Archive for category Patient-Centered Care
A couple of things happened this week that inspired me to write.
My little girl got an infection. Oh, the irony. She was quite cute about it though. It started out as a mosquito bite or something like that – it was itching her at any rate. Little tyke was trying to put steroid cream on it to stop the itching. It probably would have worked if she hadn’t picked up the toothpaste instead. (She’s only 4, by the way)
So a day or two later and she’s got a red, painful, spreading infection on the back of her foot and I’m cajoling her to take oral keflex (first generation cephalosporin, good for group A strep and staph). She’s got a fever, vomiting, diarrhea…and we start worrying whether it’s an antibiotic side effect or the infection. It quickly becomes clear though that it’s the infection as she keeps down more of the keflex and everything starts to heal up.
As we sat brushing the hair of her My Little Ponies a day or so later she asked me “how did the infection get in there?” I pointed out the little bug bite and explained that it was a hole in her skin that let the bacteria in. “Oh, ” she said, “that’s dangerous.” And she went back to playing.
But yes, yes it was. Untreated staph and strep infections land kids in the hospital all the time. So was this a benign minor bug bite, or did I manage to avert catastrophic sepsis in my offspring?
This morning, quite by chance, my mum called for a chat. She asked me what I was doing – I explained I had to go into work for a consult. “Oh dear, ” she said, “is it serious?”
I caught myself just before I laughed out loud and said “No, not really” when I remembered what happened to my daughter this week. Just what was a serious infection anyway? Doesn’t that depend on your point of view as much as the organism, site of infection, and antibiotic resistance pattern? What is, to me, a relatively routine consultation, is at it’s minimum a human being whose body has been invaded by a microorganism which is attacking and destroying it from the inside! This is someone’s child whose health is not just in jeopardy but whose health has already been compromised by the fact that there is an infection there.
There are social implications to an infection like that – the stress and discomfort of a hospitalization, time away from family, and time off from school and work. This is a Life Event that will never, ever, be forgotten. For just a second, imagine yourself or a family member suddenly admitted to hospital and requiring invasive procedures for an uncertain cause. For some of my readers, I know they don’t have to imagine!
So we as clinicians need to remind ourselves of this from time to time. We must be wary of being complacent in what we see and mindful of how it’s perceived to the patient and their family. If we are confident in what we’re dealing with it behoves us to explain to patients and families why we think the treatment will work and how we expect things to go. Just because it isn’t end-stage cancer doesn’t mean we should ignore the same rules of breaking bad news – explain with clarification, give yourself time, give them time, allow for questions, provide reassurance without false hope and set expectations…there’s a list somewhere. Don’t pooh-pooh “routine” questions, because for that person they’ve never had to ask them before. Don’t belittle their experiences – pain, anxiety, anger. They’re all justified, in the moment, to them.
So to answer my mum’s question, yes – it was a serious situation. But the kid’ll be fine.
Today I had the privilege of being the very first doctor at my hospital to see a patient, document the visit (including a history and exam), write a note to the referring doctor, and complete my billing, using our new electronic medical record.
The build up to our new system has been over many months. Behind the scenes our IT dept has done its leg work, negotiations, analyses, and picked out what it hopes will be the best solution for us moving forward.
To be fair, we’ve had a semi-EMR already – a hodge-podge of software systems that barely talk to each other and seemed to have near-daily issues or crashes. My dictated visit notes were in one system, labs were in another, x rays in yet a third – and paper charts to top it off.
Not any more.
The new system will, eventually, replace all of this – and more. Our scheduling software is integrated, billing is integrated, all results are there alongside (indeed linked to) the visit they were ordered at, and every subspecialty will see what every other speciality does, including inpatient wards and the ER. Prescriptions will be faxed to pharmacies. Patients will be able to access their records online. It will be awesome.
There is, however, a learning curve. It’s not only a new software package after all, in many respects it’s an entirely new way of thinking and operating. For some Docs their work flow will be significantly altered, but it’s a fairly flexible system. It can handle point-and-click note creation, semi-structured “smart texts” which pull in data from the record, free-text typing, dictation – or even a mix of everything. As with most new roll-outs, our patient flow has been cut by 50% during the initial phase to cope with this learning curve. And I’ll freely admit that my first couple of appointments probably took about double the time I would have taken normally.
But let’s step back for a second. Really double the time? Really? What did I accomplish in that time? I completed my normal encounter (ignoring the computer except where necessary – I’m a patient-centered doc after all…) and then caught up with the software afterwards, transferring my scribbled notes into legible text and button toggles. I wrote my note. I wrote a prescription. I sent myself a reminder to call the family with the results of a lab test. I printed off a visit summary to give to the parents. Under the guidance of one of the “Super User” support staff I created a “new communication” to the kid’s pediatrician, linked my visit note, and faxed off a reply to the consultation. I selected a diagnosis and level of service, and with a click closed the encounter down.
I didn’t have to dictate a note.
I didn’t have to edit a note.
The pediatrician didn’t have to wait for me to dictate and edit a note – they had a copy of my recommendations at the office before the patient had left the building.
I didn’t have to flick through billing sheets, sign off on “problems lists” or “medication reconciliation logs”. I was all done with a click of a mouse.
It wasn’t extra time, it was reallocated time, time invested up front that saved me a ton of hassle later on. And as my learning curve moves up and I get faster at pulling down labs, creating smarttexts, macros and shortcuts this little beauty will truly save me time, AND provide better care for the patient.
Were there hiccups today? Of course, it’s a new system, but they had allocated sufficient personnel, expertise, resources and training into minimizing the problems and rapidly producing solutions.
A EMR is a tool – we still need our hands, our eyes, ears, stethoscopes and brains (and hearts…) to practice medicine effectively, but used properly something like this will only enhance what we can accomplish.
We entered a brave new world today, and I was the one to plant my feet in the sand before anyone else. It felt a little crunchy between the toes, but you know – I’ll have time to paddle in the surf later on.
The simple reason why I practice patient-centered care is that it’s better for the patient. But before I go into the details of that, we need to step back a bit.
Firstly, I’ll clarify what patient-centered care isn’t. It isn’t pandering to a patient’s or parent’s wishes and doing whatever they want, as a mere provider of healthcare. That is patient-LED care. I don’t think that’s always a good idea – most people after all have NOT gone through medical school and several years of practical training (something like 20,000 hours of supervised patient-care in my case) in order to make informed decisions on their health. Even though the Internet has leveled the information playing field considerably, you still have to know how to interpret that information in the appropriate context and with the correct background knowledge. There are places where patient-led care does play a role, but it is quite distinct from patient-centered care.
I define patient-centered care as “practicing medicine taking into account the patient’s concerns, expectations and understanding.” You may not find that definition anywhere else put quite like that, but to me it makes sense. It also follows a three-step process of “discover, validate, address” that I iterate through an encounter so that by the end we’re all on the same page.
When I was in medical school I was lucky enough to be asked to pilot a new curriculum element called Preparing for Patients (my sole legacy to Cambridge University is that I was the first to coin the abbreviation PfP – which obviously was no great intellectual feat, but I think worthy of a footnote in the annals of history). I was not yet seeing patients on the wards, and felt quite unprepared having spent much of my work experience during high school in various labs – examining things like different plant species, fiber glass tensile strength and drug purity.
PfP was an intensive program back then, a couple of weeks of daily sessions where we explored our own fears and thoughts on medicine and patients, then got to experience and practice actually talking to patients about their illnesses. The real beauty was in the use of standardized patients: actors and actresses who could give a consistent experience to everyone and respond to questions, even off-line, in character. I got to tell someone they had cancer with a 50% mortality several times before I actually HAD to tell someone they had cancer (which as it happens was at 2am one morning on call as an intern, by myself – that’s deserving of a blog post all for itself…). The experience was invaluable, and provided a toolset of behaviors, questions and actions (71 skills all told) that I could bring into play when I needed them during an encounter. I got to try out this new-fangled curriculum and provide feedback to the course creators on the process and content.
The course itself still stands, albeit in a greatly modified form. It is now a fully integrated part of the Cambridge curriculum, from the first year of pre-clinical science, and those 71 skills are the benchmark by which all Family Medicine (aka General Practice) docs in the UK are assessed for their board exams.
What I learned from that was invaluable – it turns out that talking to patients is a lot more than simply asking questions about their symptoms. Patients are people – they have preconceived ideas about their illness, they have worries, they have ideas on what needs to be done. Sometimes they’re wrong, in which case our job is to educate and reassure (or sometimes not…), but often they’re right and our job is to help get things done. I learned that illness (what a patient experiences) is different from disease (what a doctor treats). A tension headache is an awful illness, but a minor disease that the doc can do little about beyond over the counter pain meds. High blood pressure on the other hand usually has no symptoms whatsoever but serious effects on the body so that we want to treat it. The question was posed – how do you convince someone to treat something that isn’t making them sick right now?
What I also learned was that there was actually research to back up this approach – patient complaints and concerns about medical care (including well over half of all malpractice lawsuits) usually stem from communication failures or unresolved issues. Issues often were unresolved because the doc either didn’t allow the patient to bring it up, or didn’t explain things fully. Patients do not tend to bring up what medics would consider the most important issues first – for all sorts of reasons – and yet they are often cut off early in the rush to get them out the door and see the next one. Something as simple as asking “What are you concerned about?” early on in the encounter can save a ton of time, as you can focus in on what they’re most worried about right away. (Of note, you’ll get different answers asking that than if you ask “what are you worried about?”, which I find fascinating…) Making someone feel at ease is one way to encourage them to talk about embarrassing symptoms or scary possibilities, and there’s an entire skillset devoted to building rapport and trust for precisely this reason.
My general approach is the “discover, validate, address” thing I mentioned earlier. Discovering concerns may be as simple as asking them what they are, but there may also be subtle hints – a family history of cancer, a perseverance on a particular topic or symptom, facial expressions and other body language. You may focus in on something you notice, or use open-ended questions to hear things in their own words. It may be an ongoing process through the encounter, but ideally you get most of it done early on to avoid the “by the way Doc…” question as you’re wrapping up.
Validation isn’t simply agreeing with them – after all, people often get misled or misunderstand things. Validation is acknowledging that from their perspective what they’re feeling about something is entirely appropriate. They may be angry that their prior Doc didn’t treat symptom XYZ, but if, medically, it didn’t need treatment, then their Doc did nothing wrong. But if I can commiserate with them, ask about how it’s affecting their daily life, explain that this kind of symptom isn’t one we can treat – this often goes a long way to fixing the issue.
Addressing a concern may be already covered by just acknowledging its existence, but may require an explanation of why treatment or testing isn’t necessary, or it may require convincing someone to undergo a treatment plan that they’re really not all that keen on! It’s important to offer options – there is always the *option of doing nothing*, even though that’s not necessarily the best option. It’s critical to explain YOUR thinking about something – admit your biases, your own concerns about the patient – they’re more likely to follow through on your recommendations if they know why you’re sending them for blood work, x rays or a cardiac stress test – or asking them to pop a pill every day for the rest of their lives!
What this approach does is help the patient have more control over their medical care than an old-school paternalistic approach, but with more education and understanding than a patient-led approach. If you train doctors to talk to patients this way an amazing thing happens – the patients do better. Improved communication can improve management of diabetes and blood pressure, but also reduce followup visits and tests, lower reported pain levels, and some surprising things like reduced costs in the ICU. Others have already listed the main references. To me this proves two things.
Firstly – there are clearly deficits with doctor-patient communication that need to be and CAN BE addressed.
Secondly – YOU CAN TEACH COMMUNICATION SKILLS. I cannot overemphasize this enough. One of the largest myths in medicine is that you either have a good ‘bedside manner’ or you do not, and if you don’t you’re stuck with it. That simply isn’t true. You CAN teach medics of all levels – from medical students to consultants – new skills and demonstrate changes not just in their behavior, but in their PATIENTS’ behaviors. This is an astonishing finding, and the skills can persist for years. The only thing more astonishing than this finding is that we’ve known about it for decades. Communication skills are being given greater emphasis in medical school these days, finally, but testing is haphazard and unhelpful a lot of the time (feedback 3 weeks after a standardized encounter is nowhere near as helpful as an immediate conversation and a chance to do-over the visit) and training is often limited to lectures rather than structured practice sessions. It is difficult to teach it properly, and it is certainly difficult in an area traditionally taught through lecture format, and which is increasingly moving towards online self-directed educational formats. Carving out a 1-2 hour block of time every week to sit down in small groups with a trained facilitator and one or two trained standardized patients is what’s probably necessary, but I doubt many course organizers think that they’re able to do that – my argument would be that we need to find a way to make it happen, not that we avoid trying because it’s difficult. I am living proof that you can take someone who honestly was pretty socially inept and turn them into someone who can not only practice patient-centered care, but teach it to others. Throughout my residency and fellowship I led a group of child-life specialists, Residents and Attendings in weekly sessions with the pediatric clerkship students teaching a modification of the Calgary Cambridge Guide.
One common criticism about teaching patient centered care or communication skills is that it somehow detracts from the teaching of “real” medicine – the mass of signs, symptoms, risk factors, tests and treatment options that we basically have to rote memorize, as well as the practical application of all that knowledge with real, sick patients. My counter to that is: who says the two are mutually exclusive? You can learn medical facts during the practice sessions, you don’t need to know them beforehand. You can integrate the two aspects of medicine – and in fact you probably need to integrate them or else risk maintaining the mental block between “real” medicine and “communication skills”. Real medicine relies on communication skills to elicit a history and convey a plan – how else do you think this can be achieved? Telepathy? Flash cards? Who says you can’t run a code in a simulation then afterwards have the “breaking bad news” simulation with the manikin’s “relatives”?
And finally, doctors that have a disease-focused approach are more likely to experience patients as “difficult”, and those patients are more likely to have additional (unnecessary?) visits, than if the doctor had a more patient-centered approach. Patient-centered docs are happier docs.
So, to me, effective communication skills are an absolutely integral aspect of patient-centered care, and patient-centered care is a way to dramatically improve patient outcomes. These skills can be taught, and I argue they should be taught if we truly want the best for our patients.
If any readers of this actually do rotate through ID with me, remind me to discuss the process of an encounter as much as the content…I tend to forget!
At a recent ethics conference, where we were debating whether or not to treat a particular patient (medically indicated and life-saving, but against their wishes) a concept came up as one argument to treat. I’m paraphrasing but it went something like this:
“We’re Doctors, and we’ve been trained to treat, so surely we have to do something?”
Now I’m someone who generally abhors people who don’t do their job (or worse, make me do it for them). One of my mantras is JFDI – Just Frickin’ Do It. But this concept was to me a little extreme, and maybe went to the core of several issues in modern medicine. I think it also gives an insight into how Docs think about what they do.
We HAVE been trained to treat. We learn about a disease, how to diagnose it, how to treat it. Wash, rinse and repeat. Graduate. But that is only one part of medicine. As with many things in life, the real art is in knowing when NOT to do anything.
Tsukahara Bokuden was a great Japanese sword master who was challenged to a fight by a drunken youth while on a ferry ride. When asked, the old warrior said that his style was the “No Fight Style”, and when pushed to demonstrate his style he suggested they go to an island to fight, so as not to injure the other passengers. Both men jumped into a boat and rowed over to the island, but when the youth leapt out to fight, Tsukahara rowed the boat back to the ferry, leaving the irate young man on the beach – and in the process saving him from certain death at the hands of the superior swordsman.
Bruce Lee reenacted this scene in his immortal film “Enter the Dragon”. To those mindful enough to appreciate it, this scene was not one of humor, but a deliberate attempt to show that avoidance of conflict is better than beating someone by force.
In medicine the same concept can be applied. “Primum non nocere” – first do no harm – is the idea that a medical intervention may hurt the patient, and we should at the beginning (first) consider whether an intervention may be harmful. We do harm all the time of course, chemotherapy for cancer is the best example where the benefits usually outweigh the cost, but we should always be aware of that premise. In one of my medical exams the marking was such that an incorrect answer cost you marks, whereas doing nothing didn’t affect the score either way. This penalized students who acted without fully knowing what was going on – the same idea.
Of course the decision to not intervene is just that – still a decision – and not always one to be taken lightly. It is different from simply doing nothing. Often the decision to not intervene involves a calculated risk that nothing will go wrong, and one argument for excessive testing and treatment is defensive medicine. Another feature is that patients often expect, either implicitly or explicitly, that something will get done. But that something doesn’t always have to mean a prescription or a lab test. Actually performing a test may do harm – radiation from CT scans may cause future cancer for example, colonoscopy can cause perforation, the discovery of “incidentalomas” (a incidental finding on a scan used to look for something else) can lead to additional testing just to rule out cancer or something else. In addition the psychological impact of an “abnormal” result should not be underestimated. In the US we spend twice as much per capita on healthcare than other Developed countries and yet have worse health outcomes (US Life expectancy is 38th in the world, slightly worse than Cuba). Excessive testing is one part of that overspending.
It may well be that patients ask for tests for some of the same reasons that Docs do – they may not trust their clinical skills of history taking or physical exam. Truth be told, a good H&P will give you the answer (either a diagnosis or reassurance) the vast majority of the time. And if that information is properly communicated to the patient they may well be happy with fewer interventions. A recent study from Israel supports the idea that CT scans are only helpful in a third of cases when they are used, and physicians were accurate without them 80-85% of the time. This supports the notion that clinical skills are impressively accurate even for hidden injuries, and that better guidelines are needed for when to scan people’s heads! One study from a family practice clinic showed that if better communication skills were used, the patients had fewer tests and referrals.
A key point of this is the effort one must put into convincing someone that a test isn’t needed. Even with “obvious” examples, performing a thorough physical examination will not only cement your own thoughts as a medic but will also demonstrate to the patient or parent that you are thorough! Show a little empathy or concern, make sure you explain everything and have a backup plan or safety net for them (eg a followup visit or phone call). When a patient trusts a machine or lab test above their physician there’s a problem…and these are skills and behaviors that can help build trust. Clearly this is a lot different than just “doing nothing”. The English medics have a phrase for this – MICO. Masterly Inactivity and Catlike Observation. It nicely sums up the concept of knowing what you’re doing, non-intervention, and keeping an eye out for changes. (If someone is sick you always have the option of MICOS – Masterly Inactivity, Catlike Observation, and Steroids.)
I do wonder sometimes, as I watch the techs and phlebotomists scurry about the hospital, if the doctors actually had to DO these additional tests themselves would they order them so much? In that setting, investing a few minutes of your time to talk might be preferable to doing the test.
Then there are the drugs and treatments we use – misuse of antibiotics for viral infections, medications to treat the side effects of medications, quantity of life sometimes is considered more valuable than quality of life. Even in the ICU setting, I have often seen kids on the ventilator who just need to be extubated so we can “get out of their way”, and let them breathe on their own. Sometimes an “information prescription”, some good advice, reassurance, is just what the patient is after rather than a pill. The “quick-fix” mentality is the enemy here, and we have to be wary of believing that a magic pill exists to fix a problem that good old fashioned hard work could help far more easily. Direct to consumer advertising doesn’t help…but that’s a rant for another time.
It seems to me that practicing medicine without doing tests all the time, or prescribing treatments all the time, is a perfectly valid way to go. Test when you need to, treat when you need to – but more judicious practice will, in the end, serve us all well. I don’t think it’s a coincidence that when I took my Pediatric board exams I kept feeling as if the questions were pushing me towards non-intervention/reassurance a lot of the time. I guess I was mostly right when I chose those answers since I passed the boards 🙂
The bottom line is that when discussing treatment options with your patient (you DO discuss the options, right?) non-intervention is often an option even if it’s not recommended or the best course of action, it’s still an option. Remember that.
Several years ago, before our children’s hospital was built, I remember spending time chatting with one of our child-life specialists about various incidents in the hospital. And by “chatting” I mean rants about procedures or events that involved some degree of non-patient-centered care.
This wasn’t just your every-day “I didn’t ask them what they thought of the plan” kind of failing, this was the “we do this procedure on adults all the time in the office, so we’re not going to use pain meds on your 3 year old” kind of failing.
There were various kinds of issues. The “treating kids like small adults” was just one, others included the “sneak attack” where doctors (usually surgeons) would rush into a patient’s room, and perform some kind of invasive procedure – whether it be a dressing change, a drain removal, or some other kind of “quick” thing – that would often degrade into a messy charade of “we’re nearly done” and “this doesn’t hurt” while the nurses are stat-paging child-life to come sort out the screaming child. Sometimes even a relatively well planned attempt would fall flat due to missing items or drugs wearing off. Some procedures, which I shan’t reveal here for risk of HIPAA violation and upsetting my readers too much, were nothing less than torture.
As it happens, she and I were far from the only ones thinking about this. One of the pediatric Attendings who was working on a project grant for child advocacy, one of my co-residents (now an Attending in her own right) who helped teach my Communication Skills course, and a couple of nurses were also keen to fix things. Several brain-storming sessions later we came up with the core idea, and our residency director (grabbing coffee outside the meeting room and overhearing us) coined the acronym – LEAPP.
Listen – Evaluate – Anticipate – Plan – Proceed.
Listen – to the concerns of the parents, the nurses, and the patient. Does this child have a specific fear or pattern of behavior, or coping strategy? What worked well, or didn’t, in the past?
Evaluate – the current situation. Has this child already gone through a traumatic event, such as a burn, amputation or other situation that puts them at high risk for Medical Traumatic Stress? What is their current pain level? How anxious are they?
Anticipate – what could go wrong? What if the child acts out? Should we have a plan B? What kinds of non-pharmacological and pharmacological interventions can we use to reduce pain and anxiety?
Plan – get your stuff together, get the treatment room ready (patient beds are NOT the place to do procedures – they should be the one safe haven a kid has in the hospital), get the people ready: doctors, nurses, child life. Who is going to be “the voice” for the child during the procedure? How long will this take? Have enough meds ready to hand without needing more from pharmacy.
Proceed – only when everyone, including the patient, is ready. This means waiting for meds to take effect!
This grand ideology, invented in a small conference room by half a dozen disparate people of entirely different roles, got itself some legs. We did research, surveys of the parents, doctors and staff as they performed procedures on the floor. We drew up plans to teach these principles, created quizzes and slides, and somehow convinced the Graduate Medical Education Office to put it online for us. We scripted, acted and filmed an educational video to illustrate the points, with interviews from the best patient-advocates we knew – the big-time surgical and ER pediatric faculty who could lead by example to teach their residents what was REALLY important in medicine: caring for patients.
At some point an email came my way with a hospital policy on it. And I blinked.
Hospital policy. An institutional policy for pediatric procedural pain management. And I looked at what we had done.
It had taken us two years, but we had created a mandatory educational initiative for EVERY resident (not just pediatric residents) at our hospital. We had made it hospital policy to LEAPP for every pediatric procedure – meaning that if a resident or attending didn’t follow it, they were in breach of an OFFICIAL policy. This wasn’t touchy-feely stuff any more – this was serious.
I was stunned. I had heard the phrase – “Never doubt that a small group of determined individuals can change the world – indeed, it is the only thing that ever has” – but until that moment I had never really seen it in action.
Now you can walk about our shiny, roomy, children’s hospital and see our green froggy sticker on patient rooms who are due to have a procedure. The LEAPP manual is at the nursing station. Child Life is no longer performing damage limitation, but instead is preventing the damage from occurring in the first places. Nurses and doctors are working together to best plan how things should be done.
At least, they should be. There have been hiccups. We’d like to think things are better.
But you know what….we’re doing a survey about that.
Just for a moment I’m going to take the view that vaccines are, you know, safe and effective. Sure, there are known side effects, mostly mild short-lived things like injection-site reactions or fever, but Bad Things do happen (e.g. Vaccine Associated Paralytic Polio from the live oral polio vaccine). On balance though it is clear that the benefits of vaccination to society as a whole outweigh the risks to society as a whole. Their success is measured in what we DON’T see – the 20,000 HiB cases a year, the 80-90% drop in pneumococcal disease from vaccine strains, the congenital rubella cases that every medical student knows how to spot (“Blueberry Muffin” baby, cataracts, persistent ductus arteriosus) but will likely never see in their professional lifetime. Safety monitoring is there, as imperfect as it is, which is why for example we don’t have oral polio vaccine in the US any more, and why the first rotavirus vaccine was pulled from the market.
So if we were to take a purely logical view on the matter, vaccination is a no-brainer. For many Docs this is why they get so irate about vaccine refusers. We learn about the diseases and the successes, and find it hard to fathom how you could come to any different conclusion. But clearly people do. There are unfounded fears about “too many too soon”, or aluminum adjuvants that add less exposure than breastmilk, or the fraudulent claim of autism causation that ended up being a scam for one Doc (the infamous Andrew Wakefield) to sell his own measles vaccine. Some parents are simply worried based on a previous bad reaction (I know I was, based on the way my eldest acted after his 2 month shots). Others have a genuine religious belief about medical interventions, and vaccination is just one aspect of that.
So then we run up against the problem of how to deal with this issue. As a general rule of thumb, it is accepted that a patient has the right to refuse aspects of their healthcare. There are very few exceptions to that rule, usually in the interests of others in society – forced hospitalization of mentally ill people who pose a threat to themselves or others, or cases of medical neglect where the State assumes responsibility for the medical decisions of a child when the parent puts them at risk, or Directly Observed Therapy for TB, where optimal treatment is paramount and doses should not be skipped. Things like that.
But vaccines are put into a different category. Why? I think the biggest, most obvious difference is that we’re not talking about treatment of someone with a disease, where inaction has obvious consequences, but rather an intervention to a typically healthy individual. In fact, moderate illness (enough to require hospitalization) is one reason to consider delaying vaccination, as the immunization might not work as well. As such, even though the results of inaction can be severe, resulting in death or disability, and inaction certainly has an impact on others in society, there is a natural reluctance to literally force vaccination upon people. Instead, there are more insidious ways to encourage vaccination through school mandates etc. Vaccines are not mandatory, you just have to get them. (If you can understand that, let me know, as that was how a non-mandatory examination was explained to us in medical school…)
As one approach, I am going to use the analogy of rabbits. Above you can see Princess Lulu Merryweather, an Old English Mini-Lop who was with us for over 8 years before succumbing to a pasteurella abscess. Lulu was a house rabbit and was pretty much housetrained. She knew a basic list of commands and would poop in her cage. The training of a bunny is interesting – as a prey animal they do not respond well to the typical training one might use with a predator animal such as a dog or cat. They are more like a horse, and respond best to coercion rather than discipline. In fact, an effective way to get them to do what you want is to embarrass them. This is difficult to do. It generally involves stamping your foot, turning your back on them, but trying to make eye contact so you know that they know that you are displeased. If you’ve ever had a bunny and told them off for something, you’ve probably seen them do this to you. There were several occasions when, as a kitten, she would pee on the couch and we would both end up stamping and back-turning on each other as I would tell her not to do that, and she would try to tell me not to shoo her off the couch. It was her couch, after all. (Did I mention the “Princess” part was added later? It was more a description than a title…)
So, since the decision not to vaccinate is often based more on emotion than logic, it seems reasonable that for some people (not all of course) an emotional approach will work better than a logical one. Human beings are hard-wired to fear bad things from an action (to vaccinate) more than from inaction (not vaccinating), even though a decision to do nothing is still technically a decision, and fear after all is an emotion. I wonder then if pressure from society, an explicit message that says that unvaccinated kids are an unacceptable risk to others would work. Peer pressure. At the moment we have an attitude of tolerance on the whole – barely more than a raised eyebrow, more often a nod of understanding. There may be pressure from the Docs and schools who are trying to protect society from itself, but there needs to be a grass-roots movement among the parents in my opinion.
I’m not entirely sure yet how exactly to go about doing this. I don’t agree with literally holding a parent back while we forcibly inject their child – since after all we do live in an age where many of the preventable diseases are at very low levels, and that goes against every fiber of my “patient-centered” being. I would much rather have informed decision-making – I just realize that for many their mind is made up no matter what facts I lay out and what misconceptions I correct. What I would like to see is an attitude of personal responsibility to temper the push for personal freedoms. Parents should WANT to vaccinate. Currently most fall into the “I don’t care” or the “I don’t want to” camps. That kind of paradigm shift may be slow coming, and I’m open for suggestions on how that might occur. We can’t use a stick, we need to use the carrot.
And maybe some foot-stomping.