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The new Respect form- Aretha Franklin and our odd relationship with forms

17 Mar, 17 | by bbutcher

EAB2B298-BCFB-4937-967D-0C60CBDB51C5aDr Ollie Minton, Consultant in Palliative Medicine

Maybe I should not listen to BBC Radio 4 as much as I do, although it is always stimulating and often leads to debate. This is especially true of the Today program where the “vexed issue” of DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) was recently discussed. However the twist on the usual discussions is the introduction of a new form to allow people to have discussions about all aspects of their treatment. I have not been involved in the process but a large number of organisations have, and it’s been named the respect process.  I like the term process at the very least – it is not a one off event and implies complexity if nothing else. However, like all things paper or even IT based, the form completion is only really one aspect.

 

I ain’t gonna do you wrong, while you’re gone
Ain’t gonna do you wrong (ooh) ’cause I don’t want to (ooh)
All I’m askin’ (ooh)
 ”

 

Sorry, got a bit distracted there… All the fault of my esteemed colleague Dr Mark Taubert, who likes to draw parallels to life’s current news and Zeitgeist events, for example David Bowie’s death, or a recent story about a failing satellite.  So I am going to use Aretha Franklin’s anthem to discuss RESPECT. This is not a column about relationships per se, but about the new proposals from the resuscitation council and others.

 

The very sound aim is to move away from placing Do Not Resuscitate decisions in a special category and to more seamlessly incorporate them into routine practice and discussions, especially within the context of myriad other treatments, other than just the one procedure, CPR. The case for doing this has been made by many, including a recent BMJ column by Professor David Oliver.  I also would draw your attention to Mark Taubert’s excellent work in Wales around how to talk about CPR and DNACPR, especially towards the end of your life. Just google “Talk CPR”, or the website with patient co-directed videos can be found here. The videos aimed at educating professionals about the issue, featuring an affected patient and carer in them: https://www.youtube.com/watch?v=ImrfD4RbMDE

 

Ooh, your kisses (ooh)
Sweeter than honey (ooh)
And guess what (ooh)
So is my money (ooh)
All I want you to do (ooh) for me
Is give it to me when you get home (re, re, re ,re)

 

Oops, sorry, I was miles away there, please bear with me.

The lyrics of Aretha’s respect song are relevant not just for this new acronym  – “Find out what it means to me… I’ve got to have (just a little bit) of respect”. I think we can agree we all want that especially if time and prognosis is limited. However this is not simply a palliative medicine problem – patients are referred late to services and doctors are poor at prognostication and recognising dying. We need to get behind this as a speciality but as the saying goes “it’s everybody’s business”.

We cannot as professionals force people to have these conversations. Yet we are constantly being told that there are“inappropriate admissions” with extensive use of hospitals for frail elderly or complex patients.

That is way a public information website and campaign  like TalkCPR in Wales, with its hahtag campaign on Twitter (#TalkCPR)  is an important and bold strating point to educate everyone about the pros and cons of CPR, in particular in life-limiting and palliative illness.

 

Alongside this and far more important than cost, it is distressing and affects bereavement to be admitted as an emergency unnecessarily if “avoidable”. For example the increase in admissions we have all seen from nursing homes. I am sure hospital episode statistics will bear this out and the proposed new end of life metrics will allow for more nuance and detailed analysis in time.

 

This is a complex procedure and instilling the Respect ethos will take time, money and attention to detail. I think the medical research council framework  is a helpful guide as will the proposed Royal College of Physicians quality improvement hub. The fact that every relevant learned society and organisation is already involved should allow the right level of discourse to make it happen. When and how this filters through to the “shop floor” is as a best guess over some years. Whether this means trial by media around death lists and pathways it remains to be seen. I sincerely hope not.

 

But the Respect form must not merely become a ‘palliative’ for the distress symptoms of the medics (anxiety about having these conversations when the patient is actually still able to have them, for fear of making them frightened). And we shouldn’t just create a more benign piece of paper, with less hostile, nasty words (like death): this must also not become a ‘palliative’ or ‘sedative’ for the agitated media, hungry for yet more sinisterly worded forms, clandestinely used in hospitals, the ‘next LCP’.

 

I fundamentally believe that the form currently in its 67th version is unlikely to alter practice without significant education and training. In fact, I would rather have a really basic form without realms of information, but an extensive supporting training programme, something like a Serious Illness Conversation training project for all healthcare grades and professionals. This sort of ambitious project has already started in Wales.

 

The form itself should not be the actual training, however well it is or isn’t worded. It should not serve the purpose of assuaging those fearful of another media storm. In a sense, we should really strive for a system where the form does not matter much at all, and merely acts as an information letter from one healthcare professional to another, held by a patient or their loved-ones: “I have had a conversation about this with Mrs X. Her views are that she’d be up for any treatments doctors feel she may need, just not CPR please. Her family were there when we talked it through. Yours sincerely, Dr O M”. The qualitative text you write on a piece of paper usually trumps any tick boxes in terms of meaningfulness.

 

Yes, it’s hardly ever about the paperwork, and always about the actual ‘meat’ of these serious illness conversations. My feelings on this have not changed since August 2016.

 

Or you might walk in (respect, just a little bit)
And find out I’m gone (just a little bit)
I got to have (just a little bit)
A little respect (just a little bit)”

 

Sorry, was I singing again?

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

Menkel’s Kinky Hair versus Dilnott Fairer Care – Journeys through Nuncupation

22 Dec, 16 | by James Smallbone, Publishing Assistant

It’s eponymous my dear Watson!

Eponymous
adjective
1. (of a person) giving their name to something.
“the eponymous hero of the novel”

2. (of a thing) named after a particular person or group.
“their eponymous debut LP”

Medical students of a certain vintage will have used the Oxford Handbook of Clinical Medicine. There was a section at the end devoted to eponymous syndromes. At the time these were originally described, this was significant innovation and rightly they have lived on. Cushing’s syndrome for example has its own page on NHS choices. Obviously the wider relevance of these conditions depends on their prevalence – Menkel’s kinky hair syndrome stayed with me from medical school but I have never knowingly seen a case. As you would expect, it is becoming harder and harder to generate your own syndrome. This may change with the 100,000 genome project  but the best you can probably hope for is a single nucleotide polymorphism attributed to you & your collaborators!

The same cannot be said for eponymous reports sadly. Are such reports becoming a bit of a career aim for the ‘establishment’? The usefulness of said reports is invariably inversely proportional to the length of the document. I do not arrive at this conclusion lightly and am not going to debate report structures. I discussed knowledge translation in a previous blog  and I firmly believe that less is more.

However, in case it has passed anyone by we have reached something of a crisis in health and social care. Not a Blackadder Goes Forth type crisis, no, this is in fact having a serious impact on all of our roles. This is definitely a time for action, not a measured debate on the Dilnott report as heard on the Radio 4 today program, for instance. Whilst our eponymous hero Cushing made his observations some time ago in 1932 – along with Addison, these do have clinical relevance today.  I am not sure an 82 page report alongside hundreds of supporting documents archived on the government website in 2011 will have the same relevance, now or in 80 years time.

It is difficult to make a direct comparison between syndromes and reports but: here goes. There are over 200 eponymous syndromes  & many redundancies where historical substitutions have been made. It is an honour that a vanishingly rare number of doctors will achieve. The same cannot be necessarily said for parliamentary output  but, while weighty tomes (literally and metaphorically), not every one bears an actual name. For those in the establishment, the usual health and social care suspects include Dilnott, Barker, Altmann amongst others going back in time – no doubt to the inception of the health and social care systems post the second world war. There are also linked reports around pensions/ageing and other aspects that feed in to health. I would hesitate to give a definitive number of reports. If the number is not approaching 200 then the reduction in relative frequency compared to eponymous syndromes is more than compensated by the length. The honour, if there is one, is usually awarded in advance with ennoblement of the lead author whereas the usefulness of most eponymous syndromes are/were often only fully recognised posthumously.

Although the chances of either is approximately zero, I would hope if I ever got the call to add to the metaphorical paper pile of PDF archives, I would find inspiration from one of my medical heroes and channel rule 13 of The House of God.

Yours,

Minton (of the lesser kinky hair)

 

By Ollie Minton

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”

Knowledge translation & impact at the end of life

4 Aug, 16 | by BMJSPCblog

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

2004 was a long time ago (not quite in a galaxy far, far away), but sufficient time has passed for the highly lauded NICE supportive and palliative care guidance to have been enacted. ( https://www.nice.org.uk/guidance/csg4 )

The clearly stated aim was 7 day services – forgive me if you’ve heard that one before- yet the recent Royal College end of life care audit showed this was achieved in only one third of hospitals. So by my reckoning it’s been 12 years to achieve what was mandated with limited success.

 

I use this as an example of the lack of perceived progress to move the health infrastructure forward. We provide care in a variety of settings and hospitals are only one aspect of that. Again the same themes emerged from the James Lind Alliance priority settings  . No one was focused on complex symptom management or which interventional pain methodology was best. On the contrary everything in the top 10 (and significantly beyond) was focused on health service delivery, continuity and communication across care settings.

One of the frustrations of these efforts is how this is “translated” to provide impact on the ground. We are very able now to identify unmet need, where palliative care is likely to be beneficial and evidence to support our involvement both with economic  and, yes, even possible survival benefit . I have quoted these studies and evaluations at every local CCG or network meeting.

 

I wonder if it is our own introspection that defeats us or over complicating the methods of assessments without an explicit link to finances. If there is no incentive to translate this knowledge into practice this is perhaps one reason that exemplars of best practice are not more widely adopted or replicated. Equally we should not adopt a new initiative without the supported evidence base and an implicit tension arises. Are we as a speciality less likely to adopt new practice, do we aspire to a higher standard on the evidence hierarchy or is the knowledge not being disseminated? It is likely as in all areas of medicine to be a mixture and accepting the time required to alter practice.

I was really enthused by the discussion at the recent Hospice UK attempts to revitalise research in hospices. Naturally there was reference to the origins of an evidence based approach by Dame Cicely with recognition that this was broader than doing more RCTs.

In the current parlance: asking the right questions & taking into account the local networks. The aim being to achieve maximum impact and relating evidence and data obtained to promote innovative & best practice. However there was an appreciation that supporting clinical research – including for example which is the best sub lingual fentanyl formulation and dose titration – is needed.

This is born out in the lack of consistent guidelines which on the face of it nationally reach broad consensus. However one recent example locally has been the treatment of hypercalcaemia – which drug, what dose, how often – and not a Cochrane review in sight. There are other examples we all will have but as a hospital specialist attempting to influence a clinical pharmacist without a meta-analysis- you can imagine your argument is neither strong nor compelling. Within the speciality you only need to attend a conference to see the fixed beliefs and biases we all have to appreciate how liberally guidelines are interpreted.

I make one plea to use the short cuts on the website and digested studies from the APM science committee – we’ve done the hard work so you don’t have to.

No one wants a minimum standard to be marked against but as the NHS constitution states it aspires to highest standards of excellence and professionalism through the   “conduct and use of research to improve the current and future health and care of the population”. If we cannot achieve this at the end of life wherever the setting is, we are not having the impact we are capable of doing at one of the most important times to do so.

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.’

 

CumberbatchRehearsing.jpg large

Rehearsing the letter backstage (Photo credit: Letters Live)

 

HuwThomasVCC

The Digital Legacy Conference 2016

31 May, 16 | by BMJSPCblog

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

sandy-weatherburn-digital_med_hr

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.

james-norris-_med_hr

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

david_bowie_563026

 

 

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.

Free wi-fi in healthcare settings – luxury or prerequisite?

30 Nov, 15 | by BMJSPCblog

by Dr Mark Taubert, Consultant in Palliative Medicine, Velindre Hospital NHS Trust, Cardiff, Wales

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@DrMarkTaubert

 

 

 

 

and James Norris, Founder of the Digital Legacy Association, Camden, London
JN@JamesNorris

 

 

 

Many visitors to hotels, once they have unpacked, settled and polished off the chocolate mint placed on their cushions, will take out their phones and run a scan for the hotel’s wi-fi service. Not finding this most basic of services will cause surprise, consternation, perhaps even irritation. ‘How do I get onto your wi-fi?’ This, by today’s standards, most anodyne of requests is now frequently heard in hospital and hospice settings. Somehow, we all need our connection, even when we’re ill, or perhaps even more so. Not getting onto Facebook, Twitter or Snapchat is akin to 21st century deracination. A poll conducted by the BBC in 2011 suggested that 4 in 5 people around the world believe the internet to be a human right.

Should hospitals grant free wi-fi to patients, families, visitors and staff? This is a recent debate that is unlikely to disappear, and opinions can vary. A BMJ Head to Head article focused on the pros and cons of free wi-fi access in hospitals across the UK. In it, Victoria Betton wrote that internet access is not just expected by many patients, but can also help improve outcomes and decision making processes. Grant Ingrams argued that wi-fi is an expensive luxury that should not take priority over other technological needs. And he is correct in asserting that money in healthcare settings everywhere is tight and should be spent judiciously.

Here in Cardiff, on ward rounds in Velindre Cancer Centre’s inpatient unit, there are tablet devices, smartphones and laptops next to nearly every patient bed. And it is likely that most hospitals across Europe and the rest of the world look similar. Our hospital is different to many others, in that it does offer free wi-fi access and inpatients, outpatients and their accompanying family members are grateful. Being able to connect to the outside world while receiving chemotherapy treatment in relative isolation is important not just to younger patients, but older ones, too.

Velindre Cancer Centre has gone further and now hosts its own Youtube channel and Twitter account. Patients are encouraged to use the information resources on offer there, once they have connected to wi-fi. A relaxation video, for instance, is available on Youtube, and has received positive reports from patients for whom a number of very stressful events or challenging procedures, such as radiotherapy, have taken place.

It is also crucial to remember that a person’s day-to-day working life does not stop when they enter a healthcare setting; like a student, who has to submit weekly coursework online whilst receiving treatment on a ward, or the elderly gentleman who wishes to video link into his niece’s wedding he will miss in Scotland.

Hospitals are not always in areas with good data coverage, and some patients have reported not being able to get 3G access even in city centre locations. Both authors have heard feedback from patients and carers that has included the need to walk to different sections of the hospital or even leave hospital premises to access a data connection. Some pre-write messages on e-mail or social media messaging sites in their hospital room and then ask a relative or friend to walk off the premises to an area with 3G coverage to click the send button; this dismal forray from data anoxia to data fresh air could be eschewed by hospitals with an ambition to maintain as much normality for their patients as possible – by providing wi-fi services.

Whilst more evaluation is needed on the socio-economic impacts, it is also important not to disadvantage those people who attend a hospital setting, and are unable to carry on their essential, important or even mundane online activities. The Global Social Media Impact study (UCL) amongst others, is looking at digital exclusion and correlating this with social, demographic and healthcare trends across the world. The UK’s 2010 digital participation plan warned that we are “moving from conferring advantage on those that have digital skills/access, to conferring active disadvantage to those that are without”. Whilst many may argue that it is not hospitals’ and healthcare settings’ challenge or problem to address, there should be consideration for not worsening the situation of those that are reliant on frequent visits due to ill health, and are then less able to use the digital domain.

Providing wi-fi comes at a price to healthcare, but perhaps this cost will be more than absorbed if a free service is combined with important public health messages and even shared decision aids. And more importantly, it is likely to provide patients with a link to friends and family, stimulating their minds and averting some of the boredom, sadness and drudgery that a stay in hospital can bring with it.

BMJ Supportive & Palliative Care blog

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