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A Starter’s Guide to Twitter and Hashtags for Hospice and Palliative Medicine

29 Apr, 15 | by BMJSPCblog

By Dr Matthew Katz, MD  @subatomicdoc

Department of Radiation MedicineDr_Katz2

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?

Introduction:

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.

Table 1:

Hashtag First Use Chat Frequency Chat Time (GMT) Tweets (in thousands)*
#hpm Sept 2010 Weekly 1 AM Thurs 306.5
#hospice Sept 2010 189.1
#palliative Sept 2010 104.6
#dwdchat Jun 2011 Discontinued 43.7
#eol Jan 2011 39.4
#hpmglobal Mar 2012 Weekly 12 Noon Mon 33.3
#hpmjc Jan 2014 Monthly Varies 3.7
#PallOnc Aug 2014 6.5

* As of 6 April 2015

Hashtag leaders

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.

Source: Twitter.com

 

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.

Crowdsourcing tactics

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

Twittergate, or what to consider at academic conferences when using social media

27 Mar, 15 | by BMJSPCblog

by Dr Mark Taubert  @DrMarkTaubertWP_20150225_19_41_50_Pro

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.

News and updates from www.palliativedrugs.com

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.

 

Safety alerts

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.

 

Hot topics

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:

  • benzodiazepines; clonazepam, diazepam, lorazepam, oxazepam, temazepam
  • opioids; diamorphine, methadone, morphine
  • psychostimulants; amphetamine
  • others; cannabis-based medicines (e.g. Δ9-tetrahydrocannabinol), ketamine.

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.

MHRA: Information for patients
Department for transport: Guidance for health professionals
Department for transport: Information for patients
Department for transport: Drugs and driving

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.

 

Drug Updates

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).

 

Latest Additions

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:

Chapter 04: Antihistaminic antimuscarinic anti-emetics (minor change)
Chapter 04: Quick Clinical guide: Vertigo (new)
Chapter 06: Urinary tract infections (minor change).

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:

  • Will I become addicted?
  • How soon will I become pain-free?
  • What should I do if I forget to take a dose?
  • What can I do if the pain comes back between regular doses?
  • What about unwanted effects with skin patches?
  • Do strong opioids have many unwanted effects?
  • What is ‘spinal’ morphine?

It is available via our store now priced £3.99 (discounts available for purchases of 10 or more) or from amazon. For more information, click here.

 

Prepared by Sarah Charlesworth and Andrew Wilcock

Metamorphosis of an upload

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

Metamorphs

 

 

 

 

 

 

 

 

 

 

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

Palliating Social Media – a seminar workshop at the Macmillan Professionals Conference in London

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.

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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?

Psychology and palliative care services working together- on cultivating multi-disciplinary meetings and ensuring compassion in care

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.

Introduction

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.

Puzzle

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.

References

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)

News and updates from www.palliativedrugs.com

16 Jun, 14 | by James Smallbone, Publishing Assistant

9th June 2014

Selected items from the News and Latest Additions sections of www.palliativedrugs.com, the world’s leading palliative care website.

 

Hot topics

NICE Evidence Update: Opioids in palliative care
The UK National Institute for Health and Care Excellence has produced a summary of the selected new evidence relevant to the use of opioids in palliative care since the NICE clinical guideline: Opioids in palliative care (CG140) was published in 2012. The new evidence identified in this Evidence Update (58) is not expected to have any impact on the existing guidance. For more information, click here.

 

Drug updates

Tramadol to become Schedule 3 Controlled Drug
Tramadol, currently a Prescription Only Medicine (POM) will become a Schedule 3 Controlled Drug as from 10 June 2014 in England, Wales and Scotland. Controlled Drug prescription requirements will apply, but it will be exempt from safe custody requirements. This follows a consultation by the advisory Council on the Misuse of Drugs (see our news article 14 March 2014). For more information, click here.

Zopiclone and zaleplon to become Schedule 4 (Part 1) Controlled Drugs
Zopiclone and zaleplon currently both Prescription Only Medicines (POM) will become Schedule 4 (Part 1) Controlled Drugs as from 10 June 2014 in England, Wales and Scotland. This brings them under the same category as zolpidem and the benzodiazepines (except temazepam and midazolam). For more information, click here.

Ketamine injection supply problems
Pfizer UK has confirmed that it is currently out of stock of ketamine (Ketalar) 10mg/mL and 100mg/mL injection and that the 50mg/mL injection is very low. There have been supply problems with ketamine injection since November 2012 (see our news article 21-09-2012). The ketamine 10mg/mL and 100mg/mL are not expected to be back in stock until March 2015. There are currently no further details on the 50mg/mL injection. For enquiries please contact Pfizer customer services (01304 616161).

 

Latest additions

PCF updated monographs
The following monographs of the on-line Palliative Care Formulary (PCF) have been updated during April 2014 and supersede those in the publication of the 4th edition of the Palliative Care formulary (PCF4) and PCF4+2013 epdf. They can be accessed from the formulary section of the website:

Chapter 01: Loperamide
Chapter 02: Haemostatics (new merged monograph)
Chapter 04: Melatonin, Anti-epileptics (new merged monograph), Gabapentin and pregabalin (new merged monograph), Carbamazepine, Oxcarbazepine, Levetiracetam, Valproate
Chapter 05: Paracetamol, Nefopam, Celecoxib (minor update), Ibuprofen (minor update), Diamorphine, Alfentanil, Quick Prescribing Guide: Management of procedure-related pain
Chapter 06: Helicobacter pylori gastritis
Chapter 07: Progestogens
Chapter 09: Ferrous sulfate
Chapter 10: Rubefacients and other topical products
Chapter 20: Quick Clinical Guide: Setting up a CME McKinley T34 syringe pump for CSCI

For a full list of all the monographs updated since the publication of PCF4, click here. Follow us on twitter @palliativedrugs for the latest updates.

Prepared by Sarah Charlesworth and Andrew Wilcock

News and updates from www.palliativedrugs.com

11 Mar, 13 | by Assistant Editor

Selected items from the News and Latest Additions sections of www.palliativedrugs.com, the world’s leading palliative care website.

 

Drug updates

 

DTB Sativex in multiple sclerosis

The latest Drug and Therapeutics Bulletin (DTB) examines the place of the cannabinoid product, Sativex (GW Pharma, UK) in multiple sclerosis. For more information click here.

 

Glycopyrronium bromide inhaler launched in UK

A glycopyrronium bromide hard capsule powder inhaler (Seebri Breezhaler, Novartis) has been launched in the UK as a maintenance bronchodilator treatment to relieve symptoms in adult patients with chronic obstructive pulmonary disease (COPD). The recommended dose is 50microgram once daily. The NHS cost of an inhaler plus 30 capsules = £28. The Scottish Medicines Consortium (SMC) has accepted Seebri Breezhaler for use within NHS Scotland. For the SPC, click here.

The National Institute for Health and Clinical Effectiveness (NICE) has produced a new medicine evidence summary for this product which can be accessed from the here.

 

Carbamazepine, oxcarbazepine and eslicarbazepine risk of serious skin reactions

The December Medicines and Healthcare products Regulatory Agency (MHRA) Drug Safety Update has highlighted the risk of serious skin reactions, including Stevens-Johnson syndrome, with carbamazepine, oxcarbazepine and eslicarbazepine in patients with European descent or Japanese origin who have the HLA-A*3101 genetic marker. The risk of serious skin reactions with these drugs is known to be associated with patients of Asian origin who have the genetic marker HLA-B*1502, and screening is recommended for patients of Han Chinese or Thai origin before treatment with these drugs.

There are currently insufficient data to support screening for the HLA-A*3101 genetic marker before treatment. Current advice is that patients of European descent or Japanese origin who are known to have the genetic marker HLA-A*3101 should only receive carbamazepine, oxcarbazepine or eslicarbazepine after careful consideration of the benefits and risks.

 

NICE evidence summary of oral magnesium glycerophosphate use

The National Institute for Health and Clinical Excellence (NICE) has published its evidence summary for the use of unauthorized (unlicensed) oral magnesium glycerophosphate for preventing recurrent hypomagnesaemia.

 

Prepared by Sarah Charlesworth and Andrew Wilcock

News and updates from www.palliativedrugs.com

8 Mar, 13 | by Assistant Editor

Selected items from the News and Latest Additions sections of www.palliativedrugs.com, the world’s leading palliative care website.

Hot topics

Haloperidol for psychosis-induced aggression or agitation

A Cochrane review has been published on the use of haloperidol for rapid tranquilisation of psychosis-induced aggression or agitation. For more information click here.

 

BNF palliative care section updated

The online BNF (December 2012) palliative care section has been reorganised and now includes new tables for opioid conversions. The new pain management with opioids section has been organised to provide guidance on specific routes for pain management. The equivalent doses of opioid analgesics table has been expanded to include more drugs and routes; also included is a new buprenorphine table and updated fentanyl patch conversion table. For more information click here.

 

Guide on advance decisions to refuse treatment

The National Council for Palliative Care and the NHS National End of Life Care Programme have produced a guide for health professionals on Advance Decisions to Refuse Treatment (ADRT). This guide supersedes the 2008 version and can be downloaded from the NHS National End of Life Care website.

 

Prepared by Sarah Charlesworth and Andrew Wilcock

New study finds that UK breast cancer patients receive insufficient pain management and palliative care

22 Nov, 11 | by Assistant Editor

A study conducted by researchers at Breast Cancer Care and the University of Southampton indicates that over a third of female breast cancer patients are in unnecessary discomfort – despite recent advances in medical management of the disease.

The cross-sectional survey was carried out in two cancer centres in the UK and assessed a wide-range of quality of life indicators amongst 235 women with metastatic breast cancer. Over a quarter of the sample reported experiencing shortness of breath (27%) and nausea (26%). Additionally, 34% of participants reported high levels of pain or other uncontrolled symptoms.

Most notably, only 7% of respondents stated that they were being treated by local palliative care services and just 6% by their GP, indicating that there may be an unmet need in terms of access to palliative care amongst the study population.

The study highlights the fact that although palliative care services in the UK are amongst the most extensive in the world, their use is still generally confined to the very end of life and they are often not used alongside curative interventions.

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