Looking for distance carers in palliative care

Posted on July 13, 2014 by carolinacic

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.

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?

Posted on March 19, 2014 by carolinacic

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.

Sexual intimacy in palliative care

Posted on March 16, 2014 by carolinacic

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

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.

Social media and the healthcare establishment: a power struggle

Posted on February 17, 2014 by carolinacic

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:

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:

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”.

Telehealth and eHealth: Ageing well: how can technology help? The RSM Conference 2013

Posted on November 27, 2013 by carolinacic

For the last couple of days, I have attended the Annual Conference of the Royal Society of Medicine’s (RSM) “Telehealth and eHealth 2013 Conference: Ageing well: how can technology help?”, organised by the RSM’s Section on Telehealth & eHealth. Personally, it has been a hugely inspiring conference, because it focused on the three key elements of this thing we call eHealth. I firmly believe that the 3 edges of the triangle of eHealth should be patient-centredness, good use of technology and public health:

This conference has been highly patient-centric. I recently attended the Medicine 2.0’13 Conference and was disappointed of how much it was focusing on the business and data-harvesting aspects of eHealth. This is only my perception, which is probably due to the fact that I have always worked, and am passionate about, the public sector. So it was great to really feel how all these outstanding speakers (Mary Baker, Charles Lowe, Baroness Masham of Ilton, Malcolm Fisk or Rabbi Yehuda Pink, amongst others) do genuinely care about the people, about the patients. I was also pleasantly surprised by the humble and realistic talk about care homes by BUPA Care Services Medical Director Andrew Cannon.

Needless to say, this conference was very strong on how technology can help older people live healthier lives, by improving their quality of life (QoL). Having worked at the University of Oxford’s PROMs Group for a while, I know well the theoretical and methodological underpinnings of PROMs, so I completely agree that PROMs must be our weapons of choice to measure the impact of eHealth on people’s QoL. Two of my favourite quotes from the last two days are very illustrative of the approach to technology and health care during this conference. During his presentation, Dr M Vernon said that “we can use the technology we already have to improve health care”. I could not agree more: we must keep things as simple and as affordable as possible, if we want eHealth to become really mainstream in health care. My other favourite quote was by Rabbi Y Pink: “technology is God’s gift to humanity to improve our quality of life”. This made an atheist like myself smile, in a good way. It is crucial that relevant people in the community can pass the message in such a clever, easy to understand manner.

Last, but not least, I did thoroughly enjoy the focus on public health that this event had. In my humble opinion, there is still a lot (a lot) to be done in terms of public health and eHealth. It was great to learn about relevant initiatives from the European Commission, such as the imminent Green Paper on mHealth. I intend to post about this when it is published in a few weeks.

Finally, I was personally very interested to hear about many existing end of life/palliative care and dementia eHealth projects.

This is my take on this year’s RSM Telehealth and eHealth Conference. I would be very interested to hear your views, either via Twitter or as a comment to this post (below).

The use of social media to recruit participants in cancer care research

Posted on October 6, 2013 by carolinacic

My colleague Marta Wanat and are presenting a poster on the Use of social media to recruit participants in cancer care research to the International Psycho-Oncology Society IPOS 2013. For those of you not attending the conference, you can find the PDF of the poster here.

I really enjoyed working on this project, and we would be very happy to hear your views via Twitter:

– Marta: @marta_wanat

– Carolina: @ehealth_CCC

You can also see below the references for the poster:

1. Department of Health. (2012). National cancer patients’ experience survey programme. 2012/13.

2. Ramo, D. E., & Prochaska, J. J. (2012). Broad Reach and Targeted Recruitment Using Facebook for an Online Survey of Young Adult Substance Use. Journal of Medical Internet Research, 14(1)

3. Reed, E., Simmonds, P., Haviland, J., & Corner, J. (2012). Quality of life and experience of care in women with metastatic breast cancer: a cross-sectional survey. Journal of Pain and Symptom Management, 43(4), 747-758.

4. Steinhauser, K. E., Clipp, E. C., Hays, J. C., Olsen, M., Arnold, R., Christakis, N. A., . . . Tulsky, J. A. (2006). Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliative Medicine, 20(8), 745-754.

Would you let me die at home, dear?

Posted on September 16, 2013 by carolinacic

The BMJ recently published a Personal View article by William Tosh, an anesthesiologist who shares his experience of looking after his father during his last days of life: Choosing to die at home can be tough on the family. In it, he describes the feelings of guilt that he and his close family felt whilst trying to support the best they could his father’s wishes to die at home. Tosh talks about how he struggled with feelings of guilt and resentment, having his home “invaded” with medical devices and staff. His father received excellent end of life care, however he questions if dying at home was the best option in that particular case. He explains how

feelings of panic […] began to surface: there was now nowhere for the family to escape.

Nikolay Bogdanov Belsky - Ultima voluntad

The Last Will, by Nikolay Bogdanov Belsky

I think Tosh has written a very brave letter, sharing his emotional roller coaster and exposing personal feelings in a sensitive manner. More often that we would like to admit, another physician’s account of experience is much more valued than a lay person’s similar account. In this sense, Tosh’s text is a very powerful one, since it brings to the arena a topic that it is not always easy: when the dying person’s wish to die at home is not completely shared by their relatives.

In the last decade or so, there has been a shift in palliative care, acknowledging that most people prefer to die at home, and hence teams and policy makers have been advocating for it. On the other hand, some literature has highlighted an underlying issue: the dying person’s views may not be the same as their carer’s views. In other words, I may want to die at home, but my family may not be prepared for it. This can bring feelings of personal inadequacy (am I a bad person? Don’t I love my father/mother/husband…?), guilt, isolation (it is not easy to talk about this) and resentment. Tosh’s letter illustrates this very well.

I do realise that I am exposing my own reactions to Tosh’s article, and of course my opinion is biased by my own experience of helping dying people and their relatives in a Mediterranean culture. Nonetheless, I think articles like his are a valuable addition and much needed, because they bring attention to a sensitive topic and encourage us researchers and clinicians to discuss it in the open. There are probably no easy answers: each family is a different world, and each disease is different experience.

What is your view?

First ever surgery using Google Glass performed in Spain

Posted on June 23, 2013 by carolinacic

The first surgery in the world performed using Google Glass took place last week in Madrid, Spain. The actual operation was on a 49-year-old man who needed some work on his knee.

Google Glass was actually used not as an aid during the operation, but to broadcast the procedure worldwide to a group of professionals. Around 150 people were able to follow the operation live, watching exactly what the surgeon was seeing, via streaming video thanks to Glass Streamer, the Google Glass app developed by the Spanish company Droiders.

Now, I have always been very critical about Google Glass in general, and in particular about its use in daily life. This parody really sums up what I think. But when it comes to eHealth, I think there is huge potential for these kind of augmented reality devices. Not only in terms of learning, teaching and exchanging knowledge, but also for its use by (e)patients. For instance, as you may know my area of expertise is palliative care. This means the care of terminally ill people, who are often very limited in terms of movement and access to resources, especially when care takes place at home (research keeps showing that, given the choice, most of us would rather die in our own homes). So just think about the possibilities that these kind of devices could offer in the near future. Seriously ill people, and their caregivers, could have a much more direct interaction with their medical teams from a distance.

For example, consider this scenario. Jane is at home with her partner Joe. Jane is very seriously ill: she is bedridden and has a bad ulcer that needs cleaning, and the dressing needs replacing. But Joe is unsure how to proceed, so he calls the nurse at the hospice. Joe can’t really explain very well how the ulcer looks, after all, it just looks bad. So the nurse finds it difficult to guide him, and the whole situation takes a lot of time and creates a lot of unnecessary stress on both sides.

Now imagine that the hospice has given a pair of augmented reality glasses to Joe and Jane, the same way they have given them other special equipment. Joe uses the glasses to show the nurse how the ulcer is looking, so that the nurse is able to a) assess the actual state of the ulcer, and b) appropriately guide Joe through the process of cleaning it and changing the dressings.

This may seem a futile example, but when one is at home alone, looking after a terminally ill relative, it is these little things that make a world of difference.

eHealthOxford

Research information on eHealth, focusing on patient-centred care, palliative care and end of life issues.

Tag Archives: Palliative Care