Palliative Care & Quality of Life

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.

Anna Collins

@annalcollins

Early palliative care – when should quality care start?

We have been talking about quality care at Palliverse this month a topic that has a lot of relevance to early palliative care.  The WHO talks about early palliative care as meaning care that is offered at the time of a life-limiting diagnosis.  In practice palliative care is often offered much later, and some have suggested that this means that real benefits are missed for many people.
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Improving community access for end of life care medications at home in South Australia

Difficulties accessing medications which carers need to look after someone dying at home can mean that the person needs to be sent in by ambulance to hospital to die. Having been on the hospital end of this transaction many times, I know how sad it is for the patient and family when something as simple as access to medicines gets in the way of care at home.

A study carried out by Paul Tait and a team from South Australia has shown that the proportion of community pharmacies stocking a list of medications needed for end of life care at home has nearly tripled from 2012 to 2015.

Significantly more SA community pharmacies carried all five core medicines following the delivery of a range of multidisciplinary education strategies.
This indicates that the likelihood of South Australians being able to access items from the List through community pharmacies in 2015 has significantly improved.

They concluded that “These results suggest that there is value in developing and promoting a standardised list of medicines, ensuring that community palliative patients have timely access to medicines in the terminal phase.”

Tait P, et al. BMJ Supportive & Palliative Care 2017;0:1–8. doi:10.1136/bmjspcare-2016-001191

https://www.ncbi.nlm.nih.gov/pubmed/28167655

 

New Job Opportunity for Palliative Care Researcher

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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.

For more information, you can read more about the job here.

Raise awareness for World #Delirium Day 15 March 2017

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Delirium is a favourite topic of ours at Palliverse – it is experienced by many people with palliative care needs, including at the end of life, and is often distressing to the person, their loved ones and health professionals providing care. Despite this, it remains poorly recognised, underdiagnosed and poorly treated – not least because the evidence base is still growing.

iDelirium, a federation of the Australasian Delirium Association, European Delirium Association and American Delirium Association, has launched World Delirium Day (#WDD2017) in an attempt to raise awareness of delirium and improve its management.

They have suggested some Actions to Take on #WDD2017. I’ve listed them below & with some thoughts on how to take action.

  • Commit to using the term ‘delirium’

If you hear someone using terms like “agitated”, “restless”, “aggressive” or “pleasantly confused”, think – could this be delirium? I use the term delirium, document it and make sure it’s communicated in the medical record and letters. Recognising and diagnosing delirium allows us to educate patients and their loved ones, as well as providing the best delirium care possible.

  • Screen your patients for delirium

People at risk of delirium, who should be screened, include those with serious illness, those aged over 65 years and those with underlying cognitive impairment. This includes many of the people cared for by palliative care services! The diagnosis of delirium may be missed, delayed or misdiagnosed without screening, as signs may be subtle (especially in hypoactive delirium).  There are multiple simple bedside screening tests for delirium, and although not all these have been validated in the specialist palliative care setting, they are still useful. The 4AT is a freely available screening tool that can be administered by any health professional and does not require training.

  • Listen to patient and family stories about the experience of delirium

What may seem “pleasantly confused” to staff members can be very distressing for the delirious person and their families. Being agitated, aggressive or “just not themselves” can be distressing for patients and families to witness – it is important to acknowledge these emotions and provide education about delirium. (See “Michael’s Story: the fear on his face was palpable” for a wife’s experience of her husband’s undiagnosed delirium.)

  • Engage your leadership in a discussion of delirium

If the above isn’t enough to convince your leadership to take note, delirium also increases the risk of health care complications like falls, pressure injuries, prolonged length of stay, and mortality. For those in Australia, World Delirium Day is a great time to introduce your leadership to the recently released Delirium Clinical Care Standard (which we’ve covered here before).

  • Educate health professionals about delirium

Delirium does not “belong” to just one group of health professionals or one specialty. It’s common, especially in palliative care, and important for us all to know about it.  Some of my favourite educational resources are freely available at the Scottish Delirium Association, plus this 5-minute video from UK-based  Delirium Champion Dr MS Krishnan. (I’ve shared this before but it’s worth sharing again!)

As a final bid to raise awareness, you can participate in a #WDD2017 Thunderclap via your Facebook, Twitter or Tumblr account, to alert your friends and followers to the importance of delirium.

Early Career Researcher Network (PC4) applications open

PC4 is the Primary Care Collaborative Cancer Clinical Trials Group, funded by Cancer Australia. They are a national research body focusing on cancer and palliative care in the primary care setting.

PC4 is establishing a Early Career Researcher (ECR) Network, with the aim to provide mentoring, involvement with large scale research, networking and professional development. The network is open to clinicians and researchers with an interest in cancer and palliative care in primary settings, who are beginning their careers in research.

Further information and application form are available online at http://pc4tg.com.au/resources/early-career-researcher-network/

Matt Grant

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