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BMJ Supportive & Palliative Care is an international peer review journal for clinicians, researchers and other healthcare workers in all clinical services where supportive and palliative care is practised. The journal aims to link many disciplines and specialties throughout the world, promoting an exchange of research evidence and innovative practice by presenting high quality scientific reports, reviews, comment, information and news of international importance.

BMJ Supportive & Palliative Care is owned by BMJ Group and is an official journal of the Association for Palliative Medicine and the Australian and New Zealand Society of Palliative Medicine.

Shortcuts

27 Jun, 16 | by Jenny Thomas

PLoS One. 2016 Mar 24;11(3):e0151435. doi: 10.1371/journal.pone.0151435. eCollection 2016.

Patient Perspectives of Dignity, Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography.

Rodríguez-Prat A, Monforte-Royo C, Porta-Sales J et al

In a systematic review and meta-ethnography to explore the relationship between perceived dignity, autonomy and sense of control in patients at the end of life, 21 studies (400 participants) were included. There were three broad themes: a) dignity mediated by the loss of functionality, linked to the loss of control and of the value ascribed to one’s life; b) dignity as identity, which related to self-identity and the impact of social factors; and c) autonomy as a determining factor of perceived dignity, was linked to the desire for self-determination and control over dying. The authors suggest that dignity and autonomy are interconnected, multidimensional and dynamic concepts, similar to personal identity. Patients with an intrinsic sense of dignity maintained a positive view of themselves despite their illness, thus it is central to care to address the areas of life on which a patient’s dignity is based.

Shortcuts are compiled by Jason Boland

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.

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

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

 

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Rehearsing the letter backstage (Photo credit: Letters Live)

 

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.

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James Norris opening the Digital Legacy Conference

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

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

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

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

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

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Memory Tree at St Joseph’s Hospice

News and updates from www.palliativedrugs.com

16 May, 16 | by Jenny Thomas

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.

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 Palliativedrugs.com 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.

Palliativedrugs.com HON code accreditation extended

We are delighted to report that Palliativedrugs.com 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

 

Shortcuts

27 Apr, 16 | by Jenny Thomas

Cancer. 2016 Mar 28. doi: 10.1002/cncr.29844. [Epub ahead of print]

Multicenter cohort study on the survival time of cancer patients dying at home or in a hospital: Does place matter?

Hamano J, Yamaguchi T, Maeda I et al

In a prospective cohort study in 58 Japanese specialist palliative care services, potential differences in the survival time of adults (≥20 years old) with cancer receiving palliative care dying at home or in a hospital were explored. Patients were enrolled consecutively with 2426 recruited and 2069 analysed. Of these, 1582 received palliative care in hospital (1507 died in a hospital and 75 died at home); 487 received palliative care at home (100 died in a hospital and 387 died at home). Adjusting for background prognostic factors and stratified by a prognostic model into days’ and weeks’ and months’ prognosis groups, patients who died at home survived longer than those who died in a hospital in the days’ (estimated median survival 13 vs. 9 days) and weeks’ (36 vs. 29 days) but not the months’ prognosis group. Place of death had a significant influence on the survival time.

Shortcuts are compiled by Jason Boland

Shortcuts

13 Apr, 16 | by Jenny Thomas

J Pain Symptom Manage. 2016 Apr 1. pii: S0885-3924(16)30012-4. doi: 10.1016/j.jpainsymman.2015.12.338. [Epub ahead of print]

Comparing Unmet Needs to Optimize Quality: Characterizing Inpatient and Outpatient Palliative Care Populations.

Hochman MJ, Wolf S, Zafar SY et al

A cross-sectional descriptive secondary database analysis of a 10 organization registry of initial palliative care patient consultations was used to compare the unmet symptom, advance care planning and functional needs of 633 patients receiving hospital (n=216) and outpatient (n=417) palliative care. Inpatients were older than outpatients (73 vs. 64 years), were twice as likely to have a primary diagnosis of cancer (81% vs. 43%) and had a with a lower performance status (38% of inpatients and no outpatients had a Palliative Performance Score ≤30%), with twice as many inpatients thought to be in the last 6 months of life (88% vs. 46%). The vast majority of both groups indicated they were ‘at peace’, but 39% of inpatients and 21% of outpatients rated their quality of life as poor. At their first palliative care encounter 4% of inpatients and 59% of outpatients had pain, however more inpatients had anorexia and dysphagia compared to outpatients. In view of the differences in these population, the authors conclude that different clinician skillsets and assessments are needed depending on the setting of palliative care consultation.

Shortcuts are compiled by Jason Boland

News and updates from www.palliativedrugs.com

11 Apr, 16 | by Jenny Thomas

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.

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 40mg and 100mg in a pack of 100 at a cost of £199 and £189 (+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

Shortcuts

31 Mar, 16 | by Jenny Thomas

Ann Am Thorac Soc. 2016 Jan 19. [Epub ahead of print]

Palliative Care for Patients Dying in the ICU with Chronic Lung Disease Compared to Metastatic Cancer.

Brown CE, Engelberg RA, Nielsen EL, Curtis JR.

To assess differences in planning and delivery of end of life care to patients in intensive care with differing diagnosis, patients with interstitial lung disease (ILD), chronic obstructive pulmonary disease (COPD) and metastatic cancer who died in 15 intensive care units in the USA were identified and end of life decisions and outcomes in each group were explored. Patients with ILD and COPD were less likely to have documentation of discussion about prognosis and more likely to be for resuscitation at time of death compared to patients with cancer. Patients with COPD were more likely to have cardiopulmonary resuscitation attempted. Patients with ILD were less likely to have documentation of pain assessment in the last day of life. Patients with COPD and ILD had longer stays in the intensive care unit and those with COPD also had longer lengths of stay in hospital. Planning and delivery of end of life care to patients with chronic lung diseases in intensive care should be more proactive.

Shortcuts are compiled by Jason Boland

Shortcuts

17 Mar, 16 | by Jenny Thomas

Am J Hosp Palliat Care. 2015 Dec 31. [Epub ahead of print]

Delirium Frequency and Risk Factors Among Patients With Cancer in Palliative Care Unit.

Şenel G, Uysal N, Oguz G, et al

In a single Turkish palliative care unit, 213 consecutive inpatients with mixed cancers (90% advanced/metastatic) prospectively had delirium screened using the Delirium Rating Scale (on admission and 3 times a week) with confirmation by a psychiatrist if potentially present. On admission 32% of patients had delirium, which increased to 50% during the admission (hypoactive 49%, mixed 41% and hyperactive 10%). Patients with delirium had lower Palliative Performance Scale and a higher Palliative Prognostic Index, with 76% of patients with delirium dying during their admission compared to 36% of those without delirium. Risk factors (from an univariate analysis) included opioids, anticonvulsants, benzodiazepines, steroids, polypharmacy, infection, malnutrition, immobilization, sleep disturbance, constipation, hyperbilirubinemia, liver failure, renal failure, hypoxia, electrolyte imbalance and brain cancer.

Shortcutes are compiled by Jason Boland

Shortcuts

3 Mar, 16 | by Jenny Thomas

J Am Geriatr Soc. 2016 Jan;64(1):73-80.

Breathlessness in Elderly Adults During the Last Year of Life Sufficient to Restrict Activity: Prevalence, Pattern, and Associated Factors.

Johnson MJ, Bland JM, Gahbauer EA et al

To investigate the relationship between age, clinical characteristics and breathlessness during the last year of life, a secondary data analysis of a US based longitudinal cohort study in people aged 70 and older in the community who had died was performed. The primary outcome was the proportion of months of restricting breathlessness (defined as at least half a day a month in bed or reduction in usual activities) reported during the last year of life; collected monthly using telephone interviews. Breathlessness data were available for 548 of 589 (93%) participants (with cancer, dementia, organ failure and frailty); 311 (57%) reported restricting breathlessness on at least one occasion during the last year of life. Although no participant reported it every month it was more frequent in the last 3 months of life and was associated with anxiety and mobility difficulties. The authors suggest that breathlessness might not be caused by aging alone, in the absence of other pathology, and that breathlessness seems to occur across many illnesses in the last months of life. In view of this association, breathlessness should be assessed and managed in the possible context of the patient having a poor prognosis.

Shortcuts are compiled by Jason Boland

 

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