Monthly Archives: May 2016

Dying: what a curious concept

Simon Crompton

Simon Crompton

It’s Dying Matters Awareness Week in the UK – a time when charities and health organisations emphasise the importance of talking about death and bereavement.

Addressing death doesn’t come easy to many of us, particularly those whose job it is to keep people alive, so the awareness campaign is much-needed and deserves to spread internationally. Doctors know that talking about dying with patients has never been one of their strengths. It appears to acknowledge failure (see my Cancer World article on what constitutes a successful outcome), and brings the prospect of emotion in a profession where cool detachment has become ingrained.

But it’s not entirely their fault. “Dying” is a curious concept in the first place. The word suggests a gradual transition from the state of life to a state of death. But people facing terminal illness experience nothing of the kind. There’s either life or death, nothing in between. In fact, dying is often about living life to the extreme – whether that be a good experience or a bad one, over minutes or years.

No one demonstrates this better than Dr Kate Granger – the UK doctor who was diagnosed with incurable desmoplastic small round cell cancer in 2011. Since then, she’s been writing honestly, movingly and humorously about living a life within limits. (You’ll be able to ready my interview with Kate in the June issue of Cancer World.)

Anyone who really wants to understand why talking about death is important should listen to Kate and her husband talking in a video she made for Dying Matters. As a doctor, Kate has come to understand what it means for a patient to take bad news home and live with it every day.

She knows that talking helps, and has found a supportive community on Twitter, where 43,000 devoted followers hear about the mundanities, triumphs and challenges of her life – from baking cakes to changing health services through her remarkable “Hello My Name Is” campaign asking health staff to introduce themselves to patients.

KateGrab2

For people like Kate, who recently tweeted that she is “teetering on the edge of the cancer cliff and about to fall”, dying is an integral part of living life to the full. So for health professionals not to support patients as they explore the prospect of death can deny the possibilities that exist as well as all the challenges.

Being open about dying with patients can also expose dangerous misconceptions and assumptions that both doctors and patients cling to. Los Angeles doctor Ken Murray addresses this issue head-on the issue in the latest issue of Cancer World, in an article that has already prompted soul-searching in the United States.

Almost all doctors, he says, have seen “futile care” performed. Extremely ill patients are cut open, perforated with tubes, hooked up to machines and assaulted with drugs, he says – and what it generally buys is misery rather than life. Doctors know this, and generally would never chose brutal practices such as cardiopulmonary resuscitation (CPR) for themselves or their families.

So how is it that doctors administer them so often? Why is it that quantity of life is valued so much more than quality? Talking honestly about these issues goes a long way and helps patients and health professionals get facts and preferences straight.

Forgetting about the clumsy word “dying” might help. Considering “life left” instead might make all those working in health stop worrying about being death-stopping superheroes and help patients find what they really want.

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One in three of us: why I help spread the word about cancer

 

desiree branovici

Desirée Branovici is one of 42 peer advisors who help spread the word about prevention and early detection of cancer in the Botkyrka area of Stockholm. This is quite a challenging community to reach out to due to widespread economic hardship and language and cultural barriers. Desirée’s own multicultural background and fluency in Swedish, Romanian, Italian, French and English are invaluable assets for this role. Here she explains why she gives up her time to do it.

Years ago, when I was living in Canada, I had a conversation with some friends about cancer. One of my friends said that, according to statistics, 1 in 3 women will develop some form of cancer in their lifetime. The three of us looked at each other and we could all see fear in each other’s eyes: it could be one of us.

What I saw on my friends faces haunted me. Soon after that conversation I promised myself that I will fight this fear with everything I have. At the time I did not have any special knowledge or support for my fight, so I began to read as much as I could about cancer, about health in general. I became aware of how important it is to be informed about cancer. Information helped me address the fear. I started talking to my friends about it, to my work colleagues, to anyone interested and willing to listen.

Years later I moved to Sweden. While studying SFI [Swedish for Immigrants], a cancer survivor and project leader, Arja Leppänen, came to our class. She told us about a new cancer awareness project that she was leading in the nearby Botkyrka area. We could help spread the word about what we can all do to reduce the risks of cancer.

I was excited to have support and guidance from our municipality (kommun) to educate myself and also to reach to other people and help them. Our training was very interesting. The professionals from the Regional Cancer Centre were extremely helpful and engaging. They were happy to answer any questions and ready to follow up on our suggestions. We were given tools such as flyers to reach out to the many different communities in most spoken languages, and also our own personal cards. Arja and all the other people involved were always ready to help us with anything we needed.

“Understanding how a specific culture deals with sickness is important”

Reaching out to people from so many different cultures is no easy task. Speaking different languages and mostly understanding how a specific culture deals with sickness is important. Some cultures are harder to reach out to than others, but I find that a casual approach to the issue always works. For example, talking about healthy food and lifestyle is a subject that anyone is willing to discuss. Who doesn’t want to be healthy and happy?

I also like to talk to people about exposing themselves to unnecessary chemicals. I always get people’s interest and commitment to be more aware of what they are putting in their bodies and to be pro-active about their health. I always try to make them aware that a body well taken care of will help you win any fight, whether you are fighting a flu, an addiction or cancer. If it happens to one of us that has to fight this battle then one of us will always be there to help you make it through.