The doctor patient relationship can seem an abstract concept until you actually enter into one. Then it becomes really important. Like any relationship, it needs skill and sound thinking on both sides to make the best decisions and to navigate the increasing complex healthcare landscape.
This is even more important with the struggles many now have in getting the right care at the right time — the NHS is not providing the level of care doctors would hope for and increasing demands have not been matched with the increase in resources needed to cope. Doctors too are struggling, tending to vote with their feet and leave the NHS to preserve their minds and pay off their debts. Patient frustration is matched by those of struggling healthcare staff.
Though in some ways damaged by the pandemic levels of trust in doctors remains high. In the USA, a mere 30% of people now have confidence in medical leaders, with some literally coming to hate public health experts (especially the demonised Dr Tony Fauci), and the many others who have done their variable best to lead the pandemic response. In the UK, 7% of people now do not feel trust in their GP— this is a significant number and has increased with time.
I have come to realise, both when reflecting on my own career and in terms of personal experience of health problems that trust between the doctor and patient is a vital component of getting the best out of healthcare. Trust does not mean blindly agreeing with everything the doctor might say, but it does imply mutual respect and an understanding that doctors and nurses are on your side, acting in your best interest and open to reasoned discussion. Trust in doctors in now under threat.
The new age of information is playing a part here. It has changed everything, both for better and the worse. When diagnosed with an illness, you can now pretty rapidly become your own expert. This expertise, based as it is on your lived experience, is increasingly recognised and valued in healthcare, even if busy doctors may not always have the time to explore it as fully as they might like.
Your experience of living with a conditon can ideally dovetail with the doctors wider experience of other patients with the condition, broader knowledge and ability to guide you through the health care system. Poor information leads to poor decisions and poor health outcomes.
THE PATIENT-DOCTOR-COMPUTER RELATIONSHIP
From the key textbooks and paper journals which accompanied me as a young doctor, my working life was transformed by IT. Before I retired, my office was more or less paper free. Two computer screens, both packed with information about you, your condition, all the relevant research, e-books, my structured learning, as well as burgeoning protocols and guidelines regarding management – all one or two clicks away.
At times the consultation seemed to have become a three way interaction between the patient, myself and the world of information. Working well, it enhanced efficiency, enabled better informed decisions and avoided errors. The downside is the feeling that your doctor is looking at the screen too much. However, this was also a traditional complaint of doctors who ‘had their heads in the notes’ instead of eye contact with the patient, but for many consultations, listening carefully is just the start.
THE INTERNET- PATIENT RELATIONSHIP
With every new symptom and concern there is so much we can discover before we pick up the phone to see a doctor. We have a responsibility to ourselves, our families, freinds and society to inform ourselves to the best of our variable ability. I have found myself that being a ‘good patient’ involves certain skills. With a struggling health sector, it is wise to be properly informed.
Thankfully, there is plenty of accurate and helpful information on line, but also an avalanche of absolute rubbish, some dangerous. Sorting the wheat from the chaff, in other words, critical thinking, has become and important skill for everyone, yet it is not taught in schools, or even universities.
Poorly used, online information can mislead you, misinform you, cost you money and steal that critical thing when facing worrying health problems — time. So how to avoid pitfalls?
WHERE TO GO
In the UK, the NHS website is a good start, trustworthy, brief and linked into other services, similiarly the NIH in the USA. Wikipedia is useful to expand further and it is easy to follow up their references for further detail. I commend it.
There are specific charities too with useful information and first hand accounts. In the case of my efforts to live with Multiple Sclerosis, the MS Society, Overcoming MS, Shift.MS, and blogs from those like Prof Giovanonni, who have dedicated their lives to trying to get the bottom of MS and improve its management.
Internet searches can display many different sites too choose from, with variable quality, some frankly bonkers, and many seeking to make a fortune by manipulating the concerns typed into the search engine. Take care!
AVOID THOSE CASHING IN ON SUFFERING
Particularly in the US, where shows like Joe Rogan, Jimmy Dore, (who tells his viewers that Fauci has killed more people than Hitler!!) and way too many others have proliferated both in terms of their reach and their profitability. Simply put, they have cashed in on the pandemic.
They combine with a network of alternative health cranks like Joe Mercola and RFK’s Children’s Health Defence, Americas frontline Doctors ans others to spread antivaccine pseudoscience to millions of believing followers who see themselves or others as victims of corruption.
This is damaging the health of their nation as well as lining their pockets by creating suspicion and fear which erodes trust in healthcare. There are doctors too who are cashing in, and able to get away with combining antivaccine misinformation with the sale of ‘detoxes’ and other confidence tricks due to the lax, feeble regulatory system in the US. They take grains of truth and turn them into mountains of suspicion, fear anxiety and hatred.
We are not exempt over here. John Campbell is a former nurse educator whose output of poorly analysed science is high in appeal, but lacking the editorial control that might rein in his many mistakes, international or otherwise. UK doctors who openly create distrust and fear are more likely to be hauled in, though we are not without those who seek alternative careers in the media and online, where sensible, evidence based advice sells poorly and antivaccine rants create the clicks that brings ‘success’.
BAD INFORMATION CAN KILL
So critical thinking is needed to see the wood as well as the trees when faced with conflicting evidence. Check your source. You may see a ‘respectable’ author publish surprising stuff in a ‘respectable’ journal. Check out who they are, what research have they done before? Check their Twitter feed or FB posts which can be surprisingly revealing as far as axes to grind are concerned. What looks like a respectable journal might just be one of the grwoing number of “paper mills” which will publish anything for a fee and whose peer reviewers might even be chosen by the author themselves.
Remember that anything you see on You Tube and other social media outlets is monetised — the more clicks, the more cash and that sensationalism and outrage makes money. Despite claims of censorship, You Tube and other have done way too little to ensure quality. Are they trying to sell you anything?
Look at the references they use to embellish their claims. Are they from creditable sources or just more opinions from fellow travellers? If from reasonable sources, check them out and see if they actually support the claims being made — they often don’t. Be skeptical. Poor information can lead to poor decisions, suffering, and critical delays in getting help.
I regularly follow Susan Levenstein (“Stethoscope on Rome”) for her excellent and well researched blogs on all matters pandemic. Dan Wilson’s (“Debunk the Funk”) Susan Oliver’s, (“Back to the Science”) are sources I trust. They put time and energy into some serious debunking — before you believe wild conspiratorial claims. Do check them out.
DON’T GET SCAMMED
Then we come to SCAM. “So Called Alternative Medicine”. The worlds first Professor of Complementary medicine, Prof Edzard Ernst, writes a daily blog regarding the dangers of alternative medicine, riddled as it is with bad science, outlandish claims, pseudoscience and quackery which leads to direct harm as well as delaying appropriate care. If you are thinking of using alternative health practitioners, then click here, and use his search engine before spending a penny or delaying getting genuine help.
So called Alternative Medicine practitioners do have their place when offering a listening ear, or something pleasant such as massage; but are an unregulated minefield when it comes to diagnosis and effective treatment for an illness.
AVOID DIVERSIONS
Understanding too of the problems and shortfalls in the way we do things; there are so many widening fault lines in society, but appreciating them also gives context. For instance, “Big Pharma” are demonised by a section of the population, partly due to some pretty terrible corporate behaviours and profiteering, yet for huge numbers of people provide drugs and products which transform the experience of life for the better. For me most notably offering vast improvements in the experience of living with MS.
I find it hard to imagine a world without inhalers for asthma, insulin for people with diabetes, thyroid replacements for those who can’t produce their own — this list of helpful “Big Pharma” products could go on literally for pages. This is not to say there are not many problems with industry, but basically, life would be very hard without their products and in terms of harm done, they lag well behind the long list of planet destroying corporations who are content to cause harm for profit.
Finally
Looking back, it was a privilege to have the trust of my patients. Those who did not feel trust in my case had the option of seeking help from elsewhere as without that trust offering quality care would be at best, complicated. This would thankfully not happen often, yet is an increasing problem for those younger generations providing healthcare now.
That is why I have written so many blogs on misinformation, gibberish, bullshit and nonsense on line. It is both fascinating and horrible.
With the internet replacing traditional media, individuals groups and businesses are distorting data, misrepresenting science and directly causing suspicion and distrust of doctors, public health and the regulatory authorities on which so much depends. They next pandemic will be trickier because of this.
So take care and I hope his helps.
Thanks for this excellent article, Colin! It’s so informing and helpful, and I, for one, would have died as a child without “BigPharma”!