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22 Apr, 17 | by James Smallbone, Publishing Assistant

Comparing the symptom experience of cancer patients and non-cancer patients.

Deshields TL, Penalba V, Liu J, Avery J.

Support Care Cancer. 2017 Apr;25(4):1103-1109.

 

This study focussed on symptom burden of 301 consecutive patients from a general medical clinic and 558 cancer patients from a tumour registry who completed the Memorial Symptom Assessment Scale. Results showed that pain was more prevalent in non-cancer patients (p<0.05) and was reported as more frequent, severe and distressing. The overall symptom burden was higher for cancer patients (p=0.01) together with the psychological subscale scores (p<0.05).

The prevalence of dry mouth, mouth sores, feeling nervous, worry, cough, and dizziness was not significant between the groups of patients. There was no difference in the physical or the global distress index sub-scale scores when comparing both groups.

 

Composed by Elaine Boland.

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15 Apr, 17 | by James Smallbone, Publishing Assistant

Predictors of Complicated Grief and Depression in Bereaved Caregivers: A Nationwide Prospective Cohort Study.

Nielsen MK, Neergaard MA, Jensen AB, et al.

J Pain Symptom Manage. 2017 Mar;53(3):540-550

 

A prospective survey of 3635 caregivers to terminally ill patients in Denmark was conducted. 2420 were bereaved within six months and of the survey, 2125 (88%) [mean age 62 years, 70% female] completed a post-loss follow-up questionnaire

At baseline, around 15% were identified as having severe pre-loss grief symptoms and experienced moderate to severe depressive symptoms. Six months after the bereavement, complicated grief was reported in 7.6% and 12.1% had moderate to severe depressive symptoms. The predictors of complicated grief and post-loss depressive symptom were pre-loss depressive symptoms (adjusted OR=5.6), being a partner (adjusted OR=2.2) and low educational level (adjusted OR=2.0). 26% of caregivers who reported severe pre-loss grief symptoms developed complicated grief and 33% developed post-loss depressive symptom.

 

Composed by Elaine Boland.

The four weddings and a funeral guide to the updated palliative care currency

13 Apr, 17 | by jbanning

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

I can’t quote the line for obvious reasons but as I trawled through the extensive analysis of the proposed currency I channelled Hugh Grant as Charles looking at his alarm clock at the start of the film. The opening iconic scene of Four Weddings and a Funeral and subsequent panic with Scarlett took me back immediately to 1994. Coincidentally this was around the time palliative medicine finally became a recognised specialty by the Royal College of Physicians. Read the RCP’s article titled ‘Specialty spotlight – palliative medicine’ or the End of Life Studies Group’s post on ‘Palliative medicine as a specialty’.

At the time the politics of medicine all passed me by, Four Weddings less so, but it illustrates that over 20 years have passed and we are still working on a way to properly fund what we do.

In the maelstrom of the NHS acronym production line of STPs (sustainability and transformation plans) ACOs (accountable care organisations) MCPs (multispecialty community providers) you could be forgiven for missing the announcement of the publication of the updated currency.

For those not aware an updated currency template was released at the end of March. For those still bemused by the terminology: “A currency is a consistently identified unit used as the basis for payment between provider and commissioners. A currency is a balance of case mix and the resources required to deliver it.” It’s not quite “show me the money” but a stepping stone to it.

The accompanying silence from NHS England probably tells you all you need to know. The suggestion is based on a proposed case mix spells and phases which can be taken to commissioners to establish equity of funding. If I were back in 1994 playing Dungeons and Dragons then maybe I could muster some excitement as fantasy fighting was enjoyable. However this harsh reality is on a background of a reduction in real terms funding to hospices and relevant NHS organisations.

The technical details make interpretation difficult even as specialist and sadly the lack of transparency in learning I feel makes implementation all but impossible. I’d encourage others to read and judge for themselves. I feel I can make an informed judgement as we were a pilot site with the promise of fortune and glory or at least some IT support. We stopped recording the data the moment it became clear we were not going to be able to link it to monies. We now have a locally negotiated per diem tariff working well in its place.

The actual currency report is a snappy 26 pages. The technical appendices and Dungeon Master guide is 53 pages.

My very brief reading of the report is as follows:
The data is subjective around the case mix interpretation and therefore open to gamification  if money or targets were ever attached. The national average 30% NHS funding of hospices doesn’t however leave much margin of error regardless of the algorithmic output. Commissioners do not understand the narrative generated and the ability to tell a story is paramount for business cases and the wider population alike.

If this is ever to be routine data for palliative care wherever it is provided the Information Technology must be seamless and link to broader health and social care usage. The money pot is finite even with the next iteration of the five year forward view and NHS mandate.

I was left at the end of the report feeling like Charles at the third wedding surrounded by all his ex-girlfriends wondering when it would all be over.

I am happy to be proved wrong but I think the focus on routine health usage statistics will pay more dividends in this fiercely competitive market.

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7 Apr, 17 | by James Smallbone, Publishing Assistant

A systematic review of prognostic factors at the end of life for people with a hematological malignancy.

Button E, Chan RJ, Chambers S, Butler J, Yates P.

BMC Cancer. 2017 Mar 23;17(1):213.

 

This systematic review looked at identifying prognostic factors in the last 3 months of life that are associated with increased risk of mortality for haematological malignancy; most patients were predominantly treated with aggressive curative or life-prolonging intent. This included 28 studies; mostly were in the intensive care unit settings and retrospective. The prognostic factors were categorised into 5 groups, mainly: demographics; interventions (eg: vasopressor support or mechanical ventilation), physiological complications (eg: bone marrow or multi-organ failure); disease characteristics; and laboratory blood values. Using the QUIPS tool, most studies were of moderate quality, three were high quality and one study was rated to be of low quality.

 

Composed by Elaine Boland.

News and updates from www.palliativedrugs.com

7 Apr, 17 | by bbutcher

07/04/2017

Selected items from the News and Latest Additions sections of www.palliativedrugs.com,
the world’s leading palliative care website with over 30,000 members from 169 Countries.

Hot topics

Cochrane review: pharmacological interventions for pruritus in adult palliative care
patients
In this update to the original review in 2013, the authors concluded that there were was
low–moderate quality evidence for gabapentin, nalfurafine and cromolyn sodium for itch
associated with chronic kidney disease, and rifampicin and flumecinol for itch associated with
cholestasis. Paroxetine may be useful for palliative care patients with itch of various aetiologies,
although evidence was only available from one study. For more information, click here.

Cochrane review: paracetamol with or without codeine or dihydrocodeine for neuropathic pain in adults
The authors concluded that there was insufficient evidence to support or refute the use of
paracetamol alone or with codeine or dihydrocodeine for neuropathic pain in adults. For more
information, click here.

Cochrane review: topical capsaicin (high concentration) for chronic neuropathic pain in
adults
In this update to the original review in 2013, the authors concluded that there is moderate quality
evidence that high-concentration (8%) capsaicin patches can give moderate pain relief, or better,
to a minority of people with post-herpetic neuralgia, and very low quality evidence that it benefits
those with HIV-neuropathy and peripheral diabetic neuropathy. For more information, click here.

Scottish Medicines Consortium: Butec patches for chronic non-malignant pain
The Scottish Medicines Consortium has accepted buprenorphine transdermal patches (Butec ® )
within NHS Scotland for chronic non-malignant pain of moderate intensity when an opioid is
necessary for adequate analgesia. It is restricted to use in patients >65 years. For more
information, click here.

NICE evidence summary: oral glycopyrronium bromide for severe sialorrhoea
NICE has produced an evidence summary for the use of oral glycopyrronium bromide in children
and young people with chronic neurological disorders. For more information, click here.

Drug updates
Glycopyrronium oral solution authorized for drooling now available in UK
Glycopyrronium 320microgram/mL oral solution (Sialanar ® ; equivalent to 400microgram/mL or
2mg/5mL glycopyrronium bromide), authorized for severe drooling in children and adolescents ≥3
years with chronic neurological disease, is now available. The NHS cost for 250mL bottle is £320.
It is authorized for use via EFT and doses must be reduced in renal impairment. Due to lack of
data the product is not authorized in adults or for long-term use. For the SPC, click here.
A glycopyrronium bromide 200microgram/mL (1mg/5mL; Colonis Pharmaceuticals) oral solution,
authorized for adults for the treatment of peptic ulceration is also available (see our news item
30th September 2016).

Glycopyrronium bromide
Tablets 1mg, 2mg, 28 days@ 1mg t.d.s. = £602.
Oral solution 1mg/5mL, 2mg/5mL 28 days @ 1mg t.d.s. = £255 or £269 respectively.
Injection 200microgram/mL, 1mL or 3mL amp = £1.20.

Note: other strengths of glycopyrronium bromide oral solution and oral suspension are also
available as unauthorized products via special order 200micorgram/5mL, 500micorgram/5mL,
2.5mg/5mL, 5mg/5mL.

FDA approves 2mg naloxone nasal spray
A 2mg naloxone nasal spray (Narcan ® ; Adapt Pharma) has been approved in the USA for use in
opioid-dependent patients, expected to be at risk for severe opioid withdrawal, in situations where
there is a low risk for accidental or intentional opioid exposure by household contacts.
A 4mg naloxone nasal spray (Narcan ® ; Adapt Pharma) has been available since February 2016
(see our news item 26-11- 2016).
The US Product Information for both the 2mg and 4mg naloxone nasal spray can be downloaded
from here. For more information, click here.

Thalidomide updated SPC
The UK SPC for thalidomide Celgene 50mg hard capsules now advises extra care when removing
capsules from the blister to avoid deformation/breakage and recommends to only press one end of
the capsule to remove from the blister. In addition, it highlights capsules should not be
opened/crushed. If powder makes contact with skin/mucous membranes, it should be washed or
flushed immediately/with water. For the SPC, click here.

Latest additions
Website satisfaction survey winners and results

Results are available from our satisfaction survey (October – December 2016). Congratulations to
the 5 members randomly selected to receive a free of copy of Introducing Palliative Care 5th
edition (IPC5).

PCF updates
The on-line Palliative Care Formulary is being continually updated. For a full list of all the
monographs updated since the print publication of PCF5, see the Latest additions section of the
website or follow us on twitter @palliativedrugs for the latest updates. Over the next few months
we will be working hard in the background on the technical side of the website in preparation for
the publication of PCF6 print edition later this year. Part 2 of PCF (which contains the general
topics) is being reorganised to make it more user-friendly. The new PCF format will be launched
first on the website in April 2017 and will also contain multiple monographs that have been
updated during the interim period.

Prepared by Sarah Charlesworth and Andrew Wilcock

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.

BMJ Supportive & Palliative Care blog

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BMJ Group's first dedicated supportive and palliative care journal.
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