Palliative care and quality of life

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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.

6th International Conference on Advance Care Planning and End of Life Care (ACPEL) in Canada

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Details at a glance:
Event: 6th International Conference on Advance Care Planning and End of Life Care (ACPEL)
Theme: Conversations Matter
Date: September 6-9, 2017
Location: The Banff Center, Banff, Alberta Canada

Webinars for consumers and health professionals on new medical treatment planning and decisions Act in Victoria

If if you live in Victoria you might have to get your head around some new advance care planning legislation which was passed last year and comes into force in March 2018.

Whether you are a consumer, or a health professional, you may be interested in these webinars run by the Cancer Council Victoria and the McCabe centre for law and cancer.

For more details see here

Free webinar on advance care planning in the aged care setting 23 Feb 2017

Palliverse’s very own Dr  Craig Sinclair will be hosting this free webinar for Decision Assist concerning advance care planning in the aged care setting.

“George wants resuscitation”. This webinar explores some of the decision-making dilemmas experienced by aged care staff, health professionals and the clients and families they support.

The webinar will be broadcast live on Thursday 23 February 2017
1.30 pm till 2.15 pm AEDT but can be viewed afterwards.

Register here

Questions? agedcaretraining@austin.org.au

See here for more information

Health Communication: does it always need to have health related outcomes?

Following on from the previous post on the importance of communication in health care – I noted another, slightly different article in the current issue of the Internal Medical Journal “Impact of providing patients with copies of their medical correspondence: a randomised controlled study”.

 

Firstly, its is refreshing to think that simple and practical tools such as this are being examined. As a consumer, I relish tangible information or products, as they provide ongoing reinforcement and guidance. This is especially true in a health setting, where I cherish every physiotherapy exercise sheet given to me – both as a reminder of my condition and a guide to potential improvement.

 

  This trial examined the utility of providing consumers at an endoscopy clinic with written information in the form of clinical correspondence with the GP and procedure report, compared against routine care (no written information). The results demonstrated patient’s really valued the information; with almost all the patient’s wishing to continue receiving correspondence, perceived it improved their understanding of the disease, and slightly improved overall satisfaction. However this didn’t translate to improved health-related outcomes; with no improvement in anxiety or depression levels.

 

  The information we usually provide to our patients is far more complex than an endoscopy report, and patients are often fatigued, distracted by pain and nausea, or may have limited English. Patient information may serve many purposes and provide value to consumers, and plays a particular role as a communique with carers and other health providers who may not receive more formal correspondence in Palliative Care.

 

  We don’t expect patient information to cure anxiety or depression, but can it be a subjective good due to effects in empowering patients and carers? If consumers place value in something I believe it can translate to value to the health system, as only objective goods are stuck under the prime magnet on the fridge door. We may need to revise how we measure this.

 

Matt Grant

How can we improve communication about medical treatment and future care?

How can we improve communication about medical treatment and future care?
The Journal of Clinical Oncology has published a paper about how we can have conversations about treatment decisions better. They found that patient coaching and question prompt lists were effective in improving communication.
Patients who had the one hour coaching session were three times as likely to ask about prognosis…. but discussions about prognosis were still rare and patients were often overly optimistic about their prognosis.
The intervention improved communication between oncologists and patients.

Most patients with advanced cancer say they want honest, sensitive communication about end-of-life issues. These conversations help patients and their families prepare, make informed decisions, and avoid potentially burdensome aggressive medical treatments near death.
Yet, patients are often misinformed about cancer survival and curability.
Those with over-optimistic prognosis estimates are more likely to die in a hospital and receive burdensome aggressive care that does not help the person.

Doctors often do not know their patients’ preferences about end-of-life issues.

The paper suggests that an intervention to improve communication around these issues was partly successful.

Some thoughts on reframing aged care facilities as a ‘hospice’ instead of a ‘home’

Having worked in (what were then referred to as) nursing homes whilst I was training,
I had often wondered about the implications of labels and terminology in the context of an aged care facility. For instance, did working in a nursing ‘home’ somehow diminish, in some eyes, a respect for the clinical skills required and level of care provided in this setting?

One of the most obvious distinctions to me at that time, was that for nurses ‘Betty’ was not a patient. Of course, she had a care plan, but she was a resident among a community of other residents. We espoused healthy ageing, ageing in place, and of course, our nursing care was underpinned by the principles of what we now refer to as a palliative approach.

Residential aged care is no doubt a complex area impacting profoundly on various social and health factors across different levels of our society. What feels like home for some residents, may not feel so homely to others. But how should health care professionals view aged care facilities? And do our Elders receive care appropriate to their needs?

I’m not convinced the answers to these questions are by any means straight forward. But I want to share what I found to be a very interesting and somewhat challenging read from Professors Jane Phillips and David Currow. It can be accessed freely from the journal Collegian here.

What are your thoughts?

Twitter analysis shows increasing awareness of palliative care in the USA

Palliverse is a fan of twitter and social media in general increasing awareness and uptake of palliative care. This analysis of search terms in twitter shows that awareness of palliative care looks to be increasing in the US, compared to in the UK where it is well established.

Internet search query analysis can be used to demonstrate the rapidly increasing public awareness of palliative care in the USA
McLean, S., Lennon, P., Glare, P.
BMJ Support Palliat Care. 2017; 0:bmjspcare-2016-001171v1-bmjspcare-2016-001171.

Abstract

Background

A lack of public awareness of palliative care (PC) has been identified as one of the main barriers to appropriate PC access. Internet search query analysis is a novel methodology, which has been effectively used in surveillance of infectious diseases, and can be used to monitor public awareness of health-related topics.

 

Objectives

We aimed to demonstrate the utility of internet search query analysis to evaluate changes in public awareness of PC in the USA between 2005 and 2015.

Methods Google Trends provides a referenced score for the popularity of a search term, for defined regions over defined time periods. The popularity of the search term ‘palliative care’ was measured monthly between 1/1/2005 and 31/12/2015 in the USA and in the UK.

 

Results

Results were analysed using independent t-tests and joinpoint analysis. The mean monthly popularity of the search term increased between 2008–2009 (p<0.001), 2011–2012 (p<0.001), 2013–2014 (p=0.004) and 2014–2015 (p=0.002) in the USA. Joinpoint analysis was used to evaluate the monthly percentage change (MPC) in the popularity of the search term. In the USA, the MPC increase was 0.6%/month (p<0.05); in the UK the MPC of 0.05% was non-significant.

 

Discussion

Although internet search query surveillance is a novel methodology, it is freely accessible and has significant potential to monitor health-seeking behaviour among the public. PC is rapidly growing in the USA, and the rapidly increasing public awareness of PC as demonstrated in this study, in comparison with the UK, where PC is relatively well established is encouraging in increasingly ensuring appropriate PC access for all.

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 access to Journal of Palliative Medicine

Looking for some holiday reading?

J Pall Med is open access until 23 Jan, check it out!

http://www.liebertpub.com/jpm

You can also sign up for free email briefings to keep your eye on what’s being published in real time

 

Cheers, sonia