Who isn’t completely honest with patients?
Some years after Hurricane Katrina (2005), I read an excellent book, Five Days at Memorial by Sheri Fink, about the alleged actions of medical staff who looked after patients in the flood-stricken Memorial Medical Centre. They were accused of administering sedatives and opiates with the intention of hastening death, i.e. committing euthanasia. Immobile, comorbid and very dependent patients in the Lifecare facility stood no chance of being evacuated via the helipad, and as conditions deteriorated in the heat, they began to suffer. The details and follow up to this investigation can be read here.
This was about more than words, obviously, but the scenario of doctors administering drugs without their patient’s knowledge, ‘for their own good’, led me to investigate the history of truth in medicine. I spoke on the subject to a meeting of the West Kent Medico-Chirurgical Society, and this essay is based on that talk.
We start with an ancient story: Arria, a Roman woman, regularly visited her husband, Caecina Paetus, who had been imprisoned by the emperor Claudius. During this period, their sick son died and was buried, but Arria chose to hide this information from her husband – to spare him the pain. Pliny wrote that when she felt the sadness begin to overcome her in his presence, she took herself away so as not to reveal the truth.
An early example of deception for the (perceived) good of another. And a behaviour that may be relevant to doctors and nurses who sometimes know a great deal more about the details of their patients’ condition, and their likely fate, than their patients do.
Antiquity to industrial revolution
The fathers of medicine saw a place for withholding truth. In the ‘Decorum’, dubiously attributed to Hippocrates [460-370BC], it is written,
Perform your medical duties calmly and adroitly, concealing most things from the patient while you are attending him.
Galen [130-210AD] described ‘δειλός’, the state of fear and anxiety about ones health that should be avoided as much as possible.
Arnald de Villanova [1240-1311], a Spanish physician, stated,
Promise health to the patient who is hanging on your lips,
but once you have left him say some words to the members
of the household to the effect that he is very ill;
then if he recovers you will be praised more…
And the famous surgeon Henri de Mondeville [1260-1320] wrote, in his treatise ‘Chirurgia’,
He should promise a cure to all his patients, but not conceal the danger of the case, if there is any, from the family and friends…
500 years later however, the words of Samuel Johnson [1709-1784] were reported by Boswell,
Clearly he supported full disclosure, mainly due to personal experience.
In the early 19th century Dr Thomas Percival was asked to help settle a dispute between apothecaries, physicians and surgeons at the Manchester Royal Infirmary. Percival had done great work in analysing bills of mortality and improving working conditions in the cotton mills.
In 1803 he published ‘Medical Ethics, or a code of institutes and precepts adapted to the professional conduct of physicians and surgeons’. Appearing to err on the side of protective optimism rather than painful honesty, he wrote,
‘A physician should not be forward to make gloomy prognostications, because they savor of empiricism… the physician should be the minister of hope… It is, therefore, a sacred duty to guard himself carefully in this respectm and to avoid all things which have a tendency to discourage the patients and depress his spirits.’
A little later, 1849, the American physician Worthington Hooker [1806-1867] wrote ‘Physician and Patient, or, a practical view of mutual duties, relations and interests of the medical profession and the community’. In Chapter XVII, titled ‘Truth in our intercourse with the sick’, he writes,
First, It is erroneously assumed by those who advocate deception, that the knowledge to be concealed…would be injurious
Secondly, it is erroneously assumed that concealment can always… be effectively carried out.
Thirdly, if the deception be discovered or suspected, the effect upon the patient is much worse…
Fourthly, the destruction of confidence… [has] injurious consequences to the persons deceived
Even though Hook was beginning to challenge the tendency to conceal, individuals assumed that deception was an intrinsic medical skill well into the 20th century, as this 1927 quote from Collins demonstrates,
‘the longer I practice medicine, the more I am convinced that every physician should cultivate lying as a fine art’
Nuremberg and autonomy
By the mid-20th Century, everything had changed. Under the Nazi’s, medicine was consumed by evil. Dr Karl Brandt [1904-1948], Hitler’s “Escort Physician” and latterly Commissioner of Sanitation and Health, oversaw a systematic euthanasia programme, and widespread medical experimentation. Looking at his fresh face at a gathering of the elite in Berchestgaden, it is still difficult to understand how doctors such as he, trained to heal, could have drifted so far into the moral swamp. He was tried at Nuremberg and hung at the age 44 (having previously been sentenced to death by the Nazis for helping his family escape from Berlin to surrender before the city was overrun).
From Nuremberg emerged principles, the Nuremberg Code, that guide us today. These include, as regards medical interventions,
- The voluntary consent of the human subject is absolutely essential…
- …exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion…
- should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him/her to make an understanding and enlightened decision.
The last one is key. For consent to be valid, the person, or patient, must know everything. Consent, in this context, is a corollary of autonomy, probably the stoutest pillar in the ethical framework that doctors refer to on a day to day basis. Tom Beauchamp and James Childress, working in Healy Hall, Georgetown University, Washington, wrote Principles Of Biomedical Ethics, containing the now familiar touchstones:
Autonomy – The right for an individual to make his or her own choice.
Beneficence – The principle of acting with the best interest of the other in mind.
Non-maleficence – The principle that “above all, do no harm,” as stated in the Hippocratic Oath.
Justice – A concept that emphasizes fairness and equality among individuals.
Respect for autonomy requires full disclosure of the relevant facts, so that patients can make an informed decision. This seems simple. Yet, even today, we sometimes struggle with it.
The case of Janet Tracey, about which I have written on this blog before, is an example. A doctor issued a DNACPR notice without, in the opinion of the judge, offering in a meaningful way to discuss it with her.
“On occasions when I attempted to initiate discussions with Mrs Tracey regarding her treatment and her future she did not want to discuss these issues with me.”
The argument, that in this case it would have been cruel to press her to discuss the subject, did not wash. In fact the judge doubted that the doctor had tried as hard as he said.
‘In the absence of any documentation and in the light of what is known about Mrs Tracey’s view on the issue of resuscitation around the time of the first Notice, I am unable to accept Dr ______’s evidence that he spoke to Mrs Tracey about resuscitation prior to the implementation of the first DNACPR Notice.’
And in his summary, the judge said,
‘It may well be that such a concern also caused him to spare her a conversation which he knew was likely to cause distress to a suffering patient.’
‘…doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them.’
So, the opinions of those wise men who favoured concealment of harsh truths have been challenged, and overcome. Now, especially towards the end of life or the context of surgical procedures, it is clear that full disclosure is required. To do otherwise is rarely justified.
The Montgomery case has further nuanced our approach to providing information. Nadine Montgomery agreed to a vaginal delivery, even though her baby was large compared to the mother (who was diabetic, a risk factor for having larger babies). The baby became stuck in the birth canal and suffered a brain injury. The Supreme Court found that the risks of vaginal delivery in this particular case had not been explained adequately, and that if they had Ms Montgomery would definitely have opted for a Caesarean section.
The judgment, which is fascinating to read, includes a critical reference to the Bolam case, which was one of the precedents on which consent use to rely. Under Bolam, doctors had to say as much as a group of peers in similar circumstances would generally have said (this always seemed quite a circular argument to me).
Furthermore, because the extent to which a doctor may be inclined to discuss risks with a patient is not determined by medical learning or experience, the application of the Bolam test to this question is liable to result in the sanctioning of differences in practice which are attributable not to divergent schools of thought in medical science, but merely to divergent attitudes among doctors as to the degree of respect owed to their patients.
The judge then emphasises the need to tailor the information they give to the individual,
This role will only be performed effectively if the information provided is comprehensible. The doctor’s duty is not therefore fulfilled by bombarding the patient with technical information which she cannot reasonably be expected to grasp, let alone by routinely demanding her signature on a consent form.
Many say that good doctors have been discussing risks with their patients like this for years anyway, and now the ‘law has caught up’. But we can see how a tendency to paternalism, to partial transparency, has grown from the historical instinct to withold information. There may still be exceptions. In emergency scenarios, where the patient is vulnerable, or cannot focus on the facts, and decisions must be taken, doctors are quick to fall back on ‘best interest’ thinking. This requires an objective assessment of what is best, and a rapid discussion within the team (often led by the clinician, who will tend to drive the direction of travel). As the figure below illustrates, with increasing urgency the amount of information, and therefore the degree of autonomy permitted, may reduce.
These situations place a great power, and burden, in the hands of decision makers. It is essential that outside these ‘lifesaving’ situations, clinicians revert back to the habit of sharing information, and ensuring consent is truly informed. As we know from the good Dr Hooker’s third observation on the matter of truth – ‘if the deception be discovered or suspected, the effect upon the patient is much worse…’. Nowadays, that effect will result in more than suffering for the patient, but a professional or legal challenge to the doctor in question.
Route to the helipad – diagram of hospital taken from ‘5 days at memorial’
Tracey family, copyright Roland Hoskins
Emmett Everett – from CNN interactive website
Others – commons license
I became interested in this subject, having found myself ‘spinning’ prognostic estimates in the intensive care unit, whether consciously or unconsciously, while speaking to relatives about the best way forward. In a paper, ‘Sophistry and circumstance at the end of life’ (Pubmed abstract), I explored language choices made during these discussions. For instance, a 95% chance of dying sounds bad, and seems to meet the standard for futility; but choose to present that as ‘a 1 in 20 chance of survival’, and it doesn’t sound so hopeless. Doctors may use language differently according to their therapeutic agenda.
In a second paper, ‘The witholding of truth when counselling relatives of the critically ill: a rational defence’ (PDF), I reviewed some literature on the subject of truth-telling, and explored how being less than frank about poor prognosis can sometimes be justified.
The literature regarding truth in medicine is extensive, and this paper by Catriona Cox and Zoe Fritz is a good introduction with many helpful references.