IN CASE YOU MISSED IT

Please be patient when patients have questions

This story was first published in The Straits Times on June 13, 2013

IN MODERN medicine, informed consent is the bedrock of patient care, but not all is well with the process in Singapore. At least from my personal encounters with the health-care system here.

My 82-year-old mother was recently diagnosed with lung cancer. Her doctors offered various treatment options. I decided to put together the best papers on the particular form of cancer involved and really get into the most up-to-date studies available on it. Thus armed, I would sometimes ask her physician certain technical questions.

Though suitably polite, a certain irritability on the part of the consultant involved would be discernible if too many perspectives were posed or technical questions asked. This may be quite understandable given the limited time doctors here have for patient consultation. Also, traditionally, patients or their kin tended to take the doctor's word as gospel truth.

However, it is essential for a doctor to be ready and willing to engage with a patient or his representative, to make sure the patient understands the disease, treatment options and risks. This requires some investment in time and effort to let the patient clarify doubts, and requires the doctor to be willing to let himself be questioned.

Without that engagement, the patient cannot be said to give "informed consent" on treatment.

Informed consent springs from the generally accepted principle in law and ethics that competent adults have the right as autonomous beings to know their own diagnoses and decide on their treatment options. Sometimes practice regulations even specify it. For example, couples must pre-agree in writing on the informed consent form how their frozen embryos will be disposed of if they separate, divorce or die.

In Singapore, the informed consent process usually means the physician informs the patient of his diagnosis; and then discusses the proposed treatment, its risks and benefits and alternative treatments, and the likely outcomes of refusing the proposed treatment plan. The patient, in turn, usually asks questions until he understands enough to make an informed decision to authorise the plan or not.

Traditionally, the doctor's role has been seen as simply apprising the patient of and getting him to understand the pertinent medical facts. Traditionally, also, most patients would accept those facts from the doctor as authoritative.

But today, non-medically trained people can use the Internet to build up deep stores of up- to-date knowledge about their own health issues. Doctors, whether generalists or specialists, may be pressed for time and unable to keep track of the myriad developments in all fields.

Thus the traditional doctor-knows-best relationship with the patient is being altered.

These days, the patient may out-read and out-analyse the doctor on his own condition. After all, there are lots of credible medical resources on the Internet.

For example, PubMed, maintained at the United States National Institutes of Health, brings together citations for medical journals and books. With PubMed, a patient can put together all the best studies ever published on his illness. Peer-reviewed journals also have their own sites. Then there are physician blogs, advocacy sites and patient-run message boards.

But doctors may still frown on the layman's use of such sites for fear he may misunderstand the scientific literature, be bamboozled by advocacy groups, or get ripped off by quack remedies.

But patients who are intelligent and motivated to learn more about their own condition are able to amass knowledge and learn to sieve out unreliable information over time.

Patients also share "war stories" or personal experiences of how to battle a disease online. Some doctors may construe this as the blind leading the blind. In fact, such sharing can convey important experiential knowledge about the real-life impact of the condition, drugs and procedures that doctors use for it.

Think of a patient support group trading stories on how best to cope with mouth sores or hair loss during chemotherapy or discussing what kind of bras are most comfortable - and flattering - after breast surgery.

Or take hormonal therapy in IVF (in-vitro fertilisation): how it may disrupt one's sex life and what to do about it may be discussed candidly online by other women who have survived it all.

The physician may not have all these facts if the information is not crucial to the patient's survival or prognosis. But such experiential and embodied knowledge from those who have been through the treatment can be very helpful to a patient contemplating a decision that best suits her circumstances: go for breast-conserving surgery or a radical mastectomy; opt for hormonal therapy or not; and so on.

The upshot is that physicians should not expect today's patients to passively receive and unquestioningly accept the medical facts they deliver to them. Sadly, however, many clinical encounters have not evolved to embrace this new breed of patient. Some doctors may view a questioning patient as, at best, a time-waster or, at worst, an adversary.

But this would be quite wrong. The best patient is surely one who takes an active interest in his condition and plays an active part in his treatment and recovery.

The physician who is supportive of a patient's autonomous research and willingness to question received wisdom should welcome the patient's initiative.

Of course, this means the consultation will take longer than the routine 10 minutes. Initial consultation after a diagnosis, especially, would have to be lengthy to cover much ground about up-to-date research and statistical odds of survival for each treatment option, and so on.

But follow-up consultations can be shorter. One way to deal with increased patient demand for in-depth consultation is to have nurse practitioners handle some queries, or have educators organise seminars where patients can thrash out common misconceptions besides offering support.

Such operational details aside, what is important is for physicians to embrace a different view of their own role and to see patients as capable inquirers and indeed active and informed partners in their own treatment.

Only by doing so will the patient's autonomy really be respected. Then his consent, if given, will be meaningful and truly informed.

andyho@sph.com.sg

This story was first published in The Straits Times on June 13, 2013

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