By Christopher Winearls [1]
On 10th March 1984, a 44-year-old severely disabled man was started on maintenance haemodialysis in the Oxford Renal Unit. By the end of the year, during which this treatment had been problematic, it was decided to discontinue it. This decision was made public by his general practitioner. A national newspaper published the story, condemning the decision. Other media coverage followed and there were questions in Parliament. The British Kidney Patients Association offered to fund his treatment in a private hospital in London. He was transferred there on 2nd January 1985, continued treatment but died two weeks later.
The case caused controversy and anguish in equal measure. The reputation and morale of the kidney unit and the consultant were damaged, not least by being admonished by the GMC for breaching confidentiality in a press conference called to explain the circumstances.
This was an important episode in British nephrology, and it remains relevant. I was appointed as a consultant in Oxford in 1988, and observed the long-term impact of these events on its workings and morale.
I am grateful to the social worker and the medical registrar on the Oxford Renal Unit (later renamed the Oxford Kidney Unit) at the time, and the General Manager of the Churchill Hospital for sharing their recollections. The information provided is in the public domain.
Contents
The context for this affair was the slow growth of resources for renal replacement therapy in the UK, from the time in the mid-1960s that it had been demonstrated as an effective (if complex and high-cost) therapy for end-stage renal disease. Early patients offered it were fortunate to be accepted by a few pioneering doctors. In the UK the NHS was not convinced that funding treatment was a good use of resources. Survival appeared to be short, the quality of life limited and the cost “prohibitive”. Eventually, a Department of Health Working Party was established in 1965, chaired by Prof Hugh de Wardener, which recommended the establishment of dialysis units in all UK regions. The NHS agreed to fund pilot projects around the country. Early rules were strict; that patients should be suitable for home haemodialysis and eventually renal transplantation.
Oxford opened its “Artificial Kidney Unit” in 1968. A consultant physician, Dr Desmond Oliver, was appointed. The Oxford Renal Unit had a wide catchment taking patients from six counties. Only the fittest young patients were accepted. The results of renal transplantation were so bad that few patients put themselves forward.
The funding of this “pilot” was at first adequate, but demand grew. There was much fund raising for kidney machines, but the cost of home conversions, consumables, water, and electricity was funded by the NHS. Every year Dr Oliver had to go to the Regional Health Authority to ask for more money. They grimaced but usually paid, knowing that he was parsimonious and deployed the limited resources carefully.
Some respite from the pressure on resources came with the appointment of Professor Peter Morris, an Australian from Melbourne, to the Nuffield Chair of Surgery. He set up a successful transplant programme which allowed many young patients to escape dialysis for at least a few years. The 5-year survival of transplants was about 40%, the patients had then to return to dialysis .
Success brought its own problems. Some patients were just not socially or medically suitable for home haemodialysis. Other candidates with co-morbidities were being referred, and it could not honestly be said that they were “unsuitable”. The pressure grew, the unit was always full, the ward filled with patients with complications of treatment, especially vascular access, and those who needed renal care while having other procedures.
As in most UK units, CAPD was introduced as an alternative cheap home dialysis treatment, but the. pressure continued to grow, and patients were still being turned down. CAPD patients at that time were generally older, frailer, had diabetes, cancer, or mental health issues.
The Oxford Renal Unit, though pressured, was more fortunate than many units in the big cities. The Oxford catchment area had less social deprivation, a small minority ethnic population (which has a four times higher prevalence of renal disease). It had a thriving transplant unit and an established and successful home haemodialysis programme.
Across the UK it was clear there was inequity of access for dialysis, discriminating for example against those with awkward social backgrounds, drug addicts, the unemployed, and those who lacked spoken English. TV programmes discussed the issue; a Health Minister, Kenneth Clarke, unconvincingly bemoaned the government’s problem in keeping up with medical advances.
Individual nephrologists campaigned locally for extra resources but there was no “speaking out” by the Royal College of Physicians or the Renal Association. They did not believe that arguing for resources was their responsibility.
It was in this setting that Derek Sage was referred to the Oxford Renal Unit. He was 44, unemployed, homeless, and lived in a hostel, Simon House. He was said to have mental health problems resulting from hypertensive brain damage. He had little insight into his medical problems.
The renal unit staff were surprised that Dr Oliver started Derek on dialysis. Few other nephrologists in the UK would have offered anything but palliative care. Dr Oliver was a compassionate and humane man with no social or racial prejudices. His own wife was a dialysis patient, he was a single-handed consultant who hardly ever took a holiday. He believed in the restorative power of dialysis and may have hoped that Derek’s mental state would improve with treatment. This was often done as a “trial of dialysis” which was continued if successful, or stopped if not.
Derek was not competent (we now would say he lacked capacity) to discuss the decision. His family had washed their hands of him. He would come to the unit unkempt, sometimes with the results of incontinence unsorted, and sometimes with a hostel staff member to sit with him. Curtains could not be drawn because staff had to keep an eye on him while managing other patients. He needed to be restrained, sometimes he had to be sedated. He could not co-operate with dietary and fluid restriction or take his medication. He kept his pills under the pillow “waiting for them to hatch”.
The situation was becoming very difficult. The other patients were frightened, the staff up in arms at being asked to manage a disruptive, uncooperative patient with no insight and no apparent benefit from treatment.
Into this apparently intractable problem stepped a new renal registrar, a confident, competent young doctor with common sense but relatively little experience. He describes starting this, his first registrar job, and being asked by dialysis nurses to deal with Derek, who was brought to dialysis but couldn’t lie still, and engaged in ‘difficult behaviour’. His behaviour and neurological state worsened after he was beaten up in his hostel and suffered a traumatic brain haemorrhage. Dr Oliver told the registrar he was going to stop dialysing Derek. The registrar remembers speaking to a careworker from Derek’s hostel, who attended with him, to say that we thought he was deteriorating and that continuing dialysis may not be kind, and being told by the careworker that “this would not be allowed.” He remembers telling Dr Oliver that he thought there would be a lot of trouble if he stopped dialysing Derek, and being told that his opinion had been heard but that this was the decision. The registrar went on holiday and then saw on the evening news an item featuring Derek Sage in which someone from the hostel said “no one from the dialysis unit had ever spoken to us” and saying that he was a “much loved member of the (hostel) community.” This seemed inconsistent with the fact that that he had been beaten unconscious in the hostel toilets. On returning from holiday he found that Dr Oliver had taken leave from work and that a colleague would be covering the dialysis unit. He observed that when Dr Oliver returned to work he was different, and never the same confident consultant again. He felt that, differently handled, the storm could have been avoided. The staff had persevered for nine months. It is likely that the challenge of dialysing Derek was having an effect on the other patients and staff alike. A dialysis unit remains a unique clinical environment in the relentless and unavoidable regular attendance required of patients. When it is good, it is a warm friendly reassuring place. When it is awful, there is no escape.
Dr Oliver must have realised in hindsight that starting Derek on dialysis had been a mistake. The treatment had not achieved its objective. He decided on his own, but with the support of his staff, to stop the regular dialysis treatment. This was a clinical decision about stopping a treatment which was not working. He did not believe he needed to seek the agreement of the hostel staff or the next of kin. In retrospect he would have been wise to have done so. This decision would now be deemed a “best interests” issue and would require broad consultation, a specific process and documentation.
Derek’s GP looked after the residents of the hostel. This would have been a tough part of her practice and she would have felt protective of her patients who probably suffered the prejudices of the citizens of Oxford. She had apparently not been informed of the decision and did not agree with it. Whether she had even visited the Kidney Unit to see what the problems were, we do not know.
The President of the British Kidney Patients Association, Mrs Elizabeth Ward OBE, a forceful woman whose son had developed renal failure and gone through dialysis and then a renal transplant, was approached. She had campaigned tirelessly for expansion and improvement of treatment facilities for patients with renal failure. She had a reputation for tackling nephrologists directly and robustly. She did not like Dr Oliver, who had discouraged her from competing with the local charities which were fund raising in the six counties which the Oxford Kidney Unit served, or making disbursements. She was aware of the tacit rationing of dialysis patients, and campaigned hard to improve access to treatment. I (CGW) was aware that she was looking for a case that she could use to create headlines about the rationing of dialysis, in order to embarrass the Department of Health. When previously I was a locum consultant at the Hammersmith Hospital, we had severe pressures on our dialysis unit, and I spent much of my time trying to get extra resources and refusing referrals. She phoned me up to ask how we were coping, and I told her of our difficulties. She asked me to provide the name of a patient whom we had had to refuse dialysis because of lack of resources. I told her I could not do that for obvious reasons. First, I had a duty of confidentiality, and second I would not want to expose my hospital to adverse publicity.
Derek Sage presented her with her cause célèbre and she launched her “J’accuse”. A national newspaper took up the story. The Oxford Renal Unit was described as having a concentration camp attitude to the patients. The General Manager of the Churchill Hospital, a distinguished and compassionate consultant, conducted an enquiry and concluded that the decision was probably correct. A number of colleagues agreed but did not want their opinions attributed.
Mrs Ward demanded that Derek be transferred to a private hospital in Hampstead under the care of Dr John Moorhead. The BKPA would pay and then invoice the Oxfordshire Health Authority. He was moved there on the 2nd January 1985, and was reported to be content and thriving. He continued on dialysis but died two weeks later.
There was a press conference to explain and justify the decision to stop dialysis. Information which should have been privileged by medical confidentiality was provided. The fact that the GP, the BKPA and the newspapers had put the detail in the public domain was ignored. They were reported to the GMC, which admonished them.
The effect of this event on the Renal Unit was significant. Dr Oliver was so upset by the attacks on him that he took time off and considered retirement. CGW, later working with him as a second consultant found that Dr Oliver could never again deal with the clinical issue of dialysis withdrawal.
This debacle may never have happened had Dr Oliver not grasped the nettle when he did. Derek Sage died, despite continuing dialysis, two weeks after the decision to stop was put into effect and his transfer to London. Dr Oliver can be criticised, not so much for his decision, but for how he reached it and enacted it. He was from a generation of consultants who took their responsibilities very seriously and believed they had to rely on their judgement and exercise their authority. It is still so – the buck has to stop with the consultant. The final decision is not made by referendum but by reaching a consensus.
In retrospect this sad episode had a deeper cause. No doctor should be single-handed. The work and pressure are relentless. Holidays apart from short breaks when an experienced senior registrar is available are inadequate respite. But most important is the need for a colleague with whom to share difficult problems. Even so it would have been prudent to seek a second opinion from another consultant, not involved in Derek’s case and not associated with the Oxford Renal Unit.
Even if a decision had been reached that continuing with haemodialysis was not in Derek’s best interests, this could have been appealed by third parties, e.g. the social worker responsible for his supervision.
If we re-enacted the scenario, what would happen today?
There would be first a meeting of the multidisciplinary team (MDT) with the supervising consultant chairing, the patient’s named nurse, the unit’s psychiatrist and counsellor (we no longer have our own medical social workers). A formal assessment of Derek’s capacity would have been made. Relevant legal principles are discussed in specialist legal texts [2].
The answer to all four points would have been No.
If it was believed that dialysis should be discontinued which would lead to death soon after, the decision maker would be required to take into account the following considerations and adhere to the following procedures for a life sustaining treatment:
If the decision in question concerns life sustaining care or treatment, the starting point is that it will be in a person’s best interests for life to continue. However, detailed guidance in the Act’s Code of Practice accepts that there will be some situations where the burden of treatment outweighs the benefits of life and so it will be in the patient’s best interests not to provide life sustaining treatment. In cases of doubt it may be necessary to seek legal advice or for a case to be referred to the Court of Protection.
Person’s wishes, feelings, beliefs and values: If the decision in question concerns life sustaining provision the decision maker must not be motivated to bring about a person’s death. If treatment is to be withdrawn completely then the case is referred to the Court of Protection, which has enhanced powers to include health and welfare.
View of others: It is important that, where practicable and appropriate, the decision maker consults others and takes into account their views as to what would be in the best interest of the individual who lacks capacity. These might include:
Whoever makes a decision on behalf of a patient who does not have the capacity to make that decision for themselves, must always be able to justify their decision on the grounds that they were acting in the patient’s best interest. They must be able to show that they considered the correct test for capacity and the factors in the best interests checklist before coming to a decision, and that their belief as to capacity/best interests was a reasonable one.
Given the gravity of the decision, a substitute decision maker, i.e. a Court Appointed Deputy would have been requested. The decision may well have been referred to the Court of Protection.
As it turned out, this lengthy process would never have been completed because of Derek’s death.
One can only admire those individuals who fight for the rights of the disadvantaged and disliked in our society. A GP who chooses to care for the least endearing, least co-operative cohort of citizens deserves respect. Perhaps she could have come up to the Renal Unit and see what was involved in dialysing Derek and how little it was achieving. Dr Oliver was a gentle and courteous man who would have listened carefully to what she had to say.
One can only hope that she was not motivated by a wish to use Derek’s plight to bring to the attention of the public to this deprived community of homeless individuals with the intent to shame people into accepting that these “down and outs” and “rough sleepers” are as human as the rest of us and deserve the same consideration.
One suspects that Elizabeth Ward was motivated by a wish to draw attention to the scandal of limited dialysis facilities in the UK, but also to gain some publicity for her charity. She was someone who actively courted publicity for her cause. She undoubtedly resented Des Oliver for excluding her charity from his unit and would have been indifferent to the consequence of him being humiliated and wounded. The irony of this was her son, though not living in the Oxford catchment, was treated in the Oxford Transplant Centre which worked closely with the Kidney Unit.
Younger nephrologists were very disappointed that many of Dr Oliver’s senior colleagues either did not support him or kept their support quiet. Most nephrologists would not have elected to take Derek on in the first place. Had they taken him on they would likely have reached the same decision ultimately.
We can but despair of the media sacrificing objectivity for easy headlines. They behaved like a lynch mob. To have been dispassionate would have been boring. One wonders whether they ever ask themselves the long-term effects of their actions on an organisation and a physician who having been publicly humiliated had to pick themselves up and face the challenges and responsibilities of his profession.
Underlying this tragic case was the uncomfortable truth that Renal Units were grossly under-resourced. The scandal was not that a very disabled man’s dialysis had to be stopped but that very many able-bodied but older patients with kidney failure were never even started. The UK had the lowest dialysis take-on rate in Western Europe. It took fifteen years before we could hold our heads up in European renal fora.
This has been called a story of its time, thankfully long past. However, we believe it should be recorded, for history has that bad habit of repeating itself.
We do not exonerate Desmond Oliver for his part in it. He was naïve and clumsy in his handling of the difficult decision to stop dialysis, and nobody had applauded the decision to start the treatment. He died prematurely two years after retirement[3]. His funeral was attended by Oxford’s first dialysis patient, Jean Tarver, thirty years after he saved her life by ignoring the instruction to palliate her uraemia. He was a remarkable pioneer who dedicated his life to the cause of treating renal failure and enhanced the lives of hundreds of patients and inspired and trained many young nephrologists (read his obituary). It is sad that he is remembered more for how he managed one tragic case.
We now counsel our younger consultants to listen carefully to their colleagues and co-professionals but to remember this that the final responsibility is still theirs. Although there are systems in place to ensure that decisions are taken properly and legally, professionals are not protected from abuse, especially on social media. The recent case of Charlie Gard a patient at the Great Ormond Street Hospital is a vivid and distressing example[4].
The Press defends its freedom to ask the difficult questions and speak out and so it should. But it cares less about the responsibility that comes with its power and freedom. The lack of objectivity, the imperviousness to their carelessness with consequences diminish their claims to be brave defenders of free speech. Their motives are commercial, not lofty. I advise colleagues not to speak to any newspaper reporters, but leave it to the hospital’s PR department. You may control what you say but you cannot control what will be printed or broadcast.
[1] Dr Christopher Winearls FRCP was consultant and later clinical director of the Oxford Kidney Unit 1988-2019. He had held SHO and Registrar posts there before his later appointment as consultant, and knew Dr Oliver and the ethos of the unit well.
[2] For example: Medical Law, Text, Cases, and Materials 6th Edition 2022 Ed Emily Jackson. Chapter 5 Incapacity 1: Adults Withdrawing life-prolonging treatment pp289-96. Oxford University Press.
[3] GOSH vs Constance Yates, Christopher Gard and Charlie Gard by his Guardian. Royal Courts of Justice 24th July 2017
Last Updated on March 21, 2024 by neilturn