Medical advocacy

The word ‘témoignage’ comes from the French verb ‘temoigner,’ which literally translates as ‘to witness’.

Témoignage – or witnessing – is simply the act of being willing to speak out about what we see happening in front of us. Medecins sans Frontieres. (MSF/ Doctors without Borders)

From 2003-4 I spent 8 months as a volunteer with MSF in North West Afghanistan working in a small village helping to support local Afghan doctors and a volunteer midwife. One of the reasons I chose to work with MSF was because of their commitment to ‘temoinage’. MSF was set up by journalists who then encouraged doctors to join them.

One of the most famous doctors to speak out about what they saw was Rudolf Virchow. More than a century before MSF began work, the German doctor, pathologist and anthropologist studied an epidemic of typhus. On the face of it, typhus was a simple case of disease caused by a bacteria and spread by lice. Amongst the different risk factors for infection, and ultimately death, Virchow identified malnutrition, lack of sanitation, poor personal hygiene, illiteracy, alcoholism, sleeping habits, over-crowding, poor housing, lack of industrial and agricultural development, an unjust system of taxation and an insidious relationship between church and state. Virchow went on to draw his conclusions,

All the relevant factors could only be evaluated and planned for by correlating the biological, behavioural and social characteristics of the host as well as the habitat.

Virchow was attacked for his sceptical attitude to the prevailing ‘one-cause, one disease’ ideas of his time as he ‘again and again expounded the theory of the multi-causal relationship between man and disease.’

So strong are the links between deprivation and ill-health, that those who live at society’s margins are most frequently in need of medical assistance and consequently medical professionals have exceptional exposure to them. This is as true for Hackney in East London, as it is for Kushk e Khona in Northwest Afghanistan. My days at work are full of caring for the impoverished, abused and lonely, mentally ill, addicted, illiterate and poorly nourished. In Hackney we still see 19th century diseases like rickets, measles and tuberculosis, and 40% of children are obese, the modern version of malnutrition.

Today, the epidemiologist Sir Michael Marmot continues to draw our attention to the social determinants of health. In ‘Fair Society, Healthy Lives’ he shows that differences in health and life-expectancy follow a social gradient.

Recognising this, it becomes clear that while the poorest are seriously disadvantaged in health terms, so is everyone except the wealthiest, highest social class.

The special role of General Practitioners

General Practice (Family Practice in the US) differs from hospital medicine in some important ways. Patients come to us when they sense that something is wrong; whether it is tiredness or agitation, weight gain or loss, confusion or obsession, memories lost or memories that won’t go away, unexplained tearfulness or the inability to face the day, pain or numbness, loneliness, hunger or homelessness. In order to discover our patients’ symptoms we help them tell their stories.

Traditionally doctors have been taught to listen for and document a medical history, a pattern of symptoms that match the progression of a disease. We tend to filter extraneous information once we begin to recognise a familiar, objective, disease pattern take shape. The patient’s own story is cast aside. In my role as a tutor for medical students and new GPs I teach them to help patients to tell their own stories, In the context of a patient’s personal story or narrative, the same symptom can have a profoundly different significance. The act of active listening is the art of medicine; gently exploring and uncovering a patient’s own story, without imposing our own structure, sometimes in a single consultation, but more often over several meetings that in some cases may continue for years.

“I hope you don’t mind me telling you this, but you’re the only normal person I know, doctor”

It is difficult to give sufficient emphasis to the extent of loneliness and social isolation amongst my patients. Many suffer disabling anxiety and panic attacks and cannot leave their homes for days or even weeks at a time; some are elderly and disabled and only see a carer for a few minutes at a time 2 or 3 times a day; some drink alcohol alone at home all day every day, some with learning difficulties and psychotic illnesses seem to spend all their days pacing the streets talking to themselves. Many adults who need to see me week after week suffer from eating disorders, unexplained abdominal pains and headaches, back pain and breathlessness amid constant fears of cancer. Such symptoms are real, and in searching for explanations, patients may find fears of cancer, which they don’t have, less frightening than fears of their own stories, which they do have. If as a child the only way you can complain about being sad or frightened and be taken seriously, is to have stomach ache or a headache, then this is how you learn to describe your emotional world. A history of childhood sexual and physical abuse is so common amongst my patients that I see the victims every week. Other patients may have a history of domestic violence or torture, especially those from central African countries or Turkey. The added pressures of poverty and financial insecurity, unemployment and unemployability, illiteracy and isolation bring these patients not only to my surgery but also to hospital for themselves, their children and other family members when their distress becomes too much to contain themselves.

Their symptoms are real, but medicine is clearly not enough to explain or alleviate their suffering.

This is why the recent General Practice at the Deep End research is so important. Information from general practitioners working in the 100 most deprived general practices in Scotland has been gathered to show the impact of austerity on their patients and they share my experience in London,

I observe this again and again that I cannot address medical issues as I have to deal with the patient’s agenda first, which is getting money to feed and heat.

My patients’ isolation is the sharp end of the modern cult of individualism which has been undermining social solidarity and widening social inequalities for my entire life (I was born in 1971) Another aspect of individualism is the focus on trying to change patients’ personal behaviour rather than the social circumstances that lead to them to behave the way they do.

If you live the whole of your life in poverty, boredom and frustration you are unlikely to be willing to change your lifestyle to prolong that life; indeed you may not welcome the idea of a longer life.

As one of my patients said to me,

Doctor, it stinks round here, I bet you’ve never smoked in the nice places you’ve lived.

Against advocacy.

Historically the attitude of the medical profession towards advocacy and social justice has ranged from cool to bitterly hostile. Vested interests have also made doctors poor social advocates. In the UK, we are tainted by the opposition of the British Medical Association to the foundation of the NHS in 1948. Conservative opposition was even more entrenched, a fact they conveniently forget. The opposition was much less that of doctors against patients, than that of rich against poor. Many doctors were in favour of the NHS, sharing the both the experiences and values of midwife, Margaret Grieve who said, “I was for the change because I had done my training in Glasgow where there were very poor people, and mothers who had no antenatal care”.

There are some who hold strong objections to doctors taking on advocacy roles on the grounds that, ‘Political advocacy, if it is a virtue, is a civic virtue rather than a professional one‘. According to this reasoning, doctors have professional duties that follow from their specialist training, and hence, ‘medical engagement with politics will displace real medical work, which is the only contribution of medical professionals, as such, to societal betterment’.

I can see where the author is coming from, after all, most medical students come from privileged backgrounds, have had limited exposure to poverty and are taught little about the social determinants of health and even less about advocacy. As one medical student wrote, “What is … disturbing … is precisely how little politicization and social consciousness it takes for someone in the medical field (even a student) to fall outside the professional mainstream.” It is as if Virchow’s insights have been entirely forgotten, perhaps because of a ‘hidden’ or informal curriculum of medicine, one that not only teaches students to value hierarchy but also to refrain from social or institutional critique.

Advocacy in action

Most doctors I know are GPs working in east London. They are all very aware of the social determinants of health, but feel powerless to have influence much beyond their individual patients. Part of the problem is that the training of doctors and the culture of medicine is not geared towards the social determinants of health, but this is beginning to change. From a Global Consensus on Social Accountability for Medical Schools, the Lancet Commission on Medical Education and the BMA report on the Social Determinants of Health to the Bromley by Bow Centre and the inspiring actions of individuals like Gabriel Scally, Bernard Lown , Wendy Savage and Clive Peedell there appears to be a growing consciousness, if not yet a consensus that medical professionals ought to be both learning more and doing more about social accountability and advocacy.

I believe that ‘professionalism is the basis of medicine’s contract with society’. Our training and our wages are almost entirely paid for out of taxation and so we have a duty to ensure a healthy society. Rudolf Virchow was only 27 years of age when he studied the Typhus epidemic and he spent the rest of his life fighting for social reforms. He is best remembered for saying,

Medicine is a social science, and politics is nothing else but medicine on a large scale. Medicine, as a social science, as the science of human beings, has the obligation to point out problems and to attempt their theoretical solution: the politician, the practical anthropologist, must find the means for their actual solution… The physicians are the natural attorneys of the poor, and social problems fall to a large extent within their jurisdiction.

The inspirational essay, To Isiah, by Donald Berwick is a call to doctors young and old to take on this role today,

And your voice—every one—can be loud, and forceful, and confident, and your voice will be trusted . . .  please use it.

References.

Why doctors should do advocacy. US article responding to NRA suggestion that doctors should voice an opinion on gun control 2018.

Working for Health Equity: The Role of Health Professionals. Marmot report 2013

Francis Interview: What doctors must learn from my report. BMJ March 2013

“A consultant has a personal professional responsibility for the welfare of their patient, not just their liver and appendix or whatever, and if that consultant turns up [on the ward] and sees that the care being given to that patient is unsatisfactory then they have to do something about it. I suspect many do, but it’s a regrettable fact that some consultants at Stafford cannot have been doing that otherwise these things would have been spotted and stopped.”

“It’s vital that GPs remember that their responsibility to their patient doesn’t end when they go into hospital. They need to be more systematic about how they gather information because, after all, they are meant to advise patients on where is the best place to go for their treatment. The old fashioned way of phoning up their friend the consultant and having a word is just not good enough.”

Doctors should turn politics into therapeutics, and together, the profession should become a politically active agent. http://www.bmj.com/content/345/bmj.e6894?sso=

Inspiration:

To Isiah. Donald Berwick http://jama.jamanetwork.com/article.aspx?articleid=1199158

Updating the Hippocratic Oath to include medicine’s social contract: http://onlinelibrary.wiley.com/doi/10.1111/medu.12277/abstract

Expectations and Obligations: professionalism and medicine’s
social contract with society Cruess and Cruess 2008

Physician-Citizens: Public roles and professional oblications JAMA 2004

The Medical Profession as a Moral Community: Pelligrino 1990

Bernard Lown. Social responsibility of physicians http://bernardlown.wordpress.com/2012/04/29/social-responsibility-of-physicians/

Doctor as scientist, healer, magician, business entrepreneur, small shopkeeper, or assembly line worker — which is it? (Essay 30) http://bernardlown.wordpress.com/2012/06/26/doctor-as-scien/

A Note to My Younger Colleagues, Be Brave. Harlan M. Krumholz Circulation: Cardiovascular Quality and Outcomes. 2012; 5: 245-246 doi: 10.1161/​CIRCOUTCOMES.112.966473 http://circoutcomes.ahajournals.org/content/5/3/245.full

Crocodile tears for health inequality. Iona Heath http://www.bmj.com/content/340/bmj.c2970?variant=full-text&sso=

Social Conditions as Fundamental Causes of Diseases. Classic 1995 paper from Link and Phelan (pdf)

Moving Upstream: How Interventions that Address the Social Determinants of Health can Improve Health and Reduce Disparities http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3431152/

What is medical advocacy?

Physician Advocacy. What is it & how do we do it? http://journals.lww.com/academicmedicine/Fulltext/2010/01000/Perspective__Physician_Advocacy__What_Is_It_and.22.aspx

On Physician Advocacy. Academic Medicine. http://journals.lww.com/academicmedicine/Fulltext/2011/09000/On_Physician_Advocacy.1.aspx

The Physician as Health Advocate:  Translating the Quest for Social Responsibility Into Medical Education and Practice http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1380705/

Advocacy for Public Health, A Primer http://jech.bmj.com/content/58/5/361.full

The medical ethos and social responsibility in medicine http://www.ncbi.nlm.nih.gov/pubmed/11405593

Advocacy in a historical context

Rudolf Virchow and Social Medicine in Historical Perspective http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1033391/

‘Decipio’; Examining Virchow in the context of modern ‘democracy’ http://www.ncbi.nlm.nih.gov/pubmed/22361438

Medical Ethics and Education for Social Responsibility Sigerist http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2595890/

The Pleasures and Perils of Prophetic advocacy Sigerist http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1380705/
How medicine became a growth business http://www.healthbeatblog.com/2011/05/how-medicine-became-a-growth-business-/

Against advocacy

Perspective: Medical professionalism and medical education should not involve commitments to political advocacy. http://www.ncbi.nlm.nih.gov/pubmed/21248605

Clinical Loyalties and the social purposes of medicine http://jama.jamanetwork.com/article.aspx?articleid=188374

 Statements

Towards a New Politics of Health http://www.pohg.org.uk/support/downloads/pohg-paper1.pdf

Declaration of professional responsibility. Medicine’s social contract with humanity http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/declaration-professional-responsibility.page AMA

Medical Education and Social Responsibility

Medical Education for Social Justice. Paulo Friere Revisited http://www.springerlink.com/content/7j1rv333170671j2/

Global Consensus for Social Accountablity of Medical Schools http://healthsocialaccountability.org/

Medical Education for the 21st Century. Lancet Commission http://www.thelancet.com/commissions/education-of-health-professionals

Social accountability in health professional’s training http://hospitalmedicine.ucsf.edu/downloads/social_accountability_in_health_professionals_training_greysen.pdf

Advocacy training and social accountability of health professionals http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2961840-0/fulltext

Social Accountability: Medical Education’s Boldest Challenge http://www.ncbi.nlm.nih.gov/pubmed/21483336

Advocacy in public health: roles and challenges. S. Chapman http://ije.oxfordjournals.org/content/30/6/1226.short

Power to advocate for health doi: 10.1370/afm.1099 Ann Fam Med March 1, 2010 vol. 8 no. 2 100-107  http://www.annfammed.org/content/8/2/100.full

Doctors and patients

Doctoring as Leadership. The Power to Heal Project Muse http://muse.jhu.edu/journals/pbm/summary/v049/49.3schei.html

Understanding healing relationships in primary care doi: 10.1370/afm.860 Ann Fam Med July 1, 2008 vol. 6 no. 4 315-322  http://annfammed.org/content/6/4/315.full

Is anxiety over-diagnosed? Overlooking socioeconomic conditions and jumping to a psychiatric diagnosis can prevent us from addressing the real issues behind anxiety. Atlantic Health

Collection via Academic Medicine http://journals.lww.com/academicmedicine/pages/collectiondetails.aspx?TopicalCollectionId=29