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

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.