The reading rooms at the Wellcome Library in Euston Road are airier and cooler (in all senses of the word) alternatives to the sometimes oppressive gloom and shuffling-noises of Rare Books and Music at the British Library. The only problem is that there are so many enticing titles staring at me from the shelves that distraction is a constant problem. Today my attention was seized by The Care of Tuberculosis in the Home by James Maxwell, M.D. (London) F.R.C.P (London), Assistant Physician and Demonstrator of Practical Demonstration, St Bartholomew’s Hospital; Physician, Royal Chest Hospital; Consulting Physician, Royal National Sanatorium, Bournemouth. The book was published by Hodder and Stoughton in London in 1943. An initial flick through the pages showed that this was a book for a popular audience rather than for the medical profession, or perhaps more accurately, a literate and comfortably-off audience who could keep their TB-afflicted relation at home, in some comfort. Dr Maxwell dedicated his book to ‘those who have fought their battle and who, winning or losing, have kept their courage high’. Stirring stuff.
In 106 pages, Dr Maxwell covers The Nature of Tuberculosis, Resistance to Tuberculous Infection, Further Factors which Influence Resistance, Common Symptoms, The Outlook, Rest, Diet, Hygiene, Collapse Treatment, Other Methods of Treatment, Sanatorium, The Return to Freedom, Tuberculosis in Childhood, and “Prevention is Better …” If you’ve read Thomas Mann, the imagination is provoked by images of the consumptive patient in The Magic Mountain, or Tristan. The disease is not merely physical, but stands for other forms of decline and spiritual pestilence. Similar, in La bohème and La traviata, consumption = doom. In the twentieth century, the sad life and death of Katherine Mansfield sensationally combined bohemianism, genius and tuberculosis, ending in a ghastly death. There is no question of Mimi or Violetta taking to the mountains for months of ‘complete recumbency’, and a diet rich in cream; Mansfield often actively resisted careful living. In contrast,Dr Maxwell has a more positive perspective on tuberculosis. Aside from remarking that cases of the disease ‘are so numerous that it would be quite impossible to keep them all in sanatoria’, he remains breezy, reminding us that a diagnosis does not spell a lingering death from a ‘hopeless and incurable disease.’
People who are found to have early tuberculosis need have no such dread. and it is as well that this point should be cleared up as soon as possible after the diagnosis is made, for the influence of the mind upon the body is so tremendous that it has seriously to be reckoned with when when is assessing the probable results of treatment in the individual. The patient who accepts the news with equanimity is likely to do well.
Although Dr Maxwell says that sanatorium treatment by experts is best for the patient, for the most crucial treatment stage, this book is primarily designed for making sure that a patient who is well enough to be discharged from a sanatorium does not relapse, by reducing the changes of ‘breakdown’. His discussion throughout is notable for its positive tone, constantly striving to reduce superstition about the disease, its communication. On the latter subject, the book’s publication in 1943 is significant, for he notes that:
At the present time an obviously grave menace is the public air-raid shelter, and there can be no doubt that many patients have contracted the disease while endeavouring to guard themselves from more imminent danger from the air.
Dr Maxwell also casts aside myths about the ‘tuberculous type’, and people of delicate appearance and refined sensibility being more prone to the disease:
In fact the disease may attack anyone and, what is more, the general appearance of the patient is no safe guide in assessing his [sic] powers of resistance. It often happens that a well-built, athletic individual proves to be less able to combat the disease than one who initially appears to be of much less vigorous constitution.
At various points, Dr Maxwell emphasises that having had tuberculosis need not preclude a person from living a normal life, working, marrying, or having children. Men may certainly marry and breed, so long as they do not need to work excessively hard in order to support the family – excess physical strain and mental stress are not conducive to good health and preventing their TB from reactivating itself. He does state that pregnancy is dangerous for a woman with active tuberculosis, but that although the ‘safest course is to advise that never afterwards, no matter how well she may appear to be, should the patient become pregnant’ this advice does not apply to every case. Therefore, it is a good rule of thumb to advise against (‘forbid’, even) pregnancy for a ‘minimum of three years after it is considered that the disease has become quiescent.’ The time of greatest danger is not during the pregnancy, but after it.
Reminding patients that their disease is not a death sentence is the most significant recurring idea in Dr Maxwell’s book. The idea of resuming normal life (albeit with especial attention paid to adequate rest, good food, avoiding excessive stress and strain, and getting fresh air) is the message. He acknowledges that in a sanatorium, the patient may see others who are far sicker, and in fact, dying, but it must be emphasised that their circumstances are different, and it is impossible to know what other circumstances have contributed to their more serious condition. Dr Maxwell expects that the patient dedicate himself or herself entirely to the project of getting well as an active occupation, rather than passively expecting to be ‘cured’. The conduct of other people, including that of family and friends, is crucial to this process:
It is also a wise precaution to warn the patient, both against his friends and a large proportion of Jeremiahs whom he will encounter in the sanatorium. These people, who would be better be employed otherwise, appear to take a great delight in looking on the gloomy side …. there is always a certain number who delight in adopting a fatalistic attitude and in recounting even more gruesome stories, the majority of them entirely fanciful.
Amidst many instructions on maintaining hygiene during at-home care, daily routines, temperature charts, and nutrition, I found the descriptions of building and equipping a ‘home chalet’ particularly diverting. If a patient’s family has the space and resources to construct a summerhouse, the little hut, in the garden, it should ideally have French windows on one or two sides, to ensure a healthy flow of air, but the patient should not be exposed to direct sunlight. One chalet that the author discusses was built on a sort of turntable, so that it could rotate to catch the best breeze and light.
Most fascinating was Dr Maxwell’s prescription for ensuring rest. The regime for resting is very detailed, and part of an ongoing, and dare I say it, holistic, manner of recuperation (his advocacy for positive thinking and active patient participation in the recuperation process reads like an early manifestation of mindfulness). The resting process begins with Complete recumbency, meaning no physical or mental exertion. The patient should lie almost flat, in a darkened room, without visitors, just the constant attention of a nurse. The patient should not sit up, or move more than is absolutely necessary. Dr Maxwell admits that this stage is best administered in a hospital or sanatorium, because of the need for such detailed care. There is a second state of Complete recumbency during which the patient can receive occasional visitors, and feed him/herself. They may have an additional pillow, but talk little, and certainly not get out of bed for any reason. The third stage is Recumbency with short periods of semi-recumbency. The patient may sit up, but only for short (and increasing) periods of time, but certainly never until tiredness sets in. Mental effort must be minimised, but knitting is permitted, and students may study or be taught, but only for very short periods of time. Light fiction is recommended. Then there’s Further progress, which permits the patient to get out of bed for very short periods of time, restricted even if the patient feels capable of more than 30 minutes out of bed. In the fifth stage, short walks in the fresh air are permitted, and this is when a patient can most easily return home, on the proviso that they should not over-exert themselves mentally or physically: relapse is, in Dr Maxwell’s opinion, more psychologically damaging than any Jeremiah. During this time, the patient should eat food that places no strain upon their digestion, but which is nourishing: ‘fruit juice, weak coffee, tea, cocoa, chocolate, white bread, jelly, eggs, and strained gruel.’ Raw milk is to be avoided, but protein is the order of the day when the patient is able to sit up, or stand: ‘boiled fish, lean meat, potatoes, macaroni, purees and custards.’ Dr Maxwell warns that against over-feeding, as a ‘fat patient is not by any means necessarily a healthy patient.’
Dr Maxwell’s suggestions sound inflexible, and lonely, particularly during the early stages of treatment in a darkened room with no visitors. No wonder, then, that he had to emphasise repeatedly the importance of psychological strength. For a previously fit and active person, this degree of enforced rest must have felt oppressive, and as the author says, contributed to the fallacious idea that they had a serious, fatal disease. Dr Maxwell cautions also against excessive or reckless optimism:
The natural reaction on leaving the sanatorium is to celebrate the fact with indulgences which are likely to do harm, and this tendency is to be discouraged. The ignorant patient who has failed to learn his lesson is to be pitied, but he must be given his change; the patient who deliberately neglects to carry out rules which he knows perfectly well, and the purpose of which has been explained to him, is one on whom no sympathy need be wasted.
I found fascinating the combination of personal responsibility and total, dedicated care as a means of overcoming disease, in the absence of viable drug treatments. Now, antibiotics are the main treatment for active and latent forms of tuberculosis, but lapses from compliance (i.e. not taking the full course of medication) mean that antibiotic-resistant forms of tuberculosis are becoming more common. Dr Maxwell’s plan of rest, hygiene, and diet sounds doctrinaire, but as a means of restoring the body to health, in combination with modern treatments, might it still have value? Exploring historical methods of dealing with disease is the aspect of the history of medicine that I find most interesting, demonstrating so many changing ideas about how doctors thought of ‘the patient.’ In Dr Maxwell’s case, the patient is not a passive victim of illness, nor yet a militant fighter against illness. Instead, the patient, with support and mental strength, helps to nurse him/herself through illness, with the goal of resuming a normal life.