We mustn’t lose sight of the importance of good communication at the end of life
It was heartening to see Helen Jamison’s article in The Independent yesterday. If you missed it, Helen wrote a moving article about her mother’s death, and the recent controversy over the Liverpool Care Pathway.
This was great to see, because here was someone who was prepared to use what must have been such a difficult personal experience to highlight issues which are so very important.
As she wrote,
Given the fact that death will affect each and every one of us, we are surprisingly bad at talking about it…
Several times I tried to get information about what would happen, from all the places you might expect, but none of it cut the mustard. It may be difficult to predict exactly what will happen in individual cases, but we weren’t even told about what might happen and how to prepare for it. Even when it was staring everyone in the face, there was little mention of the elephant in the room.
Like Helen, at Cancer Research UK we strongly support the need for good palliative care, as well as research into new treatments to save and extend life. And, like Helen, we fully understand the value of good clear communication even about painful issues such as death and dying.
The evidence on physical activity and cancer were discussed
As regular readers will know, we were at the annual National Cancer Research Institute (NCRI) conference in Liverpool last week.
We blogged daily updates from the conference (here’s day one, day two, day three and day four), but a couple of the sessions merited a deeper look. So here’s a write-up from a session that may resonate with many of our readers – the effects of exercise and body weight in people who have had cancer.
Although it’s certainly not a cast-iron guarantee against developing the disease, a healthy lifestyle can help to prevent cancer – the latest estimates suggest that more than four in ten cases could be prevented through lifestyle changes.
But the effects of keeping a healthy lifestyle are less well studied among people who already have the disease. The NCRI session looked at the latest evidence, and what it means.
Cancer Chat is a place to share experiences and information about cancer
Cancer Research UK’s interactive discussion forum, Cancer Chat, has just relaunched, bringing a whole host of new interactive features to its 6,200 strong community.
The forum is a place where people affected by cancer can share experiences and information, and is open to anyone to discuss any aspect of the disease, from symptoms and treatment, to living with cancer or sharing a story. It’s a place to talk with others, simply see what people are discussing, or search for relevant information.
We’ve been listening to what the Cancer Chat community want, and now members can private message, personalise their profiles and search for discussions about a specific cancer type.
With 275 new users every month and 13,000 messages posted this year, Cancer Chat is continuing to grow and provide vital support for cancer patients in the UK. The forum has proved to be an important space for people like Tony Songhurst, a bowel cancer patient, to help them cope with their experiences.
Some people may find it difficult to cope after cancer, but support is available
Life during cancer treatment can be tough, and it takes determination and resilience to get through most cancer treatments. But what happens when treatment finishes?
For some, life returns to normal. But many others struggle following the completion of their treatment, and a common response is actually one of feeling alone.
From being a regular at the hospital, all of a sudden people can feel they’re cast adrift without the support and assurances of the healthcare professionals. And they’re no longer meeting others in the same situation.
On top of this, many people may also find that their family and friends – having shown help and support following a diagnosis and subsequent treatment - start to get on with their own lives once someone seems to be getting better, adding to the sense of loneliness.
This is what happened to Fiona, who shares her experience this month in Cancer Spotlight, our e-newsletter for people affected by cancer. Here’s her story – and how she coped.
Palliative care should be integrated into standard treatment
The UK led the world in developing hospices and effective palliative care. People like Dame Cicely Saunders were trailblazers in showing how important it is to make sure that, when people can’t be cured and are approaching the end of their lives, it’s important to focus on the things that make what time they have left as comfortable and fulfilling as possible.
So it was heartening to see new US research recently published in the New England Journal of Medicine that supported palliative care and showed it might actually give people a little extra time, as well as improving their quality of life.
As we report on our news feed, the research followed about 150 people with advanced non-small cell lung cancer. As well as being given ‘standard’ treatment aimed at alleviating their symptoms, half of these patients were also given early, continuous care that involved their doctors, nurses, social workers and chaplains working together regularly to help them deal with the psychological and spiritual aspects of their disease.
The patients given this early treatment not only fared better psychologically, but they lived slightly longer too – a surprising result.
While this slight survival advantage is interesting, the key issue in this study was that the clinicians were seeing palliative care as more than something that should be added in at the last moment of someone’s life. They were seeing it as an integrated part of care. Continue reading
Clinical trials play a crucial role in bringing new treatments to patients. But is there room for improvement in the way trials are run?
Emphatically yes, argued Professor Ian Tannock in a thought-provoking session at the NCRI conference this morning.
He outlines the main points of his talk in this short video:
Clinical trials compare new treatments with current techniques to see which are best for patients. Professor Tannock, of the Princess Margaret Hospital in Toronto, Canada, said that despite some improvements – such as recruiting more participants onto trials – there are still many problems with the way trials are designed and run.
Cancer Tales explores communication between doctors and patients
Being told you have cancer can be devastating. But despite being given extensive training in how to communicate a diagnosis of cancer sensitively and effectively, many patients still feel that their doctor could have done a better job.
Moreover, no two patients are alike – everyone reacts differently under stress, and doctors face a considerable challenge in understanding exactly what makes each person they care for tick.
In her play Cancer Tales, writer Nell Dunn explores many of the issues that arise at the interface between the medical and the emotional. Written in 2003 after extensive conversation with cancer patients, their families, oncologists and nurses, the play was subsequently adapted into a workbook, Cancer Tales – Communication in Cancer Care (pdf), aimed at improving and strengthening lines of communication between doctors and patients.
At this year’s NCRI Conference, we were treated to an excerpt from the play, directed by Trevor Walker, featuring two of the five interwoven stories that make up the complete Tales.