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THE concepts of choice and autonomy are highly valued in our society. In health care, as with many other areas of life, people exercise choices based on their own understanding of risks and benefits.
In the past, most people would rely on information from their doctors about risks and benefits, but today many people do their own “research” — which often means going to the internet for a free consultation with Dr Google.
In the past, people received information filtered through the views of the health care professional who was responsible for their care. On the net, this information may be filtered through a range of special-interest groups, lay commentators and people with vested interests — none of whom is held responsible for the wellbeing of the reader.
So, what does this say about “patient choice”? What should be the status of misinformed choice based on false or biased information? To what extent should a registered health care provider have to respect or, indeed, support a choice based on misinformation?
There is no doubt that mentally competent adults in our society have the right to make their own choices, safe or otherwise. But is a doctor obliged to “support” those choices?
This issue is part of the discourse about home birth in Australia. A study on home birth-related neonatal mortality in SA showed a sevenfold higher risk of intrapartum death and a 27-fold higher risk of death from intrapartum asphyxia. The coroner in that state is also currently examining a number of individual cases involving home birth.
One of the arguments as to why doctors should support a woman’s choice of home birth is that if registered doctors or midwives refuse to support the mother’s decision to deliver at home she might decide to go it alone, thereby magnifying the risk.
Is this a valid argument? Should a doctor or registered midwife, knowing that a woman will deliver alone at home if not supported, attend the home in an attempt to mitigate the risk? Does failure to do so constitute abandonment?
This discussion relies on the way the woman — or any patient — understands risk. Is their understanding based on fact, ideology or misinformation? Would they make the same decision in the face of different information?
If a doctor does his or her best to redirect the patient’s choices, but is unsuccessful, what ongoing responsibility should they hold? Can health care providers be expected to act against their better judgement to mitigate the effects of risky patient choices?
Ultimately, we all make choices every day that can impact on our wellbeing. When things go wrong, the health care system is there to rescue us from our own behaviour — whether that be extreme sports, overeating or drug abuse.
We send medical teams to the Grand Prix circuit. Should we send a medical team to a home birth of twins?
Dr Sue Ieraci is a specialist emergency physician with 25 years’ experience in the public hospital system. Her particular interests include policy development and health system design, and she has held roles in medical regulation and management. She also runs the health system consultancy SI-napse.
Posted 16 January 2012
The issue of patient autonomy is one which is well worth discussion. I think the debate with Mia has gone on long enough; she clearly has concerns with a certain proceedure (sympathectomy).
Let’s consider the issue of prescription medications. The reason they are only available on prescription is presumably because patients do not have the necessary clinical training to be able to use them safely and appropriately without medical supervision. Yet some patients seem to be under the impression that they should be able to ask/demand whatever drug they want from a doctor (usually after some internet “research”) and the doctor should give them a prescription as a matter of course. In my own practice (endocrinology) I have at times declined to prescribe certain hormonal preparations for specific patients, who have not always been happy with my decision, despite my giving a detailed explanation. Hopefully we will never be regarded as medical supermarkets who provide prescriptions on request – but that appears to be the direction some patients and politicians would like to see the profession take.
The direction of the finger pointing is indeed clear from your article. (Preaching to the converted).
In my comment(s) I merely tried to show an example that if there would be no crisis of trust towards the medical profession, you would not have to deal with credibility issues and ‘sects’ of the uninitiated.
There is a stark difference between misrepresentation and minimal information. I can not see a medical professional contradicting his/her ad during a consultation.
Mia – I see a real difference here between health care treatments promoted or provided by registered health care professionals, as opposed to those provided by others. The regulation of registered pracitioners provides for sanctions against false advertising (and restricts the nature of advertising) and hold the practitioner accountable for the quality of their treatment and outcomes. It would be highly improbable that a registered medical practitioner would enter an agreement to provide surgery without giving a fuller explanation than is found on a website. If they did, they should – and can- be held accountable for the results. My essay above distinguishes this from the “advice” or “information” provided by many interest groups and zealots on the net, who hold no such accountability.
As long as patients are led to believe that the procedure only impacts on the sweat glands (and only in a well defined area), or that the abnormal sweating they will experience after, is a ‘shifting of sweat from the palms/face to other areas of the body to maintain thermoregulatory cooling’,and thus “compensatory”, the procedure will be misrepresented. It does not help that many refer to is as a permanent ‘cure’ either.
Mia – you are right that these procedures are advertised on the net – especially on US sites. Can you please explain how it is “misrepresentation”?
Easy. Just enter ‘sweaty hands’ ‘cure’ or ‘blushing’ ‘treatment’ into google, or any search engine. The numbers will be less from within AU (than the US), but the misrepresentation is the same.
Mia, you claim that people cannot trust information from medical practitioners, citing “Example: “sympathectomy created imbalance of autonomic activity and functional changes of the intrathoracic organs” – yet it remains a heavily advertised elective (life-style) procedure for sweaty palms and blushing (sic!). ” I can assure you that not many people would be rushing to have surgery for run-of-the-mill blushing. Extremes of these conditions can, though, be very disabling. I have not seen evidence of sympathectomy being “heavily advertised” – could you point me to where these advertisements are, please?
A great dilemma posed by Sue, and a very pertinent comment by Tommy. As a paediatrician, I am often frustrated that parents and even other health professionals forget that there is another life involved besides the mother’s. Sure, “competent” adults can make decisions regarding their own lives (e.g. the grand prix driver), but in childbirth we need to ensure that parents are making decisions on behalf of the baby that are actually in the baby’s best interest. Another example is mothers with risk factors for group B streptococcal disease who refuse intrapartum antibiotics (despite excellent evidence for their efficacy in virtually eliminating the risk of neonatal GBS sepsis).
As I understand it, though, the law in NSW is that the mother has the right to choose to do anything to herself despite the risk to the unborn baby (e.g. choose an unsafe birth, snort cocaine, refuse antibiotics). It is only after birth that the child becomes an independent legal entity, where we can apply for an emergency treatment order to prevent a parent choosing an unsafe course of action for the child. Of course, we can notify medical neglect prior to delivery, but child protection agencies are powerless to act until the child is delivered (or at least that is my understanding).
The situation would be much simpler if misinformation would not come from the registered medical professionals and interest groups as much as it does. In that case there could be a clear demarcation line drawn which is medical (science based) – thus credible information, and which comes from a questionable source. Since medicine is becoming more and more entrepreneurial, vested interests (and interest groups) produce websites that are closer to the language of advertising (targeting emotions and the irrational) than imparting scientific fact.
Example:
“sympathectomy created imbalance of autonomic activity and functional changes of the intrathoracic organs” – yet it remains a heavily advertised elective (life-style) procedure for sweaty palms and blushing (sic!). If you review the websites of the surgeons advertising the procedure and the literature documenting the effects on physiology, you will have to come to the conclusion that informed consent is NOT the primary objective of the health care provider. (And with most elective procedures this will be the case.)
It would be the duty of the professional bodies to monitor their members.
Sadly, it is medical practice itself that has the credibility/image problem.
TFTD – Well, the Grand Prix employ doctors which isn’t quite the same thing. While I have always depreciated sports which seem to be merely extravagant consumerism – sky jumping for example, and I wouldn’t attend a motor race for any money, my understanding is that the Grand Prix has given quite a bit back to the community because it is a testing ground for safety and efficiency innovations in motoring.
I suppose that encouraging the use of a safe environment (ie, hospital) for childbirth is the only justification for the extravagant facilities (family suites, etc) often provided now. It has always struck me as odd that such things were thought necessarily for a short, essentially happy event, but older ladies with broken legs are allowed to lie on trolleys in the emergency department for days.
In this situation someone has to advocate for the neonate. Adults can choose their own path, however they must make an appropriate decision for their child.