, any influence they might otherwise have exercised. Worse, the medics are obliged by the levels of mechanisation intrinsic to critical care to derogate much of the power entrusted in them by their patients to machines.

Of course, critical care protocols do not preclude due clinical judgement, but most of its procedures do preclude hands-on caring by humans. So however committed they may be to looking after their patients, staff can only do so at whatever remove is dictated by the technology. Personally, I found it absolutely terrifying to watch powerlessly as Brian lay immobile and insensible, kept alive not by a calming voice or gentle touch, but by the bleeping and whirring of the gadgets he was wired up to.

During one of many conversations I had with Brian's doctors during those awful weeks last year, one remarked: "He's pretty stoic, isn't he, your mate?" It was only later that I wondered what he had meant by this. Originally, 'stoic' referred to followers of the Greek philosophy of that name, who strove to be aware of what they could or could not change in life so as to attain acceptance of what is true. But 'stoic' these days tends to mean 'uncomplaining' or 'resigned', which mean something rather different, I believe. I wasn't there when Brian gave his informed consent to the procedures he was subjected to. I presume it was explained to him that once he was sedated, he might not be resuscitated for a very long time. I must also presume that it was made clear to Brian that in the worst case scenario, he would simply be allowed to die. I've often wondered if he fully accepted  this, or merely resigned himself to it. Or if he even heard it. Also --crucially-- what alternatives his doctors offered, if any.

Some weeks after Brian's funeral I came across a book by surgeon Atul Gawande called" Being Mortal", in which he critiques the tendency of doctors treating the critically ill to go too far too fast with supposedly life-saving medical technology without fully considering what patients might want to live for and for how long. Gawande suggests that conversations about informed consent for surgical procedures should not be limited as they often are to discussion of how to save life at any cost. He acknowledges that many a surgeon, even knowing that an intervention could severely compromise the patient's post-operative quality of life, is reluctant to level with relatives, especially when they are clinging desperately to the hope that their loved one might yet survive. He feels that other considerations should be introduced as early as possible into such conversations, including the role of patients' values, what their life over and above mere existence means to them, what they might still want to do with it, whether they could still do that or not, how they might come to terms with any impairment. Also included, says Gawande, should be a fuller discussion of the merits of declining  a procedure in favour, for instance, of the amelioration through palliative care of what life the patient has left.

I earnestly hope that this option did form part of the conversation between Brian and his doctors. But whether or not it did, it seems to have been missed in what became a no-turning-back moment on 12th February last year. It seems likely that, under huge pressures of time and limited bed availability, with insufficient evidence of his true condition, knowing that inaction might have cost Brian his life and the medics a degree of censure at the very least, and with little resistance from a biddably 'stoic' patient, the doctors pressed for and were given consent to proceed. It probably couldn't have gone any other way in the sort of trance that tends to be induced in decision makers by a modern critical care unit with its seemingly limitless technological possibilities and the constant urge these in turn create to push the envelope, not just of medicine but of human life itself.

I have to admit that, for me, the worst aspect of Brian's death was that under the intrinsically iatrogenic conditions of critical care, the procedure intended to save him turned out to be just the first in a series of increasingly harmful interventions, for all of which Brian was perforce cast into oblivion. Doctors said that the level of sedation assured that he suffered no pain. Tragically, it also assured that Brian would know nothing, experience nothing, and eventually be nothing.

Granted, the doctors could not have foreseen every possible setback entailed in their treatment plan. I have to believe that they took the risk they took because, on balance, it was not as great as the risks posed by doing nothing. And I honour them for that. However, I do think they could and should have at least briefly paused to make more space for a different set of possibilities.

It is still very hard for me to let go of the fact that, although I had been at Brian's bedside every day of that last week of consciousness and at the time he was anaesthetised for what started as an urgent operation to remove fluid from his bowel, no-one told me that he might never be resuscitated again. The doctors in charge were not oblivious to my distress at the time and did their best to reassure me that Brian would be in safe hands. But how much did they suspect that his condition could, despite their actions, deteriorate so suddenly? How aware were they that another procedure to mitigate sepsis could so rapidly descend into a two week long and bitter fight for life?

Looking back a year later, I mourn the fact that the wider perspective that could have informed the doctor-patient decision-making at that juncture was subsumed by a sudden narrow focus on whatever test results had informed the upcoming intervention. I refer of course to both the Hippocratic principles supposedly adhered to by the doctors as medical professionals and the personal principles that guided Brian in living his life. Gawande cautions us that consideration of values should always take precedence over deliberations about costs, and I am left wondering whether, if they had taken precedence on this occasion, Brian and/or his doctors might have chosen different options, including that of providing a window of opportunity to say goodbye to close friends and family in peace.

I believe that if Brian had been genuinely free to choose, he might with appropriate support have faced death differently, opting for a period of palliative care in which to take proper leave of loved ones. If the doctors had been genuinely free to choose, they might, following their Hippocratic oath, have minimised a different set of harms, namely those to the relationships Brian and his family and friends valued so much. Finally, those of us left behind would almost certainly have been thankful for the choice to be there with Brian as he was taken not by the cost-based considerations of how long to keep transfusing, draining, pressurising or intubating, but by the course of nature.

I would be the last to underestimate the many positive contributions made by critical care to the human condition. However, it seems to me that critical care departments need constantly to consider not only the various degrees of risk involved in each individual procedure, but also the higher values of all parties to the operation: patients, family, friends, the medical profession itself. The main obstacle to this perspective is, in my view, the necessity for critical care to function as an integral part of 'modern'medicine. And the problem with 'modern' medicine is that it has long been comprehensively colonised by neo-liberal health economics, a system which at its most reductive, tends to count the cost of everything while appreciating the value of nothing.

At Brian's funeral last year it it was striking how many people described him as a 'true gentleman'. Of course, Brian had countless good qualities, but this is surely testimony, if it were needed, to the high value he placed on perhaps the most outstanding of them, which was his dignity. Which brings me to the lesson I want to draw from his passing, and it is this: all humans, and perhaps especially those charged with caring for other humans, should be neither resistant nor resigned to the suffering posed by death, but become simply more accepting of its inevitability. Only thus will all humans be free to live a life, and eventually die a death, with dignity.

Bob Jenkins
West Yorkshire


Doctors may treat dying patients for too long, finds BMA report
Guardian 14th March 2016

Some doctors go on treating dying patients beyond the point at which it provides benefit because of pressure from relatives or a fear of perceived failure, a report by the British Medical Association into end-of-life care has concluded.

People nearing the end of their lives should only receive medical intervention if it is “appropriate and proportionate”, according to the inquiry, which also criticised the NHS for not consistently delivering care to dying patients across the country. It urges Britain’s 250,000 doctors to be guided by their clinical judgment about a patient’s closeness to death and resist “pressure” from the person or their family to continue treatment that would bring no benefit. But it also advises medics not to take decisions that would leave patients feeling they have been “abandoned or denied treatment for reversible conditions or to relieve symptoms simply because they seem to be approaching the end of their life or have a terminal condition”.

The report, which drew on the views of 237 doctors and 269 members of the public, calls for wide-ranging changes to how the NHS handles end-of-life care to ensure every patient has “a good death”. It identified a series of flaws in care for those nearing the end of their lives.

>Patients spending their last days being looked after by relatives can suffer when they encounter “long delays in getting appropriate pain medication out of hours”

>Doctors need to be better at identifying patients who are dying as a way of ensuring that they do not end their lives in hospital when they would rather be at home

>While patients with cancer often get good end-of-life care, more must be done to help those with other illnesses, especially chronic obstructive breathing disease

>Doctors need more training to help them handle “difficult conversations” with dying patients and their relatives about the inevitability of death and be more confident in such exchanges

>The inadequacy of social care means some patients die in hospital because the local council cannot put in place arrangements to allow them to be safely discharged home

>Health professionals can be so busy that they do not always treat patients’ relatives with kindness. To some bereaved family members, such support “can often seem a low priority for already overstretched staff”

The report also urges hospital staff to do much more to discharge patients so that they can die at home – which most of the dying wish to do – even if that involves risks, such as the patient falling once they are back home. Providing “compassionate and individualised care” by doing so is more important than following time-honoured “risk-averse” hospital protocols, it says.

Dying patients prefer ending their life at home rather than in hospital partly because of “concern that at the end of life people may be stripped of their identity and seen by doctors and other healthcare staff as ‘a number’ or defined by their condition”, the report adds.

The report advises action to tackle “some doctors’ reluctance to accept that providing or continuing treatment may not always be in their patients’ best interests. In evidence-gathering sessions with 237 doctors chosen to represent the profession as a whole some medics described how colleagues “did not always look at the overall situation before deciding to provide treatment and in some of these a hospital admission, or aggressive treatment, may not have been appropriate”.

In addition, “many doctors are reluctant to decrease treatment in a managed way as a patient approaches the end of life. Some doctors remain reluctant to make that call, associating a decision not to pursue further active treatment as an acceptance of failure.”

Instead, medics should be encouraged to view death differently and to “identify and accept when patients are coming to the end of their lives without viewing this as failure.” However, doctors should adopt the best course of action for every patient based on their condition. “So while a decision may have been made to stop chemotherapy, recognising that the patient’s cancer is incurable, antibiotics for a chest infection might be appropriate,” it says.

In an attempt to bring clarity to such situations the doctors’ union recommends that “doctors and the public should be reminded that all treatment should be appropriate and proportionate, with the aim of providing a net benefit to the patient rather than pursuing aggressive but non-beneficial attempts to prolong life”.

The research also criticises the postcode lottery in standards of end-of-life care. While some areas offer a good service, “there is considerable variation in the quality of care provided to patients across the country and even within geographical areas, we well as between different conditions. High quality care is not being delivered consistently.”

NHS England admitted care was variable and could be better. “A recent survey found that three-quarters of bereaved people rate the overall quality of end-of-life care for their relative as good or better. But we know that there are variations in the care and services that people receive and we want to continue improving people’s experience of care, including relieving symptoms such as pain,” said a spokesman.

A Department of Health spokesperson added: “Everyone deserves excellent end-of-life care and while the UK was recently ranked number one in the world for the care we give, and the Care Quality Commission rates 90% of hospitals good or better, we accept that there is room for improvement.”

[posted 14th March 2016]