Tag Archives: mortality

Empower people with cancer by talking about dying

Tony2

By Tony Bonser

“There’s nothing more we can do for you. Go home and get palliative care.” That’s probably not the best way to tell someone that the treatment isn’t working, but that’s how one consultant chose to inform our son, Neil, aged 35, that he wasn’t advocating any more chemotherapy for his sarcoma. Not only was it untrue – treatment could have done a great deal to improve his quality of life, but it also assumed Neil understood the term “palliative”. This led to him refusing to seek help which would have led to much better pain management.

Nobody told us that our son was dying – not explicitly anyway. We didn’t hear the truth behind the euphemisms because we were in denial. But when he was in hospital and a nurse asked him what he wanted, his reply, that Neil wanted to go home, enabled him to die where he wanted, in his own flat, with his family and his prized vinyls and books around him. Our last memory is of a good death. That is immeasurably important to us.

Family---Sam's-Graduation

Neil Bonser (left) pictured with his family at his sister’s graduation.

Neil was given the chance to say what he wanted very near the end of his life. When is the right time? Whenever the person is ready to discuss it. I really hope we can encourage a society where such conversations are seen as natural and healthy.

If they have such conversations, doctors will sometimes find that the right thing to do is nothing. My wife Dorothy used to take Tess, a woman with terminal cancer, to day-care. Tess had a wonderful relationship with her consultant, so when he told her the cancer was spreading and offered her surgery, she knew him well enough to see that he thought she might not survive it. He also suggested another option: a change in medication. “It won’t prolong your life,” he told her, “but it might improve the quality of it. It’s your choice.”

She chose the medication and lived to enjoy a two-week visit from her son from New Zealand, going shopping and taking him for meals at her favourite restaurant.

Another acquaintance with terminal cancer was very relieved when I suggested that he had the right to refuse another course of chemotherapy which his consultant recommended. The horrendous side-effects disappeared and he was able to enjoy most of his last few months.

Sometimes treatment will be a good option in the later stages of cancer, sometimes it will not. For me, the issue is about empowerment. It’s about more than persuading professionals to be patient-centred. It’s about professionals giving patients and family/carers the knowledge to make their own decisions and the power to involve themselves in meaningful discussions. It’s accepting that a good death can be a success. Such empowerment leads not only to a better death, but to good memories, which can help the path through bereavement enormously.

Tony Bonser’s son Neil died in 2009. Since then Tony has become a writer and speaker on end of life issues, a trustee of the National Council for Palliative Care and a local champion for the Dying Matters coalition in the UK.

 

I will survive… Are you positive about that?

Peter McIntyre

Peter McIntyre

Is a positive attitude about survival useful or appropriate when someone is diagnosed with cancer? Is optimism always an asset as an approach to life, or indeed death?

We all love positive energy and celebrate someone who triumphs against the odds, but for many that is not possible. Cancer can be relentless and pitiless; half of those diagnosed with this disease die from it, irrespective of their determination to fight.

A daunting number of friends and relatives have recently died from cancer; more or less within a year of diagnosis. Their own and family reactions will be familiar to you who work in the field. They staggered under the news. Then hopes rose as they learnt about possible treatments. During a period of maximum engagement, they did their best as patient or supporter to reach the distant shore of survival.

In my unscientific sample however, the undertow proved too strong.

As treatments failed, the patient became exhausted; options narrowed, hope became fragmented. The narrative switched to unlikely new treatments, and eventually a need for some breathing space and a bit more time. The final stages were rapid.

Where do you find resilience?

I am wondering what those of you who apply your skills and knowledge to saving life tell yourselves about those you cannot save. Where do you find resilience you need for the next patient?

It is evident that a positive approach to cancer is not always about winning a battle. Sometimes a cure is simply out of reach. In such cases, treatment and care to achieve the best possible quality of life, delivered with compassion, cannot be ‘failure’.

Certainly, the people I know found real positives in loving human interaction after curative treatment ended.

A cousin who put a premium on his independence experienced a remarkable strengthening of his marriage and family life in his final year.

A relative who died leaving a son under the age of two spent her final days surrounded by love. She and her husband made plans for their son after her death; her father read to her; her brother crossed the world to be with her.

A man in the final days of life asked for a latte and Danish pastry to be brought to his bedside. He and his sister responded with almost ridiculous pleasure to this familiar treat he could neither eat nor drink.

As a journalist, I am aware of my own ignorance. But even the most skilled and knowledgeable lack the power of life and death or the gift of prophecy. Neither cutting edge treatment nor a positive approach guarantees survival.

At a certain stage, a determination by the patient to make the most of remaining life and by professionals and family to deliver treatment and care with compassion offers a route to the happiest possible ending. Better to help the patient to be ready for anything, than to stake all on what may prove to be a false positive.

Heads up: it may be best to do nothing

Simon Crompton

Simon Crompton

 

It’s always strange emerging from the single-mindedness of a conference to breathe the outside world’s unconcerned air. I doubt there was a person attending the British Medical Journal’s recent “Preventing Overdiagnosis” conference in Oxford who didn’t come away with the sense that overdiagnosis and its consequences is one of the biggest challenges facing health providers globally.

 

But beyond the concern of a handful of international experts – many of whom were gathered in Oxford – awareness and concern among the international cancer community seems low. Yes, most of us know that there are risks as well as benefits to breast cancer screening, and that PSA testing for prostate cancer can lead to unnecessary tests and treatment. But does that result in changes to practice? Does every one of us need to sit up and listen a bit more?

The papers presented at the conference certainly suggested “yes”. As keynote speaker Ilona Heath, a former President of the Royal College of General Practitioners, said: “Susan Sontag’s kingdom of the well is being absorbed into the kingdom of the sick, and clinicians and health services are busy ushering people across this important border in ever-increasing numbers. The costs, personal, social and economic, are enormous.”

The issue of overdiagnosis doesn’t just hover over breast cancer and prostate cancer.

The conference heard evidence that it is an issue in melanoma. An analysis of data by America’s National Cancer Institute, presented at the conference, showed that melanoma incidence has been increasing since 1975 while mortality has remained stable, strongly suggesting overdiagnosis.

Or take ovarian cancer. The conference heard about concerns that improved testing with blood tests and ultrasound are leading to increased detection of borderline ovarian tumours that might never present clinically in the lifetime of a woman.

Or thyroid cancer. A population-based study of thyroid cancer patients in Ontario, Canada between 2000 and 2008 shows that this relatively benign cancer is increasing at an “epidemic” rate. The increase seems to be confined to more affluent areas, and closely related to the availability of diagnostic ultrasound.

The suggestion is that, without sophisticated diagnostic techniques, large numbers of people with these diseases would have died of something else without even knowing they had cancer. They might have avoided distressing decisions, painful tests, potentially disabling treatments.

Such interpretations of data can prove controversial. Some evidence is strong, some is preliminary to say the least. But it undoubtedly opens up important questions for all those involved in the detection and treatment of cancers. It asks us to look up from a heads-down determination to track down and destroy cancer, and question whether sometimes – quite often – doing nothing is the best course.

It’s not an easy thing to do. Cancer World will be exploring the issues in its next three editions.