When being a woman is an impediment to medical care: Dysautonomia

(source)

In 2007 I was on the search for an answer to a series of unusual and debilitating symptoms that had first developed in 2006. I was working in health, on a neurological and geriatric rehabilitation ward. I knew my way around the health system. I knew people had poor experiences with that system at times, but never thought I would be one of them. So I was unprepared as the General Physician sat before me and five minutes into our consultation he uttered the words “when a woman your age comes in with these symptoms it's always in their head.” I knew where he was going when he began our session by asking me a haphazard series of questions straight from the Beck Anxiety and Depression Scale. He had me pegged before I even walked in the door. And I'm sure my tears of anger and frustration fit perfectly into his diagnosis. As I sit here today with a cardiac pacemaker beating away in my chest and the diagnosis of a neurodegenerative autonomic disorder, those words still burn. And they burn even more knowing that I am not alone in my experience.

A quick review of patient support networks reveal a clear pattern of attributing physiological symptoms to a mental health diagnosis. And as many of the reported comments reveal, being female is a clear factor in this leap to a psychological aetiology. Comments range from being “too young”, or “too pretty”. That a “boyfriend”, “husband”, or “baby” would cure them. Other terms from “Working Women's Syndrome” to “Bored Housewife” are used. And diagnoses such as Anxiety and Depression are doled out with alarming regularity, and frequently without referral to an appropriate professional for official diagnosis or treatment.

Dysautonomia is an umbrella term for a collection of illnesses that affect the Autonomic Nervous System, the body's autopilot. Many forms appear to have a direct bias towards women (for example, Postural Orthostatic Tachycardia Syndrome is thought to have a 5:1 bias in favour of women) and pregnancy is known to be a trigger for symptom development. This collection of disorders remain relatively unknown in medical and lay communities alike. As a result, when patients present with what can be a times a group of vague and disparate symptoms, they are often misdiagnosed with a range of mental health diagnoses.

In truth whilst poor recognition and lack of appropriate referral is a concerning factor, more so is the pervasive trend of diagnosing patients with mental health conditions, particularly if female, when diagnosis is unclear. Often these diagnoses are based on old societal notions of the weak or hysterical female. In her post, The Woman Patient: Is Her Voice Heard?, published on the Sharing Mayo Clinic website, Dr Mary O'Conner, Chair of the Department of Orthopaedics, Mayo Clinic Florida examines the way women are perceived societally and by the medical community:

Of course we want to believe that we see everyone as equal. But in reality we do not. We are socialized to believe that women are more likely to have pain than men, or at least are more willing to complain of pain than men. Furthermore, women are seen as the "weaker sex" and our decisions may be negatively influence by the "time of the month" or hormonal status. While we know that there are true biological difference in pain pathways, physical strength and hormonal levels, these differences are framed in a negative light for women. Doctors see female patients through this spectrum.

This trend is not restricted to complex disorders such as the Dysautonomias. Simply being female is a significant factor in access to appropriate health care across numerous disorders. Earlier this year the World Heart Foundation, recognised a pervasive problem relating to the treatment of women with cardiac conditions. The group called for an end to gender bias revealing that women who present with cardiac events often receive poorer diagnoses and follow up compared to male counterparts. An excellent series of articles on this issue can be found on the My Heart Sisters website. With problems identified from the way research is conducted, to the way women are treated when they present at a clinic or the ED. In some cases the outcomes of these biases, unconscious or conscious, are deadly. A recent high profile example from the UK, demonstrates that this issue is not confined to any particular country or diagnosis. Dr Lisa Smirl, a Cambridge educated university professor, died of Lung Cancer at the age of 37, after repeatedly being told her symptoms were related to Anxiety of Depression. She died a year after her cancer diagnosis was finally confirmed.

A common complaint from patients of both genders, is that they feel unheard by their doctors when trying to explain their symptoms and concerns. However, research suggests that female patients are at a greater disadvantage even at this preliminary stage of the diagnostic process. A paper from Family Medicine entitled Speaking and interruptions during primary care office visits, found that gender was a significant factor in the way residents interacted with their patients. Whilst female practitioners interrupted to a lesser degree than their male counterparts, both groups interrupted their female patients far more than their male patients. Such interruptions are an indication that the doctor is not actively listening to their patient. Instead pursuing a preconceived diagnostic path. It is this sort of dynamic that leads to a break down in doctor-patient relations and subsequent misdiagnosis.

The problem is two fold. Misattributing physiological symptoms to mental health diagnoses, further stigmatises those with psychological issues. Depression and Anxiety in particular, have become the catch all for patients with what many believe are not real symptoms. And in doing so they further minimise and trivialise these very real illnesses. Even should a patient have a comorbid diagnosis of Depression or Anxiety (recent statistics show these are commonly occurring in the population and especially in chronic illnesses) they do not provide some magical protective factor that means that no other illnesses can occur. In a 2012 paper in the Social Psychiatry and Psychiatric Epidemiology, February 2012, a review of 30 general practice attendees across Victoria, Australia revealed that, “The prevalence of probable depression increased with increasing number of chronic physical conditions (1 condition: 23%; 2 conditions: 27%; 3 conditions: 30%; 4 conditions: 31%; 5 or more conditions: 41%).” To add to this issue, evidence consistently shows (see CDC, 2011, BMJ 2013 for review) that those with mental health diagnoses have consistently poorer health outcomes and lower life expectancies, posited up to 30yrs in some cases. In part due to the stigma attached to such diagnoses but also the issue that any new symptoms are viewed through a mental health lens, and dismissed as another manifestation of the underlying psychiatric diagnosis. Patients report hiding previous mental health issues for fear of further stigmatising. And even those who wish help fail to seek it for fear of the diagnosis impairing future health care.

Secondly, this misattribution means that manageable, and potentially treatable, diagnoses may be overlooked and diagnosis delayed. Patients are left with increasing poor health and disability. In some cases, by the time diagnosis occurs patients have been forced to stop working, leave school, relationships and finances are in turmoil. Patients are left with increasing and untreated symptoms that impact on every aspect of their lives. For example, recent large self report data (703participants) complied by Dysautonomia International on the most common Dysautonomia subtype Postural Orthostatic Tachycardia Syndrome (POTS), reveals that many patients are waiting on average six years to diagnosis, although there are cases reporting a 20-30yrs wait from initial symptom presentation to diagnosis. This data also demonstrated an incredibly high misdiagnosis of Depression and Anxiety, nebulous “Stress,” and “All in your head,” in the population. In total 83% of respondants had been received some form of mental health diagnosis prior to being diagnosed with POTS. Psychology and Dysautonomia continue to be a contentious area for patients and the medical community alike. Yet available research reveals that Dysautonomia patients are no more likely to develop Anxiety and Depression than the wider community when autonomic symptoms are controlled for in diagnostic tools.

“It's all in your head,” in all it's incarnations, has become a unifying experience for many women. The idea of being bothersome or wasting the time of various medical professionals is a continual theme found on patient support boards. Whilst men can also encounter this phenomenon on the diagnostic journey, an analysis of the comments themselves reveal an underlying gender issue, with references to child bearing and relationships common. This problem is pervasive across numerous diagnoses and countries such that simply being a woman is an impediment to receiving appropriate diagnosis and treatment. I often wonder where I would be if I had listened to the General Physician I saw all those years ago. Thankfully, his attitude fuelled an anger and determination that led me to an appropriate diagnosis and treating team. But a worry persists for those patients who are unable or unwilling to challenge their doctors and would simply accept such a diagnosis. Thus never receiving the appropriate diagnosis and treatment they deserve. It is time for the medical establishment and the patient community to step up and work together to demand better, non gender-biased treatment for all.

The following are a small selection of experiences of female patients from Australia and New Zealand, who were later diagnosed with a form of Dysautonomia. Whilst some show a basic disregard for patients and their experiences, many highlight the inherent bias in the way symptoms are veiwed:

POTS (Postural Orthostatic Tachycardia Syndrome); NCS (Neurocardiogenic Syncope); OI (Orthostatic Intolerance); IST (Inappropriate Sinus Tachycardia); ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome); EDS (Ehler's Danlos Syndrome)

"I would really like to see one of these "so called" Episodes you people say you have, (Dr then rolled his eyes). I think you just started hyperventilating and you need to breathe into a brown paper bag." Said by a ER Doctor, the 1st time I went to the hospital after a faint at my clothesline. This was said with no prior communication, no questions asked, no tests done.

J, 36, Australia

Diagnosed: Dysautonomia, including POTS with NCS and recently IST

Time to Diagnosis: 8 Months (Nov 2011 to July 2012, age then 34)

Misdiagnosed: Anxiety, Stress,

It must all be because you had a bad childhood and you are depressed" (I didn't and I wasn't), said by a Rheumatologist prior to diagnosis.”

B,38, Australia

Diagnosed: POTS and ME/CFS

Time to diagnosis: 2 Years

Misdiagnosed: Bad neck, Migraines, Vestibular Neuronitis, Fibromyalgia, Depression.

I've had symptoms since I was a pre-teen. My diagnosis happened in a neurologist's office here in NZ. He said "I don't know why you are here..." when I walked in. "...you people don't need a team of doctors, you just need a cardiologist and to get on with it". I began to systematically explain my problems. He began to look at my hospital record. When we had gone through all of it and he had done a thorough neurological exam, he said "Well. No. I don’t think you have POTS. You have Pandysautonomia. Pan meaning all. Dysautonomia meaning dysfunction of the Autonomic Nervous System. It will continue to progress and one day you'll stop breathing, but that is usually later. You should go and do the things you want to do with your family now. I don't feel I need to see you again. Any questions?" I was numb. Shocked. Angry and confused. He stood up and indicated the door. So I stood up too. I wasn't offered any kind of support or referred to any organisations. I went home and began the process of understanding exactly what Dysautonomia is through my own research. I am now 39 years old. I was 37 at the time of the diagnosis.

Rachel, 39, New Zealand
Diagnosis: Pandysautonomia
Time to Diagnosis: 30 years

Misdiagnosed: Abdominal migraine, Depression, and POTS

You seem stressed, antidepressants and lots of rest, relaxing music, massages and you will come right said by an endocrinologist.

H 29, Australia.

Diagnosed: POTS and NCS

Time to diagnosis: 15 years 2014

Misdiagnosed: Depression, Anxiety, A young woman with kids.

After passing out in one endocrinologists waiting room, I was told to "Get up."Then dragged off to his office where I was shaking, pale and slurring my words. He kicked my husband out of the room and asked if he was beating me and If I was there looking for attention. I started to cry and said no my husband is amazing and he had it all wrong. So he wrote me a script for antidepressants and told me to get more sleep. He leaned over me and said "There is nothing wrong with you" I left so embarrassed and I was diagnosed one week later by a cardiologist.

Before diagnosis, when I was still working, I tried to explain to a GP about my exhaustion and the fact that I seemed to be getting two viruses a month. He suggested I drive home every lunchtime and take a quick nap.

After a 15 minute consult with a cardiologist, she said: “This is pretty much somatising.” When I asked her to explain what it was about my story that had led her to that (very complex) diagnosis she said: “I see so many women like you who have nice husbands and young children and are high achieving who express their emotions through physical complaints.” When I explained that I am a person who knows my feelings very well and have no trouble showing or articulating them she waved her arm dismissively and said: “everyone who is told they’re somatising says that. No one likes to be told they have a psychological problem.”
A, 43, Australia

Diagnosis: ME which includes POTS and autonomic dysfunctions amongst its symptoms
Time to diagnose: 10 years.

Incorrect diagnoses: Raising young children, childcare bugs, caring too much about other people, Pelvic Instability, Insomnia, Irritable Bowel Syndrome, Worried Well, Fibromyalgia, Birth Trauma, Somatoform Disorder, Somatic Depression with Anorexia Nervosa, focusing too much on my body, listening too little to my body.

I was sick for 15 years before I was diagnosed with dysautonomia. Even now, my specialists aren’t sure what’s causing my dysautonomia - I have EDS and a mast cell disorder but it seems there may be something more as well. For most of that time I had the useless catch-all labels of CFS and Fibromyalgia which as far as I can tell is just a bunch of words that mean "We have no idea, stop being difficult and go away." It wasn’t until my dysautonomia was diagnosed that I started to be prescribed medications like Florinef, Midodrine, and Propranalol which have helped me to get a lot more functioning back.

R, 39, Australia

Time to diagnosis: 15+ years of being housebound and bedridden.

Before any diagnosis was given, the GP refused to give me any more referrals to specialists to explore why I had so many strange symptoms, telling me "there comes a time when enough is enough and you just have to learn to live with your symptoms." And from the same female GP "you'll feel better when your triplets start school, like I did with my twins."

J, 43, Australia.
Diagnosed: EDS, POTS, Pineal Cyst.
Time to diagnosis: 1.5yrs or probably a lot longer (2012)
Misdiagnosed: Depression, Anxiety, Silent Migraine.

GP "I don't think you are sick. I think your are just suffering from anxiety", ME "then why is my lying HR normal and my standing HR in the 150s? GP "you must be scared of standing up" said despite my diagnosis of Dysautonomia by two neurologists.

"I know you people THINK you have a condition" said by a cardiologist after I raised the possibility of POTS.

A, 41, Australia.

Diagnosed: Primary Dysautonomia.

Time to diagnosis: 3 months (2010)

Misdiagnosed: Atypical preeclampsia, Postnatal Depression/Anxiety

I'm now 45 and 4 years out of the workforce. I've been looking for answers since I was 17. Always diverted to gynos and psychs, even after I fainted at work in 2010, the hospital told me I'll be ok it was just a faint. I kept telling them I did not feel right and every time they discharged me I would faint before I got out of the door. After 2 weeks of this nonsense I left in disgust and went to my GP. By pure coincidence he had just been to a seminar held by my current cardiologist. I was referred to him for a TTT and finally diagnosed. Still struggling with the psych imprint.

T, 45, Australia.

One cardiologist (male) told me that I needed to relax, that if the first tablet didn't work I had no hope and that he had "a number of young, thin, high achieving women who simply don't drink enough". He then stopped talking to me and spoke to my husband for the rest of the appointment. Needless to say I didn't go back.
M, 41, Australia.
Diagnosed: Progressive Neurodegenerative Automomic Disorder. Including NCS and OI
Time to diagnosis: 1yr for original NCS diagnosis
Misdiagnosed: Depression, Anxiety, Working Woman's Syndrome.

"Are you sure you aren't just having panic attacks when you stand up?" (ER doctor, post diagnosis of POTS)

J, 30, Australia

Diagnoses: POTS/dysautonmia

Time to diagnosis: 5 years to diagnosis

Incorrect diagnoses: Panic Disorder, Nocturnal Panic Attacks, inactivity/unfitness

Thank you to all who shared their experiences.

Michelle

Non-compliant, Empowered Patient, or just plain tired.

I'm sitting on my bed looking at an unfilled medication script lying on the sheets in front of me. I've had it for a few weeks now, but am yet to take it to the pharmacy. I've tried it before with little success, but personality-bereft specialist number 28 has told me to try it again. It was written up before I had even been given a chance to agree or disagree. He had decided I should try it and that was it.

When I said it was like taking Tic Tacs last time, his response was:

It probably wasn't a high enough dose.

When I asked if he really thought it would work in my case:

It helps some people.

Are there side-effects?

It can drop your blood pressure.

When I was still not keen.

Keep going up in dose until you either have too many side-effects or it works.

When I told him I never have sedative effects from medications (a long-standing, well-documented issue), including this one:

It'll help you sleep.

And so I left, unheard, ignored, with yet another script in my hand.

And I sit here today with the same script sitting unfilled before me. Knowing that I have to see him again next month to update him on my progress. Knowing that the more I look at the script the more unlikely I am to fill it. When you know a doctor hasn't listened, it is very hard to trust their treatment decision.

So much of treating this disorder is trial and error. It is the case of Medication A helps some people. We don't know why. Or how to predict who it'll work for. Or who it will give horrendous side-effects. But you must try it. And so you do. You think doctor knows best. They treat this so they must be making a reasoned decision on what they prescribe. And then you find that you can't control your leg muscles, or that you are in so much pain from excessive vasoconstriction that you feel like you're having a stroke or heart attack, or that you have uncontrolled vomiting and diarrhoea, or that your blood pressure bottoms out, or that your mood is altered, or..... Without knowing a cause, symptom management can lead to many unpredictable and unpleasant reactions.

I've spoken before about the fact that it is patients who bare the greatest burden of any treatment decision. All treatment decisions come with a risk/benefit analysis. All treatment options have risks attached to them. One look at the information sheet that comes with any medication and you are given a list of the generic side-effects, gastrointestinal disturbance, nausea etc, then there are a list of less common and more serious side-effects. As a patient you have to weigh that up against a potential gain, usually symptom control, that may be achieved. For example, I have nausea and vomiting regularly. The only anti-nausea medication that now works for me, contributes to constipation, which I already experience. Which means I have to now take another medication to counteract the increased constipation. But if I didn't take the anti-nausea I'd never eat and could hardly function. And so the cycle goes.

As a patient you have to weigh up potential gain against potential risk.

And that equation will be different for each patient.

For each of us that will be different. My acceptable risk will be different to another patient's acceptable risk. Another example, for me the benefits of taking Florinef outweigh the gastrointestinal distress, or the long term potential side-effects such as osteoporosis or glaucoma. Others are not willing to take that risk. We, as individual patients, must make the decision that best serves our individual presentation, our beliefs, our desire to use or not use traditional medical treatments, what we can afford, what we can access, what level of potential gain offsets potential risk, what other conditions we have, and what emotional investment we are willing to put into the hope-try-disappointment/success cycle.

After 8 years I am tired of maybe. Maybe this treatment will work. Maybe it'll not give you horrendous side-effects. Maybe it will be easy to come off. Maybe it wont contribute to the difficulties inherent to polypharmacy.

It is me who has to pay the greatest burden for any treatment. 

I am happy to try a medication that has a higher level of success based on my individual presentation. A reasoned decision. Not a maybe decision. I am not early in my diagnostic journey. I have done the hard yards. I have tried many different treatments. Even ones I was not keen to try. The last of which dropped my blood pressure and altered my mood to such an extent that it was apparent to all around me. I am not keen to go down the maybe track again.

My experience as a long-term patient is valid. I know my body. I know how it reacts. I come from a background in health and research. I know how to weigh up the data. I also appreciate and value the expertise of my doctors, it's why I go to them in the first place. But more importantly,

I am the expert in me. 

I already take 15 tablets each day, not including breakthrough meds for things such as pain and nausea. Adding yet another two or three to the mix (not including the more recent, and completely impractical, recommendation of taking an expensive anti-nausea medication and 2-3 enzyme tablets before each of six small meals a day), is not high on my agenda. Especially not without a fairly high potential return. I am aware that nothing is 100%, medicine doesn't work that way. There are too many variables in the human body. But I am also not happy with the carte blanche attitude towards script writing by some of the medical professionals I have encountered over the years. And a tendency to ignore or underplay the potential downside to a medication.

Each time it doesn't work, or there are side-effects, my already beleaguered body does not bounce back. It does not simply get over it. It takes weeks or sometimes months. Each moment of stability is hard fought and I am not willing to surrender it to a less than convincing maybe.

I am all for a reasoned, research-based decision that is arrived at 

after a collaborative discussion between myself and a specialist. 

Not one which is forced upon me 

with a dash of hope, 

a very large maybe, 
or a paternalistic "because I say so".

It is costly, physically, financially, and emotionally. It is also costly in terms of time. Each trial equals time. Sometimes time lost, sometimes time well spent. But mostly time handed over for a hope and a prayer. If I am to invest 3mths or more in a medication trial, when I live with a progressive illness, I want to know that the odds are in my favour. Each month with no, or negative return, equals another month of illness, of pain, of nausea, of life not lived. Or potentially, a worsening of health. That is a big ask, and one frequently unacknowledged.

I am a motivated patient. I want to maximise my health and in turn decrease my disability.

I am not non-compliant.

I am empowered.

But I am also tired of managing an increasing level of disability and illness, and having to deal with a medical system which seems tailored to a generic norm, and reluctant to listen to the very patients who must live with the decisions made.

Michelle

Non-Compliant examines decision making processes in depth.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,800, keep donating and hopefully we can reach $10,000.

Non-compliant

(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.

Michelle

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