by Chris Winearls
In 1960 Belding Scribner provided the proof that haemodialysis could maintain the lives of patients with irreversible renal failure. One of early Seattle patients was a British medical student, Robin Eady, who after returning to England, was established on home haemodialysis and eventually had a successful renal transplant. He survived for 54 years.
The challenge had been the “how?” but it soon became the “who? ”. In Seattle a selection committee was assembled. Their deliberations and decisions must have been painful. In 1966, working at the Royal Free Hospital London Stanley Shaldon set out his criteria.
| Indications | Exclusions |
| Imminent death from uraemia | Coronary or cerebrovascular disease |
| Ill health preventing work | Other life-threatening disease |
| Potential to return to productive social functioning | Children or adults >55 years |
He wrote, ”Undoubtedly the best candidates are married, with young children and stable home environment, free from economic worries with a sedentary occupation enabling them to work, with private transport, a telephone and an income to afford the expensive diet.”
The next challenge was the “whether to?” The medical establishment was not unanimous about following the US and establishing a programme in the NHS. It was argued that the treatment was cruel and expensive. The recommendations of the 1964 de Wardener Working Party were accepted by the Ministry of Health and a network of pilot sites throughout the country authorised and funded in 1967. Only a few of the pioneering “first generation” nephrologists who set up these pilots are still alive but we do have the descriptions of this phase in books by Stewart Cameron1 and Paul Kimmel 2.
There are however many of us second generation nephrologists who witnessed the evolution of these programmes and experienced the pressure to constrain their expansion. What this second generation of nephrologists saw was a risk averse policy of acceptance for treatment. It would be offered to young (<55 year old) patients without co-morbidities such as diabetes, who had uncomplicated social backgrounds and family support, potential for continued employment, capable of performing home haemodialysis and/or renal transplantation. There was no commitment to hospital-based haemodialysis. The limited new stations were there to support new referrals and patients with intercurrent problems. The selection of patients was made at two points. The first was referral and the second by the renal unit consultants. Curiously Article 2 of the European Convention on Human Rights adopted in 1950 was not invoked by those who were refused access to treatment. This Article makes clear that “States have a duty to prevent unlawful loss of life and to take steps to protect lives.” It includes a duty to protect people from the risk of harm from the activities of public authorities.
In practice, referring doctors, patients and their families were simply told that they were not medically suitable for treatment. These were uncomfortable conversations and much of what was said was not supported by evidence and was frankly tendentious. This was covert rationing because the more usual reason was that the units had no spare capacity. There was no means of appeal but supportive doctors would try referring to alternative hospitals. In London there was one unit (Dulwich) attached to Kings College Hospital that did accept diabetics and patients who were Hepatitis B positive. I remember Dr. Victor Parsons accepting such a patient for dialysis at Dulwich but not before he had told me that the patients should not have had to rely on his mercy.
It soon became obvious that the rationing was not medically justified. The limit was in the resources. A Health Minister, later Chancellor of the Exchequer, was interviewed on BBC TV to explain why there was this gap between what was possible and was being provided. I recall him saying that it was all very difficult and the government was struggling to keep up with all the marvellous but expensive developments in medicine. The Royal College of Physicians was silent and the Renal Association initially declined to become involved. Stewart Cameron spoke up and earned a magisterial rebuke for shroud waving in The Times.
The advent of CAPD in the early 1980s gave temporary respite as the treatment could be set up with the insertion of a PD catheter and prescription of fluids. When the hospital saw this budget line being exceeded GPs were asked to prescribe the PD bags on FP10s. Various attempts were made to stop this subterfuge but they failed. It was a good alternative to HD for many patients but the respite was temporary as PD could fail usually because of recurrent peritonitis as the line connections were vulnerable to bacterial contamination. The only alternative was a switch to haemodialysis and some patients were simply told that they were not suitable for this modality.
This rationing became a scandal which attracted the attention of the press and TV. Geoffrey Berlyne, originally from Manchester who had emigrated to the United States published a direct challenge in Nephron.3 This problem troubled Prof Netar Mallick the Director of the Renal Unit at the Manchester Royal Infirmary. He had even allowed a TV crew to record an MDT meeting (thought it was not called that then) discussing the allocation of dialysis places and the converse. One patient who was turned down caught a train to London and presented himself to A&E at a major teaching hospital known to have a dialysis unit.
The take on rate for dialysis varied around the country. In 1983 it was ~30 patients per million population (pmp) in West London served by the Hammersmith Hospital, St Mary’s Hospital Paddington, and the larger Charing Cross Hospital that had an active home programme. This was significantly lower than in comparable European countries.
In 1990 the results of a survey performed in three areas of the UK was published in the British Medical Journal.4 It showed that the incidence was ~80 pmp over twice what was being provided. The Health Minister suggested the UK should aim for 40pmp. When visiting a hospital in the Midlands she asked the Clinical Director of a renal unit if “he was over 40.” He was flattered at her perception of his youthful looks.
This was the time of the internal market and the new transactional NHS placing purchasers and providers across the negotiating table. The end-users, the patients, were not at the table. The mantra was that the money followed the patient. The equation failed because there were too many patients and not enough money. If providers exceeded their contracts there was no extra payment; if treatments were not delivered the providers were censured. Our pleas that it was not possible to get a quart out of a pint pot were met with blank looks. Nephrologists were told to improvise (twice weekly dialysis), magically increase transplant rates, and when all else failed use our clinical judgement. It was more a case of judicial black cap sentencing.
Gradually, with greater awareness, public pressure, opening of satellite units and campaigns by the BKPA (British Kidney Patients Association), the NHS was shamed into matching supply with demand. In 1997 there was a general election. The Labour government relented and the new Prime Minister pressured his curmudgeonly Chancellor to stump up.
Read more about the challenges of meeting demand for renal replacement therapy in the 1980s.
The take on rate gradually increased and now stands at ~150 pmp. Some of the increased dialysis capacity is provided by private contracted dialysis companies which are very efficient. They have economies of scale and precise contracts. The capital expenditure is conveniently kept off the Exchequer’s books.
This success in increasing take on rate has created new challenges explained in part by the change in the demography of CKD. There is an increase in the number of older patients, who have a higher incidence of renal failure than the 18-55y age group, and the increased prevalence of diabetes.
The challenge is deciding whether, the diagnosis of ESRF (Stage 5 CKD) notwithstanding, starting RRT is sensible. The challenge has certainly been recognised and has changed practice. Morbidity and mortality for aged multi-morbid patients undertaking dialysis is high and the impact on the quality of life both for the patients and their close persons is significant. For these reasons, a new modality is now offered in most renal units: that of renal supportive care or maximum conservative management (terminology varies from unit to unit) where-by every effort is made to attend to the patient’s medical, social and sometimes spiritual needs without resorting to dialysis therapies. The evidence to date suggests that this treatment paradigm is acceptable to many patients and their families and we await the outcome of a large NIHR funded randomised trial. Regardless of the trial outcome, many practical challenges confront nephrologists every day, but early discussion with patients and their families about priorities of care and what matters to them often allows satisfactory solutions to be reached and gives patients and their families some control over their care. Where an individual patient does not have family or an advocate, nephrologists are expected to appoint IMCAs (independent medical care advocate) to achieve best interest decisions.
Patients are now seen in dedicated clinics staffed by nephrologists, specialist nurses, psychologists, dieticians and counsellors.
Another current challenge is how and when to stop treatment which has proved to be unpleasant, difficult to provide and without real life benefit for the patient. There can be an uncomfortable conflict of hopes, expectations and reality. Our palliative care colleagues provide invaluable support after dialysis has been withdrawn, but cannot help resolving this dilemma because the border between treating to defer death, and treating to ease death has not been crossed.
The difficulty has some parallels with ‘Assisted Dying’. For dialysis patients it can be easier in some ways but ethically more difficult. If a dialysis patient has an apparently terminal illness or just a wish not to continue with what they perceive as burdensome treatment, and they have capacity, they can ask to stop their life sustaining and death deferring, treatment. Some may be afraid to do so dreading the effects of renal failure. The mode of death does not involve pain, but nausea, breathlessness, foul smell and taste in the mouth and on the breath, myoclonic jerks and pruritus. Although these symptoms can be palliated but these measures are not completely effective so without sedation the patient would suffer.
If this decision is deemed rational and appropriate by the physician, the patient and the next of kin, it can be enacted after a non-adversarial discussion. Autonomy will have been respected and death will occur in 4-10 days. An alternative would be to assist death before the symptoms begin. However, this process of dialysis withdrawal and pro-active palliation, could be challenged using the same arguments raised against “Assisted Dying“. How was it known for certain that the disease process was likely to be imminently fatal? Could the burdensome dialysis treatment have been modified and improved? How was it known that the patient had capacity? If they did, how was it known that they were not acting under duress? At present respect for autonomy trumps all these challenges.
If on the other hand a patient lacks capacity and the continuing of life-sustaining dialysis is considered futile because the underlying disease is deemed imminently fatal, dialysis withdrawal can be on the grounds of “best interests”. There is no prolonged legal process involved but relatives and staff are consulted. Ultimately the responsible physician after consulting the multidisciplinary team takes responsibility for the decision and enacts it. This process could also be challenged as the start of “the slippery slope”. Indeed dialysis is discontinued in patients who have illnesses such as dementia, that are not imminently fatal, but are considered to make dialysis futile. The reason given is that the treatment is too difficult to deliver in a subject who cannot co-operate.
It seems that there is no appetite for adopting a legal process for the authorisation of withdrawing dialysis which is just as well for it is now the commonest cause of death of dialysis patients. There is usually no urgency in reaching the decision so there is time for consulting the hospital ethics committee, independent colleagues and the next of kin.
Chris Winearls
Acknowledgements: Prof Edwina Brown and Dr Aine Burns provided helpful suggestions and criticism.
References:
Last Updated on November 12, 2025 by John Feehally