His burden

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This is an excellent reading…

“But I want to die before my symptoms are bad enough to require a hospice. “

Illusions of Autonomy

laudanum

I knew George would be the first to ask. He had heard about his diagnosis a week before the vote, and although he had never raised the subject with me (there was no need), I just knew he’d be the one. Metastatic oesophageal cancer. 78 years of age, but ‘biologically’ 65 – busy, reluctantly retired – until disease began to excavate the contours above his strong jaw.

I prepared myself for his questions as I drove to the house. In fact I prepared my defences. Never a great supporter of Falconer’s Bill, I recognised my duty to engage in the process of Assisted Dying if that was what my patients wished. I had already decided that I would not be one to wash my hands of it, to pass it on to more willing colleagues. If it was legal, if it was right – for my patients – I would sign the…

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Looking for distance carers in palliative care

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As you may already know, I am currently doing a PhD at Oxford Brookes University. As part of my doctorate, I am conducting a research study exploring the characteristics, needs and experiences of carers at a distance in palliative care, and if and how they use the internet in their role as carers. At the moment, I am recruiting distance carers in palliative care who are willing to fill in a short online survey.

are you caring at a distance

So if you:

– Are at least 18 years old.

– Have a relative who is in a hospice or receiving palliative care at home.

– Live away from your ill relative (this could be a different town, or a different country), but still provide any kind of significant support.

Please consider participating in this study by filling in this online survey:

https://brookeshls.co1.qualtrics.com/SE/?SID=SV_57rCDTlSu2ZVrqR

You may also wish to visit the project’s Facebook page, or follow the twitter updates at @DistanceCarers.

 

Palliative care and the media: newspapers, television…. and the internet?

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I recently attended the 10th Palliative Care Congress (March 2014, Harrogate, UK). One of the sessions was a masterclass called Meeting with the Media. The following is my take on it.

This session was presented by Dr Helen Jamison, deputy director at the Science Media Centre. It was a very engaging session, where we discussed common issues around “navigating the media minefield” in palliative care. Dr Jamison focused primarily on the Liverpool Care Pathway media storm, although she also gave a very good roundup of tips for media work. I would recommend that you visit the Science Media website and have a look at the excellent work that this charity does, aimed at journalists, scientists and press officers.

The workshop was full of practical, sound advice on how to deal with the media. However, I felt that one key aspect was lacking. This was advice on how to use the Web (including social media) for media work. I am not going to dispute that a good percentage of people get their science news through newspapers, TV and/or radio. That is true. But we must not overlook the fastest, most effective tool that we have:  the internet. The Web. Scientists and charities like Science Media Centre need to be skilled at using the Web to disseminate scientific evidence and counteract harmful headlines. This is as important knowing how to deal with TV and newspapers, because a) journalists are already using  it (including radio and TV journalists, who may use it as an addendum to their offline strategy), and b) it will simply become the main media in the coming years. Because of the nature of the Web, information (good or bad) can rapidly become viral. We need to find strategies to counteract viral bad science, and this must be done from within.

Please do not take this as a criticism to the work of this charity. I think it is crucial. But I also think it is crucial that we have sound guidelines on how to use the Web for media work.

Chronic pain: can treatment over the Internet help?

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Evidently Cochrane

Key message:  The Internet offers a means of delivering therapies to people in their homes to help them manage chronic pain and a new Cochrane review has explored the evidence on how well these work. Current evidence suggests that psychological treatments delivered in this way may help adults with non-headache pain, reducing pain, disability, depression and anxiety, but more research is needed before we can be confident about these results.

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Sexual intimacy in palliative care

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Over the last few days I have attended, and thoroughly enjoyed, the 10th Palliative Care Congress in Harrogate (UK). One of the best sessions that I attended during this conference was the masterclass Supporting sexual intimacy in palliative care, by community clinical nurse specialist in palliative care Dr Bridget Taylor and cancer nurse and psychosexual therapist Dr Isabel White. The following is my take on it.

Adam and Eve, sculpture by Ellen Kolk (1970). Photo credit: Creative Commons by Tony Bowden

Adam and Eve, sculpture by Ellen Kolk (1970).
Photo credit: Creative Commons by Tony Bowden

This workshop highlighted the importance of sexuality and intimacy at the end of life, a topic that is often overlooked, because a) most cultures tend to be embarrassed to ask about it, and b) we seem to feel that when one is dying, intimacy is not that important. The session gave a very interesting overlook on the topic, and captured really well the different aspects of sexual intimacy: it is not just about intercourse, but, rather, a range of behaviours and emotions around intimacy, commitment and passion. This is known as the triangular theory of love (Sternberg, 1986).

I was particularly impressed by the respect and tender manner of Taylor & White, who used very powerful case studies to illustrate their arguments. My take-home message after this session was learning the importance of talking about sex. We all know how to talk about it when we have a cold: “I have a sore throat”, “My head hurts”, “I have a blocked nose”, “I feel drowsy”, “I need to sleep in order to feel better”, and so on. But when it comes to sexuality we often do not know how to talk about it, because we are not used to discussing it. It is more often than not a topic that only lives within ourselves. If we never talk about sex, even when things are fine, we will not have learnt a way to talk about it. This, in turn, will probably make it difficult to talk about it when problems arise, and very challenging to find a way to ask our patients about it.

We have to find our own language to talk about sex.

The authors of this workshop have kindly made the slides available through the PCC website.

Further reading:

Sternberg, R. J. (1986). A triangular theory of love. Psychological review, 93(2), 119.

Taylor, B. (2014). Experiences of sexuality and intimacy in terminal illness: A phenomenological study. Palliative medicine.

The NHS Security Vulnerabilities (via Terence Eden)

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I really enjoyed reading Terence Eden’s blog entry The Unsecured State Part 3 – 2,000+ NHS Security Vulnerabilities (Disclosed). In it, Terence explains step by step how insecure and patchy Britain’s NHS websites are, and how vulnerable they are to hacker attacks. In these days where there is a lot of talk about care.data and the confidentiality of patient records, I think it is an important read. While sadly not surprising, what Terence reports is still shocking.

I am not a programmer so I have only partially understood the technical aspects of the entry, but still it gives a good idea of how much the NHS digital strategy needs to be improved, and it does confirm a lot of concerns that I already had. If you don’t want to read the blog post, or you find it too difficult to read, I will leave here a couple of quotes:

Many Doctors’ Surgeries in an area will all use the same cheap, private sector contractors to built their site. If there’s a bug in one – that bug is present in hundreds of other sites.

and

I finally heard back from someone senior within the NHS. They explained that the Department of Health has no central control over NHS websites. As a result, sites fall through the cracks as local teams change. Consequently, in many cases there is simply no way to contact the website owners.

Thank you to J Pilbeam  at the University of Oxford, who sent me the link to Terence’s post in the first place.

Social media and the healthcare establishment: a power struggle

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You may be already familiar with the controversy that a couple of newspaper articles have generated regarding the tweets of Lisa Adams, a woman who is terminally ill, and who has been openly blogging and tweeting about her journey as a patient diagnosed with an incurable cancer. She is not alone in doing this. Dr Kate Granger is also a young woman diagnosed with a terminal cancer, as well as a doctor. She too has chosen to share her experience online, including very personal feelings and pictures of her ordeal.

One could look at this anecdotes phenomenon from many angles, and indeed most have been covered: ethical, public health, medical, social media, patient engagement… To me, the essence of the debate is a very old one: it all boils down to a power struggle, because

the irruption of the Web 2.0 has fostered a paradigm shift within the healthcare landscape.

Not many years ago, the healthcare system was dominated by what has been called the biomedical model. In this model, doctors* knew best, and patients did not question what they were told. Patients were passive recipients of the medical knowledge. We could represent this model in a very simple diagram:

bimedical model

More recently though, things have changed. The biomedical model is slowly but steadily being replaced by the biopsychosocial model. There are many differences between this model and the traditional, biomedical model. I will only focus on the different doctor-patient interaction. In this model, patients take a proactive role. Instead of being passive, the patient has become an engaged and empowered stakeholder, thus changing the doctor-patient relationship:

biopsychosocial model

In my opinion, the debate about patients’ tweets is a symptom that shows how the establishment struggles with this new paradigm. I think it’s interesting how so many people are scared of social media, because it gives power to the people. Until now, it was just us (doctors, journalists, politicians, scientists…) who told things the way we thought  they were. Our vision of the world was the right one, and “the lay person” listened. But now, with the Web 2.0 (and this includes social media), everyone and anyone can tell things the way they think they are, and our version of the story is no longer the right one. And we are forced to listen.

It is time that the self-appointed experts give some room to the patients, because thanks in part to social media they are going to take the centre stage whether you like it or not. After all, is this not the essence of patient-centred care?

* Just to make this post easier to read, I chose to simplify and use the word “doctor”. Of course I mean the medical establishment, including nurses, psychologists, psychiatrists, physiotherapists and so on. I’m sure you understand what I mean when I say “doctor”.

Twitter and Palliative Care

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It is not often that I come across a paper that I find not only interesting, but also useful. And it is even rarer for me to read a scientific paper about social media that tells me something I did not know already. As other fellows geeks will very well know, real news about social media nowadays come almost exclusively from blogs and from Twitter.

palliative-care-social-media-twitter

So I was very pleased to find Craig Nicholson’s brief paper titled Palliative care on Twitter: who to follow to get started. In it, Nicholson suggests a number of Twitter accounts to follow, if you are interested in palliative care. Not only does he list a few of them (such as @kesleeman AKA Dr Katherine Sleeman, @EAPCOnlus AKA the European Association of Palliative Care or @thewpca AKA Worldwide Palliative Care Alliance, among others), but he also describes the account in a short paragraph: who is it, and what will you get from them. 

It is very refreshing to see that despite all the social-media-hating-dinosaurs in the health care world, there is still a minority of e-pioneers getting good publications out there, and this is one of them.

If you are new to Twitter and interested in palliative care, this is the paper you need to read.