Why did Beethoven lose his right to confidentiality?

The most unsettling thing about reading Beethoven’s post mortem report was not the graphic detail in which the condition of his liver, kidneys and pancreas were described. It was the fact that I could read it at all. I was indignant that this man, who had laid bare his soul to humanity with his music, has had his physical body laid open for our leisure. His autopsy report seemed not to be a historical document, but more a piece of confidential medical information that I shouldn’t have been allowed to see.

For healthcare professionals, sharing a patient’s medical record without good reason is misconduct. It is an abuse of power against a vulnerable person, who in that moment cannot exercise autonomy over their own private information. Even if a doctor has a legitimate cause to disclose their patient’s medical details (e.g. education, research or public safety), they must prove it and, in many cases, should gain the patient’s consent first. The post-mortem examination report is not considered a document in the public domain either: only the coroner and proper ‘interested persons’ can read a copy.

So, it is jarring to come across articles written by doctors and scientists which contain not only Beethoven’s autopsy report, but also descriptions of his many health problems and countless speculations on the cause of his death. If it is unacceptable to publish the medical details of the living and gossip about their illnesses, why are the dead not afforded the same privilege? Now that individual autonomy has become the pre-eminent ethical consideration in modern Western medicine, that seems an astonishing double standard. Why is medical confidentiality for the dead not also a sacred right?

A very famous patient and a notorious medical memoir

The main argument against confidentiality for the dead is that it would amount to censorship of historical inquiry. Wellbeing and ill health are universal phenomena which are important in not just the biographical study of individuals, but also the historical study of cultures, societies and politics. It goes without saying that the study of history is valuable to society: among many other qualities, it encourages critical thinking and fosters open-mindedness. To follow this line of thinking, publishing the medical information of dead people is not just permissible, but necessary.

That was the reasoning which Lord Moran used to justify the publication of his 1966 memoir, Winston Churchill: the Struggle for Survival 1940 – 1965. This book was drawn from Moran’s diaries in the time that he was Churchill’s personal physician. Moran recounted extraordinarily intimate stories about his famous patient, not only during World War II, but also the period afterwards when Churchill’s health began to decline. Moran said the historian GM Trevelyan convinced him it was “his duty to make known to posterity facts which were not known to others.” ⁽¹⁾

Moran found himself in hot water almost immediately. Time magazine described his book as an “act of biographical terrorism.” ⁽²⁾ Doctors writing in the Lancet and British Medical Journal were equally critical of this breach of Moran’s duty of confidentiality, so soon after his patient’s death. Churchill’s family and inner circle were also said to be deeply uncomfortable with the personal descriptions of their deceased relative. Moran was also accused of straying out of his lane, by pronouncing judgements on the skill of his medical colleagues and even on Churchill’s politics.

An interesting comparison is the account written by Lord Brain, Encounters with Winston Churchill ⁽³⁾. Brain was an eminent neurologist whom Moran often called upon to see Churchill. His account also contains personal medical information and musings on Churchill’s leadership qualities. But its publication, over thirty years posthumously in an academic journal, attracted much less controversy than Moran’s book.

Notwithstanding the time delay and understated publication, the core content of Brain’s account remains intimate. Brain acknowledged the importance of maintaining his patient’s medical “secrecy,” but went on to say: “There may well come a time after Churchill himself is dead, when publication of this account of his health may do no harm to anyone and actually be of some historical importance.”

The delay in publication might well have minimised the discomfort of Churchill’s surviving family or other known persons, which is an honourable intention. But it has little bearing on the dead person’s right to confidentiality. In my view, the material harm to Churchill surely would be the same, whether a memoir concerning him was published one year or one century after his death.

Perhaps the most compelling reason why the publication of Brain’s account was uncontroversial is that the earlier publication of Moran’s memoir seems to have set a precedent. After the initial furore passed, it had become unremarkable for a doctor to reveal personal medical information about a notable deceased patient. ⁽⁴⁾ In that sense Moran was vindicated in his belief that in some matters “only a doctor [could] give the facts accurately.” ⁽²⁾

I suppose that on the basis of precedent and the need for historical study, Beethoven has forfeited his right to confidentiality.  That question has been settled; but not the question of what we do with it.

Beethoven’s Death

Like Churchill, Beethoven was a legendary figure in his own lifetime. When news spread that he was on his deathbed, musicians from all over Europe came to pay their respects, and when he died in 1827, his funeral was attended by thousands of onlookers. ⁽⁵⁾ Afterwards, information about his life was largely controlled by Anton Schindler, an associate and one-time secretary of Beethoven, who took it upon himself to be his friend’s chief biographer.

However, in 1842 an account written by Dr Andreas Wawruch was published in Wiener Zeitschrift für Kunst, Literatur, Theater und Mode. ⁽⁶⁾ Wawruch was Beethoven’s doctor during his final illness. Just like Moran and Brain, Wawruch was keenly aware of his place in history, considering it his “sacred duty as physician responsible for the treatment” to give a medical account of Beethoven’s “brave suffering” at the end of his life. The manuscript was found in Wawruch’s notes at the time of his death, and it isn’t clear when Wawruch intended for it to be published, if at all.

Wawruch’s narrates that Beethoven, while travelling back from a winter countryside stay, developed “grave symptoms of inflammation of the lungs.” Although he recovered from this, he soon developed jaundice and dropsy (swelling), which we would recognise as signs of liver failure. Among other treatments, Wawruch attempted to relieve Beethoven’s abdominal swelling by draining the fluid out (paracentesis), but both patient and doctor knew that this illness was not survivable. Four months later, in March 1827, Beethoven died at his home in Vienna.

Wawruch’s account is quite genial, and he is respectful of his celebrated patient. At times though, I think his writing veers into hagiography: “Beethoven, with a pious resignation that confidently looks at eternity, said his prayers and turned to his surrounding friends with the words: ‘Plaudite amici, finita est comoedia’.” This overawed-ness might be explained by Wawruch’s own background as a trained classical musician. Could it have led to unreliability in other aspects of the report? For example, Wawruch writes that Beethoven returned from the village of Gneixendorf in November 1826 because he was already feeling unwell, and was frightened of becoming ill in an isolated rural spot. However, other sources suggest that Beethoven left Gneixendorf abruptly after an almighty row with his brother Johann, hence an unprepared journey on a cold stormy night in a milk wagon. ⁽⁷⁾ Even if both stories are partially correct, ⁽⁵⁾ Wawruch was either too polite to mention the alternative sequence of events, or didn’t want to question his patient further on the point.

In fairness, Wawruch is balanced about Beethoven’s alcohol intake: initially he is euphemistic (acknowledging a “predominant inclination towards alcoholic beverages”), before describing a trend towards addiction (“He began to abuse the prescription and heartily did justice to the punch”). This aspect of the account provoked a mighty row, because Anton Schindler was unhappy at Wawruch’s implication that Beethoven enjoyed drinking alcohol. Schindler furiously wrote letters and published articles refuting the perceived claims of alcoholism.

Unfortunately, evidence was beginning to emerge that Schindler had tampered with Beethoven’s writings and conversation books, with the aim of downplaying the composer’s vulgarities and apportioning blame for his deteriorating health. This damaged Schindler’s reputation as an accurate biographer, but not before Schindler’s actions had irrevocably altered the remaining evidence and left us with unreliable and incomplete records.

The cause of Beethoven’s death

The information we have about Beethoven’s case is not exhaustive, but we know some of his symptoms and personal habits, we have some knowledge of the prevalent diseases of the time, and we have of course, the autopsy findings. In my opinion, there is enough information to make a reasonable guess as to the cause of his death – alcohol-related liver cirrhosis, or syphilis (or, indeed both).  

However, many doctors and scientists have been tempted over the years to turn their intellects to the matter, hypothesising diagnoses based on the constellation of symptoms Beethoven complained of himself, or was described to have by others. Some authors have suggested esoteric diagnoses such as Whipple’s disease and sarcoidosis, ^{(8) (9)} to knit together every symptom and sign into one single diagnostic entity. When I read of such a suggestion, I wonder if the author cannot bring themselves to believe that an extraordinary person could die of an ordinary disease. After all, as the aphorism goes, common things are common.

Others have taken their quest to the laboratory. There have been some extremely well-publicised studies on locks of Beethoven’s hair. Reiter ⁽¹⁰⁾ found high levels of lead in Beethoven’s hair, and concluded that Beethoven died of lead poisoning due to Wawruch’s treatments: a claim which relies on perhaps a few too many assumptions to hold together.

More recently a group from the University of Cambridge used genomic analysis to show that Beethoven had both a strong genetic predisposition to chronic liver disease and evidence of hepatitis B infection. ⁽¹⁴⁾ This group also analysed genes which are theorised to contribute to conditions such as lupus, inflammatory bowel disease, sarcoidosis, Wilson’s disease, and haemochromatosis: all of these tests were either negative or inconclusive. A challenge for many of these test results is that we need to correlate them with Beethoven’s symptoms and lifestyle habits to ascertain their clinical relevance. For that, we still depend on incomplete and unreliable textual sources.

Overall, I would argue that such speculation and laboratory investigation are futile. Not because of a vague sense of diagnostic nihilism, but because further diagnostic refinement is impossible. It is impossible not just because of the incomplete textual record, but because the very notion of ascribing a retrospective diagnosis is a category error, due to a paradigmatic change in the conception of disease.

Paradigm shifts

The clinico-pathological model is the bedrock of our understanding of health and disease. The model takes us from a symptom to a diagnosis via the lesion: a defect in the tissues of an organ which causes a disease with characteristic features. For example, pain in the chest (the symptom) can be caused by a heart attack (the diagnosis), because of a ruptured atherosclerotic plaque causing blockage of a coronary artery (the lesion).

This medical revolution occurred at the turn of the nineteenth century in Paris, amid tumultuous political and social upheaval. Physicians such as Bichat, Laennec and Corvisart conducted post-mortem examinations on a previously unheard-of scale, and, crucially, correlated their autopsy findings with the physical signs and symptoms of the same patients during life. Young doctors flocked to France to receive this new education and spread the gospel on their return home. This led eventually to radical changes in the detection and treatment of disease across the Western world, but also to fundamental changes in the doctor-patient relationship and the ‘patient-illness relationship (for want of a better phrase).’

This change wouldn’t come to Vienna until after Beethoven’s death. So, because Beethoven, Wawruch and all their contemporaries did not think about illness in the same way we do, I believe they will not have said or written anything which we can use within our clinico-pathological model to ‘clinch’ a diagnosis. We should accept the diagnosis which was made in Beethoven’s own time on its own merits, and not constantly try to ‘improve’ it.

Since I believe that trying to make a retrospective diagnosis using our clinico-pathological model is a lost cause, any diagnoses suggested through the further analysis of textual sources or advanced laboratory tests are neither provable nor disprovable. Therefore persisting with such research can only be for the benefit of the researcher, as opposed to the patient – who has been dead for almost 200 years – or the public, who will not understand Beethoven or his music any better for this kind of work.

Having said this, could the publishing of his medical information ever possibly ‘benefit’ Beethoven? And could it possibly help people to understand him and his music better? Well, I believe that it could, and to some extent Beethoven himself believed it could. We know this thanks to a letter he wrote while staying in a small village called Heiligenstadt.

The Heiligenstadt Testament

“Alas! how could I possibly refer to the impairing of a sense which in me should be more perfectly developed than in other people, a sense which at one time I possessed in the greatest perfection…oh, I cannot do it; so forgive me, if you ever see me withdrawing from your company which I used to enjoy.”

Heiligenstadt Testament, excerpt ⁽¹⁵⁾

This letter, which Beethoven wrote in 1802, has become known as the Heiligenstadt Testament. In it, he described the devastating effect of his worsening deafness on his personal life, and the gradual loss of hope of ever being cured. His hearing loss was all the more embarrassing to him because he was a celebrated professional musician.

Beethoven was in such despair that he contemplated ending his own life. But he still felt that he had something important to say to the world with his art, and resolved to go on through his misery until he had composed all the music which he felt compelled to create. He wanted the story of this struggle to be recorded and shared with the world, so that any unfortunate person in the future could be inspired and comforted by his example:

“…let some unfortunate man derive comfort from the thought that he has found another equally unfortunate, who, notwithstanding all the obstacles imposed by nature, yet did everything in his power to be raised to the rank of noble artists and human beings.”

Heiligenstadt Testament, excerpt ⁽¹⁵⁾

The Heiligenstadt Testament is an astonishing and moving letter to read now, familiar as we are with the mark Beethoven would leave on the world. Beethoven’s confidence in his own destiny is remarkable: bear in mind that at his time, he had written a fraction of what we now consider to be his most significant works of music.

“When I am dead, request on my behalf Professor Schmidt, and if he is still living, to describe my disease, and attach this written document to his record, so that after my death at any rate the world and I may be reconciled as far as possible”

Heiligenstadt Testament, excerpt ⁽¹⁵⁾

This statement is sometimes used to justify speculation or laboratory research into the cause of Beethoven’s death. But I believe it is purely in the context of overcoming his deafness that Beethoven wished his doctor to publish his medical records. I don’t think this statement can be used to justify speculation on the medical cause of Beethoven’s death, because that illness is not the subject of this letter. In fact, I think it doesn’t even apply to investigating the cause of his chronic abdominal pain or bowel complaints, since these are not the symptoms that caused his humiliation and embarrassment and led to Beethoven’s existential crisis.

No, I think this statement should only apply to investigating the unknown cause of his deafness. In this regard, neither the post-mortem examination, historical research, or postmortem DNA analysis textual analysis have ‘solved the mystery.’ The works which tell the most compelling story of Beethoven’s life and deafness had already been written by his own hand: his letters and his music.

Perhaps this is my greatest criticism of the retrospective medical profiles of Beethoven which I have read. Understanding his ill health reveals a lot about Beethoven’s personality, character, and music, so we must explore it and write about it. But we must also avoid regressing into ‘case’ mode and making purely clinical or scientific analyses of a long-dead patient through a twenty-first century lens: I don’t think this helps us to understand Beethoven or his music any better.

Conclusion

My initial impulse for writing this article was a feeling that Beethoven has not truly left this world. The music which he gave us paints every shade of the human experience so vividly, that it is an indelible part of the fabric of Western culture even today. How, I asked, could such medical indignity be forced on him?

But truly, every dead person has contributed something to the rich tapestry of our society, no matter how small and humble a thread. By listening to Beethoven’s music, we might consider that we still have dialogue with him, and he with us. But really we should consider ourselves in dialogue with every dead human being in history, whether celebrated or unknown, whether one degree of separation from us or a hundred.

The study of history will be our descendants’ birthright, just as it was ours. We must write about the dead as we would like to be written about ourselves. We cannot maintain their strict medical confidentiality. But if we choose to study the health and illness of the dead, we should consider whether our writing upholds the dignity which is the universal right of every patient.

References

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