What matters — medicine, culture, and the space in between

Guddi Vijaya Rani Singh is a Medact member and a doctor training in paediatrics in London. She also has a masters in Public Health from Harvard University and has worked for the World Health Organization (WHO). She is passionate about social justice, human rights, and challenging barriers to access to health. She has worked with 38 Degrees, OpenDemocracy on the Save the NHS Campaign.

This blog was originally published in the BMJ Online.My grandfather passed away last year. Surrounded by travel weary loved ones (from an extended family that also extends across continents), this man from rural India was promised a peaceful death in dignity.

Except that he died in 2013 in one of Delhi’s largest private hospitals, with every medical test and procedure made available by his anxious progeny. In the last 42 days of his life, he sustained two chest drains, urinary catheterisation, daily blood tests, and repeated intubation and ventilation; he became a pin cushion for Delhi’s doctors.

Modern medicine’s miracles kept him alive for a while longer, it’s true. But they also kept him away from home; intensive care staff—not his relatives—were the ones by his bedside.

His family’s ability to pay—and medicine’s inability to give up—resulted in theft: a peaceful demise stolen at the critical moment. Lacking a coherent view of how people might live successfully all the way to the very end, we have allowed our fates to be controlled by medicine, technology, and strangers. I couldn’t help but think that there was something wrong with this. And I should know; I’m a doctor.

I wish the doctors treating my grandfather could have read Atul Gawande’s new book, Being Mortal: Medicine and What Matters in the End, a physician’s meditation on death and dying in the modern age. Gawande, as so many times before, expertly lays out the terrain of a healthcare system that seems to have lost its way. With infinitely human stories, he exposes important failings in the way we treat death.

What does it mean when doctors pride themselves on engaging their patients in “informed consent,” when all we really do is throw them confounding options for surgery, chemotherapy, or simply doing nothing, expecting them to make sense of it all? What does it say about us when we think that the pain and incapacity of more medicine should be favoured over sharing memories, passing on wisdom, and connecting with loved ones in the last remaining days of life? This tension between life preservation on the one hand and comfort and dignity on the other is difficult, but medicine’s failure to attend to the question denies patients agency in the moments that are among life’s most important. It causes suffering. And we should be ashamed.

It’s not just the end of life that faces this conundrum; what about the beginning of life? In my own specialty, advances in neonatal medicine mean that preterm deliveries at just 22 weeks gestation are now viable. Babies can suffer repeated invasive procedures and numerous courses of toxic antibiotics in an attempt to make it through this period. Even though we are getting better at keeping more of these babies alive, the proportion with major disabilities is not going down: meaning that the total number of children in the community with lifelong health problems attributable to extremely preterm birth will rise. Here—just as with dying—the question of “can we?” supersedes the much thornier one of “should we?”.

The French philosopher and historian, Michel Foucault, coined the term “medical gaze” to describe the dehumanising medical separation of the patient’s body from the patient’s person or identity. During the course of the 18th and 19th centuries, in transforming patients into problematic body parts, rather than viewing them as whole human beings part of a complex psychological and social environment, doctors went from asking “what is wrong with you?” to asking “where does it hurt?”.

Today, we are quick to diagnose, and even quicker to treat—even in the absence of complete data. Solutions are the order of the day, even if that means consigning our patients to a lifetime of pushing chemicals.

But that’s not the only cultural influence on our medical system. With its roots in what Max Weber called “The Protestant Work Ethic,” neoliberal ideology now penetrates every aspect of Western medical practice.

And health workers across the spectrum will attest to this. As a medical doctor in the UK, I myself have seen payment by results, truncated consultation times, and waiting time limits reduce patients and health practitioners alike to mere numbers. The emphasis on outcomes and productivity has made job satisfaction and patient care afterthoughts.

The target driven world of modern medicine—with its focus on measurables, outcomes, and itemisation—is a prescription for profit. We can offer our patients a panoply of pills, placebos, and false promises, but missing from the whole cocktail is one simple ingredient: time. Time for empathy, time for caring, time for love. But, as hospital managers will tell you, there is no time for love these days.

Which is a shame, because love is powerful. A new film, Alive Inside: A Story of Music and Memory, shows just how much by looking at the often astonishing effects of music therapy in easing the suffering of Alzheimer’s patients. As one doctor quips: “Our health system imagines the human body to be a very complicated machine; we have medicines that can adjust the dials.” But in doing so, “We haven’t done anything to touch the heart and soul of the patient.”

In perhaps the first critical look at the interplay between culture and health in mainstream medical literature, David Napier’s Lancet commission on “Culture and Health” is not just timely, it’s overdue. The report makes strong demands. It asks the medical profession to look itself in the mirror. It demands introspection, as well as a long hard look from the outside. That it should have taken a white, male lead author to get issues that have long been discussed in anthropological circles (often by women of colour) noticed by the medical establishment says something about the very culture we need to change.

Howard Waitzkin, an American sociologist and doctor, points out that the macro power relations in capitalist society are reproduced in miniature in doctors’ examination rooms. In other words, structures within medicine—including educational institutions—serve to replicate the same power differentials that exist without it. Gender, race, and wealth are the determinants of success, and the competitive is valued over the collaborative.

The Lancet commission’s findings echo this critique. Essentially, the indictment is this: it is our systematic neglect of culture in health—and our persistence in doing so—that is the “single biggest barrier to advancement of the highest attainable standard of health worldwide.”

But why does any of this matter? It matters because medicine is in crisis. It matters because the word “care” seems ever further removed from the health that we actually deliver. Recent history shows that culture has ramifications on health at local, national, and global levels.

In the UK, the condemning Francis Report on the Mid Staffordshire NHS Trust is a clear indication of this. The blame for hundreds of preventable patient deaths here wasn’t placed on the shoulders of any one specific group or person. Rather it was the “culture of the NHS” that was deemed responsible. In response to the neoliberal imperatives for profit came a “tick box culture” that neglected to attend to basic human needs.

But as well as impacting on individual patients, the current culture of medicine in the UK has meant a collective failure of the medical establishment to resist the political onslaught on the NHS. The Health and Social Care Act 2012 could have been stopped by the medical profession when it had the power and opportunity to do so. Instead, an unhealthy concoction of political ignorance, fear, and greed lead to a sluggish response from the medical establishment, who thus betrayed the very patients and health service it should have been defending.

And, finally, the cultures embedded in the global health machine have been called into question by the ongoing saga of the Ebola outbreak. Just why were we so slow to respond? Organisational failure? Thrift and selfishness? An overreliance on cures, vaccines, and drugs at the expense of strengthening health systems and state apparatus? All are emblematic of a health system steeped in the neoliberal ideology prevalent in the world at large.

When as much as a third of the annual healthcare bill for the United States is deemed wasteful, and when unnecessary tests and procedures and financial incentives can lead to inadequate treatment, exactly whose interests is all of this medical activity serving?  The swollen medical industrial complex totters under its own weight, as commercial considerations further undermine the responsibility of doctors toward their patients.

Which brings us to an important question: to what extent does modern medicine reflect the capitalist world? What effect do things such as privatisation have on the care we deliver? In falling standards and mixed up priorities are we already seeing the repercussions of neoliberal tools, such as private finance initiatives (PFI), in the NHS?

And if it is to be expected that medicine will follow the contours of the society around it, then surely that is all the more reason for doctors themselves to question their culture, to think and act beyond the narrow confines of their profession, and to help shape that society for the benefit of their patients?

There was a time when medicine was a calling and not a trade: an art, as well as a science. Cultures of sociality, solidarity, and service are all but gone in the world of modern medicine.

Health is much more than curing disease. How can we go about reclaiming a culture of care? How does the health profession heal itself? If it’s not the market that should shape medical culture, then which forces should it be? Culture is shared by those in it: women, people of colour, the working class, minorities—until medicine’s composition changes, we can arguably only expect more of the same.

It’s time for all of us—both those within and those acted on by it—to shake health up. We must take the opportunity now to refashion our institutions, culture, and conversations to transform the possibilities for all patients—whether it’s at the beginning or end of their lives.