Cancer patients can’t believe everything they read

The stream of information about cancer treatments and cures can be overwhelming. When the Guardian describe new miracle cures. It’s hard to know what to believe. This article is an example of how biased interpretations of scientific papers can be misleading for patients and families.

Let’s find out if this new cancer treatment can wipe out tumours in terminally ill head and neck cancer patients as claimed.

A cancer patient on the trial, Barry Ambrose, 77 is interviewed. The cancer in his throat was no longer detectable after his immunotherapy. He is delighted.

I looked for a link to the original randomized controlled trial. Eventually I managed to find the paper in the medical literature. But surely, I had found the wrong paper? This paper had a different conclusion, that there was “no improvement in survival” with the new immunotherapy treatment. How can this be?

The Checkmate 651 trial asks : if you have a high-risk cancer of the head and neck, is immunotherapy or standard chemotherapy a better first treatment?

947 patients were randomly put into two treatment groups – half had immunotherapy and the other half chemotherapy.

The people having the new immunotherapy treatment did not live longer than the people having the old chemotherapy treatment. The study did show a couple of differences in treatment group outcomes. The immunotherapy sub-group lived for a median of 17.6 months compared with 14.6 months in the chemotherapy group, but this three-month difference might have happened by chance according to the statistical analysis. More people were alive at 2 years after immunotherapy in a subgroup (26% compared with 16%). The immunotherapy treatment, if it worked, worked for longer at 33 months compared with 7 months.

The main author of the study Dr Argiris is here speaking about its results.

The study is at risk of bias because it’s paid for by the drug company that benefits if it is successful. It did not show that immunotherapy is superior to chemotherapy, despite the Guardian headline. It did show that immunotherapy has fewer side effects than immunotherapy – but we already knew that from other studies. In a subgroup of patients, those having immunotherapy died a median of 3 months later but this result was not strong enough to meet the criteria for being statistically significant, meaning it could be a chance result. For those who did respond to immunotherapy, though, it was a longer time before their cancer came back.

It is so important for patients with cancer to have a good understanding of potential treatments – both their risks and benefits. This enables the person to make good decisions about their medical treatments.

Can this “new cancer treatment … wipe out tumours in terminally ill head and neck cancer patients”? Sorry, not enough evidence to claim that. The treatment has fewer side effects and if you respond to the treatment the beneficial effect lasts longer.

If you find information about a new treatment, discuss it with your oncologist and see what they think. Unfortunately, we can’t believe everything we read about new miraculous treatments.

Hello, my name is…..

I go to see John* on the ward. He’s been admitted for pain management. He tells me that the plan is for some chemotherapy next week. Who was it who said that? I ask. He shook his head. “I dunno, there are so many…. I have no idea who most of them are. “

It can be so hard to work out who is who in the health care setting.

Dr Kate Grainger was a senior doctor in the NHS in the UK when she was diagnosed with cancer. She was shocked that people looking after her and even doing procedures on her did not introduce themselves. Before her death, she started a worldwide campaign called #hellomynameis. Its aim is to encourage healthcare staff to introduce themselves to patients. This improves patient satisfaction, participation in care, and also patient safety.

One thing that can help is to understand how the hierarchy works in the hospital setting. Yes, it’s a hierarchy! The consultant, or senior doctor, is the leader of the medical team. An inpatient in a hospital bed might see them every few days.

The doctors who come around each day to see all their patients are the registrar, the mid-level doctor who makes the day to day medical decisions. They are likely to be in a training program to become a specialist.

The most junior member of the medical team is a resident, who can also be called an intern or junior medical officer. They don’t make as many management decisions themselves, but carry out the requests of the registrar and consultant.

Alongside the many excellent bedside nurses caring for you, you may also be seen by allied health professionals. These could include a physiotherapist, an occupational therapist, a social worker, a pharmacist, a spiritual care worker, and more.

Make sure you know who the team members are who are looking after you. I hope everyone greets you with a friendly, “Hello, my name is….”

Have you had an experience in the hospital setting where it was hard to work out who was who?

Caring@home seeks translators – Vietnamese and Tagalog

caring@home project – seeking translators

The caring@home (www.caringathomeproject.com.au) project is looking for palliative medicine specialists or trainees to review some resources for carers being translated into Vietnamese and Tagalog.  caring@home has produced resources for carers to support carers to help manage breakthrough symptoms safely using subcutaneous medicines.

A company that uses accredited translators have been contracted to do the work but the project has also requested the opportunity to have a health care professional, who is a native speaker of the language, to review the translation and subtitles.

The work would be expected to be completed in May and June. They are able to offer a stipend for this work of $800 + GST upon receipt of an invoice.

The work is to review the following after they come back from the translating service:

If you are interested in undertaking this work, please contact Karen Cooper, Project Manager for caring@home on E: Karen.Cooper3@health.qld.gov.au or M: 0428 422 818.

Elsewhere in the Palliverse…weekend reads

Reads for your weekend from across the Palliverse…

How to determine the order of authorship in an academic paper (@paulisci)

Presenting your research findings at a meeting? Here are some useful tips to improve your delivery (Lifehacker)

As I walk through hospital corridors, I’m always grateful for the beautiful artworks displayed. However, I don’t often stop to consider the themes portrayed. Art columnist Jonathon Jones asks, Should hospital art be jolly – or should it portray the truth about pain? (The Guardian). Meanwhile, More hospitals use the healing power of art (Wall Street Journal). What are your thoughts? Continue reading

A call for engagement: The International Conference of the End of Life 2014

The ICEL conference for Law, Ethics, Policy and practice was hosted by Queensland University of Technology in Brisbane last week and was a notable event in a number of ways.  There was a stellar cast of plenary and concurrent speakers including such international experts as Prof Jocelyn Downie (@jgdownie), Prof Sheila McLean, and Dr Dale Gardiner and Dr Peter Saul and Prof Michael Ashby from Australia (check twitter for #2014ICEL for a complete run-down of the topics and issues over the two days, or http://bit.ly/ICELPhotos if you would rather just look at the pictures).  ICEL brought a multi-disciplinary focus to issues surrounding the end of life, and was not afraid to ask the big questions including the appropriateness of euthanasia, and who should be determining futility. 

ICEL images

Continue reading

Palliative Care Victoria Conference 2014

Are you heading to the palliative care victoria conference in Melbourne in July 2014?

Fear not, your trusty @palliverse correspondent @sonialf will be heading there to keep you up to date with the exciting developments. Continue reading

Abstract submissions open for 2015 APHC

Online abstract submission is now open for the Asia Pacific Hospice Conference in Taipei, Taiwan (30 April – 3 May 2015), with the theme “Transforming Palliative Care”. More information is available at the conference website.

 

via @ehospice on twitter

Welcome to the Palliverse

Welcome to Palliverse, a website and online community designed to connect palliative care researchers, clinicians, ideas and funding sources, with an Australian and New Zealand focus.

Regular posts will offer advice for early career researchers, interviews, links to clinical resources, updates on palliative care in the mainstream media, and more. The Palliverse editorial team are researchers, doctors and nurses hoping to connect like-minded individuals across the palliative care community. The website and its content are self-funded by the editorial team.

Palliverse relies on your participation so please leave comments, share links, ask the Palliverse community for advice, and participate in any way you think may be of benefit in furthering palliative care in Australia and New Zealand. Submissions are very welcome.

Look here for more information and site rules.

You can contact us at palliverse@gmail.com, @palliverse on Twitter or via the comments below. We would greatly appreciate your feedback regarding Palliverse via our online survey, which only takes a few minutes.

 

Thank you

The Palliverse Editorial Team

Children On Death

As both mere humans and as professionals in the palliative care sphere, how often do we catch ourselves or those around us contemplating the big questions of life, or more specifically, death? Quite often, I imagine… Yet many of us still find ourselves tongue-tied on the subject. Even as professionals in the ‘business’ of dying, we may approach conversations on the subject with a certain reluctance. How do we gauge the readiness of a person to face their own mortality? How do we establish a person’s preferences for disclosure? These are complex questions with perhaps no one easy answer – unless of course, you’re a kid, right? Continue reading

NTEU funding opportunity

A scholarship has been announced by the National Tertiary Education Union (NTEU) for post graduate nursing research.  The Scholarship, worth $5,000, is for a study of nurses, nursing culture or practices, or historical aspects of nursing as a lay or professional practice.  

For more information contact Helena Spyrou Education and Training Officer (National Office) E: hspyrou@nteu.org.au