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Grief at Hay

27 Jun, 17 | by BMJSPCblog

by Carys Durie and Sioned Edwards
4th year Medical Students, Cardiff University

The 2017 Hay Festival of Literature and Arts set in the Welsh town of Hay-on-Wye, celebrated its 30th anniversary this year. Speakers included the likes of Tracey Emin, Bernie Sanders, Stephen Fry and Ed Balls. Pianist James Rhodes closed the first weekend with a Bach recital, dedicated to the people of Manchester after the terror attack that left many dead. These recent tragic news events gave particular poignancy and context to a discussion on grief, which formed a central theme of one particular literary event, which we have described below.

We attended a packed, sweltering Starlight tent, where an apparently disparate group of speakers took to the stage: Welshman George Brinley Evans, ex-miner and now recognized painter, sculptor and published author; Phil Steele, former Welsh rugby player and current BBC sports broadcaster; and Dr. Mark Taubert, Consultant Physician and Clinical Director for Palliative Care at Velindre Cancer Centre in Cardiff. The discussion entitled ‘Before the End – Telling Your Story In Time’ was chaired by Professor Hywel Francis, chair of Byw Nawr/Live Now, the coalition dedicated to raising awareness of dying, death and bereavement.

Left to right: Phil Steele, Mark Taubert, George Brinley Evans and Hywel Francis

Male grief remains a subject that is not talked about in our society. Bereavement and grief were the central themes of the day’s talk. Phil Steele and George Brinley Evans discussed how bereavement had encouraged them to tell their own stories, despite many setbacks. Steele’s autobiography Nerves of Steele, his writing debut, maps out his life from his beginning as an ‘Ely boy’ in Cardiff, to the successful and entertaining broadcaster he is today. Steele was a professional rugby player with Newport RFC, when he suffered his first bout of depression: aged just 23, he had sustained an injury that put paid to his promising career. Steele went on to endure the loss of four family members, including his wife, Liz, in 2009. Steele put it as having five losses in his life, four of them being bereavements, the fifth loss being his rugby playing career. He pointed out that grief or bereavement does not necessarily entail the death of a person or loved one, but can also be that of a bodily function or role. Thus grief can take many patterns and forms. He described how he did not find talking about it difficult, but that others avoided these conversations, and he sensed an awkwardness in discussing grief and depression in his wider circles.

Dr. Mark Taubert explained the different forms that grief can take. While most of us are aware of the stages of grief – denial, anger, bargaining, depression, acceptance – psychologists now also accept different types of grief, intuitive and instrumental, as two ends of a spectrum. Intuitive grief encompasses open expression and emotions, said Dr Taubert, describing it as a grief in which ‘expression mirrors feelings’. People veering more towards this form of grief, often talk about their feelings, and share their emotions and experiences with others. By contrast, in instrumental grief, grievers are less willing to share their thoughts and instead go through a period of quiet and inward processing, while they come to terms with their loss. Dr. Taubert described instrumental grief as being ‘action orientated’, with people finding comfort through channeling their energy into a project, and often immersing themselves in work. These two types of grief sometimes fit the perceived ‘gender stereotypes’; some people assume that women are more open (intuitive) grievers, and that men are more inward instrumental grievers, ‘disappearing to their sheds’ –some laughter and nods from the audience here-. Dr Taubert explained that these gender stereotypes are not always correct and he observed many female instrumental grievers and male intuitive grievers, sometimes oscillating between these two types of grief. Grief experiences are influenced by more than fourty distinct factors, making each grief experience, as Taubert put it, ‘as unique as a fingerprint’.

George Brinley Evans described growing up at a time when grief was simply not spoken about and “you certainly didn’t show it”. When he was a miner, three British coal miners were killed every day and children were dying of diphtheria; it was a time when men and women alike were expected to “carry on as normal”, as the iconic war time poster dictated. He described the way that, in times of grief, men would “go to work and busy themselves” rather than grieving with their family and talking about it. Men didn’t cry. He remembered the 1930’s when funerals were “gentlemen only”: women and children were kept at home to grieve in private, while the men in the community would attend the funeral on their behalf.

Evans’ most recent novel, ‘When I Came Home‘, recounts conversations from 60 years ago; these memories deal with births and deaths, struggles and triumphs, memories he has vividly captured. Reflecting on this latest work, George Brinley Evans stressed the importance of being able to get his story down on paper: “When you write, it’s just you and the page; there are no conflicts of characters”. For him, the best way to capture his story and relay it to loved ones was through writing it.

When talking about his experience of depression, Phil Steele – who described receiving comments such as “You of all people with depression Steeley!” and “How could it happen to you?!” – raised the question of the language we use when talking to a person facing a loss or struggling with mental health problems. There was too much ‘fighting talk’ and phrases such as “battling depression” or “you’re going to beat this”. This was seconded by Dr Taubert, who observes such war metaphors and battle language in everyday practice at the hospital, and who’s patients have told him it can be damaging and disempowering. He suggested that people actually feel let down by these expressions since, ultimately, we all ‘lose the battle’, if we chose to use this patois. The panel felt that it should not be about fighting depression or battling with grief, but learning to accept it. More on the language of grief and loss can be found in an article by Dr Taubert entitled “War and Peace in Cancer” in the Huffington Post. He has also made it the central theme in a recent Ted Talk.

There was discussion about the role of digital media in raising the issue of grief, but also offering new ways of collecting experiences and memories for future generations. This was not a session which finished with all answers tied up neatly at the end. By way of underlining the fact that this should be a constant and ongoing discussion for everyone, Professor Hywel Francis posed a further question for his speakers and audience. He simply asked a series of questions “What could you do, to help discussions about grief? What could you do to help a person come to terms with a loss or faced with a mental disorder? What could you do to change your perceptions of grief and how we grieve? What could you do to help a loved one share their feelings and experiences, and help them to tell their story before the end?” All salutary questions and hugely important in terms of raising consciousness of issues which inevitably affect us all.

As a society, we can at times be judgmental about the way people grieve and how we feel people ought to respond to loss. Discussions like this one at Hay focused attention on bringing death and grief into the everyday here and now and on the need to open people’s eyes to the complexity and uniqueness of bereavement. Bringing such things into the open creates the possibility of continuing bonds and encouraging resilience in those that are left behind.

The writers gather at Hay Festival Bookshop after the talk

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.

News and updates from

8 Sep, 16 | by Jenny Thomas

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

Hot topics

Cochrane review: codeine versus placebo for cough in children

In this review the authors conclude that codeine (or its derivatives) should not be used for cough in children <12 years, because:

  • there is no published RCT evidence of benefit in this age group
  • children may have a greater risk of undesirable effects
  • the high degree of variability in the metabolism of codeine to morphine in children, may negate a therapeutic effect or, conversely, risk opioid toxicity and respiratory depression
  • the underlying aetiology should be defined, rather than the cough empirically treated.

For more information, click here.

 Cochrane review: oxycodone for neuropathic pain

A previous Cochrane review on oxycodone for neuropathic pain and fibromyalgia has been split into separate reviews and the use of oxycodone for neuropathic pain has been updated (CD010692). The authors concluded that there was very limited evidence that oxycodone (as oxycodone m/r) provides moderate benefit (30% reduction in pain) in painful diabetic neuropathy or postherpetic neuralgia. There was no evidence for other neuropathic pain conditions. For more information, click here.

 NICE- Call for evidence for End of Life Care service delivery

NICE are requesting information for the guideline they are developing on End of Life Care for adults in the last year of life, specifically, on service delivery models to:

  • identify people who may be entering the last year of their life
  • support people to stay in their preferred place of care (e.g. out of hours services)
  • facilitate smooth transitions between care settings (e.g. discharge planning teams)
  • facilitate continuity and coordination of care (e.g. multidisciplinary team working)
  • reduce inappropriate/avoidable hospital admissions (e.g. community health services and telehealth)
  • facilitate discharge back to the community from other settings (e.g. rapid discharge pathways).

The deadline for submission is 19 September 2016. For more information, click here.

Latest additions

PCF updated monographs summary (August 2016)

The on-line Palliative Care Formulary is being continually updated. The following monographs have been updated during August 2016 and supersede those in the print publication of the 5th edition of the Palliative Care Formulary (PCF5) and PCF5+ 2015 pdf. They can be accessed from the formulary section of the website.

Chapter 01: Quick Clinical Guide: Death rattle (noisy rattling breathing), Quick Clinical Guide: Opioid-induced constipation, Laxatives (minor change), H2-receptor antagonists (minor change)

Chapter 02: Haemostatics

Chapter 04: Antihistaminic antimuscarinic anti-emetics (minor change)

Chapter 05: Paracetamol, Morphine (minor change)

Chapter 06: Helicobacter pylori gastritis monograph discontinued

Chapter 07: Corticosteroids (minor change), Danazol, Demeclocycline, Desmopressin

Chapter 10: Skeletal muscle relaxants (minor change)

Chapter 13: Propofol

For further details of minor changes, see the individual notifications in the Latest additions section of

For a full list of all the monographs updated since the print publication of PCF5, click here. Follow us on twitter @palliativedrugs for the latest updates.

Parenteral NSAIDs – Which one do you use?

Results from our survey (June-July 2016).

Prepared by Sarah Charlesworth and Andrew Wilcock

News and updates from

5 Jul, 16 | by Jenny Thomas

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

Safety issues

Topical miconazole interaction with warfarin

MHRA has highlighted the risk of serious bleeding events in patients taking warfarin and using cream, ointment, powder or oral gel formulations of miconazole. The potential for a drug interaction between oral miconazole and warfarin is well documented due to miconazole inhibiting the CYP2C9 enzyme involved in the metabolism of warfarin. The MHRA are now receiving a large number of reports of potential drug interactions involving topical miconazole (particularly the oral gel formulation) and warfarin, and are now reviewing whether further measures are needed to minimise the risks to patients. In the meantime, their advice is to carefully monitor the anticoagulant effect and reduce the dose of warfarin if necessary. As some topical formulations of miconazole are available without prescription, patients taking warfarin should be warned not to use topical miconazole without consulting their doctor. For more information, click here.

Hot topics

RPS guidance for the prescribers of Specials

The Royal Pharmaceutical Society (RPS), has published guidance for the prescribers of specials. The document can be downloaded from the RPS website, or from here. This document was produced at the request of NICE and following consultation in 2015 (see our news item 10 November 2015). It complements the RPS professional guidance for the procurement and supply of specials which was published in December 2015.

Neuropathic pain: pregabalin and gabapentin prescribing

The latest PrescQIPP bulletin discusses dose optimisation of pregabalin and cost effectiveness in line with authorized indications and guidance from NHS England and NICE. For more information, click here.

 e-learning Indian palliative care course

eCancer has launched a text only version of the palliative care e-learning course for health professionals in India. For more information, click here.

Drug updates

Epistatus 10mg/mL oromucosal solution batch recall

MHRA has issued a class 2 medicines recall for a specified batch of Epistatus (midazolam) 10mg/mL oromucosal solution (unauthorized buccal liquid; Special products). The incorrect size of neck adaptor has been fitted and they are not compatible with oral syringes (Batch: 73234 Expiry: Oct 2017 Size: 1 x 5ml First issued: 24 Feb 2016). For more information, click here.

NICE evidence summary for fentanyl transdermal patient controlled system

NICE has published an evidence summary for the new fentanyl transdermal system (IONSYS) that was launched earlier this year in the UK (see our news item 28 March 2016). It is authorized for the treatment of moderate−severe post-operative pain in adults (hospital use only).

NICE conclude that the fentanyl transdermal system has comparable efficacy to IV morphine patient-controlled analgesia (PCA). Its undesirable effect profile is as expected for an opioid used in post‑operative pain, and is similar to that of IV morphine PCA. They report a better patient satisfaction than IV morphine PCA but a higher drug cost. For more information, click here.

New naproxen suspension available in UK

A new authorized naproxen oral suspension 125mg/5mL (Orion Pharma) is now available. The NHS indicative cost is £110 for 100mL. This is significantly more expensive than the tablets or the effervescent tablets and the previously unauthorized special order product. The effervescent tablets are now accepted by the Scottish Medicines Consortium (SMC) for use in NHS Scotland for patients with swallowing difficulties. For more information, click here.

Naproxen (generic)

Tablets 250mg, 500mg, 28 days @ 500mg b.d. = £2.75.

Tablets e/c 250mg, 375mg, 500mg, 28 days @ 500mg b.d. = £9.

Oral solution 125mg/5mL, 28 days @ 500mg b.d. = £1,232.

Stirlescent® (Stirling)

Tablets effervescent 250mg, 28 days @ 500mg b.d. = £44.

With esomeprazole

Tablets m/r naproxen 500mg e/c + esomeprazole 20mg, 28 days @ 1 tablet b.d. = £15. Note this product is cheaper than prescribing both drugs separately.

Latest additions

Levomepromazine for anti-emesis – How do you use it?

Results from our survey (April– May 2016).

 Introducing Palliative Care 5th edition (IPC5) now available.

We are pleased to announce that IPC5 is now available to purchase from our store for £25 (including p&p in the UK).

IPC5 has moved from a single authorship to a collaborative project between editorial team and eight new contributors. Updates include:

  • covering the Association for Palliative Medicine of Great Britain and Ireland recommended curriculum for medical undergraduates
  • expanded sections on ethics, law, children, symptom management
  • the Essential Palliative Care Formulary, and a synoptic table of drug doses for common symptoms.

IPC5 has already received the following high praise:

We all need one book that we know, thumb often, trust and refer to. This palliative care book fills all these roles for staff at every grade. End of life care is everyone’s business; if used to the full, this book can and will improve patient care in all settings.’ Professor Ilora Baroness Finlay of Llandaff

This new collaborative edition is the best of the best. Its clear, concise, balance of theory and application is admirable and is replete with practical wisdom. This is required reading for anyone serious about caring for the dying well, for it is long enough to be useful and short enough to be digestible.’ Professor Rob George, President of the Association for Palliative Medicine

The holistic and multimodal approach of this book, which builds on the total pain model of Dame Cicely Saunders, is particularly to be commended.’ Professor Irene Higginson, Director of the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London

This book is not just a symptom control handbook, it covers all aspects of holistic care in an easy to read and navigable format. It will become an old friend – get to know it!Dr Fiona Rawlinson, Programme Director, Palliative Care Education, Cardiff University.

To purchase a licensed copy, and help support, please go to our store. For enquiries regarding multiple copies please contact

PCF updated monographs summary (May/June 2016)

The on-line Palliative Care Formulary is being continually updated. The following monographs have been updated during May/June and supersede those in the print publication of the 5th edition of the Palliative Care Formulary (PCF5) and PCF5+ 2015 PDF. They can be accessed from the formulary section of the website.

Chapter 02: Furosemide

Chapter 05: Opioid antagonists (minor change)

Chapter 24: Prolongation of the QT interval in palliative care (minor change)

For a full list of all the monographs updated since the print publication of PCF5, click here. Follow us on twitter @palliativedrugs for the latest updates.


Prepared by Sarah Charlesworth and Andrew Wilcock

News and updates from

16 May, 16 | by Jenny Thomas

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

Safety issues

FDA enhances warnings for opioids

US Food and Drug Administration (FDA) has announced class-wide enhanced labelling warnings for:

  • immediate-release opioid pain medications, in relation to risks of misuse, abuse, addiction, overdose and death; these are similar to those added to modified-release formulations in 2013 (see our news item 24 September 2013) and
  • both immediate-release and modified-release formulations, in relation to the undesirable effects on the endocrine system, and also the potential for interaction with other medicines resulting in serotonin syndrome.

The updated indication for immediate-release opioids states that they should be reserved for pain severe enough to require opioid treatment and for which alternative treatment options (e.g. non-opioid analgesics or opioid combination products) are inadequate or not tolerated. The dosing information also provides clearer instructions regarding patient monitoring and drug administration, including initial dosage, dosage changes during therapy and a warning not to abruptly stop treatment in a physically dependent patient. In addition, a precaution that chronic maternal use of opioids during pregnancy can result in neonatal opioid withdrawal syndrome, has been added.

Safety measures for immediate-release opioids

Safety issues for all opioids

MHRA reminder of fire risk with paraffin-based emollients

UK Medicines and Healthcare products Regulatory Agency (MHRA) has reminded health professionals to warn patients using paraffin-based emollients, not to smoke or use naked flames (or be near people smoking or using naked flames) due to the risk of clothing or dressings catching fire. The risk is greatest when these preparations are applied to large areas of the body, or when dressings or clothing become soaked with emollient. Patients should also be advised to change clothing and bedding regularly. For more information, click here.

Hot topics

Safe use and management of controlled drugs: NICE guideline published

NICE have published the final guideline for the safe use and management of controlled drugs (NG46) that was available for consultation in October 2015 (see our news item 28 October 2015). The guideline covers prescribing, obtaining, supply, administration, handling, recording and monitoring of controlled drugs in all NHS settings in England, except care homes. Managing and using controlled drugs in care homes is included in the separate NICE guideline (SC1).

Controlled drugs: safe use and management (NG46)

Managing medicines in care homes (SC1)

Administration of medicines in care homes by care assistants

UK Department of Health has published evidence-based guidance for care home providers on the administration of medicines in care homes (with nursing) by care assistants. For more information, click here.

 SIGN publishes CHF patient information booklet

Scottish Intercollegiate Guidelines Network (SIGN) has published a patient booklet based on SIGN clinical guideline 147: management of chronic heart failure (CHF). For more information, click here.

RCGP End of Life Care toolkit

The Royal College of General Practitioners (RCGP) has launched a Palliative and End of Life Care toolkit for health professionals, patients and carers in general practice. We are pleased to note that is listed as one of the clinical resources providing best practice guidance for the treatment of patients at the end of life. For more information, click here.

 Cochrane review: Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness

This new Cochrane review (CD011008) has been published in full on-line. The authors concluded that there was some low quality evidence that showed a benefit of using oral or injectable opioid drugs for the treatment of the symptoms of breathlessness. There was no evidence for opioids by nebulizer.

 Methadone for pain in palliative care

A one-hour on-line course on the use of methadone for pain in palliative care has been launched by Canadian Virtual Hospice. It is accredited as a Royal College Accredited Group Learning Activity (free for those in Canada). For more information, click here.

Drug updates

New buprenorphine transdermal patches available

Lower strength

Qdem pharmaceuticals has launched a branded generic buprenorphine transdermal patch (Butec) in strengths of 5, 10 and 20microgram/h.

Napp pharmaceuticals has launched an additional buprenorphine transdermal patch (BuTrans) of 15microgram/h to add to its current range of 5,10 and 20microgram/h.

Higher strength

Two types of generic buprenorphine transdermal patches in the higher strengths of 35, 52.5 and 70microgram/h are now available in addition to the branded generic (Hapoctasin; Actavis) and the original brand (Transtec; Napp).

Sufentanil sublingual tablet patient-controlled system

NICE has published an evidence summary for a new sufentanil sublingual tablet system (Zalviso; Grunenthal) which is due to be launched in September 2016. The new tablet system is programmed to dispense a single 15microgram sufentanil tablet on a patient-controlled basis to manage moderate-severe post-operative pain. The tablets are contained within a cartridge which must be used with the Zalviso administration device. This controls the dispensing of the tablet in response to patient activation with a lockout period of 20minutes. The cost of the system has not yet been released. For more information, click here.

Latest additions

Free access to the on-line Palliative Care Formulary renewed for NHS Scotland for fourth year

We are delighted to report that NHS Education for Scotland has subscribed to the on-line Palliative Care Formulary (PCF) for a fourth year! The on-line PCF is hosted on the Palliative Care portal of the NHS Scotland Knowledge Network website and is available free of charge to those with an NHS Education Scotland ATHENS user name and password. The content is continually updated and represents the most current PCF version. HON code accreditation extended

We are delighted to report that has been re-accredited for the fifteenth year running by the Health on the Net (HON) foundation and complies with the HON code standard for trustworthy health information.

The Health on the Net (HON) certificate serves as a guarantee that our website, at the date of its certification, complies with and pledges to honor the 8 principles of the HON Code of Conduct as drawn up by the HON foundation. For more information, click here.

PCF updated monographs summary (March & April 2016)

The on-line Palliative Care Formulary is being continually updated. The following monographs have been updated during March & April 2016 and supersede those in the print publication of the 5th edition of the Palliative Care Formulary (PCF5) and PCF5+ 2015 PDF. They can be accessed from the formulary section of the website.

Chapter 05: QPG: Use of transdermal buprenorphine (minor change)

Chapter 07: Progestogens

Chapter 15: Opioid dose conversion ratios (minor change)

For a full list of all the monographs updated since the print publication of PCF5, click here. Follow us on twitter @palliativedrugs for the latest updates.


Prepared by Sarah Charlesworth and Andrew Wilcock


News and updates from

11 Apr, 16 | by Jenny Thomas

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

Safety issues

Desmopressin patient safety alert

NHS England has issued a patient safety alert warning (NHS/PSA/W/2016/001) on the risk of severe harm or death when desmopressin is omitted or delayed in patients with diabetes insipidus. They have identified a lack of awareness of the critical nature of desmopressin when being used for the treatment of cranial diabetes, in particular for the nasal spray, amongst medical, pharmacy and nursing staff and poor availability of the medication within inpatient clinical areas. Organizations are required to act immediately to ensure all staff are aware of this warning and action plans are put in place to reduce the risk. For more information, click here.

Hyperkalaemia with spironolactone and renin-angiotensin system drugs

The latest Drug Safety Update from the UK MHRA highlights the risk of potentially fatal hyperkalaemia with the concomitant use of spironolactone and angiotensin converting enzyme inhibitors (ACEi) or angiotensin receptor blockers (ARB). This follows a recent increase in the number of incidents reported from using these combinations. Health professionals are reminded that concomitant use of spironolactone and ACEi or ARBs is not routinely recommended. If concomitant use is essential, the lowest effective doses should be used and regular monitoring of serum electrolytes is also essential. For more information, click here.

Hot topics

NICE guidance published

  • Motor neurone disease: assessment and management (NG42). This updated version replaces NICE guideline CG105 (July 2010)
  • Transition from children’s to adults’ services for young people using health or social care services (NG43).

USA guidelines for prescribing opioids for chronic pain

The USA Centres for Disease Control and prevention (CDC) has updated a 2014 systematic review to provide 12 recommendations for prescribing opioids, in primary care, for chronic pain outside of active cancer treatment, palliative or end of life care. For more information, click here.

Drug updates

Metoclopramide 5mg/mL injection (Maxolon) batch recall

The following batches of Maxolon 5mg/mL, 2mL ampoules (metoclopramide; AMco) have been recalled due to a printing error on the outer carton regarding IV administration.

  • batch number J001 (expiry April 2020)
  • batch number J003 (expiry October 2020).

For more information, click here.

New fentanyl transdermal patient controlled system available in UK

A new fentanyl transdermal system (IONSYS), authorized for the treatment of moderate−severe post-operative pain in adults, is now available in the UK (hospital use only). The patient controlled transdermal system has an electronic controller, a drug unit and a patient activation button. Upon pressing the activation button, 40microgram of fentanyl is delivered to the patient over a 10minute period. The unit contains 80 doses and allows a maximum of 6 doses/h (240microgram/h). It is authorized for short term use for 72h. For more information, click here.

Editor’s note: An IONSYS product has previously been available in the UK but was suspended in 2008 due to a defect in the delivery system (see our news items on 30 September and 25 November 2008).

Special order ketamine capsules available in UK

Ketamine oral capsules are now available as an unauthorized product for special order. They are available as 10mg and 40mg in a pack of 100 at a cost of £189 and £199 (+VAT) from the NHS Oxford pharmacy store (01865 455909). They have a 12month shelf life. For more information, click here.

Latest additions

Survey results

Results from our survey ‘Benzodiazepines and hypnotics – What do you use?’, (January– March 2016).

Prepared by Sarah Charlesworth and Andrew Wilcock

News and updates from

15 Feb, 16 | by Jenny Thomas

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

Safety issues

CME T34 Field Safety Notices

CME T34 and leaking extension lines

Due to reports of leaking, CME has issued a Field Safety Notice recalling CME syringe extension sets (product codes 100-172S and 100-172SLL) used with CME T34/T60 syringe pumps. An alternative set (product code PN30-7100) is being supplied in the interim. However, this differs in composition, priming volume and connection to the male Luer lock (see Customer information bulletin). Further, the substitute set can only be used with syringe sizes up to 20mL within the lockbox of the T34; the female Luer prevents the lockbox lid closing with larger syringe sizes. For more information, click here.

CME T34 and use in direct sunlight

CME has issued a Field Safety Notice recommending that the CME T34 is protected from sunlight by covering with a bag/dedicated syringe pump pouch. This is a precaution following problems reported for T60 syringe pumps, where infusions have stopped and alarms activated when exposed to direct sunlight. The issue is related to a change in the material used for the pump housing from June 2013 onwards, which is also used in T34 syringe pumps. For more information, click here.

Hot topics

NICE palliative care guidelines

NICE are starting the process of updating the 2004 clinical guidance ‘Improving supportive and palliative care for adults with cancer’. The draft scope for the updated guidance has been published for consultation. NICE are also recruiting health professionals, and lay members, to join the guidelines committee. The deadline for both consultation responses and applications to join the committee was 29 January 2016. For more information, click here.

Drug updates

Haloperidol, cyclizine and levomepromazine UK supply updates

Haloperidol 5mg/mL injection

We reported in October 2015 (News item 6 October 2015) that there were supply difficulties with haloperidol injection 5mg/mL. We understand that this is now out of stock. Amdipharm Mercury have reported that there is an issue with the raw ingredient, and they do not expect this to be resolved until the end of 2016. There is no other UK authorized product available. We understand that alternative haloperidol injection formulations from other Countries, unauthorized in the UK, are available for import via special order.

Cyclizine 50mg/mL injection

We reported in December 2015 (News item 9 December 2015) that there were supply difficulties with cyclizine injection 50mg/mL. We understand that although there is no known manufacturing issue, the supply and demand situation is currently unstable.

Levomepromazine 25mg/mL injection

They have been some local reports of supply difficulties, however, Sanofi have confirmed that their product (Nozinan) is in stock and available to order; they are unaware of any wholesaler restrictions.

Latest additions

PCF updated monographs summary (January 2016)

The on-line Palliative Care Formulary is being continually updated. The following monographs have been updated during January 2016 and supersede those in the print publication of the 5th edition of the Palliative Care Formulary (PCF5) and PCF5+ 2015 pdf. They can be accessed from the formulary section of the website.

Note there were no changes to the on-line PCF during December 2015.

January 2016

Chapter 04: Benzodiazepines (correction)

Chapter 06: Cellulitis in a lymphoedematous limb, Quick Clinical Guide: Cellulitis in lymphoedema

For further details of corrections, see the individual notifications in the Latest additions section of For a full list of all the monographs updated since the print publication of PCF5, click here. Follow us on twitter @palliativedrugs for the latest updates.


Prepared by Sarah Charlesworth and Andrew Wilcock

The Liverpool Care Pathway – are patients suffering unnecessarily due to media criticism?

1 Mar, 13 | by Assistant Editor


The overwhelming majority (89%) of senior palliative care doctors who responded to a survey carried out for the BMJ and Channel 4’s Dispatches think the Liverpool care pathway (LCP) is the right approach for caring for patients in their final hours, and they would choose it for themselves.

However, almost three quarters (74%) think that recent criticism in the media and elsewhere has led to less use of the LCP. Of these, two-thirds (67%) said patients and relatives had asked them not to use it and 84% said staff were apprehensive about relatives’ complaints.

The results, published on today ( – and due to be aired on Channel 4 Dispatches on Monday 4 March – support concerns already made by palliative medicine leaders.

One specialist said the controversy around the LCP “has caused additional distress for relatives at an already distressing time when their loved one is dying.” Another said that that it was “putting end of life care back about twenty years, where dying patients were hidden inside rooms and not seen by a consultant.”

The Liverpool care pathway was introduced to help doctors and nurses provide quality care for patients during their final hours and days of life, but it has recently been criticised after accounts of patients having food and fluids withdrawn and the use of financial incentives. Some families are claiming that their relatives could, and should, have lived longer.

As a result, the Department of Health and the NHS National End of Life Care Programme are currently reviewing the pathway.

In February, in conjunction with Channel 4 Dispatches, the BMJ emailed 3,021 hospital doctors for an anonymous online survey of the Liverpool care pathway. The results are based on answers from 563 doctors who responded and had used the pathway in their practice (185 palliative medicine consultants, 168 in other grades in palliative medicine, and 210 doctors in another specialty). The respondents included about 40% of all palliative medicine consultants in the UK.

Overall, 91% (514) thought that the pathway represented best practice for care of the dying patient, including 89% (164) palliative care specialists. If used properly, 98% (551) thought it allowed patients to die with dignity, with only two respondents (0.4%) disagreeing.

When asked if they would want the pathway during a terminal illness, 90% (509) said yes and 3% (16) said no. And despite media reports, almost all (98%) did not think that pressure on beds or other resources had influenced decisions to use the pathway.

However, only 13% (75) respondents agreed that hospitals should be offered financial incentives for using the pathway, with over half (58%) disagreeing.

Concerns about lack of training in the use of the pathway were also raised, in particular around recognising a dying patient and communicating this to patients and relatives.

Other respondents pointed to “damaging misconceptions” about the pathway, such as it precludes nutrition, hydration or antibiotics, that it is a one way process with no further patient review, and that it is an active intervention to hasten death.

Dr Fiona Godlee, BMJ Editor in Chief, said: “This survey gives overwhelming support for the LCP from doctors who have experience in using the pathway when caring for patients in the last few days of life. The fact that most of these doctors said they would choose the LCP for themselves is doubly reassuring. The recent adverse media coverage of the LCP has been misleading and has damaged patient care. I hope this survey goes some way to restoring public confidence in the LCP as a reasonable and compassionate choice for patients and their families when making decisions about end of life care.”

Death on the Ward: Channel 4 Dispatches (Monday 4 March, 8pm) interviews leading specialists, terminally ill patients and families to explore the simple question at the heart of this controversy: can doctors accurately tell when someone is dying?

Proposal for the development of community end of Life Care: A guest post by Julian Abel

12 Feb, 13 | by Assistant Editor



Over the last 45 years the hospice movement has set the standard for caring for people who are approaching the end of life.  The levels of services have been developing steadily and the quality of care has been of the highest standard.  An unintentional consequence of the development of end of life services has been that the care has become professionalised.  Families naturally look for professional care as their loved one becomes increasingly unwell.  In addition, although healthcare professionals look to see what care the family can deliver, the main focus of supporting people at home is the addition of a variety of professional care.  Culturally, we have lost something of the traditional role of the community caring for people who are dying.


There are two components to this proposal.  The first part relates to involving the network of family and friends supporting the dying person and carer at home.  The second part aims to build compassionate communities who can help to support end of Life Care in their own community.


  1. Developing family and friends networks


Caring for the terminally ill relies heavily on the support of family and friends.  Often there is a very natural reluctance to ask for help from even close family members.  Even if people offer to help, it is not always clear whether help can be given.  Furthermore close carers may feel a sense of value in maintaining their role without asking others to help.

There are a wide variety of tasks that need to be completed in order to keep someone at home.  These include cooking, cleaning, shopping, washing, dressing, visits to clinics, feeding, medication, collecting prescriptions, and toileting.  Some of these tasks may be small in themselves part in combination add up to a large burden for one person.

We propose that developing a network has two phases.

Firstly, for each patient a map is drawn of close family members and friends.  If possible a person who would be prepared to be the main coordinator is identified on this map.

The second phase is that a chart of the week is drawn up with all the tasks listed down one side.  The coordinator then decides with the main carer and the patient of the acceptability of asking people for help, in a regular and organised fashion.  An explanation that can work well in this circumstance is that caring for somebody with a terminal illness is more of a marathon rather than a sprint.  Keeping the carer has supported as possible is a key component to maintaining the patient at home. Even small amount of input can help significantly.  For example the lift to the shops once a week may be very helpful.  Somebody sitting with the patient whilst the shopping is done can help to give the carer a break.  Sharing the tasks out in an agreed way can help to spread the load of care.  The coordinator maps family and friends on to the chart.

The ideal time to start thinking about these kind of arrangements is when the discussion of advance care planning is started.  At the hospice, advance care planning discussions are usually started by the specialist palliative care community nurse. Planning for care fits easily into thoughts about the future.  The advantage of starting at this point is that care can be increased as the patient becomes less well.

A common experience for many people once the patient has died here is that everyone disappears after the funeral, leaving the care and feeling lonely and unsupported.  However, in this arrangement regular contact can be maintained and gradually withdrawn as the sense of loss and loneliness lessens.  The Healthcare professionals involved in which support the coordinator in drawing up a plan and look to see where there are gaps.  These gaps could then be filled by existing professional Care Services.

  1. The second phase of the project is the development of compassion in communities.  Each time a family network looks after their terminally ill loved-one, they develop skills and expertise on how to do this.  These skills are a resource for communities.  The closest Health Care professional to the patient could ask the developed network if individuals would like to volunteer to help other people in their locality who may be in a similar situation either now or in the future.  For those people who are prepared to do this the details could be kept as a resource and they could be offered more formal training as a volunteer.  For people who have a small network, it is much easier to ask whether they would accept help from somebody who lives in the locality who has been through a similar experience.  They may well be a neighbour who already knows the family concerned.

Over a period of time, communities could build up a large network of you who are prepared to support their neighbours in the end of Life Care.  In this way, end of Life Care is handed back to the community in which it belongs, supported and aided by Health Care professionals.


Project proposal

We propose that Weston Hospicecare run a project on developing compassionate communities.  We think that the community specialist palliative care nurse is the ideal person to start the process of identifying the key coordinator and providing supportive documentation.  This would follows naturally from starting advance care planning discussions.  We know from our records that these take place on average three months before the patient dies.  If there is no obvious person to do the coordinating, the palliative care nurse could fulfil this role.

We think that there will be, particularly initially, a significant time input which will have an impact on the palliative care nurses job.  For this reason we would like to employ another specialist palliative care nurse who can act as backfill.

We think that the volunteer carer programme would be ideal in developing volunteers for particular neighbourhoods.  We intend to start the project apply targeting the small number of GP practices so that we can build up a neighbourhood resource.  When a new patient within that locality needs support, the hospice could then use the resources held by the volunteer carer programme.


Julian Abel

Do ‘humorous’ references to murder and euthanasia reflect societal beliefs about palliative care?

13 Sep, 12 | by Assistant Editor

A recent survey of palliative care doctors published in the Mayo Clinic Proceedings investigates the role that gallows humour plays in the relationships between palliative care physicians and their patients and colleagues.

The online survey, developed by Lewis Cohen MD and colleagues from Tufts University School of Medicine, found that nearly three-quarters of doctors interviewed have been ‘humorously’ accused of promoting death. Most of the comments came from fellow physicians and health care workers.

Parallel to this, results indicated that 25 out of the 633 respondents reported having been formally investigated for hastening a patient’s death. One third of cases were initiated by fellow health care workers.

The study concludes that whether real or in jest, accusations of murder are part of a wider issue. The survey highlights that the presence of gallows humour into the medical environment is representative of conflicting beliefs about end-of-life care, specifically hastening death. The article cites global examples of palliative care cases that have been brought to court, emphasising the international scale of the issue.

Although caring for dying patients is always a serious matter, it would be a mistake to suggest that physicians ought to cease joking about death with their colleagues. Cohen reiterates that, “Levity must remain an acceptable defense mechanism in medicine for coping with the weightiest of medical duties: helping patients to die with grace and dignity”. In Cohen’s opinion, rather than curbing humorous references, it is more important for medical professionals to address the underlying conflicts that exist both globally and within their own community. Accusations from health care professionals clearly indicate that there are strong disagreements over end-of-life care that must be discussed.

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