My life is fast approaching the way I would like it to be. With my time being divided equally between my passion as a Nature photographer and my profession as an oncologist.
It also explains why the bulk of forwarded links from friends and well wishers alternate from heart-warming images of the wonders of nature to stone cold facts pertaining to current medical practice.
The seeds for this particular blog were sown by a recent message containing one such link to an article that appeared in the Guardian titled: ‘How Doctors Choose to Die’. It was about how doctors with terminal illnesses prefer to avoid aggressive palliation having experienced first hand the adverse impact it has on the quality of life.
I come from a long line of doctors. 5 generations to be precise, (maybe more as my ancestry beyond that is yet uncharted). Lineage aside, in my lifetime alone the advances in medicine have been nothing short of mind-boggling.
I recall a highly animated lecture delivered to us as medical students by a senior Surgical Professor on breast cancer. This was way back in the 70’s and the bone of contention was one Robert McWhirter, an Edinburgh-based radiotherapist.
In an era where the radical mastectomy was the absolute gold standard treatment for early breast cancer, McWhirter had the temerity to publish a paper advocating a less aggressive surgical alternative.
The terms ‘scandalous’, ‘charlatan’ and ‘cheat’ were a few of the numerous derogatory terms that peppered the hour-long talk berating the Scotsman and his procedure.
Today, it’s common knowledge that even modified versions of the radical mastectomy are infrequently performed. A simple excision of the lump with axillary node sampling is the present day standard of care. To put thing into perspective for the uninitiated, it’s a surgical option that renders even McWhirter’s procedure a Goliath in comparison.
Bailey and Love’s, Short Practice of Surgery is a delightful and much revered surgical textbook for undergraduate medical students. To say that it has withstood the test of time is a gross understatement, the images below depicting three of its editions.
The one on the top is a 1944 reprint of the sixth (1943) edition and belonged to my Dad. The one in the middle and on the bottom are the 1979 reprint of the seventeenth (1977) edition and the twenty fifth (2008) edition that belong to me and my son respectively. (Isn’t it great to be able to break English grammar rules and get away with it?!)
The differences in size alone bear testimony to the rapid rate at which medicine has progressed. In fact it wouldn’t be far from the truth to state that even as we speak a whole range of medical frontiers are being simultaneously breached.
In the midst of this bewildering sea of change, thankfully, there still remain a few constants.
Right from the dawn of medicine as we know it, from the Egyptian’s unsuccessful usage of crude instrumentation to cauterize breast tumors and Hipocrates’ and Plato’s ill-conceived ‘black bile’ theories on the incurability of cancer through to the present high-tech era and, I’m sure, beyond, the principles and ethos that dictate the surgical management of a patient have remained rock solid and unchanged.
Beautifully packaged in a few lines of prose, these principles can be found in the opening pages of the aforementioned Bailey and Love’s surgical textbook.
It was the first thing I read when I opened my newly acquired copy a little over 40 years ago and it made such an impression that the words are still fresh in my mind as if I had read them yesterday.
It’s in the form of a short prayer called ‘A Medical Litany’ by Sir Robert Hutchinson who, as the legend goes, never tired to recite it to his two young medical students, Hamilton Bailey and McNeill Love.
“From the inability to leave well alone;
From too much zeal for what is new and
contempt for what is old;
For putting knowledge before wisdom,
science before art, cleverness before
From treating patients as cases; and
From making the cure of a disease more
grievous that its endurance,
Good Lord, deliver us.”
Profound words indeed with each phrase potent with meaning, but for today I’d like to focus on the last three lines.
The number of ‘cancer cures’ since I first began practicing oncology over 30 years ago have increased exponentially. However there still remain a significant number of patients that will either present at or reach a stage where they are deemed incurable. At which point ‘palliative’ treatment kicks in and a whole new can of worms get to see the light of day.
To begin with, when is a patient deemed incurable and if so, as the treating physician, what treatment can we and, more pertinently, should we offer?
About a decade ago a 13-year-old girl was referred to me for palliative treatment. She had a massive tumor that literally filled her abdomen and pelvis and was declared incurable by the doctors at her hometown. It turned out that she had a germ cell tumor of the ovary. A condition that used to be fatal in the past but with modern day advances in chemotherapy is now highly curable. What was deemed incurable by one physician was considered totally curable by another. In fact she is alive and disease free at the time of writing this and has even been blessed with a baby boy thanks to fertility sparing surgery.
We are all humans and no matter how hard we try and however noble our intentions we tend to let our own personal experiences influence our decision-making. As rule of thumb the experience of a physician usually has a positive impact on the decision making process.
But that is not always the case.
Early in my practice, sometime in the late 80’s / early 90’s I had a spate of breast cancer patients who underwent a mastectomy (that was the standard of care at the time) and later went on to develop supraclavicular nodes (metastatic lymph nodes in the lower neck). They were referred for adjuvant treatment that included radiotherapy. Those were the days of cobalt therapy as the more precise linear accelerators were not yet commercially available. Every patient, without exception, suffered tremendous radiation burns to the neck and chest and eventually went on to die miserable deaths.
So when a few weeks later the maid of a well known general practitioner was referred to me with the same problem, not wanting her to suffer like those before her, I suggested that she consider avoiding definitive therapy and opt for symptomatic treatment only.
I am relieved to say that another opinion was sought and, contrary to my advice, the patient underwent aggressive adjuvant treatment that included cobalt-based radiotherapy. Though she did have a few untoward symptoms she recovered fully and went on to live a normal life for years thereafter.
We live in an age where there are guidelines and protocols for everything. And palliative options for terminally ill patients are no exception. So should doctors adhere strictly to the guidelines and leave their own personal opinions out of the equation?
In the past few decades medical researchers and pharmaceutical companies have gone hell for leather investing billions in both man-hours and dollars. As a result of which there are hundreds of therapies out there with varying amounts of efficacy for a number of life-threatening diseases including cancer.
Many of those products have been truly path-breaking and have significantly altered the quality of life of many a seriously ill patient for the better.
A classic example is of the drug ondensetron.
Nausea and vomiting is without a doubt one of the most debilitating side effects of chemotherapy. When I was training to become an oncologist, antacids and drugs like perinorm were the only weapons against this dreaded problem and were, by and large, ineffective.
Then in 1990 ondensetron was launched as an anti-emetic and its effect on chemotherapy induced nausea and vomiting was nothing short of magical. Patients who would be vomiting their guts out sometimes for weeks post chemotherapy now enjoyed a significant improvement not only in the duration but also the severity of the symptoms that are often reduced to a mild to moderate gastric discomfort for a couple of days.
The problem was the drug was expensive. Rs.5000 per vial, requiring at least 3 vials a day for 2-3 days. Remember this was in the nineties, and if one added the actual cost of the chemotherapy drugs and hospitalization it worked out to a lot of money.
Fast forward 25 years. One vial of Ondensetron can now be got for Rs.10 – Rs. 15. I’ll leave it to you to do the math!
It’s difficult to point an accusing finger at the pharma companies. The molecule exists because of the millions of dollars spent on its research. And justifiably that money has to be recovered, and then some, to make it all worthwhile.
There are an equal if not greater number of drugs however that, even though they have not really lived up to what was expected of them, are still out there in the market with FDA approval.
I have lost count of the drug launches I’ve attended where entire sessions are spent presenting complex statistical data that led to their approval for use in terminal cases of a particular cancer. Only to have a measly expected survival benefit of a couple of months at best.
Add to that the massive cost, the hospitalization time and drug morbidity and one is often left wondering why they are ever accepted by patients leave alone offered by treating physicians.
Let’s take a hypothetical case of a middle-aged man who is suspected of having an incurable cancer and whose life expectancy is between 6 months to a year.
Let’s also assume that we have gone past the first steps of confirming the diagnosis and the fact that the condition is indeed incurable.
Three factors need to be considered.
- Quality of life.
- Prolonging life expectancy, and,
- Cost of therapy (especially for the vast majority of the Indian population)
It has been my experience, surprisingly, that as a rule patients do not follow the above order in their list of priorities. Most will first want a way to prolong their life expectancy followed by wanting to know the cost involved. More often than not it is I that will have to bring up the issue of the expected quality of life with and without treatment.
As a physician despite the decades that I have been in active practice I still have a problem breaking the news to the relatives and patients. I know this may sound weird, but I almost feel guilty to be the one that made the diagnosis. And, as part of assuaging that guilt complex I am often tempted to offer some of the therapies that the so-called ‘guidelines’ offer knowing full well that they will in all probability be unlikely to be effective.
This will be in the form of targeted therapy, chemotherapy or radiotherapy; treatment options that I do not undertake myself but refer to another specialist. So personal gain can safely be ruled out as a motive. Also, the fact that these therapies are officially vetted by the medical fraternity make medico-legal liability a non-entity.
From a patient perspective most are relieved to be told that some form of therapy exists. I can recall a number of patients I have advised not to take any treatment, other than those aimed at alleviating symptoms. Many have gone on to be treated aggressively by some other physician and despite spending a fortune not to mention the additional hospitalization and treatment morbidity have died in the normal course of events. ‘I told you so’ be damned, some patients have even gone to the extent of admonishing me and praising the other physician: “At least the man tried so hard…”!
Coming back to the article in the Guardian, when faced with a terminal illness different individuals will have differing preferences as to the lengths they would like to go to prolong life. We need to respect that.
That being said, there are plenty of patients out there with terminal cancer that are surviving with an excellent quality of life that has been significantly prolonged thank to palliative care.
Any which way you look at it – morally, legally, financially or medically – the bottom line here is that there is no right or wrong way of treating a terminally ill patient.
On one hand are a long list of therapeutic options for any given situation that, although having the stamp of approval of the medical community, in reality differ hugely in terms of efficacy, cost-effectiveness and safety. And on the other hand is the patient with varying degrees of desperation to survive longer and yet be symptom-free.
As far as I’m concerned, after all the above ‘important’ considerations are done and dusted, I guess the final reckoning eventually boils down to those last three lines of Sir. Robert Hutchinson’s ‘Medical Litany’,
“From making the cure of a disease more
grievous than its endurance,
Good Lord, deliver us.”
Mark Pereira says
Wow. Well written, personal and touching. Continue my friend… do not stop.
Many thanks, Mark!
Carmen Kagal says
I love your nature columns, but it’s wonderful to have a medical article once in the while. I personally am against all these heroic measures to prolong life.Ha! All very well to say this at the comfortable age of 91!
Thanks A. Carmen. Not ashamed to admit that you are one of my heroes! You rock!!
Neville K. says
Well said Doc! I really enjoyed that.
I am still a young kind of healthy soon to be 60 year old. And often fear that if I were to have a terminal illness I rather go quicker than suffer and feel humiliated.
Quality of life is so important, rather than just drag it on.
It’s a shame that society and goverments consideration for euthanasia is still taboo. But then that’s a different subject.
Thanks Neville. I agree. Euthanasia is a scary subject, especially in today’s day and age where it can so easily be abused if legalised. But even in its absence there are still options available that give individuals some control on how they eventually prepare to face their Maker.
Jaggi malkani says
Brilliant..have passed it on to friends..
Diana Demello says
Well written,Ian, with clarifications on the subject in question,options & so profoundly educative -Congrats-by the way I observed a familiar name in line of comments- Carmen Kagal(aunt)- is she not Carmen D’Souza I knew in St Xavier’s College-your mother, Mercia’s sis?-It was a pretty quick recognition when you addressed her as A.Carmen.
Thanks Diana. Yes. She is the same Carmen who was my mum’s younger sister. Even today if I want something I wrote edited she is still one of the first persons I go to!
Diana Demello says
Yes she excelled in English literature-do convey my regards to her-I hope she recalls who I am-last time I met her was in Dr Victor Rodrigues’ dental clinic,Colaba
Diana Demello says
She excelled in English literature-the last time I met her was in Dr.Victor Rodrigues’ dental clinic,Colaba after several yrs.-we recognised each other very easily-I do hope she recalls …..
I’ll be sure to tell her. I’m sure she will remember. 🙂
Donald Lobo says
An excellent, insightful and very personal article, Ian. Very often the conciencious physician is in a quandary. Should we be aggressively treating here or should this be best left alone? Sometimes the way becomes clear when we ask ourselves the question, how would I treat if this happened to a close family member, or myself for that matter?
Well written! Gave a lot of food for thought.
Thanks Donald and I fully agree with you about treating all patients as if they were your own family member.
Lucio Fernandes says
Words of wisdom from my great buddy and partner in crime from our days in the early 80s
At Sion Hospital and Tata Memorial Cancer Hospital Bombay.
Skilled surgeon, passionate wildlife enthusiast and photographer
Above all an honest, ethical doctor and human being
Thanks Luce! Those days at Sion and Tata were really something weren’t they?!
Anil Gadre says
Thanks Anil. 🙂
Maya Ann Pinto says
A comprehensive presentation Ian. I love the composite picture you have given of such a difficult time in a human beings life. The impact of all the dedicated years spent practicing ethically shines through. Love the balance of nature and work you have achieved. Proud to he your friend.
Thanks Renaldo, that was beautifully put. Must admit it feels like a bit of dust just flew into my eyes! The distances notwithstanding, look forward to enjoying more good times with Aparna and you.
Laxmi karnik says
Dr Ian, it was really an excellent article for me as a layman to understand. I always wonder, is it worth treating cancer and extending ones life ( after retirement), when most of us have already achieved or finished our aims in life. Is it really worth spending so much money and bear the pain.
Thanks Laxmi, I’m glad you liked it.
I’d like to make a clarification.
When faced with a terminal illness individuals will have vastly differing opinions as to the lengths they would like to go to prolong life.
We need to respect that.
There are plenty of patients out there with terminal cancer that are surviving with an excellent quality of life that has been significantly prolonged thank to palliative care.
But we need to remember that no two cancers are alike and what worked in one case may actually have no effect, or even deleterious to another.
There are no clear-cut ‘rights’ or ‘wrongs’ here. Just as surely as there is no way to predict outcomes with absolute certainty.
A realistic projection (but the medical community) and acceptance (by the patient) of the extent to which palliation is possible will go a long way in making as correct a decision as is humanly possible.
Pervin Contractor says
Dr your article was written with passion,humanity,wisdom and reality. The old adage “you are not educated unless you know to feel for others”.How many of us today follow this feeling of values. Congrats on this article it will always be treasured
Thank you for your kind words, Pervin.