Palliative care and quality of life

bench

The World Health Organization (WHO) defines health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity”. The goal of health care is therefore not just to treat disease and extend quantity of life, but to also promote overall wellbeing and enhance quality of life.

But what exactly is quality of life?

According to the WHO, quality of life is “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”. It is affected by their “physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment”.

A bit of a mouthful for sure. But the bottom line here is that while a person’s quality of life is affected by their health, it is about more than just their health. A person’s quality of life depends on what is important to them, where they have come from, and where they are going. In other words: what constitutes quality of life for an individual is defined by who they are.

What does all of this have to do with palliative care?

Palliative care is all about quality of life. Back to the WHO: “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness”.

For many people, quality of life is just as important as quantity of life. For some, quality is more important quantity – particularly if their quantity of life is limited by incurable and/or life-threatening illnesses.

How does palliative care improve a person’s quality of life? The WHO definition suggests that it does so “through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

However, the prevention and relief of suffering is merely the opening gambit of the palliative care approach. Alleviating suffering is a prerequisite to improving quality of life, but it is not sufficient on its own. In order to help patients and families live as well as possible, palliative care must also promote psychological, social and spiritual wellbeing.

This is only possible if palliative care clinicians are more than symptomologists or scientists-technicians. They must also be brave witnesses and loyal companions. “Don’t just do something, stand there.” And listen, with our hearts as well as our brains, as fellow human beings, sharing the human condition, travelling together along the journey of life.

To summarise: palliative care starts by seeking to find out what is the cause of a person’s suffering, but goes beyond this by striving to know who is the person suffering, in order to ultimately discover how to improve their quality of life, and help them to live as well as possible.

Journal club on delirium #hpmjc

hpmjc

Delirium is a syndrome associated with a sudden change in a person’s mental function that interferes with their thinking and awareness. It is a common problem that confronts many patients, families and clinicians in the palliative care setting. Delirium usually develops as a result of a serious medical condition, which can often be found and treated. However, the symptoms of delirium – such as fluctuating confusion, reduced attention, disturbed sleep-wake cycle, and/or hallucinations – can be very distressing for everyone involved, and may persist for many days to weeks.

Medications – including antipsychotics such as haloperidol and risperidone – are often used to manage the symptoms of delirium. But do they actually work?

To answer this question, Professor Meera Agar (@meera_agar) and colleagues from the Palliative Care Clinical Studies Collaborative (PaCCSC) conducted a study examining the use of these medications. The results of their research was published in JAMA Internal Medicine recently, and also discussed on various media platforms (examples here, here and here).

Please join Hospice and Palliative Medicine Journal Club (#hpmjc) in January 2017 for an in-depth discussion about this important study. The journal club will be hosted by Chi Li (@Dr_Chi_Li) from Palliverse and feature the paper’s first author, Meera Agar (@meera_agar)!

When? The hour-long online journal club will start at (please note the different dates):

  • Auckland: 9am, Tuesday 24th January
  • Sydney: 7am, Tuesday 24th January
  • London: 8pm, Monday 23rd January
  • New York / Toronto: 3pm, Monday 23rd January
  • Other cities

Who? Anyone and everyone who has:

  • Experienced delirium themselves
  • Cared for or lived with someone with delirium
  • An interest in improving the treatment of delirium
  • An interest in enhancing palliative care

How? It’s easy!

What? We will be discussing the following topics during the journal club

  • Topic 1: Why was the study conducted? Are the study questions / aims relevant to you and/or your work?
  • Topic 2: How was the study conducted? What did you like about the study methodology? Would you have done anything differently?
  • Topic 3: What were the main findings from the study? Were you surprised by any of the study results?
  • Topic 4: Has this study changed the way you think about delirium in the palliative care setting? Why and why not? What’s next?

If you would like more information, or are having trouble accessing the paper, please feel free to contact us via Twitter (@Dr_Chi_Li or @palliverse) or by email (chi.li.australia@gmail.com or palliverse@gmail.com).

We hope you can join us for a great discussion about this important study!

 

free Australian webinars on advance care planning and palliative care

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Decision Assist is running a series of free webinars on advance care planning and palliative care.

For those of you new to webinars, you can watch the presentation live on the internet and interact with the presenters, or just watch the presentation later. Some health services and aged care facilities are watching them together as part of their continuing professional development or education programs.

Here is a link to register. The next one is presented by Ilsa Hampton, CEO, Meaningful Ageing Australia

Decision Assist Aged Care Webinar Series – Grief, trauma and loss
Tuesday 6 December 2016 | 1.30 pm – 2.15 pm AEDT

http://www.webcasts.com.au/decisionassist061216/

Regards, Sonia (who also works for Decision Assist!)

 

Calling palliative care health professionals for online research experiment – now open worldwide!

If you could only admit one patient to your service today but you have many referrals, which patient would you choose?

FloorBoss XL™ Free-Standing Sign - High-Impact Plastic 25in.H x 12in.W

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!

Please take part in this world-first online experiment at  www.tinyurl.com/palliativetriage or for more information contact Dr Beth Russell by email beth.russell@svha.org.au or twitter @DrBethRussell

#4APCRC: 4th Australian Palliative Care Research Colloquium

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Members of team Palliverse had the pleasure of attending the 4th Australian Palliative Care Research Colloquium between October 27-28th, which was once again held in the comfortable surroundings of the Rendezvous Hotel in Melbourne, Victoria.  Continue reading

THE 5TH VITAL SIGN: PREVENTION AND MANAGEMENT OF ACUTE AND CHRONIC PAIN WORKSHOP

Palliative doctors and trainees and those interested in pain management might want to check out the upcoming pain management workshop at the shiny new Victorian Comprehensive Cancer Centre.

“This workshop is ideally suited to general practitioners, perioperative physicians, anaesthetists and pain specialists who seek an update on evidence-based management of acute pain in the perioperative setting. We will also highlight the latest research aimed at reducing the transition of acute pain to subacute and chronic pain and its associated morbidity.”

For more information see here 

Saturday, November 12th 2016

Peter MacCallum Cancer Centre,
Victorian Comprehensive Cancer Centre,
Melbourne

#ANZSPM16 tweet chat: Medicinal cannabis and palliative care

anzspm16_medicinal_cannabis

In recent years scientific research into the effects of cannabinoids has been on the increase. Some would say that not-so-scientific research on the effects of cannabis has been underway for many hundreds of years, in many different countries and cultures.

Until recently I didn’t know that our own bodies produce endogenous cannabinoids, the various effects of which are still being studied. 

Two years ago, colleagues had informed me that at the Montreal Conference 2015 it was a ‘smokingly hot’ topic. The most widely studied cannabis-derived cannabinoids are Cannabidiol (CBD) and Tetrahydrocannabinol (THC.) You may have heard of some of the medications that have ‘come to market’ since then:  Continue reading

I think therefore I am/Palace of Care – Hospice New Zealand 2016 Conference Keynote Presentation

Hi everyone,

Here is a copy of my slides from the Keynote presentation that I made on 16/09/16 at the Hospice New Zealand 2016 Conference.

I was intentionally being provocative and I was purposefully trying to challenge the audience’s mindset with the material that I presented, as I believe that New Zealand Hospice/Palliative Care needs to be “shaken up,” if it is to remain relevant. Now it’s your turn, you have been warned…

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I am working on a version which will have clickable links, and also on a recorded live performance of the presentation. In the meantime the slides with comments have been loaded onto the Palliverse Instagram account.

Cheers,

James

#ANZSPM16 Wrap up

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Days two and three of the Australian and New Zealand Society of Palliative Medicine (ANZSPM) 2016 Conference: The Changing Landscape of Palliative Care was just as brilliant as the first. The plenary sessions featured:

  • Merryn Gott (@MerrynGott) spoke about the ‘last taboo’ in our community: the invisible and sometimes unexpected costs of providing care at the end of life, which are often not explored in clinical and almost never measured in policymaking and research. She also discussed  the impact of culture, ethnicity and gender on who is bearing these financial and non-financial costs. To find our more, read her open access @PalliativeMedJ article here.
  • Meera Agar (@meera_agar) discussed the growing evidence base around delirium care in the palliative care setting. Management of this complex, distressing, life-threatening, but often reversible syndrome is challenging. Non-pharmacological strategies and a system-wide approach to organizing and delivering care are crucial, as research into various drug treatments continue to demonstrate a lack of clear benefit and the potential for harm. Meera recommends iDelirium for more information about this important area of palliative care.
  • Pippa Hawley reflected on the lack of evidence around the use of medicinal cannabis – despite the immense interest from (and considerable experience of) our communities. How should clinicians respond while the scientific and legal issues are sorted out? Ask questions, keep an open mind & work with our patients!
  • Douglas McGregor explored the interface between heart failure and palliative care. He referenced Sarah Goodlin’s open access article, Merryn Gott’s study while discussing prognostic uncertainty and clinician paralysis; and observed that most guidelines still see palliative care as relevant only at the very end of life, rather than a key component of chronic disease management. Amy Gadaud’s (@agadoudreview was flagged as a good place to start when considering issues around early integration.
  • Sam Bloore stimulated and inspired delegates with his fascinating talk about dying well in a culture of bitcoin and botox. How can palliative care adapt, survive and thrive in this changing cultural landscape characterized by information overload, mindless distraction and incoherence? We must remain a “subversive” counterculture and continue to strive towards caring deeply and meaningfully!

In addition to these amazing plenaries, fully (and at times even over-)subscribed workshops on the overlap between palliative care and addiction medicine / chronic pain, aged care, literature and the arts were held, alongside numerous excellent oral and poster presentations from specialists and trainees. The enthusiastic and well-informed audience present during all of the sessions was another highlight for me (and I’m sure all of the other speakers and delegates)!

It’s been a wonderful few days in Perth. A big thank you to the Conference organizing committee, chaired by Derek Eng (@dr_engd), for inviting team @Palliverse to be part of this great event. Thanks also to all of you for engaging with #ANZSPM16 on social media. Keep an eye out for our upcoming tweet chats, during which we will continue the conversation about the changing landscape of palliative care!

 

Highlights from #ANZSPM16 pre-conference workshops

The Australian and New Zealand Society of Palliative Medicine (ANZSPM) 2016 Conference opens today. A number of excellent pre-conference workshops were held yesterday, including:

  • A comprehensive trainee day, including a great workshop from Katrina Anderson on self-care and reflection about love, strength, vulnerability and respect; the use of methadone (Pippa Hawley); the challenges of providing palliative care in residential aged care facilities (Douglas McGregor), patients and families with vulnerable personalities (David Kissane), and the neuroanatomy of distress (Lisa Miller)
  • A great presentation on the role of media in palliative care, followed by a hands-on workshop in the afternoon, under the encouraging guidance of Marie Mills; and
  • Supervisor workshop, lead by Michelle Gold and Brian Le

Team Palliverse will be broadcasting from the #ANZSPM16 Conference for the next three days. If you are at the conference, please come and say g’day – and recharge your devices – at the social media hub!