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Social Media

That was the week that was – The @NHS account takeover!

8 Sep, 17 | by BMJSPCblog

by Dr Ollie Minton

Consultant in Palliative Medicine, London, UK

Yes, yes, I know I live in an echo chamber/social media bubble and the internet is full of fake news,but unless I imagined the whole experience I was given control of the @NHS twitter account (https://twitter.com/nhs?lang=en) for the week of the 28th August.

The premise: the account, each week,  is given to someone in the NHS – be that a professional or a patient. I was initially asked to run the account to coincide with Dying Matters week http://www.dyingmatters.org/AwarenessWeek but the 2017 General Election scuppered that plan. Blame Theresa May.

For those of you who don’t do “social media” the rest of this won’t necessarily make much sense, but I had 24,000 accounts (people / organisations / robots and the like) following my output. I have no idea who sees what, or perhaps more importantly does anything with it as a result. Although the interactions I had were 99% positive and those that weren’t, were simply ignored.

The remit is vague and that’s deliberate – YOU are in charge, you respond as you see fit and you yes YOU (like fighting fantasy books https://en.wikipedia.org/wiki/Fighting_Fantasy ) control your destiny. ‘Ah, ha, ha, haaaaa!’, I cried, channeling my inner Trump and started tweeting.

There are rules and guidelines but as a professional & more importantly a twitter aficionado I felt fairly comfortable with my outline plans.

So far so good: I had a notion of what I felt was important to me – namely communication, early referral and planning ahead. I wanted to raise 7 day services, research and money without getting too political. I was absolutely sure I was not going to send out a single paper or report or anything remotely “corporate”. However I did want it to be educational and informative and so I posted a few (more than a few) links to share.

I was taking my lead from previous weeks, the trust communication people & the team at NHS HQ (Jess).

We had an hour long teleconference: The only clear instructions I took away were
1) Quote tweet – so the chain of tweets can be seen underneath and so people can see what you’re replying too
2) Turn the phone horizontally when filming.

3) Don’t be like Donald Trump or Grumpy Skeletor

I remembered point 1 , forgot point 2 and 3, so the 1st of five films I made during the week which was promptly sent on to the masses by the official NHS England account was a bit tricky to view. I think the novelty of a geriatrician Jo  talking about a podcast she makes (http://thehearingaidpodcasts.org.uk/ ) obviously ticked all the necessary boxes.

Interestingly my “controversial” segment (not very, but was talking about weekend visiting & 24/7 cover and services) was taken up by the trust – perhaps as they are still promoting 24 hours in A&E (http://www.channel4.com/programmes/24-hours-in-ae).

The elements of my professional life I assumed would be most useful apart from all the Daily Mail headlines – those on syringe pumps, money, advance care planning, barely rippled in my notifications.

I’d like to think I did not compromise what I chose to share and mention. I was a LOT more conscious of everything I did than on my personal account and there were certainly less retweets of cat or dog pictures, and no Grumpy Skeletor regardless of my wish to have my tweets “go viral”.

If anyone has had any prompting from someone as a result of seeing or hearing about my week please do let me know in the comments section below or on Twitter.

The analytics are a dark art. The “impressions” came in at 865,000 for the week. The link clicks – (someone acted on a tweet) were 1,500 for the week. To my mind that feels like a success, a ripple in the chaotic pond of constant online information waterfall to mix all the metaphors.

I can only guess as to their impact, but I have a great selection of my hits for a permanent record for my CV and obviously everything on the internet lives forever – unlike us mere mortals.

Pejorative Words or ‘The bed blocker with acopia in bed 14 that passed away, having lost her fight’

16 Aug, 17 | by BMJSPCblog

By Dr Ollie Minton (Consultant in Palliative Medicine, somewhere in London town), Dr Erica Borgstrom (Medical Anthropologist, Open University), Dr Mark Taubert (Consultant in Palliative Medicine, somewhere in Wales)

 

 

 

 

 

 

 

 

When The Adventures of Huckleberry Finn was first published, readers were not much disturbed by Mark Twain’s use of the n-word, let alone ‘injun’, terms that have been replaced by slave and Indian in the latest versions. Back then, profanity and public morality were hotter issues and they would have found today’s scrutiny of those terms curious. We are all guilty of using a patois that we have acquired in our jobs, often handed on to us by our seniors and long-established colleagues. Indeed these turns of phrases are so commonplace that there is an ever growing list known to journalists far and wide; there are examples in book form, as well as frequently updated phrases, and an ever on-going debate on clichés and jargon on twitter ( for example: https://twitter.com/johnrentoul). This is – as you can imagine – not a new phenomenon and we all can quote examples of eye-rolling management speak.

But the term pejorative language refers to words and phrases that hurt, insult, or disparage someone or something. Also called a derogatory term or a term of abuse. The label pejorative (or derogatory) is sometimes used in dictionaries to identify expressions that offend or belittle a subject. Nonetheless, a word that’s regarded as pejorative in one context may have a non-pejorative function or effect in a different context.

Some see banned words and phrases as a sign of an ever-increasing political correctness society, others point out the offence that has been caused. Take the often used description ‘anti-ageing’ in cosmetics. You have heard it frequently, but did you ever think that perhaps older people may find it challenging and off-putting?

A list of verboten ‘bon mots’ listed on a whiteboard in a Welsh hospital circulated on Twitter recently, which had specific relevance to the specialty of palliative care. Whether we can agree on a definitive list remains to be seen – that’s for the comments section below. But it is a core set to get us started and a visual summary of ideas collated so far.

The themes that emerged were euphemisms for death or dying like “pass away” or “pass on”. Phrases like “nothing more can be done”, or “they lost the fight” were also scrutinized. Spelling errors like the extra ‘d’ that some people add at the end of ‘advance’ in Advance Care Plan were seen as minor irritations that distort the true meaning of a phrase.

The language we use day to day in medicine was put in more spotlight in a recent TEDX talk  by Dr Mark Taubert. We try to select our words carefully and sensitively – or at least should do within the specialty – which is to say we recognise the need for careful phrasing of uncertainty, prognostication, and deterioration, “while fostering hope”. Equally we cannot control the public perception or media interpretation of what we do; the word “pathway”, and all of its connotations, has stayed around to haunt us. We rarely use the term in our local settings and now have strong feelings about its use in any context in relation to dying and death. Words evoke emotions, whatever the logical side of our brain tells us about the dictionary definition.

Phrase that made the abovementioned list include: ”the patient is poorly”, “social admission”, “bed blocker”, and is “not coping” or the non-word “acopia”. These terms are judgment laden and do not necessarily add useful information to the user or the recipient. Even if they serve as a form of professional shorthand, they are usually woefully inaccurate and obscure a person’s experience. The lack of objective outcome measures perhaps compounds our ability to convey this.

In summary we should all expect “best supportive care” whatever the diagnosis or stage of illness, even when a full recovery can be expected. It should not require a room full of professionals at the MDT (multidisciplinary meeting) to decide on this, especially in the absence of the patient themselves. It should certainly not imply that “nothing more can be done”. What the ‘banned phrases’ list does is challenge how we articulate what palliative care does and how we talk about patients in perhaps a more respectful way, rather than describe them as “the ovarian in bed 14.”

End note: if you want to find out more about the visual summary of ‘banned phrases’ and how to create your own, see the Twitter discussion initiated by Dr Mark Taubert and the resulting blog and graphics by Dr Erica Borgstrom.

Men and Grief – Beware of typecasting

9 May, 17 | by BMJSPCblog

 

by Dr Mark Taubert  @DrMarkTaubert

Clinical Director for Palliative Medicine, Velindre NHS Trust, Cardiff

There are three good reasons for writing this little essay about the spectre of grief:

1) It is contemporary and topical – for instance, we are in the midst of Dying Matters Awareness week.
2) I have recently spoken to a few prominent individuals about patterns of grief in men, including the rugby presenter Phil Steele and the #HelloMyNameIs campaigner Chris Pointon. What they told me made me look at grief from a different perspective.
3) This morning, I taught medical students from Cardiff University about instrumental and intuitive grief after our ward round, and I promised them I’d tweet something useful about it later today.

I hope the following thoughts constitute an attempt at something useful.

Do men and women, when grieving, follow a set pattern? Are male and female grief experiences predictable? Healthcare colleagues sometimes list examples of male patients who haven’t accepted a diagnosis, or they recall clients who declined help after the death of a spouse – these men are then said to be in denial, or are inadequately expressing their true feelings. Certain professionals feel that the poor soul ought to cry while they are counselling them, so that the real healing process can fully commence. This assumes that only one style of grieving is correct. It does not always chime with what I see in practice.

Grief is not merely about the loss of someone who has died, it also encompasses what happens to us after other cataclysmic life events. Losing our health, our liberty or our independence, can be examples. Many will be familiar with the Kuebler-Ross stages of grieving, but in recent years, psychologists like Doka and Martin have categorized types as well: these are called intuitive and instrumental grief.

Intuitive grief on one end of a ‘grief continuum’, can be associated with our contemporary cultural generalizations on how women grieve:

– An emotional style of expressing grief
– Expressions that mirror feelings ( ‘he/she was like an open book’)
– Moving forward involves exploring and expressing feelings, progressing through the pain in order to heal.

Instrumental grief, on the other end of the continuum, can be associated with the perceived male way of grieving:

– More thinking than feeling (an inward, quiet process, less expression of emotions)
– More cognitive and action-oriented
– Being physical, expressing grief through doing something (such as busying yourself with work, spending more time in the shed)

Unsure about these gender stereotypes of grief, I did some further reading and talked to  a few men who had been affected by grief.

I was particularly interested to explore how a male griever’s environment might react and respond. I contacted Phil Steele, Welsh rugby broadcaster and former player who wrote an autobiography entitled ‘Nerves of Steele’. His book deals with depression in men. I wanted to speak to him about his experience of losing his wife, and how the environment around him had reacted.

“I actually felt comfortable speaking about the loss of my wife and asking for help from others after it happened,” he says. Phil had experienced depression in the past, which he feels put him in a better place to seek help more actively. The awkwardness arose when he noticed that some of his male friends were surprised about how ready he was in opening up about his feelings. Over a couple of beers and a curry, the conversations did not always flow easily.

“Although I found these occasions helpful, I felt that on such nights the conversation would be mens’ talk – rugby, football cricket. Not about how I was feeling, or coping. Their emphasis was very much on trying to take my mind off things,” he reflects. Such social occasions would not always allow the opportunity to tell friends how he was feeling – especially if he was experiencing a bad day.

Psychologists suggest that there is a constellation of more than forty social, physical and psychological factors that form a complex network for each unique grieving episode. An individual’s grief process is seen in expert circles as so unique, as though it were a finger-print. And the immediate environment will form part of this experience.

Whilst being male or female is another one of these many factors, it is not all-defining. Indeed, my observation from years of clinical practice in Wales has been that men predominantly lean more towards an instrumental style of grief; but the learning point for me has been that whilst grief is influenced by gender, it is not determined by it.

I had the recent privilege of meeting Chris Pointon. When his wife, Dr Kate Granger died last year, the world was listening; Kate and Chris have been strong voices for better care at the end of life on Twitter, and their #HelloMyNameIs campaign is going from strength to strength. Kate posted Tweets from her deathbed, and one of her wishes was for more open conversations about death, dying, grief and loss.

Chris is an incredibly busy man, maintaining a job in logistics with speaker requests from all over the UK. He spoke movingly at the #SAMCardiff conference (Society For Acute Medicine) about his grief when he lost Kate. Like so many, he finds the legacy work fulfilling and deeply meaningful. He spoke very openly about how helpful this activity has been to him in dealing with the full impact of the loss of someone he loved so deeply.

It struck me that people working in healthcare have very little guidance on how to deal with individuals who are experiencing severe grief and struggle to come forward for help. My five key messages are as follows:

– Many men and women will experience a form of blended grief. They will be somewhere on the continuum between instrumental and intuitive grief.

– Some people will oscillate between the two ends of the spectrum. This may be influenced, for instance, by how safe they feel to express their vulnerability. It is also influenced by factors such as context and additional life stressors.

– Don’t shoehorn. Men are not always instrumental grievers and women aren’t always intuitive grievers. Always fitting men/women into one pattern may deprive them of the approach towards grief that may fit best.

– Again, don’t shoehorn: there is still a presiding culture in healthcare that nudges grievers towards intuitive grief management (expressing emotion openly, group therapy). This is well-intended, but may be unhelpful for a more instrumental griever.

– Instrumental grievers may feel guilt if they perceive that people around them are assuming that they are not ‘grieving properly’. “Why does he never cry?”; “She should not be going on holiday so soon after her husband’s death!” are examples of unhelpful commentary that I have heard.

If you are a friend, colleague, relative or acquaintance of someone who is grieving, male or female, the best recipe to help make life a bit less unbearable for that person will include a combination of the following: a bit of bravery in approaching them, being non-judgmental, being patient and offering affirming, reassuring words over time. Observe and respect reactions, and learn as you go along.

“I am here for you, don’t hold back if you want to chat.”

“I’m going to cook a meal for you next week, pick the day!”

The rest will follow.

Nick Cave interview; source: GQ magazine

 

Palliative care in space – breaking bad news to a satellite

9 Feb, 17 | by BMJSPCblog

Fengyun, a piece of space debris orbiting Earth

by Dr Mark Taubert, Consultant in Palliative Medicine at Velindre NHS Trust, Cardiff, Wales @DrMarkTaubert

What do you do when a piece of debris in space sends out a distress message via Twitter? This particular message read as follows: “Your people predict I will burn up in Earth’s atmosphere early 2017. You’ll get messages until then. I don’t want to die.”
How poetic, I thought and then did a bit of research. ‘Fengyun’ is a piece of space junk currently orbiting Earth at 28,000 km/hr. Fengyun, and two other pieces of space debris form part of ‘Project Adrift’, devised by Cath Le Couteur and Nick Ryan. It is an artistic exploration of the secret world of space junk, and the problems with it. You can see a film about it here.

But let me give you a bit of the past medical and social history for this particular palliative care patient, before we look at approaches to managing his or her distress:
Fengyun was once an important part of Chinese weather satellite FY1C, until it was blown into thousands of fragments by an experimental anti-satellite missile. Fenyun might burn up soon, but millions of other pieces, including Fengyun’s estimated 2840 siblings, will continue to circulate. They are potentially dangerous, too; any one of them could crash into a working satellite, currently in orbit, which poses risks for telecommunication and security.

What are this particular satellite’s main ideas, concerns and expectations? I think someone, in not too kind and compassionate a way, has broken it to Fengyun that he/she is going to die. I think the bad news was broken via electronic means, given that it is highly unlikely that a face-to-face discussion will have occurred in space. Someone dropped the bombshell that Fengyun will die by burning, quote: “I’m atmosphere intolerant, it makes me burn, and I have until early 2017, and then it’s death by close orbit“. Fengyun is now understandably frightened and distressed.

It did remind me of palliative care encounters and stories here on Earth that I hear on a monthly basis. The way news is broken about inevitable death, due to, for instance, an illness like secondary cancer, is at times insufficient. “I was told over the phone that it’s terminal.”, or “They were on a big ward round, came to my bed, one person who didn’t introduce himself spoke to me from the end of the bed, and Bang: –You’re dying!- “

 

Of course, breaking bad news is a very complex communication task. In addition to the verbal component of actually giving the bad news, it also requires other skills. These include responding to a patients’ emotional reactions, involving the patient in decision-making, dealing with the stress created by patients’ expectations for cure, the involvement of multiple family members, and the dilemma of how to give hope when the situation is bleak. The complexity of the interaction can sometimes create serious miscommunications such as patient misunderstanding about the prognosis of the illness or purpose of care. Poor communication may also thwart the goal of understanding patient expectations of treatment or involving the patient in planning next steps.

Many doctors and nurses will have heard of various forms of guidance to delivering bad news, one of which is the SPIKES mnemonic (1) and I will try to summarise what I might have done initially to help Fengyun:

STEP 1: S—SETTING UP the serious illness conversation: get the setting right and ensure privacy (no space debris should enter the palliative care space station whilst I am talking to Fengyun). Also, ensure Fengyun has significant others with him/her, in this case perhaps @VanguardAdrift another piece of space flotsam who is in the upper reaches and not at imminent risk of burning up.

STEP 2: P—Assessing the Patient’s PERCEPTION
Before discussing the aeronautical and astronomical findings, the palliative care space practitioner uses open-ended questions to create a reasonably accurate picture of how the patient perceives the situation- what it is and whether it is serious or not. For example, “What have you been told about your orbiting situation so far?” or “What is your understanding of the reasons we ran the earth re-entry probability test?”.

STEP 3: I—Obtaining the Patient’s INVITATION
While a majority of satellites may express a desire for full information about their prognosis, some may not. When a clinician hears a patient/satellite express explicitly a desire for information, it may lessen the anxiety associated with divulging the bad news. However, not wanting information is a valid psychological coping mechanism and may be more likely to be manifested as things become more serious. Discussing information disclosure at the time of ordering tests can cue the physician/NASA scientist to plan the next discussion with the patient. Examples of questions asked of Fengyun might be, “How would you like me to give the information about the results of your orbiting pathway?”

STEP 4: K—Giving KNOWLEDGE and Information to the Patient
It is important to warn patients/satellites that bad news is imminent and this may lessen the shock that can follow the disclosure of bad news. Examples include, “Unfortunately I’ve got some bad news to tell you” or “I’m sorry to tell you that…”.
It is vital to start at the level of comprehension and vocabulary of an individual patient. Importantly, try to avoid technical words like ‘atmospheric drag’, ‘biopsy’, or ‘aerodynamic heating’. Ideally try to give information in small chunks and check periodically as to the satellite’s understanding. And avoid phrases like “There is nothing more we can do for you.” This attitude is inconsistent with the fact that satellites and patients often have other important therapeutic palliative goals such as good pain control, listening to good music including ‘Satellite of Love’ by Lou Reed and of course being listened to and understood.

STEP 5: E—Addressing the Patient’s EMOTIONS with Empathic Responses
This one seems obvious, but there are a few things to bear in mind. Responding to the individual’s emotions is one of the most difficult challenges of breaking bad news. Emotional reactions may vary from silence to disbelief, crying, denial, or anger.
When we get bad news the emotional reaction is often an expression of shock, isolation, and grief. For instance, Fengyun posted the following on 09/02/2017: “I’ve gone 4,290,595,779 km since I was born and still have no purpose other than speed and mass.” In this situation the good palliative space physician can offer support and solidarity to the patient by making an empathic response. For instance, after you have given the satellite a brief period of time to express his or her feelings, let it know that you have connected the emotion with the reason for the emotion by making a connecting statement, such as “I can see that this is upsetting news for you”.

STEP 6: S—STRATEGY and SUMMARY
Satellites with a clear plan for the future are less likely to feel anxious and uncertain. Before discussing a plan, it is important to ask them if they are ready at that time for such a discussion. Clinicians are often very uncomfortable when they must discuss prognosis and treatment options with the patient, if the information is unfavorable. The reasons for this can vary but are often down to uncertainty about expectations, fear of destroying hope, fear of their own inadequacy in the face of an uncontrollable course of action, not feeling prepared to manage the anticipated emotional reactions, and sometimes embarrassment at having previously painted too optimistic a picture.

In summary, it is vitally important to keep in touch and follow things up. Sometimes, Fengyun, when the patients I see know that time may be short, they initially react with shock, but many take solace in the fact that we all must face death at some point in our lives, and that others have gone through similar experiences. And that there is always something else that can be done. There is nothing new under the Sun.

 

Ref:

(1) Bailea W, Buckman R, Lenzia R, Globera G, Bealea E, Kudelkab AP SPIKES- A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer doi: 10.1634/theoncologist.5-4-302 The Oncologist August 2000 vol. 5 no. 4 302-311 http://theoncologist.alphamedpress.org/content/5/4/302.full

Palliative or supportive? A rose by any other name

22 Sep, 16 | by Jenny Thomas

by Dr Ollie Minton, Macmillan consultant and honorary senior lecturer in palliative medicine.

I do not assume everyone has an intricate knowledge of Shakespeare but most will be familiar with the balcony scene in Romeo & Juliet. The inference is that the name of something does not affect how it functions. I won’t extrapolate that any perceived speciality conflict is on a par with the Montagues & Capulets. Although there is an on-going debate about how we should best work together & within that how best to name ourselves.

However, if the plural of anecdote does not equal data then I am left wondering what the technical term is for the extrapolation of a single trial result. We can all accept the evidence hierarchy mantra (with some qualitative side bars) & that meta-analysis is “king”.

It is why I need to question the need to alter the word palliative to supportive.

The evidence, such as it is, comes from a 2009 trial in an American cancer centre. This was a survey of medical oncologists & while I won’t argue with the conclusions that renaming the service resulted in more referrals, I do wonder if it clouds a more nuanced issue.   Attempts to address this subsequently focus on broader working relationships and less on the specific terminology of the service. However these approaches are open to wide local variation depending on staff and organisational setup- the name of the service is one aspect. The demand for all our services is increasing year on year regardless.

I am aware the journal is called supportive and palliative care and the two words are a powerful combination. All health care professionals provide “supportive care” or at least they should, as the reports of care of the dying patient make it clear “it’s everybody’s business”. This is further complicated by regulatory guidance from e.g. the UK General Medical Council which refers to end of life care. This is probably akin to other speciality terminology – geriatricians debating frailty, deconditioning & the impact of multiple co-morbidity. We all have some understanding of these terms but the exact definition & interpretation will differ amongst professionals. We are probably all guilty of speciality specific blinkering but I’d like to think just because I have a hammer in my toolbox… A debate about the rights and wrongs of specific words is not necessarily relevant to patient care.

If the name of the service was important to patients then I would be less recalcitrant. A trial attempted to address this issue, but I am still left wondering. The design is overly complex (2x 2 factorial) in a small number of patients and the wording was combined with differing descriptions of the service.  At a time when openness and transparency to enable decision making is paramount, I don’t think a statistically significant change with a 0-10 scale is the outcome measure of choice. 

I come back to the fact we do not solely deal with cancer; any proposed name changes are as a result of at most 50% of our referrals. Anecdotally our relationship locally with oncology is clear – oncologists refer to  my colleagues in palliative care in order to develop, highlight and/or augment the serious illness conversations that palliative patients need and of course deal with their symptoms. They may emphasise certain aspects of our role – such as a focus on symptom control rather than end of life care, but I have never been aware of anyone not referred to palliative care, for fear of what our service name may do to the patient. We, for our part, minimise any obstacles to seeing appropriate patients and while there are a variety of models we can adopt, we need to be resolute in the approach and service we offer. We should be proud that a palliative ( & supportive) approach does not discriminate about diagnosis/ stage but is based on need and the name does not alter that.

It’s good to talk and even better to communicate effectively

24 Aug, 16 | by BMJSPCblog

EAB2B298-BCFB-4937-967D-0C60CBDB51C5aby Dr Ollie Minton, Macmillan consultant and honorary senior lecturer in palliative medicine

I remember the old British Telecom adverts moving from Maureen Lipman’s “ooh he’s got an ology” to the final incarnation of Bob Hoskins “It’s good to talk”. I’m fairly certain after this, the internet took off and the simple phone call was confined to the snapchat bin of history.
Judging by current commentary, we are even supposed to move beyond emails – not likely until we move away from being fax dependent- but my point is there are so many methods to “communicate”.

However when we talk about delivering bad news, a rapidly changing condition or the uncertainty of a changing illness a quick text or tweet status update isn’t quite sufficient. We as specialists pride ourselves on the ability to address all of these problems and more. As someone is approaching the end of life, communication really needs to be face to face. This is not an innate skill and it requires training to be done effectively.
While others invariably use the excuse of insufficient time, I believe lack of confidence is a significant driver of avoidance, or at the very least minimisation to address these areas. Perhaps more importantly, patients and families value these conversations especially around uncertainty & decision making in advanced illness.  We as professionals need to be able to meet these needs.

In the halcyon days of core MDT funding every member was funded to undertake an “advanced communication skills course”. While I am not going to debate the merits of three vs two days, multiprofessional , residential and so forth, there was ample evidence to support the course leading to sustained behavioural change. Sadly because of the costs involved and the lack of hard outcomes these have been discontinued. In part perhaps because there was no direct correlation to improvement in patient experience, for example. However there is a database (unpublished) of post course confidence scores addressing a variety of complex communication scenarios. The headline summary was that 12,000 clinicians were trained. The longer term impact has not been studied. We are left not knowing if this is a critical mass of professionals has achieved consistent change.

A recognition of lost time has been made in a Marie Curie report entitled the long and winding road.
This draws in all aspects of communication, as I alluded to at the start, but recognises the missed opportunities and the continued need to meet the expectation of sensitive tailored communication and shared decision making. Equally as it is now 2016, the report authors mention the impact of “Dr Google” and the influence of technology. They label it a call to action but acknowledge the four year hiatus and lost momentum after funding for communication training was withdrawn in 2012.

If I thought that revised medical school curricula and a cultural shift had solved these problems, I would rest easy. While we can teach these skills in the same way as prescribing they can only be developed with experience and relying on absorption through role modelling is insufficient and not in line with the ample evidence base on communication training.

Training previously has focused on experiential learning but using cancer as the model. The now defunct national cancer action team has given way to Health Education England , the GMC and other organisations who are responsible for post graduate development.
The development of simulation in medical education gives ample opportunities for flexibility in developing these skills provided the core elements of experienced facilitation, actors and video feedback are used. These can be delivered in a set way to small groups and provide training in particular areas as needed.

Outside of our speciality I observe limitations in conversations about advance care planning , uncertainty, escalation of treatment & of course DNACPR. This is addition to the development of delivering bad news, discussing complex treatment plans tailored to the individual patient need and so forth. However I would not want to see this merely added to a portfolio of more areas to be assessed. There needs to be some fluidity in how this is done to meet individual clinicians’ learning needs.
This approach is in keeping with elements of the recent independent cancer task force , albeit recommendation 60- a long way behind personalised medicine and the digital revolution.

In conclusion I can’t stress the importance of every health care professional having impeccable communication skills. While we have no control over all the methods an organisation uses to disseminate information, we all want to avoid the immortal aphorism of Cool Hand Luke: “What we’ve got here is failure to communicate”

Kate Granger

27 Jul, 16 | by BMJSPCblog

by Dr Mark Taubert, Consultant in Palliative Medicine, Velindre Cancer Centre, Cardiff

On  July 23, 2016, Dr. Kate Granger died at St Gemma’s Hospice.

Goodbye  Kate.

Some words. Where can we live, but days? A message you sent me in October 2013 read, “I have high expectations of myself & what I can achieve – I know these are set a little high but I do like a challenge!”

And what you have achieved. There are many wonderful tributes to you, and they are all filled with gratitude and admiration at what you have been able to change. We thought amongst the many posts, blogs and articles, this particular one from Ali Cracknell was notably poignant.

So, to remain brief but to the point: here at BMJ Supportive& Palliative Care, you will be remembered and we, too, are amongst the many who marvel at what you have created. Your presence in life and on social media, your sense of humour, coupled with that plain-speaking honesty and directness, were humbling. Extraordinary.

Images say more than a thousand words, so we have collated some of them here. Lastly, we think you may have liked this poem by Philip Larkin.

So long, Kate.

 

Days – Philip Larkin

What are days for?

Days are where we live.

They come, they wake us

Time and time over.

They are to be happy in:

Where can we live but days? Ah, solving that question

Brings the priest and the doctor

In their long coats

Running over the fields.

 

 maxresdefault

 

 Kate-Granger
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Letter to Bowie read at Hay Festival by Benedict Cumberbatch

1 Jun, 16 | by BMJSPCblog

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Benedict Cumberbatch reading Dr Mark Taubert’s BMJ SPC letter on the main stage at Hay Festival 2016

A letter written by Dr. Mark Taubert after David Bowie’ s death in January and originally published on our BMJ SPCare blog, was read out by the actor Benedict Cumerbatch at Hay Literary Festival on Saturday the 28th May 2016. Cumberbatch performed the reading as part of an event called Letters Live, organized by Shaun Usher and Simon Garfield. Letters Live celebrates the very best in literary correspondence, and returned to Hay Festival 2016 with a star-studded cast. The format is simple; letters of historical and cultural importance are performed by a series of stars in front of a live audience.

In the case of Saturday’s session, the performers represented a who’s who of British acting royalty, with Benedict Cumberbatch, Olivia Colman, Tom Hollander, Maxine Peake, Toby Jones, Louise Brealey and Mark Strong all taking to the stage of the Tata tent to narrate. Earlier this year, the singer Jarvis Cocker had read out Taubert’s letter at a Letters Live event in Freemason’s hall in London (video available here in this Telegraph article).

Mark Taubert‘s letter to Bowie was the last act of the evening, and Benedict Cumberbatch thanked ‘Dr Mark’, who was in attendance at the end of the reading. Speaking after the event, Dr Taubert said that it had been a magical moment, and that he had been particularly struck by audience members asking questions about palliative care and discussing care at the end of life after the event finished.

Benedict Cumberbatch descibed Letters Live as a way to pause and think: ‘Letters Live makes us pause and imagine the lives behind the letters read and the circumstances of their origin. It’s a privilege to read this most ancient of communications live to an audience. A truly inspiring event.’

 

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Rehearsing the letter backstage (Photo credit: Letters Live)

 

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The Digital Legacy Conference 2016

31 May, 16 | by BMJSPCblog

By Sandy Weatherburn, ‎Founder & Director at Social Embers Digital estate management

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My pledge for Dying Matters week

 

This weekend I attended the Digital Legacy Conference in Hackney, London, which was held at St Joseph’s Hospice.

The conference was organised by The Digital Legacy Association (DLA) to raise awareness of issues surrounding death and dying that are becoming increasingly important in society. It concluded a week of campaigning by ‘Dying Matters’ to encourage more people to talk openly about end of life issues.

The conference was opened by James Norris, founder of the DLA and of Dead Social, and James outlined some of the aims of his projects and how he got involved in this area. Chairing the event was speaker and funeral celebrant Peter Billingham, who runs Death Goes Digital, a company formed to give advice to the funeral industry about using digital technology. Peter spoke knowledgeably about some of the changes that are happening at funeral celebrations, including live stream funerals and photography, acknowledging that some are quite unusual and he gave us some interesting anecdotes.

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James Norris opening the Digital Legacy Conference

Gary Rycroft was the next speaker. He is a solicitor and also works as a trustee for the National Council for Palliative Care, and the Dying Matters Coalition; both organisations promote awareness of death and bereavement issues. He told us about the Law Society Wills and Equity Committee, who produce guidelines for solicitors in relation to the law governing wills, succession and mental capacity, and he outlined how new thinking is now required with regard to digital assets.

Jane Harris Edmonds spoke to us very movingly about the death of her son Josh. She outlined how this lead to her current work ‘The Good Grief Project’. We learned from Jane how through making a film of her son’s funeral, she was able to create both a physical and a digital memorial site for him, and this is still providing comfort to her and Josh’s family and friends. ’Beyond Goodbye’ is a digital tribute to her son and ‘Postcards to Josh’ still provides an opportunity for all those who knew him to share their feelings, memories and new experiences. Music, photographs, postcards, videos and words are all used to create a way for everyone to contribute in their own preferred way.

Mark Taubert, an NHS Consultant Physician in Palliative Medicine, spoke next. He started his talk by observing how Jane had demonstrated that both physical and digital spaces can be used simultaneously and creatively to remember someone. He went on to tell us about an open letter he had written in a BMJ Supportive and Palliative Care blog post to David Bowie about the late singer’s death and last months. His letter thanked Bowie for the awareness he had raised by what must have involved meticulous preparation for the last weeks of his life, knowing that his illness was terminal. He spoke about the profound effect the album Blackstar and Bowie’s music more generally had had on him and many people that he worked with, and referred to it as a ‘a work of death art’. His letter became widely talked and blogged about on social media, in the press and on TV, after being shared by David Bowie’s son Duncan and highlighted the work of palliative care professionals.

We were also pleased to connect with many others who attended the conference. St Joseph’s Hospice made us feel very welcome and this very poignant memory tree at the bottom of the stairs reminded us of how many different ways we can remember those who’s lives have now ended.

The Digital Legacy Conference is an annual, not for profit conference by the Digital Legacy Association. To find out more click here

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Memory Tree at St Joseph’s Hospice

A thank you letter to David Bowie from a palliative care doctor

15 Jan, 16 | by BMJSPCblog

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By Dr Mark Taubert, Palliative Care Consultant at Velindre NHS Trust, Cardiff, UK @DrMarkTaubert  Photo: J. Ourlin

Dear David,

Oh no, don’t say it’s true – whilst realization of your death was sinking in during those grey, cold January days of 2016, many of us went on with our day jobs. At the beginning of that week I had a discussion with a hospital patient, facing the end of her life. We discussed your death and your music, and it got us talking about numerous weighty subjects, that are not always straightforward to discuss with someone facing their own demise. In fact, your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation. But before I delve further into the aforementioned exchange, I’d like to get a few other things off my chest, and I hope you don’t find them a saddening bore.

Thank you for the Eighties when your ChangesOneBowie album provided us with hours of joyful listening, in particular on a trip from Darmstadt to Cologne and back. My friends and I will probably always associate Diamond Dogs, Rebel Rebel, China Girl and Golden Years with that particular time in our lives. Needless to say, we had a great time in Köln.

Thank you for Berlin, especially early on, when your songs provided some of the musical backdrop to what was happening in East and West Germany. I still have ‘Helden’ on vinyl and played it again when I heard you had died (you’ll be pleased to hear that Helden will also feature in our next Analogue Music Club in the Pilot pub in Penarth later this month). Some may associate David Hasselhoff with the fall of the wall and reunification; but many Germans probably wish that time had taken a cigarette and put it in Mr Hasselhoff’s mouth around that time, rather than hear “I’ve been looking for freedom” endlessly on the radio. For me that time in our history is sound tracked by ‘Heroes’.

Thanks also on behalf of my friend Ifan, who went to one of your gigs in Cardiff. His sister Haf was on the doors that night and I heard a rumour that Ifan managed to sneak in for free (he says sorry!). You gave him and his mate a wave from the stage which will remain in his memory forever.

Thank you for Lazarus and Blackstar. I am a palliative care doctor, and what you have done in the time surrounding your death has had a profound effect on me and many people I work with. Your album is strewn with references, hints and allusions. As always, you don’t make interpretation all that easy, but perhaps that isn’t the point. I have often heard how meticulous you were in your life. For me, the fact that your gentle death at home coincided so closely with the release of your album, with its good-bye message, in my mind is unlikely to be coincidence. All of this was carefully planned, to become a work of death art. The video of Lazarus is very deep and many of the scenes will mean different things to us all; for me it is about dealing with the past when you are faced with inevitable death.

Your death at home. Many people I talk to as part of my job think that death predominantly happens in hospitals, in very clinical settings, but I presume you chose home and planned this in some detail. This is one of our aims in palliative care, and your ability to achieve this may mean that others will see it as an option they would like fulfilled. The photos that emerged of you some days after your death, were said to be from the last weeks of your life. I do not know whether this is correct, but I am certain that many of us would like to carry off a sharp suit in the same way that you did in those photos. You looked great, as always, and it seemed in direct defiance of all the scary monsters that the last weeks of life can be associated with.

For your symptom control needs, you will presumably have had palliative care professionals advise on pain, nausea, vomiting, breathlessness, and I can imagine they did this well. I envisage that they also discussed any emotional anguish you may have had.

For your advance care planning (i.e. planning heath and care decisions prior to things getting worse and before becoming unable to express them), I am certain you will have had a lot of ideas, expectations, prior decisions and stipulations. These may have been set out clearly in writing, near your bed at home, so that everyone who met you was clear on what you wanted, regardless of your ability to communicate. It is an area not just palliative care professionals, but in fact all healthcare workers want to provide and improve, so that it is less likely that any sudden health incidents will automatically result in a blue-light ambulance emergency room admission. Especially when people become unable to speak for themselves.

And I doubt that anyone will have given you Cardiopulmonary Resuscitation (CPR) in the last hours/days of your life, or even considered it. Regrettably, some patients who have not actively opted out of this treatment still receive it, by default. It involves physical, sometimes bone-breaking chest compressions, electric shocks, injections and insertion of airways and is only successful in 1-2% of patients whose cancer has spread to other organs in their body. It is very likely that you asked your medical team to issue you with a Do Not Attempt Cardiopulmonary Resuscitation order (this is something we try to offer here in Wales, as part of the TalkCPR campaign for people with palliative illness). I can only imagine what it must have been like to discuss this, but you were once again a hero, or a ‘Held’, even at this most challenging time of your life.

And the professionals who saw you will have had good knowledge and skill in the provision of palliative and end-of-life care. Sadly, this essential part of training is not always available for junior healthcare professionals, including doctors and nurses, and is sometimes overlooked or under-prioritized by those who plan their education. I think if you were ever to return (as Lazarus did), you would be a firm advocate for good palliative care training being available everywhere.

So back to the conversation I had with the lady who had recently received the news that she had advanced cancer that had spread, and that she would probably not live much longer than a year or so. She talked about you and loved your music, but for some reason was not impressed by your Ziggy Stardust outfit (she was not sure whether you were a boy or a girl). She too, had memories of places and events for which you provided an idiosyncratic soundtrack. And then we talked about a good death, the dying moments and what these typically look like. And we talked about palliative care and how it can help. She told me about her mother’s and her father’s death, and that she wanted to be at home when things progressed, not in a hospital or emergency room, but that she’d happily transfer to the local hospice should her symptoms be too challenging to treat at home.

We both wondered who may have been around you when you took your last breath and whether anyone was holding your hand. I believe this was an aspect of the vision she had of her own dying moments that was of utmost importance to her, and you gave her a way of expressing this most personal longing to me, a relative stranger.

Thank you.

BMJ Supportive & Palliative Care blog

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