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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

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

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?

Palliative care in space – breaking bad news to a satellite

9 Feb, 17 | by BMJSPCblog

Fengyun, a piece of space debris orbiting Earth

by Dr Mark Taubert, Consultant in Palliative Medicine at Velindre NHS Trust, Cardiff, Wales @DrMarkTaubert

What do you do when a piece of debris in space sends out a distress message via Twitter? This particular message read as follows: “Your people predict I will burn up in Earth’s atmosphere early 2017. You’ll get messages until then. I don’t want to die.”
How poetic, I thought and then did a bit of research. ‘Fengyun’ is a piece of space junk currently orbiting Earth at 28,000 km/hr. Fengyun, and two other pieces of space debris form part of ‘Project Adrift’, devised by Cath Le Couteur and Nick Ryan. It is an artistic exploration of the secret world of space junk, and the problems with it. You can see a film about it here.

But let me give you a bit of the past medical and social history for this particular palliative care patient, before we look at approaches to managing his or her distress:
Fengyun was once an important part of Chinese weather satellite FY1C, until it was blown into thousands of fragments by an experimental anti-satellite missile. Fenyun might burn up soon, but millions of other pieces, including Fengyun’s estimated 2840 siblings, will continue to circulate. They are potentially dangerous, too; any one of them could crash into a working satellite, currently in orbit, which poses risks for telecommunication and security.

What are this particular satellite’s main ideas, concerns and expectations? I think someone, in not too kind and compassionate a way, has broken it to Fengyun that he/she is going to die. I think the bad news was broken via electronic means, given that it is highly unlikely that a face-to-face discussion will have occurred in space. Someone dropped the bombshell that Fengyun will die by burning, quote: “I’m atmosphere intolerant, it makes me burn, and I have until early 2017, and then it’s death by close orbit“. Fengyun is now understandably frightened and distressed.

It did remind me of palliative care encounters and stories here on Earth that I hear on a monthly basis. The way news is broken about inevitable death, due to, for instance, an illness like secondary cancer, is at times insufficient. “I was told over the phone that it’s terminal.”, or “They were on a big ward round, came to my bed, one person who didn’t introduce himself spoke to me from the end of the bed, and Bang: –You’re dying!- “

 

Of course, breaking bad news is a very complex communication task. In addition to the verbal component of actually giving the bad news, it also requires other skills. These include responding to a patients’ emotional reactions, involving the patient in decision-making, dealing with the stress created by patients’ expectations for cure, the involvement of multiple family members, and the dilemma of how to give hope when the situation is bleak. The complexity of the interaction can sometimes create serious miscommunications such as patient misunderstanding about the prognosis of the illness or purpose of care. Poor communication may also thwart the goal of understanding patient expectations of treatment or involving the patient in planning next steps.

Many doctors and nurses will have heard of various forms of guidance to delivering bad news, one of which is the SPIKES mnemonic (1) and I will try to summarise what I might have done initially to help Fengyun:

STEP 1: S—SETTING UP the serious illness conversation: get the setting right and ensure privacy (no space debris should enter the palliative care space station whilst I am talking to Fengyun). Also, ensure Fengyun has significant others with him/her, in this case perhaps @VanguardAdrift another piece of space flotsam who is in the upper reaches and not at imminent risk of burning up.

STEP 2: P—Assessing the Patient’s PERCEPTION
Before discussing the aeronautical and astronomical findings, the palliative care space practitioner uses open-ended questions to create a reasonably accurate picture of how the patient perceives the situation- what it is and whether it is serious or not. For example, “What have you been told about your orbiting situation so far?” or “What is your understanding of the reasons we ran the earth re-entry probability test?”.

STEP 3: I—Obtaining the Patient’s INVITATION
While a majority of satellites may express a desire for full information about their prognosis, some may not. When a clinician hears a patient/satellite express explicitly a desire for information, it may lessen the anxiety associated with divulging the bad news. However, not wanting information is a valid psychological coping mechanism and may be more likely to be manifested as things become more serious. Discussing information disclosure at the time of ordering tests can cue the physician/NASA scientist to plan the next discussion with the patient. Examples of questions asked of Fengyun might be, “How would you like me to give the information about the results of your orbiting pathway?”

STEP 4: K—Giving KNOWLEDGE and Information to the Patient
It is important to warn patients/satellites that bad news is imminent and this may lessen the shock that can follow the disclosure of bad news. Examples include, “Unfortunately I’ve got some bad news to tell you” or “I’m sorry to tell you that…”.
It is vital to start at the level of comprehension and vocabulary of an individual patient. Importantly, try to avoid technical words like ‘atmospheric drag’, ‘biopsy’, or ‘aerodynamic heating’. Ideally try to give information in small chunks and check periodically as to the satellite’s understanding. And avoid phrases like “There is nothing more we can do for you.” This attitude is inconsistent with the fact that satellites and patients often have other important therapeutic palliative goals such as good pain control, listening to good music including ‘Satellite of Love’ by Lou Reed and of course being listened to and understood.

STEP 5: E—Addressing the Patient’s EMOTIONS with Empathic Responses
This one seems obvious, but there are a few things to bear in mind. Responding to the individual’s emotions is one of the most difficult challenges of breaking bad news. Emotional reactions may vary from silence to disbelief, crying, denial, or anger.
When we get bad news the emotional reaction is often an expression of shock, isolation, and grief. For instance, Fengyun posted the following on 09/02/2017: “I’ve gone 4,290,595,779 km since I was born and still have no purpose other than speed and mass.” In this situation the good palliative space physician can offer support and solidarity to the patient by making an empathic response. For instance, after you have given the satellite a brief period of time to express his or her feelings, let it know that you have connected the emotion with the reason for the emotion by making a connecting statement, such as “I can see that this is upsetting news for you”.

STEP 6: S—STRATEGY and SUMMARY
Satellites with a clear plan for the future are less likely to feel anxious and uncertain. Before discussing a plan, it is important to ask them if they are ready at that time for such a discussion. Clinicians are often very uncomfortable when they must discuss prognosis and treatment options with the patient, if the information is unfavorable. The reasons for this can vary but are often down to uncertainty about expectations, fear of destroying hope, fear of their own inadequacy in the face of an uncontrollable course of action, not feeling prepared to manage the anticipated emotional reactions, and sometimes embarrassment at having previously painted too optimistic a picture.

In summary, it is vitally important to keep in touch and follow things up. Sometimes, Fengyun, when the patients I see know that time may be short, they initially react with shock, but many take solace in the fact that we all must face death at some point in our lives, and that others have gone through similar experiences. And that there is always something else that can be done. There is nothing new under the Sun.

 

Ref:

(1) Bailea W, Buckman R, Lenzia R, Globera G, Bealea E, Kudelkab AP SPIKES- A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer doi: 10.1634/theoncologist.5-4-302 The Oncologist August 2000 vol. 5 no. 4 302-311 http://theoncologist.alphamedpress.org/content/5/4/302.full

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