Tuesday 12 August 2014


(I primarily discuss patient relationships with doctors in this post, but the same issues apply to all medical, nursing and allied health professionals with which a patient interacts) 

Words matter. They have great power. If the current push to recognise bullying has taught us anything it is that the old saying "sticks and stones will break my bones, but names will never hurt me" is a lie. Words wound. Words define how others see us and how we see ourselves. Words can be used to heal or to cut, in equal measures. And words also define relationships. In medicine much of the lexicon is handed down from a time when medicine was set in the do to and not the do with model. They represent power and the unassailable position of the doctor as the expert and controller. Often the legacy of these words is lost to those who use them. They are part and parcel of practice, used without thought for the schema they represent. And yet, their use influences how they interact and view those around them.

If there's a word I hate in medicine it's non-compliant. I hated it as a professional. I hate it even more as a patient. It is laden with judgement. And it is set firmly in the paternalistic model of medicine.

Non-compliant = bad

And, it has been used by many as an excuse to stop seeing particular patients.

Non-compliant says that a patient has gone against the treatment advice of their doctor. It is a challenge against expert authority. It also says that the advice was unassailably correct and that in going against that advice, the patient has made a bad decision.

Back in my old life I used to assess the decision making capacity of patients, most commonly those who were refusing medical advice. Mrs A is refusing to move to a supported care facility. Mr B is refusing to take his benzodiazepine. Mrs K is refusing to allow nursing to shower her. I would go in and undertake a lengthy assessment of the person's situation, explore why they were making the decisions they were making, and their cognitive abilities. Sometimes following the assessment I would recommend that a referral be made to the Victorian Civil and Administrative Tribunal for the appointment of an Administrator or Guardian. But many times the discussions would unearth previously unrecognised aspects of the decision that made perfect sense to that particular person. The issue wasn't that they were making a bad decision or were no longer able to make a decision, but that refusal had been interpreted negatively by the team, and that had ended discussions. What made perfect sense to the team, was seen as negative to the patient for a whole host of reasons. Once discovered, some could be addressed and worked around. And some were seen by the patient as a deal breaker.

Every person is assumed to have the capacity to make decisions
until proven otherwise.

Unless a person has lost the cognitive capacity to make decisions (even a person with dementia is capable of making certain decision in their life, or at least participating in the process at some level) it is assumed that the decisions they make are reasoned, even if that reasoning isn't immediately obvious. People make questionable decisions every day. Some are huge life changing decisions eg who they choose to marry. And some more mundane eg when they decide to eat the entire packet of Tim Tams in one sitting. But there is reasoning in each decision. And while Barry may not be everyone's cup of tea or a more moderate intake of chocolate biscuits may seem a healthier choice, that doesn't mean it wasn't the right decision for the person at that time. Whether either was a good or bad decision is dependant on perspective. And there may be factors that only the person making the decision fully understands. Often the refusal of medical treatment is instantly equated as a bad decision. But that judgement is firmly set in the medical perspective, not the individual, for whom it may be a totally reasonable decision.

The definition of decisions as good or bad is highly personal. 
It is a judgement call. 
Not a fact based call.
Even when one party may feel that the facts support their position.

As a patient you see a medical professional for their expert advice. At the beginning of the appointment both parties share the same goal:
  • The patient is unwell and wants to return to or achieve health. 
  • The doctor wants to help the patient return to or achieve health.

Yet from this point much divergence and conflict can occur.

Most treatment plans are still the province of the treating doctor, although depending on the individual doctor and the patient involved, that may vary in degree. Still, particularly in areas such as prescribing of medication it is the doctor who has the most control. Often a patient will go in with a complaint, they are told to try a particular medication and sent on their way to return in 3 months. If on return the patient has failed to take the recommended medication they are seen to have made a bad decision and difficulties in the relationship can begin. Although in truth, the problems began at the time of prescription during the initial appointment.

With medications there are many issues that can arise which affect a person's choice to start or not start a treatment. For example:
  • They may not understand the prescribing instructions.
  • They were scared about taking the medication.
  • They wanted to try alternative options first.
  • They couldn't afford the medication.
  • They couldn't tolerate the side-effects of the medication.
  • They were socially isolated and unable to access a chemist to purchase the medication.
  • They discovered that the medication led to other complications that they were unwilling to risk.
  • They were dealing with multiple life issues and could not contend with starting a new treatment on top of these issues. 

Many of these issues could have been addressed at the initial consultation. Talking and listening to the patient would have unearthed many of them, and set up the opportunity to problem solve together. Issues such as side-effects, risk-benefit and cost are easily conveyed and potentially solved. Issues regarding access and life stressors take more time, but are just as important to decision making. Even when a patient is motivated to undertake a recommended treatment there may be aspects of their life that create difficulties and end with them choosing to not undertake a particular line of management.

For a personal example:

Exercise is an important aspect of Dysautonomia management and patients are often referred to exercise programs. I was referred to an outpatient rehabilitation service for physiotherapy and occupational therapy at a local hospital after a significant deterioration in my health. I was motivated, but physically accessing the program was highly problematic.
  • The only time offered at the hospital was early morning. Mornings I am highly symptomatic. My bp is erratic, and often accompanied by vomiting and diarrhea amongst other symptoms. It is an exhausting time of day and it is often not until a couple of hours after I take my medications and rehydrate, that I am able to undertake any physical tasks. 
  • I no longer drive. With no one home during the day I was unable to easily get to the hospital. 
  • The local taxi service was haphazard at best, even with a booking. With no discounted taxi card cost was prohibitive at nearly $30 a round trip. 
  • A volunteer driving program was available and was discussed.
  • However, I have trouble with travel. The simple sitting in a car is exhausting and can end with symptom exacerbation and my passing out. Even when a lift was available by the time I reached the hospital I was often so symptomatic that I was unable to participate in rehabilitation.
  • At the time I was having trouble with stairs and my house had 3 flights. Leaving the house was at the time problematic and dangerous. 
  • The effort involved in undertaking the offered program would have left me so exhausted that I would have been unable to participate in other aspects of my life that were important to me. For example, attending my sons' school events, or even cooking them a decent meal at night.

Overall it was looking unlikely that I was going to be able to participate in the program.

  • When I called the head of the program to say I was not going to be attending the morning sessions it could have gone one of two ways.
    • I could have been seen as non-compliant and unmotivated. I could have been told my place would go to another patient who wanted to get well (these comments are not unusual). Or,
    • The program head could have asked me why I was unable to attend and if there was anything they could do to facilitate my participation.

Luckily, the latter option was selected.
  • After discussions it was decided that the morning program wasn't suitable given my restrictions.
  • We discussed each obstacle and problem solved together.
  • Home visits were organised twice a week, plus the option of a phone service for any discussions.
  • Rehabilitation goals weren't focused on getting me to walk a certain distance or lift a certain weight but on how they could improve my quality of life. A quality of life as defined by me, the patient. 
  • They were individualised to my personal circumstances rather than being forced into a generic group where I would have been unable to keep up.
  • The effort involved in travel and preparation were removed and the extra energy allowed me to continue to participate in my sons' activities. 
  • Overall, I was able to have the ongoing physiotherapy and occupational therapy that I required.

Without that one phone call I would have been unable to participate in the rehabilitation program. The cost-benefit would have been heavily weighted on the cost side of the ledger, making it an even less attractive option. I would have returned to my doctor having not undertaken the program she recommended. On it's face I would look non-compliant, when in reality it was the obstacles of life and my disorder that were preventing my participation, and not my motivation. Non-participation would have been a reasonable decision in my mind, based on the initial treatment parameters.

Time and again I read on forums of patients being termed non-compliant and often told not to come back by their doctor. The reasons a patient may make a decision not to undertake a particular treatment are many and varied, but that does not make them bad decisions. Nor does it make them unmotivated.

If doctors fail to include patients in the initial treatment decisions as an equal partner, any treatment program can fail or under-perform. A patient's decisions should not be framed in the context of good or bad, they should be framed in a context defined by what is best for each individual patient, as defined by the patient. Both sides should come to the table with their particular area of expertise and a decision should be reached together. How that decision looks at the end of those discussions may be very different to what both parties expected? It may end up that the initial treatment offered is seen as the best option by both parties. It may end up that no treatment becomes the best option for the patient at that time. Problem solving access, and understanding the multiple factors that influence decisions is vital if the shared goal of best health is to be achieved.

Understanding a patient's decisions is often seen as time consuming. 

But a refusal to understand the why is even more time consuming in the long run. 

It results in more visits, higher rates of hospitalisation and re-presentation, 
and overall poorer outcomes.

It is the patient who may become unwell due to side-effects of a medication or a decision of no treatment. It is the patient who financially bears the cost of treatments, which are not accrued in a vacuum, but must be balanced against other items like rent, food, or a child's school excursion. Culturally a treatment may be inappropriate. Physically a treatment may not be appropriate. A cost-benefit analysis of a proposed treatment may have risks that a patient is unwilling to accept. The patient is the expert in their experience of living with illness, and in the way they approach illness and life in general. It is the patient that lives with the illness 24/7 and not just the 10 minutes of a consultation.

And with every treatment decision, 
it is the patient that takes the greatest risk and will bear the greatest burden.

Patient's do not exist in isolation. Their interactions with the medical world are coloured and shaped by life experience, culture, social situations, religious beliefs, support systems, their ability to research, and many many other factors. Patients are no longer happy to simply sit back and be told what to do. And many are very capable of researching and understanding their various treatment options, and the intricacies of their diagnosis. Without understanding context, the why of a person's decisions, it is easy to label them as non-compliant, when in fact they may have made a valid and reasoned decision for them.

Non-compliant is a lazy, value laden label of little value except to reinforce the idea that the doctor is all knowing and the patient should do as told.

Good and bad decisions are defined from a medical perspective, and exclude what may be very valid reasons for the individual.

It does little more that provide an obstacle to appropriate treatment.

It colours how other medical and allied health professionals will react to a patient in the future.

And it will have a huge impact on a patient's ability to trust future doctors.

If it is accepted that patients come to their doctors seeking health
 and doctors want to aid a patient in seeking health, 
then it is counterintuitive for a patient to refuse a suggested treatment
 without good reason

A refusal of treatment is not a challenge to a doctor's expertise, it is an opportunity to understand a patient and provide the best treatment option, with the greatest chance of success, for that particular patient.

And that is a great outcome for all involved.


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  1. Thank you so much for this. I'm just now faced with my first serious non-compliance issue. It's a delicate moment and I'm thrilled to have your insight. I've copied this into a file for further reference. I always enjoy your posts and will treasure this one.

    1. I hope it goes well for you, Colleen. It is hard and confronting as a patient to say no. I found there was a real theme in response to this about a fear of losing care if you don't play the game. Essentially being coerced into certain behaviours or treatments out of fear rather than really wanting to try what ever was being suggested. That shouldn't be an issue for any patient. xx

  2. When I was 17, my 2nd oldest sister was diagnosed with breast cancer. She had found the lump when it was the size of a pea, but her surgeon waited 6 months to biopsy because my sister was 28, just a few months shy of turning 29. By the time it was biopsied, the lump had grown to be "half the size of a baseball" (half the size of an orange) and was metastasizing microscopically. She died 1 day before she would have been 30 years old and left behind a 10 year-old son. Compliance that goes against what you know and feel in your body can be deadly. And even for knowing this and dealing with dysautonomia and having to fight to be heard, too often I am silent. I had a cardiologist say to me, "Which one of us went to med school?" I responded, "Which one of us lives in my body and can't function taking a pill that makes my low blood pressure go lower?" God bless him, he did back off. I am so grateful for your voice. Your posts always seem to come about just as I'm dealing with the very topic at hand.

    1. I am so sorry for your loss Suzanne. Your sister's case is one of those sad examples of compliance gone so very wrong. I know for a lot of us once diagnosed everything is attributed to that one diagnosis. As if that somehow makes us immune for other medical issues. And prior to diagnosis we are ignored or told to undertake therapies that aren't treating what we have. If I had gone along with some of my diagnoses and treatment plans before diagnosis I'd hate to think where I'd be now. It's such a tangled problem. xx

    2. I had a cardiologist say to me, 'Which one of us went to med school?' I responded, 'Which one of us lives in my body and can't function taking a pill that makes my low blood pressure go lower?'"

      Wow, way to respond with poise and grace! I would have been livid, absolutely infuriated. Bless you for not decapitating him with a tongue depressor.

  3. I wish EVERYONE in the medical field had to read this blog. I was a positive behaviour practitioner so was nodding along to your whole post; I also despised the words 'non compliant'- to me they usually just meant 'couldn't be arsed investigating why the client didn't want to do something'. Now being on the patient end of things, I see it in lots of medical professionals who don't realise I was once, in a way, 'one of them'. In the ED doctor who accused me of being non compliant with maintaining hydration, even though I religiously drink 4L a day. In the specialists voice when he accuses me of taking too long to titrate up a dose of medication, even though I had explained I was experiencing horrid side effects. What, as a patient, could I possibly know about myself? Thanks for yet another thought provoking, awesome read. And wishing you all the best for rehab :)

    1. I think it is really interesting having worked in the area and now being a patient, Jessie. It's a whole other level of personal salience to the issue. Non-compliant is one of many words that could be lost from medicine forever. The whole maintaining fluids thing gets me. Like you I guzzle and also take meds to help me retain and still end up completely dehydrated. Drinking another glass or 12 wont cut it. I finally had a great senior ED doc who was happy to acknowledge I knew my disorder and body best and it was such a relief. I wouldn't be an ED doc for quids, but I don't understand how hard it is to respect that after nearly a decade living with this I might have a clue. I don't understand how some can be so happy to learn about the condition and ask a heap of genuine questions and others simply couldn't be arsed and treat you like an idiot.

  4. Thanks again Michelle,

    for nutting out another complex issue patients all face at some time or other. Written down it seems so straightforward, logical and of good sense. I wish all medical professionals could receive this piece in their inbox today.

    1. Thanks Anon, as you say it is straightforward. I do think a lot is about changing attitudes and organizational mindsets. Patient as part of team vs patient as an impediment to doing what they want done.

  5. Oops, I think your blog ate my comment ... briefly restating, not having spoons for complete rewriting:

    1. I found the phrase "burden of treatment" changed how I thought of the whole compliance stuff. We talk about components of it all the time - cost, the time taken, etc., but the idea that treatment could be a *burden* was something I found revelatory and really changed how I thought about it. And in my time I've been asked to do things with a HUGE burden of treatment - like doing exhausting exercises every 45 minutes I am awake for 6 months solid - but no doctor has ever mentioned that I may legitimately find this a burden or that that burden may factor into my decision about doing things or not doing things.

    2. As Jessie describes above, I have also been labeled as noncompliant when I *was* compliant but because i did not respond to treatment the doctor just arrogantly assumed I MUST have been lying about compliance. I found it unbelievably upsetting and never saw the fuckwit again, but it's coloured my dealings with doctors ever since. I know you saw my intricate graph of how much I was able to do of the every-45-minutes exercises I religiously did every day for 6 months, and how completely I failed to respond? The basic reason that I kept that much data and recorded it all was to guard against the same thing happening - I figured if I had documented it so meticulously there was less chance of the doctors accusing me of lying about my compliance.

    The end result of being treated like that is that I have a lot of anxiety around those labels now, and I feel like I can't really make my own decisions about what treatments I choose - I feel that I *have* to do whatever is suggested (however crazy, intrusive, or unhelpful) because the emotional penalty for making any other decision is too high to bear :(

    1. I think you really show the fear issue that surrounds agreeing or not agreeing to treatment, Jeshyr. I've been there myself. You are tired of being blamed when treatment doesn't work. You know it equates with difficulties in accessing the care you need so you end up going above and beyond to show you were compliant. Such a huge and unnecessary burden to place on a patient when you're already struggling with illness. No treatment should be undertaken for fear of losing access to other care. That isn't informed consent, it's not respect, it's an unspoken and damaging level of coercion not often admitted to in health care. You have to essentially play the game even when detrimental to ensure continued care. xx

  6. Reading thru your blog reminded me of the William Hurt movie THE DOCTOR. The tables are turned on him when he undergoes cancer treatment.

    Compassion is a rare quality...

    Lots of arrogance, hurts when u are vulnerable and trying to stabilize....

    People carry enough burdens, troubles... I guess the medical model of understanding disease does not always include understanding mitigating circumstances.

    1. I loved that movie, Monshonday. Haven't seen it for years. I often think that the issue is so ingrained that those in the position of power don't even realise what they are saying or doing is harmful, it's just the way things are done. Thankfully there is a move away from this, but as a frequent medical flyer I'll have to say it's still a real and pressing problem. Even as someone who can advocate for themselves and a husband who will advocate for me when I can't, trying to fight that kind of entrenched attitude can be exhausting and disheartening. Not what any of us need to deal with on top of dealing with illness.

  7. Really great post. I am a passionate advocate for narrative medicine. Taking the time to elicit the patient story yields so many vital clues to "non-compliance" (yes, I dislike the word too!)

    1. Thanks for commenting, Marie. Oh to see narrative medicine as the norm. How amazing would that be? :)

  8. I have a husband that trustingly tells me to 'do what the doctors say.' This was not an issue for the early years of my diagnoses but things have changed as less things have worked often will horrible side effect experiences. Some docs realize that I know what it's like to be in my body, but some docs have no idea. My husband no longer comes to appointments with me because he supports the doctor in everything, and not me. Mostly I see docs that do 'get it' but even they can be wrong sometimes. It's the best doctors who know it is impossible to be right 100% of the time, especially when dealing with 'syndrome' illnesses. But I have learned to be very careful when relating to my husband what was said, advised, by the doc at my latest appointment. Essentially my husband will see me as being 'non-compliant' even after I've taken a new pill, spent two hours throwing up violently followed by two hours shaking and shuddering trying to get warm. Hubby wants to know why I would be then unwilling to take the second of those tablets? It's exhausting.



  9. Hi Michelle, I just read this post and really relate to it. There's been so many instances on my long journey with EDS and dysautonomia where I've been treated as 'non compliant' by medical professionals but perhaps the most frustrating has been regarding my mental health. I think mental health is one of those things that can really affect treatment decisions and yet it's very often disregarded by doctors in the physical realm. For example: one of my mental health issues is severe anxiety about taking medication - which goes beyond nervousness about side effects - and so any decision to take medication has to factor that in, and more often than not I'll have to decline medication I'm offered. Reactions from doctors etc have included: incorrectly describing me as 'refusing' the treatment'; laughing at me; looking at me as though I've sprouted horns; tutting or other ways of showing disapproval. Half the time I just take the prescription away with no intention of filling it out, and don't say anything, because I fear the reaction. There are medical professionals who are well meaning and try to reassure me about the medication but they don't really understand how anxiety works - it doesn't just stop because someone says 'most people usually tolerate this'. So I get labelled a certain way and no attempt is made to understand the problem.

    I feel very strongly that any physical health professional should receive training in mental health because it can be such a barrier to treatment. What if their patient is depressed and can't leave the house for a physio appointment, or has panic attacks when they try to take a pill? They might not be able to do anything about it but it would lead to more understanding at least. I also have a family member with schizophrenia who struggles to manage a long term physical condition because his thinking is so disordered, and health professionals just seem to give up on him.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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