Caring or curing: the importance of being honest

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.

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?

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.

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.’

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

A personal account of life with terminal cancer

TALKING ABOUT DEATH AND DYING – We end this series today with an account of one man’s experience of cancer.

Bowel Cancer? Me? How could that be? I’ve been so fit throughout my life, eaten porridge, been as regular as a clock. My diet was always well balanced. There has been no history of cancer in the family. Cancer? Me?

Bleeding led to a CT scan, and, after that, there was no doubt about it. I was told by the surgeon that bowel surgery was very successful and so about eight years ago, I had the first operation. But this turned into eight, each worse than the previous one. And, I’ve ended up with a bag and terminal cancer.

A couple of personal details will set the scene. I am now 72. I’m married and have twin sons who are now about 40. I’m a retired academic from Swinburne University, where my last position was as director of the doctorate in business administration program.

Why so many surgeries you ask? Every six months after the first operation, the cancer kept on reappearing at the point where the bowel was joined.

After the fourth one, a spot appeared on my liver. I had surgery for that. While lying on the gurney after the operation and just after coming to consciousness, the surgeon came up and said, “Sorry, there’s nothing we can do for you. You have so many spots on your liver, I didn’t know where to start.”

Bad news indeed, and delivered with such sensitivity!

After being discharged from the hospital I recovered quite quickly but one day I found myself in a panic attack about dying. My wife knew. My sons knew. But who to talk to? I mentioned this to a friend who suggested I ring Dying With Dignity Victoria for a talk. I was so panicked that I did just that.

The secretary, Rowena White answered the phone and I poured out my woes and debilitating fear to her. She listened with astonishing care. She didn’t interrupt my tearful, fearful statement. And she sympathised in clear terms with astonishing understanding. When I ran out of words, she indicated she would get Dr Rodney Syme, chairman of Dying With Dignity Victoria, to call me back.

I didn’t imagine he would. To my surprise he did, twice. I was not a member of the organisation, just one more person in despair. I met with Rodney, who brought me to the inevitable position that dying is part of life, we just don’t know when that’s going to be. He said that preparation was the key. Prepare to be able to make a choice when the going gets tough.

That down-to-earth sensible talk helped me to shift gear into acceptance of the inevitable. I was also having a couple of heart issues so I asked my heart specialist whether any of the heart pills I am taking would enable me to end my life.

Unwilling as he was to say so, he nevertheless told me that one of the pills I was taking would indeed end my life. I would go to sleep and then my heart would stop.

For that bit of information I am eternally grateful. My abject fear of death ended at that point. The pills gave me choice. I was in control of my life and that would save me from palliative care and people who could keep me alive but in a terrible state.

But I also came to understand that it was an offense for anyone to be near me or assist me in any way to depart this world because of debilitating painful illness. How silly is that?

Politicians, praise be not all, but unhappily most by far, are unwilling to develop policy for physician-assisted death in the face of terminal illness, which is causing great suffering. And most of the physicians I have dealt with are unwilling to talk about it. This is also true of my oncologist. He didn’t want to discuss anything about euthanasia.

Good Lord, we don’t let that happen to our cats and dogs but we allow it with humans.

My loving little dog died in my arms a few years back. Yes, I wept, but he was saved from suffering. Politicians, of any persuasion, fearful of the next election, don’t take into account those with terrible, painful, terminal illnesses. And it’s not just cancer, but motor neurone disease, Parkinson’s disease, Alzheimer’s and so on.

It turned out that I started bleeding from the bowel six months after the liver surgery so the cancer was back in the bowel and I changed hospitals and surgeons. I would’ve bled to death had I not had surgery. The cancer was back on the join yet again. So there was nothing for it but to have more surgery. This time they found that there were two spots on my liver but nothing else. The first surgeon had got it very wrong!

I had both bowel surgery and liver surgery at the same time. But pathological examination of the removed bowel showed there was a large cancer which no one knew anything about. It was very flat, very thin, and was not detected by the CT scans. That explained why the cancer kept appearing on the join. It was upstream of the join. Fortunately that ended the bowel cancer.

I then had chemotherapy and painful as it was and still is, that seemed to end my problems. But cancer is a sneaky beast. I had a follow up CT scan after the chemotherapy and there were two spots on my liver.

So in March this year I had yet another resection. It was a difficult operation because of the placement of the spots. Within three weeks of the operation I contracted septicaemia and had invasive thoracic surgery for that. I recovered.

But in June this year I had a follow up CT scan. There were spots on my liver, lungs, and most probably stomach. I was told that there was no more surgery to be had.

That’s the way things are. I don’t know how much longer I will have to live, months, a year.

But I am at peace. I have all that I need to depart this world and when the going gets rough that’s what I will do. My wife and family are fully informed about this. I have told all my friends. Some are shocked, but by far most say I am courageous.

I don’t think about the end, nor do I look forward to it. I have led a most fortunate life. I am surrounded by family and friends. Sometimes we cry together for what is ending. Sometimes we laugh.

After these experiences, I have three pieces of advice. First, get a second opinion. For all my university degrees, I simply believed the first surgeon. I never asked for a second opinion.

The other is for politicians. Don’t be so lily livered! Take a stand against suffering and most particularly those illnesses which are awful and go on and on. Terminal is just that. So let people end their suffering.

And finally, I have advice for the readers of this article, join the cause and support change. Join an organisation such as Dying With Dignity as soon as possible.