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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.

News and updates from www.palliativedrugs.com

16 Jun, 17 | by bbutcher

June 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.

Safety updates

FDA restricts codeine and tramadol in children and adolescents
As part of an on-going safety review, the FDA have further restricted the use of codeine and tramadol:

  • codeine is contra-indicated for the treatment of pain or cough in children <12 years
  • tramadol is contra-indicated for the treatment of pain in children <12 years
  • codeine and tramadol are contra-indicated in children <18 years to treat pain after surgery to remove the tonsils and/or adenoids
  • it is recommended that codeine and tramadol are not used in adolescents 12−18 years whoare obese, or have conditions such as obstructive sleep apnoea or severe lung disease, which may increase the risk of serious breathing problems
  • it is recommended that codeine and tramadol are not used by breastfeeding mothers.

For more information, click here.

Editor’s note: The restrictions for codeine reflect those issued in the UK by the MHRA in April 2015 (for cough) and July 2013 (for pain). The MHRA have not specifically highlighted any restrictions in
the UK for tramadol, which is unauthorized for use in children <12 years.

Drug updates
Acetylcysteine oral powder launched in UK
A new oral acetylcysteine powder is now available in the UK, authorized as a mucolytic adjuvant for respiratory disorders associated with thick, viscous, mucus hypersecretion. The dose is 200mg
(1 sachet, dissolved in a little water) three times a day. The cost for 28 days@ 1 sachet t.d.s. = £315. For more information, click here.

Nystatin dose changes in the BNF and SPC
The dose for oral candidosis in the BNF and all the SPCs for nystatin 100,000units/mL oral suspension, is now 1mL PO q.d.s.. There has been recent confusion over the authorized dose with generic and proprietary SPCs including differing dose schedules. The dose in the Nystan (Sqibb) SPC was increased in September 2016 from 1mL to 4−6mL q.d.s., but has now been changed back to 1mL q.d.s. This was after further discussion with the MHRA who re-assessed the evidence and did not find it robust enough to support the dose increase. For more information, click here.

Editor’s note: PCF has always recommended a higher dose of nystatin oral suspension 100,000units/mL of 5mL PO q.d.s. for oral candidosis. Nystatin is a topical treatment and few people have the oral dexterity to cover the relevant areas with just 1mL, i.e. it is an issue of volume and not the dose itself. The authorized dose in the USA is 4−6mL q.d.s.

Fentanyl lozenges (Actiq) risk minimization guides
As part of the terms of the Marketing Authorization for Actiq (fentanyl lozenges; Teva), the company have published the following educational guides to minimize risk of misuse/dependence, abuse, medication errors, drug diversion, accidental exposure, overdose, off-label use, respiratory depression and dental decay in patients on opioids.
Prescription guide
Patient guide
Patient treatment diary

Latest additions
Restructured and updated PCF Part 2 live on the website
We are delighted to announce the launch of the new format for Part 2 of PCF on the www.palliativedrugs.com website in anticipation of PCF6 print publication in late 2017. This work has been completed separately over the last 3 months. In addition, several updates to Part 1 monographs have also been completed. The changes include:

    • a more user-friendly order for the chapters and appendices; most chapters/appendices have been renumbered
    • splitting of long chapters, e.g. Chapter 14 into shorter more specific chapters, e.g. a new fully revised chapter on renal impairment
    • new chapters, in both Part 2 e.g. Transdermal patches and Part 1, e.g. Opioid antagonists (peripheral)
    • a total of 26 updated chapters/monographs (including 9 in Part 1 / Prelims)
    • a new Part 3 section for routes of administration.

For full details, see the link below. We will now be focusing on completing updates to Part 1 monographs which will be subsequently added to the website. Follow us on twitter@palliativedrugs for the latest updates.
List of changes and restructure Jan-April 2017

Survey results

Results are available from our latest survey, ‘SSRIs for pruritus – Do you use them?’. For more information, click here.

Prepared by Sarah Charlesworth and Andrew Wilcock.

News and updates from www.palliativedrugs.com

12 May, 17 | by bbutcher

 

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 updates
MHRA warning regarding hyoscine butylbromide
MHRA published a warning in February 2017 reminding health professionals about the risk of serious adverse effects with hyoscine butylbromide injection IV/IM in patients with underlying cardiac disease. This followed a recent fatality (myocardial infarction) and a subsequent recommendation from the coroner to clarify the cautions section in SPC. The MHRA stated that they had received 9 reports of patients who had died following receiving hyoscine butylbromide injection and published the following advice:

    • Hyoscine butylbromide injection can cause serious adverse effects including tachycardia,hypotension, and anaphylaxis,
    • These adverse effects can result in a fatal outcome in patients with underlying cardiac disease, such as those with heart failure, coronary heart disease, cardiac arrhythmia, or hypertension,
    • Hyoscine butylbromide injection should be used with caution in patients with cardiac disease,
    • Monitor these patients, and ensure that resuscitation equipment, and personnel who are trained how to use this equipment, are readily available,
    • Hyoscine butylbromide injection remains contra-indicated in patients with tachycardia.

Subsequently, the MHRA have reviewed their data and have corrected the total number of fatal outcomes attributable to hyoscine butylbromide to 8. However, the episodes lacked full data and it is difficult to interpret the specific relevance of the reports to use in a palliative care setting, where the CSCI route of administration is more likely than IV. PCF advises clinicians to remind themselves of the longstanding cautions relating to the use of any antimuscarinic in patients with cardiovascular disease, and to continue to balance the potential for benefit and harm on an individual patient basis. For more information, click here.

Hot topics
NICE: Care of dying adults in the last days of life quality standard
NICE has published a separate specific quality standard on care of dying adults in the last days of life (QS144). This replaces statement 11 in the quality standard for end of life care in adults (QS13), which has now been removed. For more information, click here.

Cochrane review: methadone for cancer pain
This is the second update to the initial review in 2004 and subsequent update in 2007. The authors conclude that although methadone has been used for many years to treat severe cancer pain, the evidence base is sparse. There is low quality evidence to suggest that methadone has similar analgesic benefits to morphine in the management of severe cancer pain in adults. However, issues such as titrating to an effective dose and adverse effects may limit its potential. Methadone may have a role if other opioids are not tolerated, providing the issues of dose titration and possible severe adverse effects are considered. For more information, click here.

Fentanyl nasal spray (Instanyl) SPC updated
The frequency of use for all strengths of Instanyl ® (fentanyl) nasal spray (Takeda) has been updated in the UK SPC. Patients are still advised to wait 4h before treating another breakthrough pain episode, however the following statement has now been added:
‘On exceptional occasions where a new episode of pain occurs earlier than 4h after the last dose, patients can use Instanyl to treat it, but they must wait least 2h before doing so. Dose adjustment of the background opioid therapy following pain reassessment should be considered if the patient frequently presents with breakthrough pain episodes that are less than 4 hours apart or with more than four breakthrough pain episodes per 24 hours.’ For more information, click here.

Latest additions
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/May 2017 and will also contain multiple monographs that have been updated during the interim period.

Prepared by Sarah Charlesworth and Andrew Wilcock

Men and Grief – Beware of typecasting

9 May, 17 | by BMJSPCblog

 

by Dr Mark Taubert  @DrMarkTaubert

Clinical Director for Palliative Medicine, Velindre NHS Trust, Cardiff

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The rest will follow.

Nick Cave interview; source: GQ magazine

 

Shortcuts

29 Apr, 17 | by James Smallbone, Publishing Assistant

Cost analysis of a prospective multi-site cohort study of palliative care consultation teams for adults with advanced cancer: Where do cost-savings come from?

May P, Garrido MM, Cassel JB, Kelley AS, Meier DE, Normand C, Smith TJ, Morrison RS.

Palliat Med. 2017 Apr;31(4):378-386.

 

A prospective multi-site cohort study in three US hospitals included 863 patients with advanced cancer and analysed the cost-differences associated with early palliative care consultation (within 2 days of admission), later palliative care and usual care. 226 were seen by a palliative care team during their hospital admission (177 seen within 2 days of admission) and 637 received usual care only. This study showed that patients receiving early palliative care had less treatment and shorter length of stay; however there was minimal cost differences between the early and late palliative care consultations groups.

 

Composed by Elaine Boland.

Shortcuts

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.

Shortcuts

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.

Shortcuts

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?

BMJ Supportive & Palliative Care blog

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