More evidence for the benefits in quality of life experienced by those receiving early integrated palliative care – but how do we communicate this to those set to benefit?
This post continues on our theme for this month – palliative care and quality of life. Below, Michael mentioned the mounting compelling evidence we have to show the relationship between these two concepts. Just last week, another quality trial conducted by Temel and colleagues was published in the Journal of Clinical Oncology, again showing improvements in quality of life for patients with incurable lung or non-colorectal GI cancers who received early integrated palliative care alongside their usual oncology care.
So with even more good news (and quality evidence!) about the benefits of palliative care, I find myself reflecting why integrating palliative care in practice remains such an ongoing challenge.
Some of my PhD work has been exploring communication about palliative care and initial perceptions and understandings of palliative care held by patients with advanced cancer and their family carers. Conducting these interviews and having these conversations revealed just how far we have to go to bring patient, carer, and public perceptions in line with the evidence we have for palliative care as quality care.
While our recent focus has perhaps necessarily been on demonstrating effectiveness, now we also need equal focus on how best to communicate the message that palliative care is quality care. Some of my research would suggest our language for talking about palliative care is not always sophisticated – at times overly complex, at times perhaps deliberately ambiguous – and ultimately leaving those who may be otherwise set to benefit from engaging with palliative care early unclear.
This idea is not new – others in the field are, and have been, talking about the need to get our messaging right for some years now. But what should the message be? Whatever approach we take, we need equally compelling evidence that it resonates with those who most require our care.
Are you someone who is looking for a vibrant new or continued career in palliative care research ?
A fulltime Palliative Care Research Assistant position is available in Victoria reporting to the new Chair of Palliative Medicine.
The candidate will join a developing team of researchers associated with the Chair of Palliative Medicine at St Vincent’s Hospital Melbourne & the VCCC. The foci of research of this group are in developing effective and innovative approaches to care provision, communication and engagement with patients, families and the public, and symptom assessment.
If you could only admit one patient to your service today but you have many referrals, which patient would you choose?
Palliative Care is in urgent need of a robust and evidence-based system for triaging referrals in an equitable, efficient and transparent manner. If you are a health professional working primarily in palliative care anywhere in the world with at least two years of experience, we want to know your views!
Palliverse is excited to welcome a Guest Contributor – Molly Williams – who shares with us “Annie’s Story” ahead of our #PALLANZ tweetchat on paedriatic palliative care (#pedpc) this Thursday 30th June at 7pm AEST.
Pictured: Dr Molly Williams
Molly is a paediatric oncologist now in the last 6 months of training in paediatric palliative care. She has a particular interest in supportive care in cancer – the idea of creating a culture of concurrent curative and palliative cancer management & giving kids the best chance of cure while not sacrificing their quality of life fills her with enthusiasm & glee! She has a personal fascination with positive psychology and creative anachronisms, and makes her own beer, cheese and tonic water!
This month, we are excited to explore how palliative care can help to support young people in our community living with serious illness! Our upcoming #PALLANZ tweetchat to be held at 7pm (AEST) on Thursday 30th June will discuss topics related to the palliative care needs of children and adolescents and their families. We will also be featuring some guest blogs from new Palliverse Contributors working with young people in Paediatric Palliative Care (#pedpc).
During our #PALLANZ tweetchat, we hope to bring together those interested to talk about how a kid’s #pedpc service can help young people with serious illness to live well; when a young person might meet the #pedpc team; and where they might like to receive care. We’ll also imagine we have a magic wand able to do anything we want to improve the available supports and share these ideas and other helpful resources!
Ed: Have you been thinking about whether an advance care plan is something you should get around to doing? Perhaps you’re unsure about why it matters? Here, drawing on his caring experience and expertise as a registered Justice of the Peace, Palliverse Contributor Glen Davis muses about the relevance of advance care plans for us all.
If you live in Victoria and would like to know more about advance care plans, The McCabe Centre for Law and Cancer is hosting a community Q&A panel on advance care planning for patients living with serious illnesses at the Wheeler Centre in Melbourne tomorrow – Thursday 19 May from 6:00 pm – 7:30 pm. You can still register for this public forum aimed at providing patients, carers and community members a better understanding of how advance care planning can support better decision-making at the end-of-life.
We have the option to make plans that guide or direct the decisions made about our health care in the event we are unable in future to make those decisions for ourselves.
Notice this is an option and not an obligation. You do not have to make a plan and it is an offence for somebody to force you to.
First, a few terms. “Advance Care Planning” is the process of consultation, research and decision about what health care decisions are important to you. “Advance Care Directive” is the document recording your decisions.
In line with our #PALLANZ Tweetchat, this month Palliverse takes a special focus on Carers. As part of this, we are pleased to welcome a new contributor to Palliverse, Glen Davis. Glen lives in regional Victoria. He is husband, advocate, and principal carer for his wife, Carole, now in the final stage of dementia. He also is father to 3 children, and has 5 grandkids.
I was fortunate to connect with Glen when he contacted us to contribute his thoughts to tomorrow’s Tweetchat. For me, Glen’s story powerfully resonates many feelings and realities experienced by carers in our community. He shares with us several resources he’s discovered that have been personally influential. Although Glen believes the palliative care community understands carers better than most medical disciplines, his story highlights the many gaps that exist in the way our carers are supported.
Who do you care for and how did you come to be a carer?
I am the principal carer for my wife, Carole. I retired from my work earlier than planned because Carole was needing more help at home. Her symptoms then were anxiety, discontent and some trouble finding her words. Spending more time with her, I soon learned there were some tasks she could no longer do. She had been a crack typist and that had gone. Her sister and brother-in-law (a nurse and a doctor) noticed symptoms they likened to Alzheimer’s disease, so we started investigating intensively. It took over a year before, in 2011, we reached a diagnosis of fronto temporal dementia. That is a degenerative disease in which cognition, speech and eventually mobility decline progressively as a result of shrinking of the brain. It is a fatal disease with no cure.
‘Carers’ are those of us in our community providing informal, unpaid care to someone living with serious illness, disability, mental illness or frailty. Carers play an indispensable role in providing palliative care in our community.
Are you currently working in the palliative care sector in Victoria?
One of colleagues in the Palliverse has been working hard to ensure Aboriginal and Torres Strait Islander people receive quality end of life care. Steve Kirkbright is a Project Officer for The Victorian Aboriginal Palliative Care Collaborative (VAPCC). He’s seeking people working in the palliative care sector in Victoria to participate in a brief, online survey. You’ll find more details and a link below.
If you’re also conducting research and would like to share it with us, please get in touch via @palliverse or firstname.lastname@example.org.
Pictured: Palliative care resources available from VACCHO