There are no secrets between us

“Don’t tell her.”

The old widow with incurable cancer had been hustled out of the room by her other children, leaving her eldest daughter, whose eyes were hard and flat. The next few minutes are usually quite easy to anticipate: ‘The patient is a very pessimistic person’; ‘I want her to keep her fighting spirit’; ‘I don’t want her to know, she will think of suicide’; ‘Her third brother’s son, a nephew now working as a doctor in the USA, doesn’t want her to be told till he is back in three months time’.

The above patient is composite and fictional, in the interests of the sanctity of medical confidentiality. Nonetheless, the actual scenario does play itself out quite regularly in the hospitals of Singapore. How does a physician manage a request from a family member not to disclose a diagnosis to the patient involved?

Little joys

Oncologists are often incurable optimists. I suspect that most of us have rather sunny dispositions, contrary to what many colleagues outside this discipline might think. It is true that many of our patients have terminal disease, but certainly the proportion is not as high as one might think. In some oncology outpatient clinics, perhaps over 70% of patients have curable or cured disease. At the same time, even when cure is not be an option, we optimists are able to assign value to a wide variety of little triumphs. Here are some of these little triumphs that I have imagined – if you think these stories are based on real events and characters, you think wrongly.

The red pill or the blue one?

I break for chemotherapy, and so can you.

It may surprise some, but there is often no definitive standard of care for those individual patients who vary from the Olympian athlete profile of the typical clinical trial participant. This is true of all fields of medicine, from anaesthesiology to trauma care. To therefore discuss the varied options requires a Sisyphean mental effort to make sense of all available data in the light of individual circumstances.

Many situations demand some improvisation. Consensus guidelines may be idols with feet of clay. There really is little purpose in recommending a cocktail of six different medications, if the little old lady staying alone is having problems with her eyeglasses, and thus prone to mixing up the red and the blue pills. Given inevitable modifications of best practice, a discussion of options is usually required for most patients.

Difficult days

Some days in the outpatient oncology clinic can be wonderful. All seems to be going well. Mak-ciks are thrilled that their dreaded breast lumps are shrinking with chemotherapy. The twenty year old girl with a shock of green hair comes in smiling with a new boyfriend, her days of ABVD-induced alopecia long past her. It’s all smiles and quiet satisfaction, and little is demanded of me, except possibly endless signing off on forms.

And some days are more difficult.

“Your cancer has returned”.

Four words that can and will change the lives of some who thought they had escaped the grasp. Now there is advice aplenty on the Internet after emotions have cooled. But even the most stoic of souls betray a tremor at that moment in the consultation room.

Though it be honest, it is never good
To bring bad news; give to a gracious message
A host of tongues, but let ill tidings tell
Themselves when they be felt.
— Antony and Cleopatra, Act II, sc 5.

Certainly for myself and for most doctors, disclosure of relapse is difficult (ranking just below a recommendation of best supportive care!). There is a brew of fear, distress, paralysis and anger in the air, and it would be silly to say that we are not in some way affected by the news we break. Indeed, at times, the anger is directed towards the oncologist, whether passively or aggressively. No doctor likes to talk about unhappy events; it is always much more pleasant to introduce exhausted mothers to their squalling new babies, or to announce to an audience that an aortic aneurysmal repair has been life-saving. Awkwardly done, the entire episode can be deeply scarring, a Caliban struggling to communicate with a terrified Miranda. Two worlds with attendant values and cultures meet at that moment.

Done with skill and professionalism, it has the chance to alleviate the inevitable distress of a difficult and unsatisfactory outcome. It is not uncommon for oncologists to be consulted by their fellow physicians in the communication of bad news. It is a duty and a service that we bear with some grace, and possibly a little quiet pride in the skill.

Be still sad heart and cease repining;
Behind the clouds the sun is shining.

– Longfellow

Time limit

At some unavoidable point during the course of a relationship with most patients, the fateful question will be asked, “How long do I have to live?” Should there be a genuine wish to know, an honest and compassionate reply is the least deserved.

I shall set aside the point that at least three in ten of our cancer patients will be successfully cured of their cancer – thus for whom a Singapore life expectancy table dated 2/08 hopefully holds the answer. The remaining seven ask a question that is strangely difficult to answer truthfully to their satisfaction. We flounder between the uncertainty of statistical certainty, or the certainty of an individualized uncertainty.

“If a man will begin with certainties, he shall end in doubts: but if he will be content to begin with doubts, he shall end in certainties.”

— Francis Bacon.

A median survival is a strangely addictive answer for those among us who crave numerical certainty. Yet the median survival is only just that, a line carved out in the dirt dividing the taller half of the class from the shorter. Stephen Jay Gould famously wrote, “The median is not the message“. He would know, having outlived his median survival of eight months (with a diagnosis of mesothelioma) by some twenty years! Yet for every eminent Professor Gould, there is certainly one less fortunate and doubtless less vocal mesothelioma patient who would survive far less than eight months. So one must ask to whom I am doing a favour to in conveying a median survival of eight months. In any case, I always hope (perhaps unreasonably) that my patients are on the right side of the median!

An individualized prognosis by an oncologist (“based on your experience, doc…”) may seem a correct prescription. Unfortunately, when our crystal ball gazing abilities were actually put to the test, we cancer physicians didn’t do too well either. Specifically, almost one in two prognoses by experienced oncologists were reportedly off the mark. Worse, increasing professional experience did not correlate with better predictions so I don’t have anything to look forward to with the passage of time!

So it’s a difficult choice – living up the infallibility ascribed to physicians, or to offer only the vaguest of predictions, with assorted bromides?

“Hope never abandons you, you abandon it.” – George Weinberg.

And that brings us to the next topic for another day.

An inspiration

The Cheerful Oncologist has departed the Internet, no doubt for happier shores. His absence has been profoundly felt though, perhaps nowhere more so than among his fellow colleagues in oncology. Bereft though we have been of the C.O.’s wisdom, it is true that vita contin git, vive com eo. While awaiting his return, I pen my own stories of hope from another world far away from the C.O.’s own. Here in Singapore, these tales are inevitably coloured very differently from those of our admirable colleagues in the United States of America. One is nonetheless reminded of Osler’s words about the solidarity of physicians.

Of no other profession is the word universal applicable in the same sense. The celebrated phrase used of the Catholic Church is in truth much more appropriate when applied to medicine. It is not the prevalence of disease or the existence everywhere of special groups of men to treat it that betokens this solidarity, but it is the identity throughout the civilized world of our ambitions, our methods and our work… To prevent disease, to relieve suffering and to heal the sick – this is our work. The profession in truth is a sort of guild or brotherhood, any member of which can take up his calling in any part of the world and find brethen whose language and methods and whose aims and ways are identical with his own.

And it begins

“The only journey is the one within” – Rainer Maria Wilke