29 Jul, 15 | by James Smallbone, Publishing Assistant
Read about the winning team for 2015’s BMJ Awards Palliative Care Team of the Year and their innovative approach to palliative care for all patients.
29 Jul, 15 | by James Smallbone, Publishing Assistant
Read about the winning team for 2015’s BMJ Awards Palliative Care Team of the Year and their innovative approach to palliative care for all patients.
22 Jun, 15 | by Jenny Thomas
Selected items from the News and Latest Additions sections of www.palliativedrugs.com, the world’s leading palliative care website with over 30,000 members from 169 Countries.
MHRA: Tramadol 50mg capsules batch recall
All unexpired batches of tramadol 50mg capsules from RelonChem Ltd/Kent Pharmaceuticals have been recalled due to the risk of fungal contamination. For more information, click here.
Never Event list 2015/2016
A revised Never Events policy and framework has been published for 2015/2016, this includes changes to the definition of a ‘Never Event’ and adjustments to the types of incident that are included on the list, reducing it from 25 to 14 incident types. Those incidents most relevant to palliative care that have been removed from the list because they do not meet the revised definition of a Never Event include:
However, if they occur, incidents should still be managed using the Serious Incident Framework. In addition, the three previous wrong route Never Events have been merged, and the criteria for classification of some of the remaining Never Events have changed.
The current Never Events related to medication are now:
The full list and policy can be downloaded from the links below.
More information can be obtained from the NHS England website.
Cochrane review: Corticosteroids for the management of cancer-related pain in adults
This updated Cochrane review (CD010756) has been published in full on-line.
Temazepam prescriptions now need to meet requirements for Schedule 3 CDs
As of the 1 June 2015, prescriptions for temazepam are required to meet full prescription requirements for Schedule 3 controlled drugs (CDs) in England, Scotland and Wales, i.e. temazepam is no longer exempt from the usual Schedule 3 prescription requirements. This follows a consultation and legislation change which also brings in other changes for CDs including for electronic prescribing, physiotherapist independent prescribing and chiropodist/podiatrist independent prescribing (see our news item 15 April 2015).
Naloxegol for opioid-induced constipation
Draft NICE guidance recommends naloxegol for treating opioid-induced constipation in adults whose constipation has not adequately responded to laxatives (at least moderate severity in ≥1 of 4 stool symptom domains) while taking ≥1 laxative class for ≥4 days during previous 2 weeks. It is anticipated that the guidance, currently under final consultation for factual errors/appeals, will be published July 2015. For more information, click here.
Updated advice on high-dose ibuprofen
A European-wide review of ibuprofen has confirmed that there is a small risk of cardiovascular events in patients taking ibuprofen ≥2,400mg/24h. The risk is similar to some other non-steroidal anti-inflammatory drugs, including COX-2 inhibitors and diclofenac. No risk has been seen with ibuprofen at doses ≤1,200mg/24h.
The EMA advise the following:
For more information, click here.
PCF updated monographs summary (May 2015)
The online Palliative Care Formulary is being continually updated. The following monographs have been updated during May 2015 and supersede those in the publication of the 5th edition of the Palliative Care formulary (PCF5) and PCF5 epdf. They can be accessed from the formulary section of the website.
Chapter 01: Antacids, Compound alginate products, Simeticone, Products for haemorrhoids
Chapter 09: Zinc
Chapter 19: Drugs and fitness to drive
Chapter 25: Variability in response to drugs
Chapter 29: Oral nutritional supplements
For a full list of all the monographs updated since the publication of PCF5, click here. Follow us on twitter @palliativedrugs for the latest updates.
Rifampicin for cholestatic itch – What is your experience?
For results from our survey (March – April 2015), click here.
Prepared by Sarah Charlesworth and Andrew Wilcock
29 May, 15 | by BMJSPCblog
Marie Ennis-O’Connor is a social media consultant, award-winning health blogger, and author of “Beyond The Buzz: Healthcare Social Media”
Have you noticed how visual and colourful social media have become? Platforms that focus on visuals (like photos) such as Pinterest have grown in popularity, and it has been shown that visual media increase the rate of engagement when included on Facebook and Twitter. Pinterest has over 70 million global users and 83 billion monthly page views, and according to content-sharing site Shareaholic, Pinterest is driving more traffic to websites and blogs than Twitter, YouTube, Google+ and LinkedIn combined. A quick search on Pinterest for hospice, palliative and end-of-life related keywords reveal that palliative care professionals have already established a presence there. If you wish to join them, this article will show you how to use Pinterest to increase visibility and enhance the understanding of palliative care.
What is Pinterest?
For those unfamiliar with Pinterest, a brief overview:
Pinterest is a social networking site with an elegant and attractive “virtual pinboard” interface. Users collect photos and link to items they find interesting, thus creating their own pinboards. When images are uploaded to Pinterest, links are embedded that users can click to drive traffic directly to a website’s page. Furthermore, by sharing these images via Twitter or Facebook or embedding them on their own website or blog, images can be shared with a wider audience.
How to set up a Pinterest account
It only takes a few moments to set up your Pinterest account. Click on www.pinterest.com to get started. Add your username, fill out your profile information and include a picture or logo along with links to your website. Consider checking that the option to ‘Hide your profile from search engines’ is checked to ‘Off’, so your profile can get indexed by Google and other search engines. Lastly, check the boxes that link to your Twitter and Facebook accounts are highlighted if you want your pins automatically linked to these accounts. Once your account is set up, you can create “boards” and add images and videos to your boards by “pinning” them.
What should I ‘pin’?
• Educational resources. Create a board with links to books, educational and informational resources relevant to palliative care. Add images and video for visual interest.
• Create boards for your events. Share photos and videos of open days, conferences, seminars, fundraising, or other events you host or attend.
• Pin your blog posts. Pinning your blog posts can help expand their reach and drive traffic to your blog or website. Make sure you add a “pinnable” image to each post you create on your blog.
• Feature user-generated content. Featuring user-generated content on your pinboards is a good way to create community. You could set up a monthly “Guest Pinner” for your Pinterest account, and allow your staff, students, volunteers, or patients to pin on certain boards.
• Be inspiring. Inspirational quotes are extremely popular on Pinterest. You can re-pin from other users, or design your own.
• Image of the day. Create a regular image of the day feature; it could be a behind the scenes look at your organization, your facilities, your location, or seasonable events – the possibilities are endless.
• Introduce your staff, students and volunteers. Give your followers a behind the scenes look at the lives of those who work or volunteer for you. Pinboard ideas can range from images of daily work routines, to boards featuring “places we love” or “books we are reading”.
• Create Infographics. Infographics (graphic visual representations of information, data or knowledge) present complex information quickly and have grown in popularity on the web. You can create your own infographics with a free tool like Piktochart.
Designing “pinworthy” images
Pinterest images have the longest lifespan of any social media platform, so it’s worth taking some time and care when designing your images.
• You can achieve professional looking images with a good camera and some basic photo editing software.
• Taller, vertical images are more repinnable.
• Use a tool like Canva, which has its own premade Pinterest templates to help you design appealing images.
• Overlay your images with text to help you convey your message at a glance (Pic Monkey is a useful tool for this).
Optimise your pins
Use keywords in your image file name, and add keywords to all descriptions. Make it clear what users will find when they click on your image. Add the Pinterest follow button to your website and make it easy for visitors to share your images on Pinterest by adding a Pin-It button to your website images. Promote your presence on Pinterest through your other social networks by encouraging your followers/fans on Facebook, LinkedIn, Google+, and Twitter to follow you there.
Pinterest, like all social media, has within it the potential to ignite conversations, deepen connection and understanding, and foster communities of shared interests. With a little creativity and imagination you can begin to use it to share your passion for what you do and recognise others for the work they do in palliative care.
16 May, 15 | by James Smallbone, Publishing Assistant
Potential risk of error in selecting incorrect oxycodone strength
The National Pharmacy Association (NPA) has warned that incidents have occurred involving the selection of the wrong strength of oxycodone oral solution by prescribers on Egton Medical Information Systems (EMIS), used by GP surgeries. This appears to be due to the fact that the oxycodone 10mg/mL solution appears as the first option before the oxycodone 5mg/5mL solution. Pharmacists are being advised to confirm all prescriptions for the 10mg/mL solution are correct. For more information, click here.
Codeine for cough and cold contra-indicated for children under 12 years
Codeine for cough and cold is now contraindicated in children under 12 years, and not recommended in children between 12 and 18 years with compromised respiratory function. An EU review confirmed that the way codeine is converted into morphine in children under 12 years is more variable and unpredictable, and therefore they are at increased risk of undesirable effects. These restrictions bring the use of codeine for cough and cold more in line with the restrictions on the use of codeine for pain in children (see our news item 26 June 2013). For more information, click here.
Legislation changes for controlled drugs
Several legislation changes to the Misuse of Drugs Regulations 2001 have been approved by the Parliament for England, Scotland and Wales, resulting in changes in practice on 1 June 2015 and 30 November 2015. Those most relevant to palliative care include:
1 June 2015
30 November 2015
Other changes involve the emergency supply of phenobarbital, authority for NHS Ambulance Trusts to possess and supply CDs, authority to supply CDs in prisons, midwife supply orders, paramedic and operating department practitioner stock requisition. For more information, click here.
Cochrane review: Buprenorphine for treating cancer pain
Two new Cochrane reviews have been published in full on-line:
Ketamine supply update
Pfizer have confirmed that although they anticipated that ketamine 10mg/mL (20mL vials) and 100mg/mL (10mL vials) would be available in March, they are still out of stock and they are unable to give an updated date of availability. Ketamine injection 50mg/mL (10mL vials) are still available (see our news item 12th February 2015).
New PO magnesium product for hypomagnesaemia
A magnesium powder sachet for oral solution is now available and authorized for the prevention and treatment of magnesium deficiency in children from 2years, adolescents and adults. Magnaspartate sachets (Kora Healthcare, Ireland) contain magnesium aspartate equivalent to 243mg (10mmol) of magnesium. Each sachet can be dissolved in 50−200mL water, orange juice or tea. In addition, sachets dissolved in 200mL water can be administered via enteral feeding tubes. NHS basic cost is £8.95 for 10 sachets. For the SPC, click here.
Methylnaltrexone indication extended
Methylnaltrexone is now authorized for all adult patients for the treatment of opioid-induced constipation when response to laxative therapy has not been sufficient i.e. the restriction on use in advanced illness has been lifted. For more information, click here.
Prucalopride indication extended
Prucalopride is now authorized for all adult patients for the treatment of chronic constipation when response to laxative therapy has not been sufficient i.e. the restriction on use in women only has been lifted. For more information, click here.
PCF updated monographs summary (April 2015)
The online Palliative Care Formulary is being continually updated. The following monographs have been updated during April 2015 and supersede those in the publication of the 5th edition of the Palliative Care formulary (PCF5) and PCF5 epdf. They can be accessed from the formulary section of the website.
For further details of the minor changes, see the individual notifications in the Latest additions section of the website. For a full list of all the monographs updated since the publication of PCF5, click here. Follow us on twitter @palliativedrugs for the latest updates.
Prepared by Sarah Charlesworth and Andrew Wilcock
29 Apr, 15 | by BMJSPCblog
By Dr Matthew Katz, MD @subatomicdoc
Lowell General Hospital
MA 01854 USA
Many people find Twitter a bit confusing when they first sign up. This article aims to help palliative care professionals ease their way in, and find it an educationally valuable tool. And turning it the other way round, how can we bring more awareness of ourspecialty’s ideas, news and values to wider society?
With 288 million active users in March 2015, Twitter is one of the most popular social networks (1) The microblogging website’s regular users include many healthcare professionals, patients and caregivers interested in hospice and palliative care.
So, tell me again about the Hashtags?
Hashtags are character strings that include the # symbol and create a labeling system. First used on Twitter in 2007,(2) hashtags began to be used regularly in medicine in 2010. Hospice and palliative medicine participants were early adopters, using #hpm (hospice and palliative medicine), #hospice and #palliative in tweets first in September 2010. Using Twitter or third-party software, users can organize live chats at set times. #hpm adopted this practice early with weekly chats (or tweetchats).
Wrestling with #HPM
The use of #hospice and #palliative has been accurate and active but less focused around a particular community. #hpm emerged and has sustained because of the dedicated weekly organized chat powering conversation and community development. Short hashtags have the benefit of brevity but risk incursions of “noise” from use by other people on Twitter with a completely different meaning. Despite a recent incursion of professional wrestling, it remains strongly focused on palliative care. (3) Based upon data tracked on Symplur.com, a healthcare analytics company that also aggregates hashtags, the most active ones for hospice and palliative medicine are listed in Table 1.
|Hashtag||First Use||Chat Frequency||Chat Time (GMT)||Tweets (in thousands)*|
|#hpm||Sept 2010||Weekly||1 AM Thurs||306.5|
|#hpmglobal||Mar 2012||Weekly||12 Noon Mon||33.3|
* As of 6 April 2015
No one owns a hashtag; it’s simply a string of characters. There is a tendency for certain users to take a leadership role, like stewards. Leaders can attract others interested in the same topic to the community. The most common ways to identify interesting topics or health-oriented communities are to review interesting people’s hashtag use, ask others on Twitter, or use a hashtag search tool. For the last option, there are many websites but the leader has been Symplur LLC, which has a large database of tags and allows dynamic new submissions by users in its Health Hashtag Project.(4)
Expanding on existing tags
The ability to submit new tags makes it easy for communities to branch into new ones. #hpmglobal and #hpmjc have been ways to discuss specific domains of palliative care with more coherence, a higher signal-to-noise ratio desired by some participants. As the perceived value of online participation increases, some participants may want to pursue leadership opportunities by forming new communities through new tags. Currently Symplur identifies any hashtag’s founder(s), which may provide some incentive to use it as a way to establish leadership.
Multiple communities provide variety. However, there is a strategic advantage for influence if a tag is very active. ‘Trending’ tags, the most active at any given time, are visible to all of Twitters’ users. Even active users that support multiple channels see some value in a stronger signal.
Differentiator or Dual Tags
Currently, neither Twitter nor Symplur have a planned structural solution to the dilemma. But one way to leverage #hpm and focus it on a single topic is by adding a second tag as a differentiator. Though it doesn’t have the activity of #hpm, I have found it successful for radiation oncology’s tag #radonc to create a separate stream in Spanish to discuss radiation oncology using #radonc #es together.(5)
The approach of dual tags has the advantage of providing traffic to the prime tag while giving specificity. If you think of the hashtag as an interactive radio station, then multiple chats can exist at different times using dual tags. You just ‘tune in’ at set times to the relevant dual tags, yet someone can still find #hpm and discover each niche.
If there is a desire to structure communities rather than see them develop organically, hospice and palliative care professionals and advocates could crowdsource tags representing the specialty, similar to experiments by oncology and radiology.(6,7) This tactic may create diversity while maintaining coherent channels which attract new users and be useful for scientific meetings. The current conventional wisdom is that the best tags are user-generated; whether that principle applies to organized medicine’s needs is undetermined.
What community-building strategies will work best for hospice and palliative care? That is up to those that participate. What do you think?
1. Leading social networks worldwide as of March 2015, ranked by number of active users (in millions). [Internet] From Statista.com. http://www.statista.com/statistics/272014/global-social-networks-ranked-by-number-of-users/ Accessed 13 Apr 2015
2. Messina C. Groups for Twitter; or a proposal for Twitter tag channels. [Internet] From factoryjoe.com.
http://factoryjoe.com/blog/2007/08/25/groups-for-twitter-or-a-proposal-for-twitter-tag-channels/ Accessed 14 Apr 2015
3. Sinclair CT. What to do when your hashtag gets a new meaning. [Internet] From Storify.com. https://storify.com/Pallimed/collaboration-on-hashtags Accessed 14 Apr 2015
4. Lee TS. Healthcare hashtags – a social project. [Internet] From Symplur.com. http://www.symplur.com/blog/healthcare-hashtags-social-project/ Accessed 15 Apr 2015
5. Katz M. Live tweet chats in multiple languages. [Internet] From RadiationNation.com. http://radiationnation.com/health-communications/live-tweet-chats-multiple-languages Accessed 15 Apr 2015
6. Katz M. The oncology tag ontology: professional-centered collaboration and networking. [Internet] From Symplur.com. http://www.symplur.com/blog/oncology-tag-ontology-professional-centered-collaboration-networking/
7. Hawkins M. Radiology hashtag oncology project. [Internet] From Symplur.com. http://www.symplur.com/blog/radiology-hashtag-ontology-project/ Accessed 15 April 2015
27 Mar, 15 | by BMJSPCblog
by Dr Mark Taubert @DrMarkTaubert
Social media use at conferences has become so commonplace that it is not at all unusual for a presenter to be faced with an audience peering down at laptops/tablets/smartphones (academic spectacles reflecting myriad shimmers of blue LED light to the front). Sometimes flashlights, bright screens and tablets (held up in the air) can be so prevalent that they are a nuisance to speakers and fellow delegates, and rules of etiquette are hurriedly announced.
Delegates often part with a lot of money to attend academic events, and some like to capture the moment ‘live’ on their microblog or even take videos of entire lectures and post them online.
The pure practicality of social media platforms offering novel flexibilities in sharing, has left some organizers scrambling for advice and guidance, for instance on copyright and research governance issues. ‘Vitae’ have produced a handbook for researchers and supervisors on social media, that covers a number of areas that need to be considered, but the issue of live tweeting new findings presented at academic events is one that conference organizers need to be increasingly mindful of. It is, for instance, a reasonable idea to inform those researchers who are submitting abstracts to conferences where live blogging is encouraged and allowed, that this will indeed be taking place, and that their presentations may be shared online. Equally, conference organizers may prefer to issue a statement that live tweeting or pinning is not permitted. It is reasonable to argue that such uses of social media will in some instances constitute a first (written) publication of an abstract or research work, if the conference abstract itself is due in a journal only a month or so later. Journals, too, may need to formulate clauses and guidance stating whether they feel this infringes on their copyright agreement with existing and prospective authors.
In autumn 2014 a debate began on Twitter, later given the hashtag #Twittergate; there was much discussion around the etiquette and legalities of live tweeting at conferences. Opposing camps were either of the opinion that freedom of information trumps all in the knowledge revolution we are witnessing, or they felt that violations of copyright were paramount. Journalist Steve Kolovich later summarised it thus: “Scholars often present unpublished work at conferences. But while they may be willing to expose an unpolished set of ideas to a group of peers, academics may be less eager to have those peers turn around and broadcast those ideas to the world“.
For further reading, Ernest Priego in a Guardian article gives 10 top tips on academic live tweeting.
20 Mar, 15 | by James Smallbone, Publishing Assistant
Selected items from the News and Latest Additions sections of www.palliativedrugs.com, the world’s leading palliative care website.
Patient Safety Alert for Fluid/Food Thickening Powder
NHS England has issued a patient safety alert (NHS/PSA/W/2015/002) warning of the risk of death from asphyxiation by accidental ingestion of fluid/food dry thickening powder. For more information, click here.
New Drug Driving Legislation Now in Force
The new offence of driving or attempting to drive with certain controlled drugs above specified limits in the blood came into force on 2nd March 2015, in England and Wales. The legislation covers eight illegal drugs and eight prescription drugs including:
The main focus of the new law is the illicit use of these drugs. Accordingly, provided driving is not impaired and the drugs are being taken as directed either by a health professional or the Patient Information leaflet (PIL), drivers lawfully using these drugs are exempt from prosecution (the ‘medical defence’). Thus, it is important to inform patients of this if prescribed these drugs and they intend to drive. The MHRA and Department for Transport have produced information for patients (see below). PCF Chapter 19 on drugs and fitness to drive will be updated shortly.
Choice in End of Life Care Report
An independent report ‘Review of Choice in End of Life Care’, which provides advice to the Government has been published. For more information, click here.
Ketamine Supply Update
There have been ongoing manufacturer supply problems with all strengths of ketamine injection (Ketalar; Pfizer) since November 2012 in the UK. Some units have been using imported products of varying strengths, presentation and type (see our news item 6th June 2014). We can report that ketamine injection 50mg/mL (10mL vial) is now available via Pfizer. It is manufactured by Pfizer in Turkey, but is identical in content to the UK product and approved by the UK MHRA. It is presented in an amber vial with a yellow flip cap and red stopper (UK product was a clear vial and a grey cap and stopper). Pfizer anticipate that the 10mg/mL (20mL vials) and 100mg/mL (10mL vials) will be available March 2015. For further details contact Pfizer customer services (01304 616161).
PCF Updated Monographs
The following monographs of the on-line Palliative Care Formulary (PCF) have been updated during February 2015 and supersede those in the publication of the 5th edition of the Palliative epdf. They can be accessed from the formulary section of the website:
In addition, a correction has been made to the following monograph: Chapter 29: Oral nutritional supplements (correction November 2014).
For further details of the minor changes or corrections, see the individual notifications in the Latest additions section of the website.
For a full list of all the monographs updated since the publication of PCF5, click here. Follow us on twitter @palliativedrugs for the latest updates.
Save 33%: Strong Opioids and the Relief of Cancer Pain Booklet
The booklet Strong opioids and the relief of cancer pain; Information for patients, families and friends (produced by the editorial team of the Palliative Care Formulary) has been reduced to £3.99 (from £5.99) while stocks last. The question and answer style booklet, which carries the prestigious Crystal Mark for clarity, was published in December 2013 (see our news item 17th December 2013).
Some example questions answered include:
Prepared by Sarah Charlesworth and Andrew Wilcock
7 Jan, 15 | by BMJSPCblog
Do social media uploads, comments, blogs and videos provide rich opportunities for research or should we stand back on moral grounds? Answer: we need a framework
By Dr Dafydd Brooks , Dr Mark Taubert, clinicians at Velindre Cancer Centre and Dr Annmarie Nelson and Dr Noreen Hopewell-Kelly, researchers at the Marie Curie Palliative Care Research Centre, Wales Cancer Trials Unit, Cardiff University, UK
Patient and carer peer support on social media sites:
Many people with health problems and their carers use the internet to seek information about their condition. The rise of social media has only served to expand the sharing of information, with micro blog sites like Facebook hosting pages for groups to discuss both common and rare conditions alike.
This form of communication makes patient and carer interaction across the globe with similarly affected individuals very easy, and directly and indirectly impacts on heathcare services. There is also huge potential for research into what people are saying and writing. (1, 2, 3)
Research on peer support via social media:
We looked at research articles focussing in particular on social media hosted peer-support mechanisms for people with chronic conditions. Numerous research papers are emerging looking at online behaviours of patients with conditions such as diabetes and mental health diagnoses. Focusing on peer-support mechanisms, there is a trend for openly available online interactions to be analysed by researchers using both quantitative and qualitative methodologies.
For instance, one such paper, a recent research article in PLOS ONE (4), analysed 3,044 comments on 19 Youtube videos created by people who self identified as having severe mental illness, focussing on how they gained peer support through sharing advice or describing their own health experiences.
Analysis of data showed that peer support occurred across four themes:
– minimizing a sense of isolation and providing hope;
– finding support through peer exchange and reciprocity;
– sharing strategies for coping with day-to-day challenges of severe mental illness;
– learning from shared experiences of medication use and seeking mental health care.
Lack of anonymity:
These broad themes were consistent with already accepted notions of peer support in mental illness, consisting of a voluntary process aimed at inclusion and mutual advancement through shared experience and also developing a sense of community. Data from this study also suggested that the lack of anonymity and associated risks of being identified as an individual with severe mental illness on YouTube appeared to be overlooked or felt not important by those who uploaded videos and wrote comments. This lack of data awareness carries with it potential concerns for researchers interested in analysing and publishing such data.
Metamorphosis: from casual upload to full blown research data
An important area for consideration in this type of research paper is the moral dilemma of analysing data that, while being in the public domain, was unlikely to have been intended for research analysis by the persons uploading them. This is an area where informed consent for the uploaders’ views to be included in a particular research study is absent, and more generally, inclusion in any kind of research consent is non-existent unless specifically detailed in the social media sites terms and conditions, (which most users are unlikely to read). It is difficult to quantify to what degree users of social media might object, if they found out that their online uploads were also to be found in a research article, having been anonymised, analysed and dissected with a specific question in mind.
Also, there is the issue about where such research information is stored; a Youtube clip that has been analysed would presumably be stored and saved in the researchers’ place of work, as with any other form of audiotapes from qualitative interviews. A subject’s personal views, in addition to being in their intended place online, are also now in print or on file elsewhere, e.g. in a scientific journal where they can be viewed by a different audience, or in a research centre’s storing facility.
Publicly available, therefore fair ‘research game’?
Issues surrounding (informed) consent, so integral to biomedical ethics including Good Clinical Practice, are going to be increasingly challenged by this interesting, very accessible new form of research. Both the General Medical Council and the British Medical Association have issued guidance on social media use for doctors, mainly focussing on conduct and confidentiality issues. But what is also needed is detailed guidance on how this effects the research domain, for instance from the Medical Research Council within their Good Clinical Practice recommendations.
On the other hand, this openly available data can provide potentially valuable and very raw insights into patient and carer experience and some researchers may feel that this publicly available information is ‘fair research game’.
Metamorphosis: from caterpillar to butterfly and from tweet to research quote
Our palliative care research centre initiated a quality improvement project, exploring associated ethical dilemmas. The research centre has no definitive set of ethical or practical guidelines to inform work with social media, so the centre initiated two consensus days to construct a workable, ethical framework for future research in the field. The consensus days were constructed to discuss and debate the complex ethical challenges embedded in social media research. The ethics of using social media, specifically in relation to privacy and anonymity and public/private domains were debated. Researchers within the centre (n=8), including experienced post doctorate social scientists, clinical academics and two external experts in online research met to focus on constructing a set of ethical guidelines. Issues of confidentiality, anonymity and informed consent were all discussed.
A framework for social media research was proposed with specific criteria relating to recruitments of participants, information giving, and consent, and will form part of a forthcoming discussion paper in a learned journal. The consensus was that using historical text is problematic and therefore not encouraged. Closed forums created specifically for research purposes are considered to be the most appropriate way to conduct online research.
The view of participants was that social media provide a unique opportunity for palliative care research. What is of paramount importance though, is that ethical principles in relation to this medium are clearly defined and that guidelines are in place prior to the commencement of any such research activity. We feel these need to be in place and addressed within the published research paper in order for the informed caterpillar to become an ethical butterfly.
(1) Chou W-YS, Hunt YM, Beckjord EB, Moser RP, Hesse BW (2009) Social media use in the United States: implications for health communication. Journal of Medical Internet Research 11: e48. doi: 10.2196/jmir.1249
(2) Taubert M, Watts G, Boland J, Radbruch L Palliative social media. BMJ Support Palliat Care 2014;4:13–18. [Abstract/FREE Full text]
(3) Comabella C, Wanat M Using social media in supportive and palliative care research BMJ Support Palliat Care doi:10.1136/bmjspcare-2014-000708
(4) Naslund JA, Grande SW, Aschbrenner KA, Elwyn G (2014) Naturally Occurring Peer Support through Social Media: The Experiences of Individuals with Severe Mental Illness Using YouTube. PLoS ONE 9(10): e110171. doi:10.1371/journal.pone.0110171
4 Dec, 14 | by BMJSPCblog
Dr Clifford Jones a Macmillan GP Facilitator in Aneurin Bevan Healthboard summarises a workshop seminar he attended at a Macmillan GP conference in London.
Conference Twitter hashtag: #Macmillanpros
What happens to our presence on social media when we die? And how do palliative care patients and professionals use social media? These were some of the questions posed to a group of (mainly) GPs at the Macmillan Professionals primary care conference workshop titled ‘Can we palliate social media?’. For example, take a step back and think to yourself where all your digital photos are stored? How many different social media and email accounts do you have? What will happen to your online presence when you die or while you are dying and unwell? The speakers at our workshop were experts in this field, James Norris, a social media strategist and founder of internet start-up Dead Social and Dr Mark Taubert, a Palliative Care Consultant with an interest in social media developments in healthcare.
The discussion moved, as you would expect in a room full of healthcare professionals, to how social media effect the way we interact with our patients. There was a great deal of variation of experience of using social media, from the semi-experienced to novices and reluctant participants. A collective shiver went up the spine of the audience when we were asked ‘do you know what people are saying about you and your surgery online?’ Because the truth is most of us don’t know. Should we find out, should we try to manage what is being said or at least contribute to whatever story is being told about us?
Whatever your opinion is on social media, and their uses in healthcare interactions, you can’t completely put your head in the sand, even if you choose not to take part. As an example of one of our discussions on the day, should the doctor working on a Cystic Fibrosis ward agree to be in that ‘Selfie’, that a patient there may casually suggest to take, perhaps perfectly innocently, as part of their microblog diary of their treatment course? For many people it is perfectly natural to say hello to the world via Facebook at the beginning of the day, before verbalising the same sentiment to those they live with.
And if your social media ‘diary’ is such an integral part of your life, then naturally it will be an integral part of any illness you suffer. Be it by communicating your experience to others via Twitter or Youtube, or even causing concern to your friends by your uncharacteristic absence from Facebook, for instance when you are very ill/ receiving chemotherapy, as an example. Recent high profile social media campaigns by individuals sharing their experience of illness with the world has shown how this can have a positive effect on society as a whole, not just the individual’s own patient experience. (For example the #hellomynameis campaign)
But we also heard from Dr Taubert that there are those for whom a withdrawal from a very active social media life means that they may be in quite a dark place mentally, and his own clinical interactions with patients reflected this. In fact, asking patients about their social media use (or disuse) during their advanced illness, could often be a starting point for significant discussions about how they felt about their image, and sometimes even provided a starting point to talking about death, dying and legacy creation.
Many people live their lives partially through social media. And to some extent, it is postulated, these forms of self-expression can act as palliative social media (article by Taubert et al); the natural evolution of this is that we will begin to tell the stories of our dying, our deaths and how we lived in the same way. Patients and their relatives will now routinely ask about accessing free Wifi services in healthcare settings, and not being able to offer these is becoming somewhat unacceptable, not just to younger people but also older patients with high internet use. Social media for some of us will provide the opportunity to leave a lasting message and legacy to our loved ones. Platforms like Dead Social can even provide a way to communicate important messages after we have died, and have executors who manage passwords, pages and planned postings after our demise. Perhaps a form of advance planning on social media. For those of us who work in healthcare, and in particular palliative care, it is high time to decide on whether we are willing to be part of this communication revolution in as much as we are already part of the lives and deaths of those we treat, or do we just ‘log out’ at this point?
20 Nov, 14 | by BMJSPCblog
by Dr Katherine Regan, Clinical Psychologist, Wales, UK
Dr Regan shares her experiences working in close collaboration with a specialist palliative care team at Velindre Cancer Centre in Cardiff, Wales. She discusses why collaborative working across both areas is a useful model for the future and how both fields can learn much from one another.
The following account is a reflection on joint working between clinical psychology and specialist palliative care services. This was in the context of weekly palliative care meetings within a multidisciplinary team (MDT) structure and also shared clinical encounters on the wards and in outpatient clinics in a large tertiary cancer centre in Wales between 2013 and 2014. At the time, I was completing my PhD thesis in clinical psychology and also working as a clinical psychology trainee and I have outlined my findings and thoughts on this experience in the following paragraphs.
Being a part of the Palliative Care MDT
As a clinical psychology professional having just started working in a tertiary cancer centre, I was asked whether I would like to join the weekly specialist palliative care meetings. Multi-disciplinary team (MDT) working is a fundamental cornerstone to the delivery of holistic, compassionate palliative care services (NICE, 2004), so I was keen to see this process in action, as someone who had not previously worked on a palliative team before. It provided me not only with an understanding of how palliative care as a specialty works, but a number of other reflections, too. For instance, I was someone who was experiencing this sometimes scary, daunting, even sad sounding specialty for the first time, with perhaps similar notions and preconceptions as touched on in an article by Mark Taubert (Taubert, 2013), but these were very swiftly cast aside.
From an early stage, the meetings felt like a safe space where insights into patient care were discussed refreshingly candidly and openly. All its members, independent of their professional background, contributed very actively; additional perspectives were actively encouraged. In these meetings I was able to discuss my concerns and queries from a psychology professional’s perspective, such as enquiring about patient consent, care planning, involving friends or family and offering insight into assessing psychological wellbeing and risk. Topics such as pain management, communicating with patients and families and end-of-life care-planning came up frequently. Areas of uncertainty were flagged, and the excellent Cancer Research Wales Library in Velindre Cancer Centre were sometimes able to provide same-day evidence for clinical queries, which were fed back at each palliative MDT meeting. Through enhancing my understanding of medical and palliative issues, I was better informed when supporting my own clients, having a deeper understanding of the medical and supportive healthcare context that surrounds them.
My regular MDT involvement developed into providing teaching for the team on skills in assessing and managing psychological risk and extended to developing bespoke teaching/supervision sessions for the team on issues suggested by the team (e.g. using mindfulness in practice and anxiety in cancer/palliative patients).
I was privileged to observe the team at work and witness their style of communication with palliative patients. Palliative care doctors and nurses were able to have meaningful conversations with patients about their choices, treatments, wishes, and preferences within the end-of-life context. Their communicative style appeared to enhance making shared, patient-informed decisions about end-of-life care. These conversations were happening in a very respectful and emotionally-containing way, despite the distressing context for patients and families. Topics of conversation were wide-ranging, from specifics surrounding cancer pain management to use of social media as a support mechanism through prolonged inpatient hospital stays.
The team recognised the coping strategies patients and families can rely on during times of distress and pain, and were able to normalise these responses as opposed to pathologise them. These skills in formulating/contextualising the problem, instead of placing ‘problems’ within the patient, mirrors the aim of clinical psychological assessment and intervention-planning.
In a setting where clinicians and patients are making life-changing decisions concerning the risks and benefits of proposed cancer treatments, the communication skills of palliative care professionals will be hugely beneficial if an avenue for sharing these skills with other cancer care professionals is developed.
Challenges and hurdles facing Palliative Care and Psychology Teams in Cancer Settings
The intuition about a patient’s experience of distress was very genuinely displayed in many of our MDT discussions. However this skill may also represent a barrier to clarifying patients’ understanding, expectations and wishes in end-of-life care, for both psychology and palliative care professionals. It is well understood that when professionals identify, or strongly empathise, with patients it can feel even more difficult to see those patients struggle with their life-limiting condition. This level of identification with patients may inadvertently influence our assumptions, or conclusions, about what these patients may be thinking, frightened of, or hope for, as we start to imagine how we would be coping in those circumstances. Discussing death and dying is uncomfortable, and even the best communicators can fall victim to psychological defences that arise in order to deal with this discomfort e.g. avoiding asking difficult questions in order to rescue the patient from their existential anxieties, or interrupting silences that may feel uncomfortable but should be left to give the patient time to formulate their distress.
During my work with the team I became aware of the teams interest in self-care, especially within the context of receiving frequent referrals for patients who had become distressed while admitted on the wards. It could be easy to feel that palliative care’s role was to ‘fix’ patients when they become upset, through medication and support. This is often a shared experience for psychological services, where an influx of referrals can occur in the context of a patient’s distress over diagnosis, prognosis or end of curative treatment.
If both psychology and palliative care are thought of as services that can ‘rescue’ patients from their (understandable) distress, joint-working may have an impact on improving a wider understanding of our services. Sharing our professional goals, values and skills in managing distress and communication has been beneficial between palliative and psychology services; therefore it may prove beneficial to share this understanding, jointly, with other professionals within cancer services.
However, challenges for maintaining and developing a clinically effective working relationship between psychology and palliative care exist. Finding the time and space for palliative care professionals to develop psychologically-informed techniques in managing distress and pain, and feel confident about them, is difficult. Perhaps continuing to cultivate a reciprocal relationship between psychological services and palliative care is one solution, where a venue to discuss and learn from cases can be developed. Creating opportunities for psychology to model or share their clinical practice with palliative care colleagues may also normalise the use of psychologically informed communication skills and strategies.
Cultivating Compassionate Care through MDT working
The experience of being ‘assimilated’ into the palliative care MDT leads to a conclusion that a pre-requisite to delivering compassion in care is cultivating compassionate care within multidisciplinary relationships. As a professional outside of the palliative care team I was welcomed into a team that values being proactive, emphasizes active participation, agency and being collaborative– which is what psychologists recognize as key facets to developing clinically effective therapeutic relationships for psychological interventions (e.g. Cognitive Analytic Therapy, Ryle and Kerr, 2002).
Self-care within cancer services is a challenge in itself. Cultivating a MDT that cares for its team members, as well as its patients may enhance delivering compassionate care, as it is thought that compassionate role models can energise staff and enhance others’ ability to be compassionate. (Chellel et al, 2013) Having strategies for promoting self-care can increase personal and professional wellbeing and improve patient care. Sanchez-Reilly and Morrison et al (2013) describe validated methods for enhancing self-care for professionals when caring for patients with life-limiting cancer. These strategies include:
1) create a network of peers and co-workers and stay connected with them on an ongoing basis,
2) improve communication and management skills by seeking additional training,
3) practice meaning-based coping by sharing personal and professional sources of meaning and incorporating into daily practice.
Upon reflecting on the working relationship established between psychology and palliative care, it was apparent that the MDT itself embodied these strategies intuitively. Compassion is a value recognised by healthcare professionals, patients and the public yet it can be difficult to describe it. It is represented in many ways; a word, a smile, an act of kindness, or by listening to another person. The evidence shows that compassion is seen in small things that make a big difference to one’s comfort (Compassion in Practice, 2013). Compassion makes people – patients and professionals- feel cared for, and can be embodied within an MDT that makes one feels proud to be a part of.
Chellel, A, Ramage, C and Watters, P (2013) A Theory of Compassion as Revealed by the Narratives of Nurses, Patients and Relatives. Brighton: Brighton and Sussex University Hospitals Trust.
NHS England (2013).Compassion in Practice – One year on. http://www.england.nhs.uk/wp-content/uploads/2013/11/comp-pract-1yr-on.pdf (accessed on September 30th, 2014).
National Institute for Clinical Excellence (NICE) (2004). Improving Supportive and Palliative Care for Adults with Cancer. http://www.nice.org.uk/guidance/csgsp (accessed on September 30th 2014).
Ryle, A. and Kerr, I.B. (2002) Introducing Cognitive Analytic Therapy: Principles and Practice. Chichester, Wiley.
Sanchez-Reilly, S., Morrison, L. J., Carey, E., Bernacki, R., O’Neill, L., Kapo, J., … & deLima Thomas, J. (2013). Caring for oneself to care for others: physicians and their self-care. The Journal of Supportive Oncology, 11(2), 75.
Taubert M Palliative Care- A depressing specialty? BMJ blog http://blogs.bmj.com/bmj/2013/10/14/mark-taubert-palliative-care-a-depressing-specialty/ (accessed on 06/11/2014)
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