Vol 31 • Issue 1 • April 2019 Contents A refl ection from

NEWSLETTER

www.anzspm.org.au

The Australian and New Zealand Society of Palliative Medicine Inc. ABN 54 931 717 498

PO Box 7001, Watson ACT 2602

+61 2 6189 2244

[email protected]

President: Meera Agar

CEO: Simone Carton .......................... @ANZSPM

Newsletter Editor: Chi Li ............... @ANZSPMed

Suite 6, Level 5, 490 Northbourne Avenue, Dickson ACT 2602

Vol 31 • Issue 1 • April 2019

By Rachel WisemanANZSPM Aoteroa Chair

THE AOTEAROA update you may have just read was emailed through about 20 minutes after Christchurch Hospital was locked down on Friday, 15 March 2019. At that point we knew very little about what was happening, other than the fact there was no one allowed in or out, and numerous sirens were wailing outside – the media was way ahead of us in term of information. I emailed my update through to [ANZSPM Newsletter Editor] Chi, wondering what was going to unfold over the next few hours. We all sat in our respective departments, waiting to be called.

The fi rst call for help came from the Acute Medical Admissions Unit (AMAU). The Emergency Department was transferring all medical patients out and doctors were needed to clerk and review the patients arriving on the AMAU. Needless to say there were many more hands than needed and I found myself at a loose end.

After the Christchurch earthquake, the disaster response protocols were reviewed. I remember providing my contact details as palliative care is an important part of the disaster response, for those deemed to have unsurvivable injuries at triage. It was acknowledged in those protocols that we should provide exemplary and

Continued on page 6

A refl ection fromChristchurch

ContentsChristchurch refl ection 1

Editor’s note 2

President’s report 2

ANZSPM Aotearoa Chair’s report 3

From the CEO 4

New Council members 4

Member acknowledgement 5

Letter to the Editor:Compassionate Communities 7

Update on ANZSPM supported research 7

PaCCSC/CST Annual Research Forum 2019 8

World-fi rst drug listing for breathlessness 9

Journal Club 10

Advertisements 18

Conferences & events 20

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2 ANZSPM Newsletter Volume 31 • Issue 1 • April 2019

N E W S L E T T E R

‘SOMETIMES OUR lives have to be completely shaken up, changed and rearranged to relocate us to the place we are meant to be’ – Anon.

I, as have many of you, have found myself needing to much more regularly articulate the critical importance of access to high quality palliative care services and to develop a shared language to better explain what palliative care actually is and the positive outcomes it can achieve. As we continue this conversation in 2019, it will be the foundations of respect, clarity in message and collaboration that will ensure our powerful stories can most meaningfully impact on the lives of those who are reaching the end of life. In New Zealand we have been involved in the #weneedtotalkaboutdying community awareness campaign.

We are delighted that ANZSPM has now joined as a national association member of the European Association for Palliative Care (EAPC). ANZSPM is the fi rst non-European association to be admitted to membership of the EAPC, an opportunity which became possible following a recent change to the EAPC by-laws. This brings many opportunities for individual members, and also ensure we can broaden our work more collaboratively with our palliative medicine and palliative care colleagues internationally.

2019 is well underway, and in Australia we welcomed the release of the updated National Palliative Care Strategy by the Australian Government Department of Health.1 Importantly ANZSPM will be advocating for a strong implementation plan to ensure we see key deliverables from the strategy goals it outlines. All of us should also strive to ensure that

the national strategy is refl ected in the plans and policies of our local jurisdictions. I also draw your attention to the recently released Report from the Specialist and Consultant Physician Consultation Clinical Committee which is important for our Australian members and is currently open for consultation until the 17 May 2019.2 We also have been actively involved in providing a palliative care perspective to discussion about opioid regulation in Australia through the Opioid Regulation Advisory Committee. ANZSPM Aotearoa has been busy preparing for their trainee day and annual update.

We are delighted that ANZSPM has now joined as a national association member of the European Association for Palliative

Care (EAPC).

In closing, I would like to share the words of Salil Patel from a recent BMJ blog post, which remind us about the importance of medical practitioners in the care for those who are dying: ‘For most people, they might walk alongside someone who is dying a handful of times during their lifetime. But for medics, it is far more common. Is it not time we started to prepare ourselves for these experiences?’3 Whether it is through clinical care, training, advocacy and policy or research; our role in this narrative is as crucial as ever.

References1 Australian Government Department of Health.

National Palliative Care Strategy 2018. http://www.health.gov.au/internet/main/publishing.nsf/Content/EF57056BDB047E2FCA257BF000206168/$File/12291_PC-Strategy.pdf

2 Australian Government Department of Health. Open Consultation – Medicare Benefi ts Schedule (MBS) Review Taskforce reports. http://www.health.gov.au/internet/main/publishing.nsf/Content/MBSR-open-consult

3 Patel S. The paradox of doctors dealing with death. BMJ opinion, 13 March 2019. https://blogs.bmj.com/bmj/2019/03/13/salil-patel-paradox-doctors-dealing-death/

WHAT DO we do as human beings, as doctors, as a specialty, and as a community when faced with traumatic events, life-threatening situations and death? How do we respond? What does that say about who we are?

These important questions are explored in various ways throughout this issue of ANZSPM Newsletter and in upcoming publications and events: ANZSPM Aotearoa Chair Rachel Wiseman shares her experiences from the recent shooting in Christchurch (title page); David Brumley is looking for other palliative medicine specialists who share his interest in promoting Compassionate Communities (Letter to the Editor, page 7); Frank Brennan has written a book on how great writers capture these experiences (As Vast as the World, page 18); and at the upcoming ANZSPM Medical & Surgical Update 2019, there will be a session focusing on trauma and disasters medicine and end-of-life care (26 – 27 July 2019, page 19).

Elsewhere in this issue, we meet new Council members Eswaran Waran and Christine Mott (pages 4–5), and acknowledge the contributions of retiring member Marion Taylor (page 5). Read about the world-fi rst listing of extended-release morphine for chronic breathlessness in Australia (page 9); fi nd out the results of a survey on professional supervision conducted by Debbie Barham, which some of our New Zealand members might remember participating in (page 7); and discuss the latest research into catastrophic orders, symptom clusters in renal failure, goals-of-care discussions, and symptom burden in non-invasive ventilation (Journal Club, from page 10).

Happy reading!

Editor’snoteChi Li

President’s report

Meera Agar

ANZSPM Newsletter Volume 31 • Issue 1 • April 2019 3

www.anzspm.org.au

Tena Tatou KatoaGreetings to you all from Aotearoa

After the post-Christmas lull, it certainly feels like things are getting busy over here in Aotearoa. Between the time of writing and the time of publication, I am expecting that quite a lot will have happened in this corner of the world.

There is ongoing advocacy in the ‘normal dying’ space in New Zealand with Kathryn Mannix’s recent tour of New Zealand. Kathryn certainly squeezed a lot into her time over here, with multiple talks, lectures, book signings and a session with parliamentarians at the Beehive. Closely aligned with this is Hospice NZ’s cartoon videoclip ‘What is it like to die?’ as part of the #weneedtotalkaboutdying campaign (see https://www.youtube.com/watch?v=toO_oI16XsQ&feature=youtu.be).

As part of this campaign, ANZSPM have been collaborating with Hospice New Zealand on a number of social media videoclips around normal dying from the clinician’s perspective which should be released shortly – watch this space. Also visiting NZ was Leonie Herx, President of the Canadian Palliative Care Society, who spoke in Wellington on the impact of euthanasia on Canadian medical practice.

By the time you read this, it is likely that the Justice Select Committee will have released their fi ndings on David Seymour’s End-of-life Choice Bill. MPs will have the opportunity to debate the recommendations prior to the Bill going to a Second Reading in either April or May. If the Second Reading has not occurred by the time you read this, then now is a critical time to present your views to those that control the vote – your Members of Parliament. I would encourage Aotearoa members to sign up to http://www.doctorssayno.nz/ if you have not done so already – we are aiming for 1,000 signatories. I would also advocate for members to once more write to your local electorate or list MP stating your personal views around the Bill, even if you have done this previously.

Also water under the bridge by the time you read this will be Conversations that Count day on 5 April. This year hosted by the Health Quality Safety Commission, there have been some beautiful resources created to help encourage Kiwis to have a conversation with their loved ones about future care. See https://www.hqsc.govt.nz/our‑programmes/advance‑care‑planning/kia‑korero‑lets‑talk‑advance‑care‑planning/ for more detail.

Currently we are gearing up for our next Trainee Day in Palmerston North, running on 30 March. The program for the Annual Update in Queenstown is coming together and we hope to have a draft available on the website soon. The day prior to the Annual Update on Thursday, 27 June, we have both a trainee day and the Hospice New Zealand Medical Directors meeting running alongside each other, so lock this into your diaries now.

On a lighter note, no whakatauki (proverb) for you this time, but have a wee peek at this videoclip for a Kiwi take on an old classic that should make you smile:

https://www.thehits.co.nz/video/kiwi‑kapa‑haka‑group‑performs‑incredible‑a‑cappella‑cover‑of‑bohemian‑rhapsody‑in‑te‑reo‑maori/

ANZSPM AotearoaChair’s report

Rachel Wiseman

The Australian & New Zealand Society of Palliative Medicine Incorporated is a

not-for-profi t specialty medical society for

medical practitioners who provide care for

people with a life-threatening illness.

OUR MEMBERS ENJOY:

• Networking opportunities with

fellow members

• ANZSPM Newsletters – published

three times per year and including

educational and interesting

articles relevant to palliative

medicine practitioners

• ANZSPM Member Alerts – our

regular electronic updates to

members with the latest

palliative medicine news,

research and events

• Reduced registration fees at our biennial conference and other education forums and seminars

• Reduced subscription fees to some palliative medicine journals

• Opportunities to infl uence policy affecting palliative medicine practitioners.

FOR MORE INFORMATION OR TO JOIN:Please visit www.anzspm.org.au or contact the ANZSPM offi ce by email [email protected] or ph +61 2 6189 2244


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EARLIER THIS year we were thrilled to announce closer ties with our European counterparts by becoming the first non-European association member of the European Association for Palliative Care (EAPC). This not only gives ANZSPM an opportunity for improved international engagement and influence as a peak sector body, but also means all ANZSPM members can now access individual membership of EAPC, and the associated benefits, at no cost. At the time of writing, 52 ANZSPM members have already taken advantage of this opportunity to join EAPC for free. If you haven’t joined yet, we encourage you to visit the EAPC website to take advantage of this great new member benefit exclusively for ANZSPM members!

We continue to explore opportunities for engagement with our international peers, while also looking closer to home at opportunities for collaboration. Members will be aware from our recent Member Alert emails and social media communications that ANZSPM has been working with Hospice NZ on an awareness campaign #weneedtotalkaboutdying and

together with our Aotearoa Committee we continue to work with Hospice NZ to identify opportunities for further collaboration to achieve common goals for the Aotearoa community and palliative care sector.

In the advocacy space, work has continued on government consultations and implementation activities around Voluntary Assisted Dying in several Australian jurisdictions and New Zealand. Council members recently welcomed a presentation from the Palliative Care Australia delegation to Canada on their learnings about the Canadian experience with Medical Assistance In Dying and we are continuing to engage with government, MPs and colleagues to understand the potential impact on our members and on the Palliative Medicine sector generally that these changes may bring about.

To better inform our policy positions around workforce planning, Council agreed at the start of the year to establish a Workforce Strategy Advisory Working Group to be co-convened by A/Prof Leeroy William and Dean Fourie, with strong interest in the group from members. We are looking forward to sharing information as the group progresses.

Event planning has kept the ANZSPM office busy as usual, with the first Trainee Day of 2019 on Saturday 30 March in Palmerston North, New Zealand. Trainees have plenty of opportunities for professional development across varied locations in 2019, with planning

also underway for Trainee Days on the Gold Coast on 6 June, Queenstown on 27 June as part of the Aotearoa Annual Update, Melbourne on 25 July as part of the ANZSPM Medical & Surgical Update, and Perth on 10 September as part of the Oceanic Palliative Care Conference 2019 (for which ANZSPM members can now register with a special ANZSPM discount!) The ANZSPM Medical & Surgical Update Committee has been meeting regularly to put together an enticing program for this year’s Update in Melbourne and we hope many members will be joining us there on 26–27 July.

From a governance perspective, we introduced new policies and procedures around representation and special interest group formation, to support members volunteering their time for ANZSPM to better understand their role and responsibilities and provide transparency to our processes as well as improved reporting. The procedures will be rolled out as new groups/representatives are appointed and we hope it encourages improved engagement and participation! All members are always welcome to reach out to the ANZSPM office with ideas and initiatives that you would like us to consider, including new special interest groups or policy initiatives. If you have an idea, we’d love to hear from you, particularly if you are willing to jump in and contribute to making ANZSPM better for everyone! Members are very welcome to contact the ANZSPM office team at [email protected].

From the CEO

Simone Carton

Christine MottI COMPLETED my Fellowship in general paediatrics in 2014 and then my Fellowship in palliative

medicine in 2017 as one of the first to complete the subspecialised paediatric training pathway. I also completed a Clinical Diploma in Palliative Medicine

through the RACP, along with a Masters in Palliative Care through Flinders University. I am a paediatric palliative care physician working at both Queensland Children’s Hospital in the Paediatric Palliative Care Service, and at Hummingbird House in Brisbane, supporting the state-wide care of children with life-limiting conditions. I am also the Acting Clinical Lead in the Queensland Interdisciplinary Paediatric Persistent Pain Service. I love working with my excellent multidisciplinary teams in all these roles.

I engage in clinical work, research, education and advocacy in paediatric palliative care through membership to a number of working groups. I am the chair of the Perinatal, Antenatal and Neonatal Palliative care Collaborative (PAN-PC), one of my passions being provision of excellence in palliative care to this cohort with equity across the state. I recently completed a study on ambulance services and paediatric palliative care, and hope to next tackle a project on anticipatory phone outpatient reviews in paediatric palliative care.

When I’m not working I enjoy spending time with my family including my two

New Council members


www.anzspm.org.au

MEMBER ACKNOWLEDGEMENTS: We would like to acknowledge the contribution of ANZSPM members toward the advancement of our specialty by marking their retirement and remembering them after death. Members are encouraged to submit details for acknowledgement in ANZSPM Newsletter via email: [email protected]

I’VE BEEN privileged to be a GP in Whanganui, New Zealand for 25 years, and joined the Hospice Whanganui team as a medical officer in 2003. I’ve been a member of ANZSPM for about 12 years. For most of the last 15 years I worked part-time in GP and part-time at hospice. Many colleagues cautioned me against that combination but for me it provided balance and diversity. There is so much that palliative care can give to general practice and vice-versa. Sometimes I had long waiting times in the GP practice because I was in ‘palliative listening mode’! Mostly I found that GP patients needed to be heard and didn’t mind the wait. I’ve always enjoyed the relationships formed in GP practice, and many of those continued into the palliative phase.

There were opportunities to be involved in local and national working groups, e.g. in advance care planning and the LCP. Locally I co-hosted Whanganui’s first and well-attended Death Café where we served cake and encouraged people to talk about any aspects of death. Recently two

colleagues and I spoke at a somewhat controversial public meeting on the issues raised by the David Seymour ‘End of Life Choice’ bill. This stirred up such a furore that David Seymour felt he had to come to Whanganui to set the record straight!

In my last two years at hospice I was in a teaching and on-call role. I had the opportunity to interact with third year medical students in their community

week, trainee interns in their GP run, GP registrars, and most recently junior hospital doctors in their community-based run at the hospice. There were also many opportunities to speak to hospital RNs and practice nurses, GPs, senior hospital doctors, social workers, and members of the public about aspects of palliative care. I greatly enjoyed that aspect of the job and it was enhanced by the University of Otago paper on Teaching and Learning in Medicine.

It was with mixed feelings that I decided to retire. It coincided with a welcome increase in hospice medical staffing and my own need to seek new opportunities and life-affirming activities. I look back on my time in palliative care and ANZSPM with gratitude for all the wonderful relationships and learning.

Kind regards,

Marion Taylor Whanganui

kids and our lovely adopted rescue dog. I also love to relax with puzzles, including escape rooms and complex Lego sets. I’m excited to provide a paediatric presence on ANZSPM Council and hope to see great collaborative growth into the future.

Eswaran WaranLIKE MANY of my palliative care colleagues, my background is in general

practice. I was a GP in a busy urban practice in Adelaide for ten years before embarking on advanced training. I had always had an interest in palliative care, since my days working in a hospice as a resident medical officer.

After much deliberation, I decided to take the plunge and enter the training program; this was a daunting decision, but one of the best I have ever made. The training program, for me, was an excellent opportunity to travel and work in different states and territories (SA, VIC and the NT). Subsequent to completing my training, I have been

a specialist in the Top End of the NT, at the Royal Darwin Hospital, for the past four years. My time in the Top End has provided me with wonderful and unique experiences; the medicine has been both challenging and rewarding. I have a professional interest in the integration of palliative care and oncology and progressive hospice care. I look forward to the privilege of serving on ANZSPM Council.


N E W S L E T T E R

immediate care for the dying, just as we would provide exemplary care for those that may survive. I rang the duty manager – I haven’t been called, are palliative care needed to care for the dying? Where else can we be of service? The answer comes back – the Social Work team is with the relatives in the café, perhaps they may like some support. We head on over.

What we walk into is a room filled with raw emotion, it was so palpable you could almost touch it. The Social Work and Allied Health teams are taking details of loved ones who are missing, police are milling round, no one knows what is happening to the injured in the hospital and the uncertainty is agony. It took many hours to identify all those bought into the hospital alive. Many had no ID on them upon arrival and were unable to tell us their names, often being taken straight to theatre for prolonged surgeries. The atmosphere amongst the relatives in the café went from shock, to anger, to resignation and finally, once the injured had been identified and the list of names read out, to utter despair. I will never forget that moment.

What have I learnt from this so far? That my Social Work and Allied Health colleagues are amazing and did an outstanding job supporting families in the immediate aftermath of the

event. That having a few doctors and nurses available for the relatives (albeit trained in palliative care) was helpful for the inevitable chest pain, headache and asthma attacks that occurred – in retrospect I wish I had had a little kit with paracetamol, Gaviscon, a salbutamol inhaler and GTN spray. Ultimately, our role in those hours after the terror attack wasn’t caring for the dying (only one person died on arrival at hospital), but revolved around ‘communication’ and ‘being present’ – the essence of palliative medicine, albeit in a different guise.

The other amazing part of all this is the outpouring of love, or aroha, from both within and outside of New Zealand. I am so proud of the fact that New Zealand has responded with love, not hate or vengeance. Who would have thought we have such an amazing Prime Minister! Less than

Continued from page 1

A reflection from Christchurch

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Christchurch call to prayer following the shooting tragedy.

a week on and we already have new gun laws being drafted.

Who knows what the next few weeks will hold. Christchurch was a vulnerable city emotionally, having not fully recovered from the effects of the 2011 earthquake, and many are reeling from last week’s attack even if not directly affected. However, we are resilient, and we are loved and supported by the whole of Aotearoa. Kia kaha Christchurch, stay strong.


www.anzspm.org.au

OVER THE last several years there has been an upsurge of interest in the Compassionate Communities idea. The interest is coming from many community foci and also from palliative care. The idea of increased community involvement in care is of course not new, but a specific focus on improving the community culture of support for those with progressive disease and for end-of-life care has developed in the United Kingdom and in Europe, much of it due to the continuing work of Prof Allan Kellehear at the University of Bradford. Ongoing academic study of the Compassionate Communities idea continues in Australia, notably at La Trobe University Palliative Care Unit

and at the School of Social Sciences at the University of Western Sydney. Many community groups have developed in Australia too, including such groups as The Groundswell Project, which has been instrumental in supporting several conferences in Sydney over the last few years.

Just as importantly, many individual projects have been undertaken in many areas across Australia. The guiding idea behind these community groups is the notion that it is possible to change our society in ways that will give families and communities the skills to properly support the dying and their families to die and grieve well.

Those of us within palliative care cannot, by ourselves, make these changes, but may be able to catalyse them. Many members of ANZSPM are already actively involved in projects in this area. The reason I write is to ask whether there is a sufficient number of us to form an interest group, whether formal or not, to keep each other informed of developments in this area, or to do something more. I will collate any emails I receive at [email protected], and communicate further with anyone who cares to contact me.

Sincerely,

David Brumley Queenscliff, Victoria

The role of professional supervision for palliative care doctors in New Zealand:A quantitative survey of attitudes and experiencesBy Debbie Barham Advanced Trainee, Waikato

What prompted this project? Professional supervision (PS) is not well understood within the medical context. It may be seen as a partnership which allows reflection on contextualised work-related issues, with ongoing benefit in terms of learning and development and enhanced professional practice. I wanted to look further into this in the local context.

What was the study aim? To explore the attitudes to and experiences around professional supervision amongst doctors working in palliative care in New Zealand.

Tell us about the study design.Cross-sectional quantitative survey, purposively sampling members of the Australian and New Zealand Society of

Palliative Medicine (ANZSPM). Results analysed in SPSS with non-parametric testing for differences and correlations.

What were the main results? There were 133 eligible participants from the ANZSPM Aotearoa database, 80 of whom responded (60%), including 35 respondents currently participating in PS. Attitudes towards PS were positive, indicating it is felt to be important and likely to enhance clinical functioning, with statistically significant favourable differences for those currently participating.

Barriers to undertaking PS do exist, including difficulty finding a supervisor and lack of funding or time, with subgroup analysis showing the most significant factor is whether the workplace advocates for PS.

Experiences of PS showed it was felt to be safe, addressed a wide variety of issues, and without exception

had a positive effect on coping ability. Participants tend to receive PS monthly, on an individual basis, with external supervisors from outside the medical profession.

What was the conclusion? Palliative care doctors in New Zealand felt PS to be important and beneficial, both personally and professionally. Barriers to accessing PS exist, and further discussion includes the impact of professional and organisational culture on PS uptake. There are opportunities for further research and development, and the palliative medicine community may be in a position to highlight the benefits of PS for their medical colleagues.

S U P P O R T E D R E S E A R C H

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Where great minds come together By Linda JamesProject Offi cerUniversity of Technology Sydney

THE 2019 Palliative Care Clinical Studies Collaborative (PaCCSC) and Cancer Symptom Trials (CST) Annual Research Forum brought together world-class researchers, clinicians and dedicated consumer advisers to talk about the successes and challenges of clinical trials.

Prof Meera Agar, Inaugural Chair of CST, began the forum by welcoming attendees and acknowledging the Gadigal People of the Eora Nation. CST is an Australian and New Zealand collaborative and Prof Agar paid respect to Aboriginal, Torres Strait Islander and Maori attendees, noting this as a fi tting collaborative platform on which to hold the fi rst CST Annual Research Forum.

Prof Attila Brungs, Vice Chancellor and President, University of Technology Sydney (UTS), gave the opening address. Prof Brungs highlighted the university’s investment in national collaborative research networks such as CST and PaCCSC, and the global support for high-quality clinical trials. He recognised that ‘good research happens when great minds come together’, a nod to the collective expertise in the room.

‘CST and PaCCSC are setting the benchmark for trials collaboratives and the conduct of investigator-initiated trials across UTS.’

– Prof Attila Brungs

We’d like to thank our guest speakers for their contribution to the forum’s success: Prof Anna Nowak, Chair of CoOperative trials Group for NeuroOncology (COGNO) and Director of National Centre for Asbestos Related Diseases, The University of Western Australia; Prof Bogda Koczwara, Director of the Flinders Centre for Innovation in Cancer, Flinders University; and Prof Christine Jenkins, Head of the Respiratory Group at The George Institute for Global Health, University of Sydney. The program was enriched by their enthusiasm in sharing their diverse experience in clinical trial management, research, and mentoring the next generation of researchers.

Ruwani Mendis, a palliative medicine physician and medical oncologist from Western Health, and Nicola Atkin, palliative medicine physician at Peter MacCallum Cancer Centre and The Royal Melbourne Hospital, presented their new study ideas on cancer and quality of sleep, and anxiety in palliative care patients. Collaborative

discussion followed the presentations with presenters receiving advice, suggestions and (sometimes tough) questions to help improve their research questions.

Symptom Node Subcommittee Chairs provided progress updates on PaCCSC and CST research focus areas

in fatigue, breathlessness, cognitive and neurological disorders, nausea, pain, appetite and cachexia, and gut dysfunction. These updates emphasise the importance of our goal to improve the quality of life for people living with these symptoms. Attendees were encouraged to contact PaCCSC and CST to express their interest in working with the subcommittees.

Prof Jennifer Philip, Victorian Comprehensive Cancer Centre Chair of Palliative Medicine at the University of Melbourne, spoke about the value of qualitative research in clinical studies. Professor Philip also chaired an expert panel whose insights highlighted the challenges of developing a new research question into a supported clinical trial concept. Thank you to our panel members, Priyanka Bhattarai, Joanne Shaw and Prof Jane Phillips.

More than ten years ago, Prof David Currow, PaCCSC Chief Investigator, had a vision to establish a leading palliative care research collaborative. This year, Prof Currow closed the 10th PaCCSC Annual Research Forum by acknowledging the wonderful team effort that brought his vision to life. At the 10th PaCCSC Annual Research Forum, we celebrated PaCCSC being a world leader in palliative care clinical trial research. Prof Currow looks forward to building collaborations into the future and working closely with CST to set goals for the next ten years.

The Annual Research Forum brings together a dedicated and diverse group of ‘great minds’ and provides opportunities for collaboration and a platform for new ideas. The PaCCSC and CST teams look forward to the year ahead and to bringing everyone together for the 2020 Annual Research Forum.

PaCCSC/CST Annual Research Forum 2019:

Above, L-R: Meera Agar and Peter Allcroft at the Forum.


www.anzspm.org.au

World-first listing of a medication for the symptomatic reduction of chronic breathlessnessBy Prof David Currow Australian national Palliative Care Clinical Studies Collaborative

IN FEBRUARY 2019, Australia became the first country in the world to create a recognised clinical indication for the symptomatic reduction of chronic breathlessness on their pharmaceutical register. This is an important first step internationally as it will foster a focus on chronic breathlessness: its impact on individuals and their caregivers; its impact on the health system; and the urgent need for further research.

The listing is for regular, low-dose, extended release morphine (Kapanol®).1 There is no limit to the background illness(es) causing the chronic breathlessness in this indication, the length of time for which it has been present, nor for the time period for which it can be prescribed.

This builds on more than 20 years’ work by investigators in Australia including, more recently, the Australian national Palliative Care Clinical Studies Collaborative

(PaCCSC). This has been a huge effort by the whole team. Research included: randomised, placebo controlled trials; dose ranging studies and long-term follow-up of responders; health services research; and population studies. The research program currently also involves laboratory, clinical and population studies in furthering our understanding of this clinical syndrome.2 A multi-site, double-blind, dose increment, randomised, placebo controlled trial continues to recruit people with moderate/severe chronic breathlessness and chronic obstructive pulmonary disease (COPD).3 This study includes key sub-studies in driving (a car, not a golf ball), the impact on cortisol levels and, separately, testosterone levels, and the therapy’s impact on sleep through laboratory and ambulant sleep studies.

This listing is an exciting step forward that reflects an enormous commitment by patients to participate

in these studies.

The recognition of chronic breathlessness as a specific clinical target for pharmacological therapies builds directly on the Canadian Thoracic Society breathlessness ‘ladder’ which starts with optimising the management of the underlying causes of the person’s chronic breathlessness, and using evidence-based, non-pharmacological interventions before introducing pharmacological interventions.4

The new Australian listing specifically precludes co-prescribing of an immediate release opioid as a ’breakthrough’, is not indicated for acute exacerbations of breathlessness, and urges caution when prescribing in the presence of other centrally-acting substances including alcohol and benzodiazepines.

This listing is an exciting step forward that reflects an enormous commitment by patients to participate in these studies and a long-term commitment by clinicians and researchers to improve the evidence base that informs our day-to-day clinical practice. This listing also demonstrates that the work of PaCCSC is important in refining the care that can be available to all people, whether or not they are referred to a specialist palliative care service.

DisclosuresDavid Currow has been a consultant to, and received intellectual property payments from, Mayne Pharma International Pty Ltd.

References1 https://www.ebs.tga.gov.au/ebs/picmi/

picmirepository.nsf/pdf?OpenAgent&id=CP-2013-PI-01928-1&d=201903241016933

2 Johnson MJ, Yorke J, Hansen-Flaschen J, Lansing R, Ekström M, Similowski T, Currow DC. Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness. Eur Resp J 2017;49(5).

3 Currow D, Watts GJ, Johnson M, et al. A pragmatic, phase III, multisite, double-blind, placebo-controlled, parallel-arm, dose increment randomised trial of regular, low-dose extended-release morphine for chronic breathlessness: Breathlessness, Exertion And Morphine Sulfate (BEAMS) study protocol. BMJ Open. 2017 Jul 17;7(7):e018100.

4 Marciniuk DD, Goodridge D, Hernandez P, et al. Managing dyspnea in patients with advanced chronic obstructive pulmonary disease: a Canadian Thoracic Society clinical practice guideline. Can Respir J. 2011;18(2): 69-78.

JOURNAL CLUB

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‘Comparison of fatigue, pain, depression in patients with advanced kidney disease and cancer – Symptom burden and clusters’

(GI) cancer patients, which have been identified as a group associated with very high symptom burden and poor QoL. Secondary objectives included examination of potential demographic and disease-specific predictors of symptom clusters among the three groups.

MethodsThis study was a post-hoc analysis of data collected as part of larger, prospective cohort studies at the University of Pittsburgh. English-speaking patients who were ≥18 years old with Stage 4 – 5 CKD or ESKD were approached between March 2004 and December 2008 during routine clinic visits or initial kidney transplant. Exclusion criteria included the presence of severe active medical or psychiatric illness.

For the gastrointestinal cancer group, this also included patients with hepatocellular or cholangiocarcinoma, pancreatic, or other solid tumours with liver metastases who were recruited between April 2008 and April 2013.

Authors: M Jhamb, K Abdel‑Kader, J Yabes, Y Wang, SD Weisbord, M Unruh, JL Steel.

Journal of Pain and Symptom Management 2019;57(3):566-575.

Study summaryBy Bonnie Lui Advanced Trainee

BackgroundPain, fatigue and depression have been identified as the most common and debilitating of symptoms for cancer patients, which has led to the development of screening and treatment guidelines. Fatigue often coexists with other symptoms such as pain, emotional distress, sleep dysfunction, and depression. Conversely, although patients with chronic kidney disease (CKD) and end-stage kidney disease (ESKD) experience high mortality, substantial symptom burden and poor quality of life (QoL) that is comparable to advanced cancer patients, there remains limited progress beyond advocacy to integrate the recognition and management of symptoms into routine CKD care.

AimsThis study set out to characterise and compare symptoms (fatigue, pain, depression) and symptom cluster phenotypes among advanced CKD, ESKD, and advanced gastrointestinal

Eligibility criteria included biopsy-proven cancer, age ≥ 21 years, and English fluency. Patients were excluded for active suicidal or homicidal ideation, hallucinations, delusions or previous liver transplantation.

In all cohort groups, only those who completed the Assessment of Chronic Illness Therapy-Fatigue were included. Differing but validated and comparable questionnaires were completed for pain and depressive symptoms.

ResultsThis study included 82 advanced CKD, 149 dialysis-dependent and 606 gastrointestinal cancer patients. Kidney disease patients were significantly younger with a higher proportion being of black race, and having a comorbidity of diabetes, hypertension and cardiovascular disease as compared to the cancer group (P < 0.001). Pain medications and antidepressant use was similar across all three groups.

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high and similar prevalence of pain, and fatigue in people with advanced chronic kidney disease (CKD stage IV/V), end stage kidney disease (ESKD) on dialysis and gastrointestinal cancer.

It is interesting to consider the comparison of cluster phenotypes found with a fatigue pain cluster in the renal group (without depression) and a fatigue depression cluster in the cancer group (without pain) and the contributing factors to these results such as dialysis. Dialysis, given the treatment time required, has an associated burden and also provides opportunities for informal social networks and psychological supports both with other patients and health care providers.

It is important to recognise in this paper that the average age of participants with kidney disease was 52.5 years with CKD and 56.3 years with ESRD – much lower than the average age of Australian and New Zealand patients. For example, 42% of Australians over the age of 75 have CKD and the highest prevalence group on dialysis are between 75 to 84 years of age.1-2 This limits the application of the results to the many elderly, complex and comorbid patients we care for with renal disease.

With regards to predicting which patients were more likely to fall into the high cluster of pain, depression and fatigue, a clinical predictor in ESKD was higher Body Mass Index (BMI) and antidepressant use. Targeting BMI as a potential therapeutic strategy for symptom management in ESKD must be considered cautiously given the numerous studies showing the paradoxical association of higher BMI with lower mortality risk.3 This association is not completely understood and is likely related to chronic nutritional deficiencies from protein energy wasting associated with chronic inflammation and potentially other uraemic symptoms including anorexia and nausea.

Fatigue was highly prevalent and similar across all groups with more than 75% of patients reporting a significant level with similar severity. Prevalence of clinically significant pain was also comparable. However, moderate or severe depressive symptoms were more common in cancer patients (P < 0.001).

For patients with ESKD and experiencing all three symptoms (HIGH symptom burden cluster), this was associated with significantly higher body mass index and antidepressant use. In cancer patients, there were a significantly higher proportion of females, less alcohol and smoking use, higher antidepressant use, lower serum albumin and lower haemoglobin levels.

DiscussionThis study adds to the existing literature of higher prevalence of fatigue in renal and cancer patients as compared to the general population, which often exists as part of a symptom cluster with pain and emotional distress. Strengths include a larger sample size as compared to previous studies, and the use of validated symptom assessment tools. However, limitations included the use of differing instruments to assess pain and depression across cohorts and lack of inclusion of other symptoms such as sleep, nausea and vomiting, and anorexia, which may have confounding associations with fatigue, pain and depressive symptoms.

Study commentaryBy Kathryn Ducharlet Nephrologist and palliative care physician, St Vincent’s Hospital Melbourne

IN THE literature, symptoms in both advanced kidney disease and advanced cancer have been shown as highly prevalent and often multifactorial in aetiology and nature. Jhamb and colleagues have successfully shown this by describing a

When considering symptom management in clinical practice, symptoms are often variably identified and addressed by oncologists, nephrologists, palliative medicine specialists, general practitioners and allied health professionals depending on clinical experience, resources, relationships and health care systems. This was reflected in the paper’s discussion when describing that despite high incidence of pain, less than half of the ESKD and cancer patients reported using analgesia.

Moreover, given the often complex and multidimensional aetiology of these symptoms and limited evidence to manage them it is challenging at times to provide therapeutic strategies to improve them, especially for certain symptoms such as fatigue. Future research focusing on systematic approaches to symptom detection with improved evidence to guide management is required. However, despite the current limitations in clinical practice, it is helpful to consider symptom clusters so symptoms are not addressed in isolation, which could provide therapeutic benefit in a patient-centred approach to care.not) would have important implications for longevity of response.

Nevertheless, this study presents compelling data to support the use of a fan for dyspnoea, representing an important step and therapeutic possibility. The program of work to establish the exact role of the fan – for whom, when, how long and which types of dyspnoea are relieved – must now begin. Perhaps the fan will prove to be a rare phenomenon – an effective therapeutic intervention with few side effects?

References1. ANZDATA Registry. 41st Report. 2018. Australia

and New Zealand Dialysis and Transplant Registry, Adelaide.

2. Australia’s health 2018, in Australia’s health series no. 6. AUS 221. 2018. Australian Institute of Health and Welfare, Canberra.

3. Park J, et al. Obesity paradox in end-stage kidney disease patients. Progress in Cardiovascular Diseases 2014;56(4):415-425.

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‘Did a goals‑of‑care discussion happen? Differences in the occurrence of goals‑of‑care discussions as reported by patients, clinicians, and in the electronic health record’

MethodThe study investigators performed a secondary analysis on data collected from a multicentre cluster-randomised control trial. The original trial investigated whether a communication-priming intervention (Jumpstart Tips) increased the occurrence of GOC discussions, compared with usual care, for patients seen in clinic by both specialists and primary care clinicians.

Potential participants were identified by contacting nurses and doctors working in two large healthcare systems in the American northwest. Clinicians with at least five patients under their care who were eligible for inclusion. Patient aged ≥18 years with either advanced cancer, severe organ dysfunction, significant frailty or comorbidity, plus an estimated median survival of 2 years were invited to participate.

An index clinic appointment was identified prospectively and data was obtained using patient questionnaires, clinician questionnaires and by review of the electronic health records.

Authors: ME Modes, RA Engelberg, L Downey, EL Nielsen, JR Curtis, EK Kross.

Journal of Pain and Symptom Management 2019;57(2):251–259.

Study summaryBy Sachin Nagar Basic physician trainee

BackgroundGoals-of-care (GOC) discussions have been identified as an important component of care for individuals suffering from life-limiting illnesses. Skilfully addressed, these discussions can lead to improved end-of-life outcomes for both patients and their families. However, the perception of whether these discussions have actually occurred can be open to differences in interpretation by both patients and clinicians. This has implications for research, quality improvement and in some health care settings reimbursement related to providing this service.

AimThe study aim was to see if there were discrepancies between patient-reported, clinician-reported and electronic health record documentation of the occurrence of GOC discussions; and to look for possible associations that may predict a discrepancy occurring.

Questionnaires were completed at enrolment and two weeks after the index appointment. Data items included whether the patients and clinicians felt a GOC discussion had occurred at the index visit, but also if a similar discussion had occurred at a previous visit and if the patients felt they received goal-concordant care. The data were coded by forced dichotomous choices using validated questions. Other data points collected included patient and clinician characteristics such as age, gender and ethnicity to identify possible predictors of poor concordance between the three sources of data.

ResultsThe study included a total of 124 clinicians, most of whom were non-Hispanic and white (76.6%), with an approximately equal male-to-female ratio (47% vs 53%). They saw 494 patients with an average age of 75.6 years, of whom 52% were male and 79% were non-Hispanic and white. The most common diagnosis in the cohort was advanced cancer (18%).

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Also, the high comorbidity scores may suggest sicker patients are less likely to remember or participate in goals care discussion and so less report their occurrence.

It is worth considering the generalisa-bility of the findings given the narrow background of the participants, the majority of whom were white. There is also the possibility of recall bias given the two-week period between the index visit and the questionnaires.

Study commentaryBy Derek Eng St John of God Subiaco and Royal Perth Hospital

GOALS OF care (GOC) programs have been gradually introduced around the country since about 2011.1 The GOC discussion and its associated documentation promises improvements in outcomes for patients in their final months of life through a process of facilitated shared-decision making. In operationalising the GOC process in clinical practice, complexity and nuance involved in these discussions becomes apparent to us.2 This study by Modes et al aimed to gauge the quality of GOC discussions by comparing three measures – patient report, clinician report and GOC documentation in the electronic health records – and the association of each measure with patient-reported receipt of goal-concordant care.3

In the study, older adults with serious advanced cancer and non-cancer illnesses were selected and about half of these received the Jumpstart Tips intervention devised by Curtis et al.4 This novel intervention was shown in the original paper to improve the quality of goals of care discussions by using a three-step process. Before their clinic visits, patients received detailed instructions (multimedia) and a questionnaire to stratify them according to their readiness to discuss end-of-life issues. Based on this

information, clinicians were provided with specific communication tips to improve their GOC discussions. Although Modes et al did not specifically identify the Jumpstart Tips patients in their outcomes, they found 48.5% of patients reported receipt of goal concordant care indicating a GOC discussion of significant quality had occurred.

There were other notable findings of clinical relevance from this paper, including: discordance between clinician report and patient report of GOC discussion (one-third of visits); patients who were unprepared or unwell (a high Charlson comorbidity score) may have greater difficulty in understanding and integrating GOC information; the relationship between doctor (GP vs specialist) and patient produced more meaningful GOC discussion; and electronic health records did not reliably document GOC discussions.

This study highlights the importance of preparedness in patients and communication competence of clinicians in producing meaningful GOC outcomes. This is because the GOC discussion is a highly complex shared-decision making discussion.5-6

The challenge for health services and organisations continues to be their willingness to invest widely in evidence-based GOC communication skills education aimed at improving quality of discussions. Orford et al showed meaningful improvements in clinical and patient outcome after clinicians attended a comprehensive two-day workshop incorporating theory and simulation/practice in GOC discussion and documentation.7 For an organisation, putting their clinical staff through this type of training demands significant time and financial resources but the benefits in end-of-life patient-centred outcomes are undeniable.

References for this article appear on page 15.

Complete questionnaires and electronic health record data were present in 356 of the 494 index visits (72%). Of these visits; 52% of patients reported an occurrence of a GOC discussion, compared with 66% of clinicians, while a GOC discussion was documented in the electronic health record in only 42% of visits (P < 0.001). Patients’ and clinicians’ impression of whether a GOC discussion had occurred disagreed at 33% of visits.

Three factors identified by this study that may predict patient/clinician disagreement included: a higher comorbidity score (ß 0.117, 95% CI 0.040 to 0.194, P = 0.003); if the patient reported no previous GOC discussion prior to the index visit (ß 0.444, 95% CI 0.041 to 0.848, P = 0.031); and if the patient was cared for by a specialist rather than a primary care clinician (ß 0.358, 95% CI 0.006 to 0.710, P = 0.046). Of the 236 visits reported by the clinicians as having included a goals-of care discussion, only 38.5% of the notes contained documentation of this discussion.

DiscussionThe authors concluded that discordance is common between clinicians and patients and that it is the impression of a GOC discussion occurring that is most important in determining if the patient feels like their care is goal-concordant. It also highlighted that documentation may not accurately reflect the occurrence of these conversations.

The best way to assess if a GOC discussion occurs may be through direct observation of the interaction but this is often impractical and expensive. However perhaps the most useful measure is what the patient perception. Possible reasons for the higher reporting of these discussions by patient when seen by a primary care clinician versus a specialist may be due to familiarity with patient and the longer relationship between the two. It may also reflect differences in the remit during the visit between primary care clinicians and specialists.

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‘Pre‑emptive prescription of medications for the management of potential, catastrophic events in patients with a terminal illness: A survey of palliative medicine doctors’

Methods The study was conducted by palliative medicine specialists (both adult and paediatric) in Melbourne, Australia. A survey containing both closed and open-ended questions was distributed through Australasian Chapter of Palliative Medicine (AChPM), ANZSPM and the Victorian Palliative Medicine Training Program (VPMTP). The survey was conducted between May 2017 and January 2018, consisted of 20 questions with branch logic to allow additional details depending on respondents’ answers and took approximately 10 – 15 minutes to complete. The survey enquired about personal experience with pre-emptive medication prescription for potential catastrophic events, prescription practices and ethical or other concerns, and results were anonymous and non-identifiable.

Authors: NT Katz, BH Sacks, BH Le, JL Hynson.

Palliative Medicine 2019; 33(2):178–186.

Study summaryBy Glenn Mathieson Advanced Trainee

Introduction A catastrophic event is a term used in palliative medicine to denote an episode that is acute, potentially predictable and probably (but not always) terminal in a person with a known incurable condition. Such events can be often highly distressing to the patient, family/carers and health professionals. As such, doctors sometimes pre-emptively prescribe medications that can be administered in such situations. Such orders are known as ‘catastrophic’ orders – but can also be described as ‘crisis’ or ‘emergency’ orders.

The study authors hypothesised that attitudes and practices in the area vary, and so conducted a study to explore local palliative medicine doctors’ attitudes and practices in pre-emptive medication prescription for management of such potential catastrophic events.

Results 121 surveys were included in data analysis (estimated response rate 22.5% of those then registered with AChPM, with 114 (94.2%) completed in entirety. More than half the surveys were completed by clinicians with at least 10 years of experience in palliative medicine. Most respondents (89.2%) saw only adult patients and many (38.8%) worked across the acute hospital, palliative care unit and community settings.

Significant visible bleeding and severe, acute airway obstruction were almost universally considered catastrophic events (98.3% and 95.0% respectively), although refractory agitation (46.3%) and pain crisis (39.7%) were also considered by many respondents to be considered catastrophic events. Most (61.2%) responding clinicians prescribed such orders at least five times per year.

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Study commentaryBy A/Prof Brian Le Melbourne Health and Victorian Comprehensive Cancer CentreandA/Prof Jenny Hynson Victorian Paediatric Palliative Care Program

THERE ARE a number of clinical practices in palliative medicine that vary from clinician to clinician, and unit to unit. These variances are often as a consequence of the absence of direct evidence to guide definitive practice. These differing approaches to practice often become so entrenched within units, that it sometimes takes new staff entering the service, such as trainee registrars, and early-career consultants to question established practice, to understand why there is such difference across clinicians and settings.

The use of medications for management of potential catastrophic events is one such area of diverse practice. As found in our paper, specific evidence to guide practice is very limited, and largely based on guidelines recommending institution of rapid sedation and amnesia, as well as a potentially more contentious goal of giving staff something meaningful to do in the event of a distressing situation.

We believe that the comparatively high response rate to our voluntary survey (including of ANZSPM members) at

Common ‘standard’ doses reported were 10 mg of morphine and 10 mg of midazolam (although ranges 5 – 20 mg of midazolam and 10 – 38 mg morphine were reported). Medications were most frequently prescribed with the aim to relieve patient distress (92.6%), minimising patient consciousness (46.3%) and providing nursing staff/carers with something to do (37.2%).

Discussion Survey responses supported the hypothesis that approaches and attitudes vary and that this area of practice evokes strong reactions and raises ethical concerns for many clinicians. Written responses indicated concerns over this area of practice, such as warning patients of a possible event that may not happen can cause significant distress, inappropriate use of catastrophic orders and a focus on drawing up medications (leaving patients and their families alone) rather than providing calm, reassuring care in such situations. Other issues identified were ambiguity of language in use of terms such as ‘emergency’, risk of miscommunication and inconsistency of dose, route and interval of administration of medication. This study supports the concern that there is a lack of evidence and standardised approaches to guide practice and training for nursing and medical staff. It also supports the need for good communication in managing such situations which can be distressing for all involved.

22.5%, with 121 surveys completed, reflects potentially the unease that palliative medicine doctors face when in this situation.

We found general concordance around what clinicians regard as a catastrophic event – like significant visible bleeding and severe acute airway obstruction, but less agreement around other situations, such as refractory agitation and pain crises. Furthermore, there was greater discrepancy in how often catastrophic prescribing is undertaken, with greater still variation in how often such an order is used, if at all, and what dose of medication is used, along with varying levels of clinician confidence in this area of practice.

Whilst this study did not seek to evaluate outcomes and/or efficacy, it did provide valuable insight into the attitudes and current clinical practice of palliative medicine doctors. This was an exploratory study, which can be used to assist in development of clinical practice guidelines, and potentially further clinical trials examining the use and outcomes of this practice.

Most of all, this study should serve as a reminder that we all have a role in continually questioning what we think we already know – to confirm or refute the benefit of our treatments. Where definitive guidance may not be possible, even small questions like, ‘Why do we do this?’ can lead to better appreciation of the gaps in our knowledge, and description of our current rationale and where areas of future study may lie.

1 Thomas RL, Zubair MY, Hayes B, Ashby MA. Goals of care: a clinical framework for limitation of medical treatment. MJA 2014;201:452-455.

2 Morgan DJR, Eng D, Higgs D, et al. Advance care planning documentation strategies: goals of care as an alternative to not for resuscitation in medical and oncology patients. A pre-post controlled study on quantifiable outcomes. IMJ 2018;48:1472-1480.

3 Modes ME, Engelberg RA, Downey L, et al. Did a goals of care discussion happen? Differences in the occurrence of goals of care discussions as reported by patients, clinicians, and in the electronic health record. J Pain and Symptom Manage 2019;57(2):251-259.

4 Curtis JR, Downey L, Back AL, et al. Effect of a patient and clinician communication-priming intervention on patient-reported goals-of-care discussions between patients with serious illness and clinicians: a randomized clinical trial. JAMA Intern Med 2018;178:930-940.

5 Elwyn G, Lloyd A, May C, et al. Collaborative deliberation: A model for patient care. Patient Education and Counseling 2014;97:158-164.

6 Fried TR. Shared decision making – finding the sweet spot. N Engl J Med 2016;376(2):104-106.

7 Orford NR, Milnes S, Simpson N, et al. Effect of communication skills training on outcomes in critically ill patients with life-limiting illness referred for intensive care management: a before and after study. BMJ Supportive & Palliative Care 2019;9(1):e21.

Reference list for the Modes, et al. study commentary Continued from page 13

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‘Respiratory failure, noninvasive ventilation and symptom burden: an observational study’

(NYHA), Australia-modified Karnofsky Performance Score (AKPS), Acute Physiologic and Chronic Evaluation (APACHE) and Charlson Comorbidity Score (CCS). Cronbach’s alpha test was then calculated as a measure of the CMSAS’s consistency.

ResultsMean cohort age was 72 years with 64% being female. The most common diagnosis was chronic obstructive airways disease and/or pulmonary oedema of moderate illness severity (APACHE II score 17.6). Baseline characteristics showed averaged symptom scores of mMRC 3 and NYHA 3, with functional measurements of 60 for AKPS and a CCS of 2.

Common reported symptoms were breathlessness, dry mouth, lack of energy, difficulty sleeping and pain. Additional NIV symptoms included cough and sputum production. Psychological symptoms were present in ≥ 50% for all three symptoms screened (worrying, feeling sad, feeling

Authors: TA Smith, JM Ingham, CR Jenkins.

Journal of Pain and Symptom Management 2019;57(2):282-289.

Study summaryBy Calvin Sidhu Respiratory and palliative medicine registrar

IntroductionThis study looked to investigate symptoms in patients admitted for non-invasive ventilation (NIV) for acute hypercapnia. NIV is a treatment usually implemented in those with cardiorespiratory disease, a group likely to have significant pre-existing symptoms.

MethodsThis was a cross-sectional study involving patients with confirmed acute hypercapnic respiratory failure treated with NIV outside the intensive care unit at a tertiary hospital in Australia. Fifty participants were recruited from screening of 237 patients over almost two years (January 2010 to December 2011). Participants were assisted to complete a modified Condensed Memorial Symptom Assessment Scale (CMSAS) for the preceding 72 hours. Additional symptoms deemed relevant in patients utilising NIV were also measured using a similar scoring scale. [The CMSAS has 14 symptom severity questions – 11 physical and 3 psychological, present in the previous 7 days, with a score 0 – 4]. Other measurements collected included: Borg scale, pain scores, modified Medical Research Council Score (mMRC), New York Heart Association

nervous). Mean total CMSAS score was 1.6, with physical symptom score of 1.62 and psychological score of 1.57. Cronbach’s alpha calculation found coefficient of 0.72 for total score, 0.65 for the physical domain but the highest being 0.74 for the psychological domain. Median number of symptoms were 10 (out of 18), and 5 of these scored severe. Mean Borg score was 2.68 and mean pain score was moderate. No significant association was found for CMSAS score with any particular clinical or demographic characteristic.

DiscussionThis study formally documented some expected findings in a cohort of patients treated with NIV, with a large proportion experiencing dyspnea, multifactorial dry mouth and pain, but also highlighted the psychological aspects of worry, sadness and nervousness being prevalent in these patients. The use of the modified CMSAS showed good sensitivity in detecting relevant symptoms and

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Both COPD and heart failure share a poor but uncertain prognosis, with periods of slow decline marked by potentially reversible acute exacerbations. In particular, the development of acute hypercapnic respiratory failure indicates a high 30-day inpatient and 1-year mortality rate. An uncertain trajectory plus a focus on the acute, medically intensive goal of non-invasive ventilation (NIV), means attention to symptom control and the opportunity to introduce palliative care could be missed.

This observational study by Smith et al. highlights the opportunity to refer to palliative care and systematically address symptoms in the acutely hypercapnic patient. The study draws attention to the multiplicity of symptoms affecting the unwell NIV patient, including bothersome dry mouth, insomnia, poor energy and constipation. Symptoms no doubt often missed by the physician focused on breathlessness and acute medical goals.

The study also reflects on the difficulties of using such symptom assessment tools in this unwell population, with almost half the screened patients unable to participate due to being cognitively impaired, too unwell, or non-English speaking.

The study represents an important step in defining the prevalence and severity of symptoms in patients with acute hypercapnic respiratory failure, and begins to validate Condensed Memorial Symptom Assessment Scale ensuring it is practical to administer, accurate and reliable. Future research can then aim to clarify responsiveness to symptom change over time, and to potential interventions.

Strategies can then be robustly assessed to address the complexity of the symptoms in acute hypercapnic respiratory failure from diverse underlying aetiologies. Research opportunities remain to explore the effectiveness of NIV for dyspnoea relief; to determine the safety and use of opioids and benzodiazepine in NIV; and define the role of non-pharmacological

suggests a potential use to provide holistic care for patients requiring NIV plus further championing the early involvement of palliative care in these chronic disease sufferers. However, other symptom assessment scores have not been assessed in a similar setting and the authors remind us that these unwell patients require tools that are not too exhausting and can allow for self-reporting. Another step would be to follow up these patients over time to see what happens to their symptoms. The strengths of this study included its diverse patients, but limitations were its gender disproportionality and solely being English-speakers.

Study commentaryBy Julie McDonald Respiratory and palliative medicine physician, St Vincent’s Hospital Melbourne

THE ROLE of early, integrated palliative care in both heart failure and advanced chronic obstructive pulmonary disease (COPD) is an emerging field, with increasing studies in the last five years supporting this collaborative approach. Studies in both Australia and worldwide have reported outcomes such as decreased breathlessness, decreased depression and anxiety, decreased emergency department presentations, and increased satisfaction.1-3 Despite these positive outcomes, only a small minority meet palliative care in their last year of life, suggesting physicians may need more assistance in recognising triggers for referral.

Patients with advanced COPD and heart failure often have a higher symptom and psychological burden and lower quality of life than patients with advanced lung cancer. Until recently, there has been little light shed on the complexity of symptoms experienced by these two non-malignant cohorts.

interventions such as mindfulness, music therapy and hand-held fans in this cohort.

Research opportunities also remain in defining the timing and impact of palliative care referral. The development of acute hypercapnia may well be a useful opportunity to integrate experts in symptom control, help balance the needs of the patient with the goals of care, and then provide ongoing collaborative care to a group with such an uncertain and guarded prognosis.

References1 Brighton LJ, et al. Holistic services for

people with advanced disease and chronic breathlessness: a systematic review and meta-analysis. Thorax 2018;74:3.

2 Smallwood N. Integrated respiratory and palliative care may improve outcomes in advanced lung disease. ERJ Open Res 2018.

3 Cui X, et al. Collaborative care intervention for patients with chronic heart failure: A systematic review and meta-analysis. Medicine (Baltimore) 2019;98(13):e14867.

CONTRIBUTORS ALWAYS WELCOME

Do you have a bee in your bonnet about a palliative care issue? Have you recently attended a worthwhile conference or workshop? Or perhaps been inspired by an original research paper or book? Whether you are a trainee or a professor, we would love to hear from you!

Email your thoughts to: [email protected]

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As Vast as the WorldA new book for distribution to all ANZSPM membersFrank Brennan, a palliative medicine physician in Sydney, has published a new book. Entitled As Vast as the World, it is a collection of published articles on the response of great writers to illness, death, bereavement and palliative care. Over time, a complimentary copy of the book will be progressively sent out to all ANZSPM members from the ANZSPM head office.

As Vast as the World – synopsisThe experience of illness, death and bereavement are universal ones. Often, we are left silent. How do great writers capture these experiences? What may we, working in this domain, learn from these writers? Drawing on the work of John Keats, Joan Didion, W.B. Yeats, Simone de Beauvoir, Les Murray and others, this collection explores these universal experiences and the wisdom each writer brings to them. With each article, reflections are made on the practice of palliative care. All the articles have been previously published. This includes a series – ‘Poets and Palliative Care’ – that originally appeared in the Journal of Palliative Care.

Annual Renal Supportive Care SymposiumThe Annual Renal Supportive Care Symposium will be held at St George Hospital Sydney on1– 2 August 2019 (Thur & Fri)These two days will canvass multiple topics in renal supportive care including symptom management, advance care planning, moral distress for clinicians, the law and ethics of dialysis withdrawal, indigenous issues and communication skills.

All are most welcome. For registration please contact Elizabeth Josland by email: [email protected]

World Congress on ItchAll ANZSPM members are invited to attend the 10th World Congress on Itch, which will be held in Sydney on17–19 November 2019This conference will include the work of the world’s leading neuroscientists in this area. To help those new to the science of this symptom, a session entitled ‘Itch for beginners’ will be held on the first morning. This will summarise the basic pathophysiology of pruritus and the management of major itch syndromes including uraemic, cholestatic and paraneoplastic pruritus and the pruritus of cutaneous T-cell lymphomas. This is the first time this Congress has been held in Australasia and is an excellent opportunity to gain a greater understanding of pruritus.

Registration and further details can be found at: www.ifsi2019.com.au

ANZSPM Study Day for Trainees and New FellowsThursday, 6 June 2019 Gold Coast University Hospital, QLDTopics include:• Legal aspects of palliative care• Specialist medications in palliative care• Radiation oncology basics• Stereotactic radiotherapy• Dying – It ain’t what it used to be

Program and registration details available from the ANZSPM website www.anzspm.org.au or email [email protected] for more details

www.anzspm.org.au


ANZSPM Aotearoa Annual Education Update 27–29 June 2019, Queenstown NZ27 June: Palliative Medicine Study DayOpen to medical practitioners training or working in palliative care – advance trainees in palliative medicine, candidates undertaking the Clinical Diploma of Palliative Medicine, general practitioners or medical specialists with special interest in palliative care, palliative care medical officers and newly qualified palliative medicine specialists within their first year of vocational registration.

28 – 29 June: Annual Education UpdateTopics include:• Surgery in palliative care• Frailty• Pain medicine and palliative care • Paediatric end of life issues – ethics and bereavement• Rural palliative care – the challenges

ANZSPM Medical & Surgical Update 201925 – 27 July 2019, Melbourne VIC

25 July – pre-meeting workshops• RACP Supervisors Workshop (half day)

• Study Day for Trainees & New Fellows (full day)

26 – 27 July – Medical & Surgical Update• Rural & remote palliative medicine

• Trauma & disaster medicine and end-of-life care

• Addiction and palliative medicine

• Assistance in dying

• Pain – the chronic and the older person interface

• Anti-coagulation in end-of-life care

• Respiratory and palliative medicine

• Dual-trained consultants – paediatric and adult oncology/palliative medicine interface

Visit www.anzspm.org.au/anzspm19 for full program details and to register. Places limited!

Visit the ANZSPM website www.anzspm.org.au for the full program, registration and accommodation information or email: [email protected]

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7th International Congress on Neuropathic Pain9 – 11 May 2019, London, UKwww.iasp-pain.org/Meetings/ EventDetail.aspx?EventID=50087& navItemNumber=592

Australian and New Zealand Society for Geriatric Medicine Annual Scientific Meeting 201913 – 15 May 2019, Adelaidewww.anzsgmconference.org

16th World Congress of the European Association for Palliative Care (EAPC)23 – 25 May 2019, Berlin, Germanywww.eapc-2019.org/home.html

Business for Doctors 201931 May – 2 June 2019, Brisbanewww.eventbrite.com.au/e/ bfd-19-brisbane-tickets-50318991458

ANZSPM Study Day for Trainees and New Fellows

6 June 2019, Gold Coastwww.anzspm.org.au

1st Gold Coast Interventional Palliative Care and Medical Updates Seminar7 – 8 June 2019, Gold Coastwww.eventbrite.com.au/e/1st-gold-coast-interventional-palliative-care-and-medical-updates-seminar-tickets-50048075140

12th International Symposium on Pediatric Pain16 – 20 June 2019, Basel, Switzerlandwww.ispp2019.org/2019.html

2019 MASCC/ISOO Annual Meeting21 – 13 June 2019, San Francisco, USAwww.mascc.org/annual-meeting

ANZSPM Aotearoa Palliative Medicine Study Day

27 June 2019, Queenstownwww.anzspm.org.au

ANZSPM Aotearoa Annual Update28 – 29 June 2019, Queenstownwww.anzspm.org.au


25 July 2019, Melbournewww.anzspm.org.au/anzspm19

ANZSPM Medical and Surgical Update for Palliative Medicine 2019

26 – 27 July 2019, Melbournewww.anzspm.org.au/anzspm19

13th Asia Pacific Hospice Conference 20191 – 4 August 2019, Surabaya, Indonesiawww.aphc2019.org


10 September 2019, Perthhttps://oceanicpallcare.com

Oceanic Palliative Care Conference 2019 (formerly Australian Palliative Care Conference)10 – 13 September 2019, Perthhttps://oceanicpallcare.com

2019 Canadian Hospice Palliative Care Conference19 – 21 September 2019, Ottawa, Canadahttps://conference.chpca.net

6th Public Health Palliative Care International Conference13 – 16 October 2019, Blue Mountains NSWwww.phpci.info/phpc19/

46th Annual Scientific Meeting of the Clinical Oncology Society of Australia (COSA)12 – 14 November 2019, Adelaidehttp://cosa2019.org

AAHPM Annual Assembly 202018 – 21 March 2020, San Diego, USAhttp://aahpm.org/meetings/assembly

IASP 2020 World Congress on Pain4 – 8 August 2020, Amsterdam, the Netherlandswww.iasp-pain.org/amsterdam

23rd International Congress on Palliative Care13 – 16 October 2020, Montreal, Canadahttp://palliativecare.ca

22nd International Conference on Hospice and Palliative Care (ICHPC 2020)2 – 3 December 2020, Sydneyhttps://waset.org/conference/2020/12/ sydney/ichpc

Conferences & events calendar

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www.anzspm.org.auThe Australian and New Zealand Society of Palliative Medicine Inc. ABN 54 931 717 498 PO Box 7001, Watson ACT 2602 T: 0458 203 229 • F: 03 8677 7619 [email protected]

President: Carol DouglasCEO: Simone Carton .......................... @ANZSPMNewsletter Editor: Chi Li ............... @ANZSPMed

Wotso House, Suite 7, Level 5, 490 Northbourne Avenue, Dickson ACT 2602

ContentsSpreading the palliative caremessage to the islands

1Editor’s note 2President’s report

2ANZSPM Aotearoa Branch Chair’s report 3New Chief Executive Offi cer:Simone Carton

4New Operations Manager:Lou Layman

4Workshop report: Spirituality dimensions of palliative care 6ANZSPM-sponsored research

8Focus on delirium in palliative care 1221st International Congress on Palliative Care, Canada 164th Australian Palliative CareResearch Colloquium

17Journal club 18Conferences & events

20

By Amanda LandersPalliative care physicianNurse Maude Hospice, ChristchurchON MONDAY, 24 October 2016, a little group of slightly travel-weary women and one man met together to begin a new adventure on a tropical island. Odette Spruyt (palliative care physician, Peter MacCallum Cancer Centre, Melbourne), Willem Vink (palliative care

nurse practitioner, Christchurch, New Zealand), Miriama Delaibatiki (radiation oncologist, Palmerston North Hospital, New Zealand) and I were tasked by the International Atomic Energy Agency (IAEA) and ANZSPM Aotearoa to begin palliative care education and the

raising of awareness around end-of-life care issues amongst the local health professionals in Fiji. We had fi ve days to engage, network, encourage and

support anyone who wanted to hear our message. Participants came from all over the islands and included doctors, nurses and community workers. A doctor from Papua New Guinea was also supported to attend for the whole week. The fi rst day of the fi ve-day workshop was

dedicated to pain management, opioid availability and symptom control. It became obvious that treating patients at

the end of life was not seen as a priority in this resource-poor environment. We began to weave the theme of attitude-change, communication and

connection throughout the ensuing days. The team encouraged participation from the attendees and we were soon

using copious amounts of Blu-Tack and butcher’s paper, writing up ideas and thoughts from the group. These were

Vol 29 • Issue 1 • March 2017

Continued on page 5

Spreading the palliative care message to the islands

Amanda Landers (right) with two of the workshop participants.

Documents

Vol 31 • Issue 1 • April 2019 Contents A refl ection from