In a dramatic and disturbing scene from Pat Barker’s “Regeneration”, a novel on fictional events from World War I, the main character (a psychiatrist) bears witness to a radical form of therapy for a patient who had been rendered mute, presumably from his difficult experiences as a soldier during the war. The treatment in question is the application by another psychiatrist of probes and, through the probes, of an electrical current, to the back of the patient’s throat – a painful and likely traumatic experience that the patient has no say in refusing, so fixated is the treating psychiatrist on his treatment succeeding.
Writhing, mute, powerless, the patient must simply bear the treatment in a locked room until it is successful, that is, until he speaks. “You must speak”, says the treating psychiatrist, “but I shall not listen to anything you have to say” (1). Such an instance of medicinal paternalism – of treating patients as if the doctor were their father, ideally benevolently, perhaps intrusively, but always in a superior and directive position – appears undoubtedly shocking in the setting of modern medicine. Traditional medicine may have relied as recently as a few decades ago on an established set of rules, whereby the doctor was king (and male, as doctors mostly were) and the patient was the subject, obeying doctor’s orders with little information or ability to dissent or refuse, but a cultural shift has patently occurred in many countries.
In theory, the power gap between doctor and patient has dramatically narrowed – the patient is an informed consumer, entitled to be educated about his or her illness and treatment options and, in most cases, to be the ultimate decision-maker in which medical path to choose. Doctors are no longer (presumably) benign dictators, but rather facilitators of information and of a patient’s decision-making process, a concept integral to the now-ubiquitous idea of patient-centred care, which largely focuses on partnering with rather than instructing patients during the delivery of healthcare. A doctor and his or her patient should no longer be viewed as parent and child, but rather as collaborators in shared decision-making regarding healthcare (2).
Yet is this noble principle of patient collaboration and partnership always applied in the practice of modern medicine? Even in my short time as a doctor in less than a year and a half, I have encountered a number of examples where this may not have been the case.
In one instance, a patient I encountered presented to hospital with what turned out to be a significant intracerebral bleed. With an active malignancy resulting in a very low platelet count and therefore almost no ability for her blood to clot, she was deemed by the neurosurgery team to be unfit for surgical intervention and more appropriate for palliation. The patient’s son, however, was struggling to cope with this decision and, distressed but hopeful, felt that further intervention should be sought. To help understand the neurosurgery team’s decision process, he asked to be shown the CT of his mother’s head showing the intracerebral bleed and her blood results, and to be given a detailed explanation of the reasons surgical intervention was not, in fact, a possible option.
One of the doctors involved in the patient’s care refused the son’s requests to see the CT scan and blood results. In the doctor’s opinion, because the son did not have medical training that would enable him to thoroughly interpret the investigation results, showing him these results might be overwhelming, confusing, and not be of significant benefit to him. The doctor did so with the best of intentions, hoping to protect the patient’s son from further informational and emotional overload in an already fraught situation. A neurosurgeon also involved in the case, however, chose an opposite path without knowing this first doctor’s views.
In about twenty minutes of their already limited time, the neurosurgeon took the patient’s son through much of the information that was available, showing him the CT scan of his mother’s intracerebral bleed as well as her blood results, and thoroughly explaining how further intervention, both surgical and non-surgical, would likely result in greater morbidity or mortality than the alternative. This transformed the son’s view of the right path to take in his mother’s care – instead of pushing for further intervention, potentially causing his mother, himself and staff involved further distress and suffering, he accepted that the adoption of comfort measures, rather than active intervention with a curative aim, constituted the right approach. His mother died comfortably in the days that followed, and the son expressed his relative peace with the outcome.
I have also witnessed a number of decisions made by senior doctors with varying levels of patient and patient family involvement. From apparently benign decisions to pursue investigations (which can often incur significant harm) without first discussing these decisions or even informing patients of them in advance. To decisions to pursue or not pursue chemotherapy in patients for whom the benefit may be more ambiguous. Examples have abounded of situations where important decisions with potentially serious consequences are made by doctors, with patients and their families informed in a hasty manner after the fact.
As junior doctors, we may not be responsible for many decisions as significant as a move towards palliation or whether or not to pursue chemotherapy – nor should we be. However, we encounter situations where we can ourselves often be paternalistic without perhaps even realising it – placing a cannula without explaining why or asking a patient’s permission or if they properly understand the rationale for the procedure. Ceasing, starting or changing a patient’s medications without describing the reason and benefit to the patient, or organising potentially unpleasant interventions, such as regular blood sugar level monitoring throughout the night, without taking the trouble of clarifying the importance of why the patient should be woken every 2 hours for monitoring of their blood sugar levels, instead simply expecting them to comply.
Taking trouble, explaining, sharing information – these are all concepts that are, if only vaguely, emphasised in medical school. Yet in the practice of modern medicine, caught up as we so quickly become in beeping pagers, deteriorating patients, impressing our superiors and simply coping ourselves, we often lose sight of the ideals most of us strive for of both having the patient at the centre of our care and in involving them as partners in healthcare decisions. We may not be sending electrical currents down patients’ throats, but many of us may be contributing to a paternalistic structure of medicine more than we realise or desire.
Keeping in mind the limitations of time and a lack of knowledge about certain topics or superior’s reasons for certain choices that are made, even if we aren’t responsible for decisions such as operating on an intracerebral bleed or whether to remove the option of resuscitation, we can make choices every day, multiple times a day, that can improve a patient’s involvement in their care. Taking a few seconds to explain why we’d like to take blood at 3 AM, or have the patient undergo yet another chest x-ray, or that we’ve decreased the amount of opioids they can receive every day.
We can also go a step further – we can ensure to explain (as best we can) medical information or decisions made by our seniors that the seniors themselves may not have had the time, inclination or logistical freedom to do, and encouraging patients to write down and ask questions they might have of seniors when they do see them. Essentially, we can help empower patients to be on a more equal footing with their doctors, rather than passive recipients of medical care.
Within the limits of our care, and despite our lack of seniority, we can as junior doctors reduce paternalism within medicine and help place patients squarely where they should be – at the centre of our care, not just in theory, but in everyday, seemingly minor practice.
All names, personal information and clinical presentations have been changed in the interest of protecting patient’s privacy.