How to manage patient empowerment
Maintain your professional balance and don't be manipulated
Patient empowerment
The growth of social media in the last couple of decades has massively amplified and spread underlying beliefs and trends in society.
Notable amongst the social trends being amplified is the demand for the freedom to decide for oneself.
This freedom applied to the medical consultation is what I mean by patient empowerment.
Reflecting that trend social policy has shifted toward encouragement of patients to express opinions about treatments and to become involved in decisions about their treatment. Increasingly this is also being reflected in the UK laws of consent to treatment.
This change in custom and law has had a considerable influence on the way doctors in the UK practise medicine. Most-notably the all–powerful doctor has become a personality under extreme pressure, reflected in the fact that 75% of cases referred to the UK Medical Practitioners Tribunal Service (MPTS) in 2016 involved misconduct. Bullying and harrassment by doctors (usually working in hospitals) are likely to have played a part in some of those MPTS referrals.
Only the most- serious cases reach the MPTS; a far greater number of cases of misconduct are dealt with in-house by hospital managers.
Medical teamwork has also lowered the profile of the individual physician. However the skills, experience and judgement of each team member remain crucial to a well-functioning team.
In step with the rise of medical teamwork and the decline of the autocratic doctor has come critical review, greater than in previous years, of the performance of hospitals, of individual doctors and of the outcomes of the treatments that they offer.
I believe that all of these have contributed to an improvement in the quality of medical care in the UK in recent decades, although resources and staffing levels (certainly of nurses) that are inadequate relative to workload may have offset some of this improvement.
However social change is never embraced by everyone. Patient empowerment is no exception. Some doctors fail to engage with patient empowerment and not all patients want to be empowered – some may still want the doctor to take decisions on their behalf – but their families often disagree!
Doctors must thus undertake a difficult balancing act, empowering their patients, but equally being able to recognise when they need to help their patient to make a decision about a course of action.
Helping the patient who remains undecided about treatment
As a physician you may need to assist patients when they remain uncertain about taking a particular treatment that you have explained to them.
In such cases I try to defer the decision about treatment in order to allow the patient a chance to think about the implications of the decision and to discuss the matter with people whose opinions they value.
An obvious exception is when a cancer is suspected or when it is likely that a delay in treatment carries a risk of serious disease complications.
In such cases unless there is some compelling reason to the contrary I usually advise the patient to take the treatment after explaining the risks, benefits and alternatives on offer including no treatment. This is part of the informed consent process that I describe in several of my posts.
Dealing with manipulative behaviour by the patient
Empowerment should not include the power to manipulate.
As a physician you have to be able to distinguish patients who rightly feel empowered to express their views and requirements, from those who are trying to manipulate you.
By manipulative behaviour in the clinical context I mean conduct by patients, their friends or relatives that is intended to bully, shame or otherwise force the healthcare professional into doing their bidding.
Some people have developed strongly persuasive patterns of behaviour over the course of their lives which may generally serve them well in various everyday encounters and may not even be regarded as manipulative by their associates or by society at large.
In the clinical situation however attempts by patients and relatives to over-vigorously persuade the doctor may not only prove counterproductive and an obstacle to cooperation, but may also cause both patient and doctor to behave in ways that can destroy mutual trust and thus make an effective clinical relationship impossible.
To prevent this, doctors need to develop awareness of when they are being manipulated. They also need to know what to do about it.
Use negotiation to deal with difficult or unreasonable requests
In recent years I have come to regard every request from a patient that does not have a straightforward solution, as the opening offer in a negotiation.
In such cases I find it helpful to ask myself “what can I offer the patient that doesn’t compromise their safety or my need to be honest with them?”
To get the tone of the negotiation right I find it useful to try (i) to put myself in the shoes of the patient and (ii) to ensure that no patient leaves the consultation empty-handed.
That way the patient can see that you are trying to help them. This will amply repay the little time and effort involved.
If I feel that the patient’s request is reasonable I will agree to it. If not I will suggest alternatives.
I then continue the (usually brief) process of back-and-forth negotiation until the patient and I can agree on the way ahead.
In every encounter I always try to put at the front of my mind the need to act in the patient’s best interests.
To do this means that sometimes I have had to decline a patient or relative’s request. However as you may already have discovered, if you refuse bluntly to do what you are being told to do by the patient, you may provoke a strong emotional reaction that takes your mind off the task at hand. I thus suggest that you always try to have an alternative to offer.
Achieving a successful result without offending the patient can sometimes be a supreme test of one’s diplomatic skills, judgement and patience. Get it wrong and you are likely to receive a time- and morale-sapping complaint.
Minor degrees of manipulation
Some manipulation by patients during consultations is not unusual and may not be regarded by many physicians as manipulative behaviour at all.
A common scenario is when the patient expects the doctor to undertake investigations for a problem that is in a field allied to the doctor’s speciality but not strictly part of the problem for which they are attending. Indeed I would not regard that as manipulative behaviour at all.
For example as a rheumatologist dealing mainly with the diagnosis and treatment of inflammatory joint and spinal disease I have often been referred patients with back pain for exclusion of ankylosing spondylitis in whom it is clear from the history and examination that the diagnosis almost certainly is not inflammatory back pain.
In such cases it would be easy to say simply that “this is not ankylosing spondylitis” and send the patient back to their general (family) practitioner.
Indeed some insurance based medical systems require the doctor to do exactly that, or to seek the insurer’s permission to investigate further.
However the patient often has a reasonable expectation that their problem will be dealt with at that consultation rather than go through the whole process again. They may even demand that.
To avoid conflict with the patient, and as part of the process of exclusion of ankylosing spondylitis, it is thus wise to investigate appropriately with an MRI scan of the spine (if not already done) or to refer the patient on to a specialist back pain clinic if that is likely to be helpful to the patient. That way you have helped the patient and their GP at little cost to yourself.
The next step up the scale of manipulation
This occurs when the patient introduces a completely unrelated problem to the consultation.
After discussion with the patient you begin to think that for some reason that is not clear to you, their family practitioner (GP) may have decided not to investigate or treat the unrelated problem further.
This is when things may become difficult. Problems in this category (such as those I describe below) will cause you to expend time and energy that you may feel would be better consumed on more important matters. However you will find that the effort is worth it in terms of trouble prevented.
What if the patient asks you to do something that their GP has refused to do?
A variant on the scenario of being asked to take on an unrelated problem occurs when the patient requests a medical certificate from their GP and the request is declined, so they ask the hospital specialist.
If it is clear after assessing the patient and after an explanation from the GP that the GP’s reluctance to take the matter further or to issue a certificate is reasonable, then you have to explain diplomatically to the patient the reasons why you think that the GP is correct.
That may provoke dissatisfaction because the patient is naturally likely to regard your refusal to supply the certificate as not being in their interest!
For that reason you should document all such discussions carefully, preferably in a letter to the patient’s GP.
Equally if after talking with the patient you feel that the GP might be wrong, you should find out more from the GP to get their side of the story before you go any further.
That task should not be delegated and often takes time that few practitioners can afford.
Don’t let the patient persuade you to take on a GP role!
To complicate matters, in the NHS there are shared care agreements between secondary care organisations and local GPs about ongoing drug treatment. Clinical Commissioning Groups (CCGs) of GPs will not pay hospitals for services that are not covered by those agreements.
The physician thus has to bear in mind that they may be responsible for continuing, with repeat prescriptions, any treatment that they initiate if that treatment is given against the GP’s wishes or if the treatment breaches commissioning agreements.
In that situation the hospital specialist has in effect become the patient’s GP for that problem and everything associated with it.
However persuasive the patient, the hospital doctor should avoid taking on the role of the patient’s GP except where the drug being prescribed is on the Red or Amber List of the local CCG’s Traffic Light System of drug prescribing.
I explain to the patient why I am not able to prescribe their treatment and I discuss with them the possible reasons for the GP’s reluctance to treat or investigate, suggesting ways in which the patient might reopen the matter with their GP and making myself available for discussion with the GP to help to resolve the issue.
I avoid taking sides in the argument. I do not advise the patient to see another GP in the practice. Most patients will anyway recognise without prompting when they need to change their doctor.
Only once, long ago, have I very reluctantly had to advise a patient to find another practice or another rheumatology department when for contractual reasons all the GPs in their practice refused point-blank to undertake the blood tests required for monitoring of disease–modifying anti rheumatoid drugs (DMARDs) and our rheumatology department was not contracted to do so.
In that instance there was really no other way to continue the safe prescription of that patient’s DMARDs.
In such cases I have followed up my advice to the patient with a phone call, email or letter to the patient’s GP explaining the situation so that it is clear that I am not “going behind their back”.
Responding to demands for inappropriate treatment
A physician comes under great pressure when the patient demands a treatment that the physician feels is inappropriate.
In such cases I make clear that I feel that the treatment that the patient wants is inappropriate. However I always add that in order to ensure that I am not denying the patient an opportunity to have an appropriate treatment, I would like to offer them a referral to another specialist for a second opinion.
An example of this that arises in my speciality and in several others, is the use of antibiotic treatment for Lyme Disease in a patient with chronic symptoms who has negative Lyme antibody tests performed in an NHS specialist laboratory.
The potential for conflict arises if the patient expects to receive antibiotic treatment for Lyme Disease whereas the negative result from the NHS laboratory suggests that the patient is unlikely to have Lyme Disease as the cause of their longstanding symptoms.
To complicate matters such patients will sometimes bring to the consultation a positive Lyme Disease test result from a private laboratory (which may be in another country) to back up their assertion that they have Lyme Disease.
This is a particularly fraught, disputed area in which I always seek the advice of an infectious diseases specialist if the patient or their GP expects antibiotic treatment.
You should never find yourself saying that “I gave the patient treatment against my better judgement”.
At first thought, it might seem easier simply to give the patient who believes that they have Lyme Disease a prescription for an antibiotic. However if you believe that the patient has little hope of benefiting from the antibiotic except through a placebo effect, the only possible direct effect that they can expect from an antibiotic in that situation is an unwanted outcome such as a severe allergic reaction or antibiotic-associated colitis.
Also bear in mind that if you treat the patient with chronic symptoms and negative Lyme Disease tests with a course of antibiotics you have to think about what to do if the patient does not improve after that. The patient would probably then expect to receive a course of another antibiotic, or they might ask to go onto long-term treatment with the same antibiotic or some other treatment of dubious value.
That would mean your open-ended cooperation in an enterprise in which you had no confidence.
Placebo treatment of conditions such as antibody-negative Lyme Disease
The ethics of placebo treatment are complex, but I believe that in most circumstances it is dishonest to give a patient treatment which you believe to be ineffective, but which the patient believes will be effective.
If you decide to use a medication as a placebo then I believe that you should explain to the patient that they are receiving a placebo.
However very few patients who believe that they are suffering from an infection will be impressed by the use of a placebo!
In order to resolve these difficulties it is better to refer the patient at an early stage to a specialist in the field rather than to enter into an open-ended dispute with the patient or their GP about whether or not the patient should receive an antibiotic despite the negative “official” test for Lyme Disease.
As I mentioned in an earlier paragraph in this post, the same approach applies to other conditions where the patient continues to believe that they require treatment for a disease that you feel sure they do not have.
Make sure that the doctor you choose as your second opinion is a recognised specialist in the field
For any second opinion in a situation where you and you patient disagree about the diagnosis, you need to refer the patient to a practitioner who is recognised as a specialist in the condition that the patient believes they are suffering. That specialist will be able to go through the patient’s problem in detail and hopefully to settle the issue once and for all.
To refer the patient to another generalist will create further confusion and uncertainty for the patient. It is for example counterproductive to refer a patient for an opinion about treatment of a liver disease to a gastroenterologist who does not have a hepatology interest.
In my next post I plan to discuss conflicts of interest and deception syndromes