Caring or curing: the importance of being honest

Patients want their doctor to tell them the truth. Michal Porebiak.

TALKING ABOUT DEATH AND DYING – Why is it we don’t talk about the greatest inevitability in our lives? We explore the consequences of this silence in this series, today considering the issue from an oncologist’s point of view.

Mrs Jones is a delightful 75-year-old church volunteer diagnosed with cancer. Recently, she required surgery to remove fluid from her chest cavity. Much to her relief, she returned home after a prolonged recovery.

Some months later, the fluid in her chest was drained again but the progression of disease was obvious. Encouraged by her family, she decided to try chemotherapy. Her stated intent was that she wasn’t yet ready to die and would do anything possible to beat her cancer.

She felt buoyed by the first cycle of chemotherapy, but the second landed her in hospital – with all the side effects she had been warned to expect.

She left but spent the next two weeks in bed, weak and washed out. But her original intent remained strong and when it came time for the third cycle, she decided not to reveal just how ill she had been feeling.

Image courtesy of Melissa Bloomer

She feared, reasonably, that no one would entertain giving her more chemotherapy, if they found out the truth. So she went on to have more treatment, which destroyed her body’s meagre reserve. For three days she was delirious, unable to recognise her own children, looking a sorry shell of her former self.

Resuscitated with antibiotics and fluids, she improved. But scans showed her cancer had progressed. Doctors are notorious for getting the prognosis wrong but in my estimation, she had only a few weeks to live.

Talking about it

As I sat by her bedside the first day she could talk coherently, imagine my surprise when she asked me what chemotherapy I was planning next. My first thought was that she was still delirious.

I thought of firmly stamping out the idea of further chemotherapy in her mind, pointing only to her recent near-death experience. But it seemed odd that an intelligent woman would behave like this.

So instead of answering her question, I asked her, Mrs Jones, what do you expect more chemotherapy to achieve?

To prolong my life, of course, she responded, looking curiously at me.

This is the oncologist’s dilemma – how to tell the truth without extinguishing hope. How to tell Mrs Jones that her lifespan was limited, that further chemotherapy would be futile, or even hasten death, and that her remaining days would be much better spent cherishing life than fighting off unnecessary toxicities.

How do you shine a light on frankly unrealistic expectations without coming across as uncaring?

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Patients like Mrs Jones abound in practice. Many are shocked when confronted by the news that there’s no other active treatment for them. Some claim that they’d never been told this could happen, others say they never expected this to happen to them. Many become angry, many others depressed.

Family members accuse the oncologist of giving up: Once you said that, Dad just gave up and died, one tearful daughter sobs.

Whatever you do, don’t tell my wife it’s serious, implores a husband.

It’s no wonder that faced with such intense emotions, sometimes it seems easier to bow to a patient’s wishes and write up some more chemotherapy than have a somber discussion about life and death.

Known unknowns

It’s my experience that most patients recognize when they’re seriously or incurably ill. Denial is a word that’s much bandied, but what I see is that many factors determine the readiness of a patient to voice publicly what he or she senses privately.

These factors may have to do with culture, religion, a sense of responsibility or a deep personal philosophy about how one ought to conduct oneself at the end of life.

All these factors are to be respected. But I have yet to come across a patient who, no matter what the circumstances, doesn’t appreciate compassion, empathy and honesty from a doctor.

But what does honesty mean in this context? For Mrs Jones, does honesty mean telling her bluntly that chemotherapy is a waste of time, or that she should open her eyes to her poor prognosis?

You might recoil at the thought but plenty of patients find themselves on the receiving end of blunt facts that terrify them and their loved ones.

So I think that honesty must be tempered by that other vital quality in medicine, empathy. Empathy is the art of putting yourself into another person’s shoes, to imagine what it must be like for the patient going through the experience.

Empathy is difficult to cultivate and when time is short and queues of patients long, it gets even harder. But Mrs Jones and patients like her need their doctor to say, ‘I can see how eager you are to keep fighting. Let’s discuss how I can help’.

Patients want the truth from their oncologist and they are entitled to the whole truth or just part thereof. One patient likes counting the exact number of spots in the liver, another wants the facts in broader brush strokes. One wants to know what a 10% survival rate means, another just whether he will be around this Christmas.

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Degrees of truthfulness

If I had thought in my earlier days that there was only one kind of truth, what I see clearly now is that even truth comes in different shades. And it is my obligation as a doctor to know my patient well enough to tailor the truth to the individual.

I don’t lie to patients but I also don’t feel compelled to make a reluctant patient an expert on their diagnosis or prognosis. With a good line of communication, things tend to work out.

There seems to be a general sense within and outside the medical profession that good communication skills are inherent, that people have it or they don’t.

Medical schools implicitly support this notion by interviewing school leavers with an eye to the way they communicate. But teaching doctors better communication isn’t so much a task as a journey.

Some of the best hospitals around the world are now paying attention to the subject, once considered ‘soft’, because they are listening to the tide of patients demanding better communication as a key component of better care.

Doctors understand that their satisfaction is tied to patient satisfaction; hospitals realize that better communication leads to fewer complaints. Open, compassionate and empathetic communication is good for doctors, good for patients, and society should expect nothing less.

A wish fulfilled for Mrs Jones

So what happened to Mrs Jones? She told me in private one day that the main reason she had been fighting so hard was to see her first grandchild get married in six months’ time. Without my saying anything, she added, ‘But I am beginning to think that’s not going to happen.’

Often people hang on for one last thing, for Mrs Jones it was a wedding. kirinqueen

With her permission, I spoke to her grandson. He revealed he’d been considering an earlier wedding but didn’t wish to upset his grandmother by sharing his concerns about her failing health. It turned out that not only Mrs Jones, but her entire family, quietly realized the seriousness of her disease.

Mrs Jones went home to preside proudly over the wedding of her grandson some weeks later. Her final wish fulfilled, she signed an advance care directive, which meant that when she fell ill within the next week she received no heroic measures but was allowed to die peacefully.

One of the privileges of being an oncologist is working closely with skilled people who routinely give bad news and manage end-of-life care sensitively while retaining the admiration and loyalty of their patients.

What I see as a common thread between these people is that they’re always striving to do things better and that they see medicine as more than a job, they see it as a vocation. And if your vocation is to first do no harm, you will always look for better ways of telling the truth.

This is the third part of Talking about death and dying. To read the other instalments, click on the links below:

Part One: Deadly censorship games: keeping a tight lid on the euthanasia debate

Part Two: End of the care conveyor belt: death in intensive care units

Part Four: Death and despair or peace and contentment: why families need to talk about end-fo-life options

Part Five: Body or soul: why we don’t talk about death and dying

Part Six: Planning your endgame: Advance Care Directives

Part Seven: A challenge to our leaders – why don’t we legalise euthanasia?

Part Eight: A personal account of life with terminal cancer