Funeral services in Australia: Moves toward greater clarity at a time of great vulnerability

When you think about funerals, what is the first thing that comes to mind?

It may be a favourite scene from ‘Six Feet Under’ – the cult TV drama series depicting a family-run funeral home in Los Angeles. Or, it might be an iconic image of those prominent funeral companies that can seem to dominate the industry. If, however, you are currently in the throes of organising a funeral – chances are you may not really know what to think, or where to go in terms of navigating this very difficult passage of time.

As a social worker or nurse working in palliative care, you may be unsure of what resources are available to help support families’ decision making during a time of mourning. That’s where a novel funeral home comparison site can be of great assistance – you may find what you are looking for Gathered Here.

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I think therefore I am? – A definition of Grace

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http://www.flickr.com/photos/144232185@N03/30117339256″>PARMIGIANINO,1534-35 – Deux Canéphores se donnant la Main (Louvre INV6466)

In healthcare it is important to set clear boundaries in order to care for yourself and your patients in a sustainable fashion. In the practice of palliative care, boundary setting is even more important, as the therapeutic relationship can be very intense and intimate at times. We have to keep in mind that this relationship will likely end soon, with the death of our patient. It can be a difficult balancing act; using your humanity to make important connections with another human being; while at the same time keeping professional distance to protect the both of you.

That being said, it is inevitable that there will be some cases which will hit you harder than others. When a deeper connection has been made, you will feel the loss and grief much more strongly. Informal reflection with your team members and professional supervision have an important role to play in keeping us palliative care providers safe to continue doing the important job that we have to do. We need to remind ourselves that this is a job that not everyone in healthcare can handle. That those of us who chose to work in palliative care, owe it to ourselves and our patients to look after ourselves. We are a precious resource and if we do not take care of ourselves, we will deny our patients and their families the difference that we can make in their lives, and deaths.

After almost ten years of working exclusively in full-time palliative care practice I would like to share a case that reminded me of just how human I am, and how much value I obtain from professional supervision and from sharing with my team members.

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Palace of Care – Living every moment

Living every moment when you’re dying

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In New Zealand last week we celebrated Hospice Awareness Weak and to tell you the truth I’m not sure how impactful the week actually was. Continue reading

Advance care directives, palliative care, and euthanasia

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[Image by Nick Youngson]

Why do palliative care people bang on about advance care planning all the time?

Well, when you break it all down, advance care planning is all about respect. Respecting the values, goals and preferences of the person making the plan. And palliative care is really big on respecting people’s preferences and values, especially when it comes to their end-of-life care.

Unfortunately, when it comes to respecting people’s choices around their health care, the law has been lagging behind. Existing laws around advance care plans and medical decision making are often confusing for patients and families, as well as their treating clinicians. Fortunately, this is all about to change in Victoria.  Continue reading

Palace of Care – “Thank you for teaching me an important lesson.”

This blogpost is dedicated to a patient that I never thanked for the part she had to play in my palliative care education.

The sharing of patient stories can have a huge role to play in the education of healthcare practitioners and laypeople. Palliative Care health literacy remains relatively low despite palliative care services having been present in Australia and New Zealand for well over three decades. Relatively few healthcare practitioners let alone members of the general public understand the role that palliative care services can have in the improvement of quality of life. Are we sharing the right stories, in the right places, to the right people?

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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.

Journal club on delirium #hpmjc

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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!

 

#ANZSPM16 tweet chat: Medicinal cannabis and palliative care

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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

From Foundation to Future: Palliative Care Nurses Australia (PCNA) 6th Biennial Conference, 11-12 September 2016: Hotel Realm, Canberra.

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Calling all nurses… Next month PCNA will celebrate more than a decade of progress towards its vision of excellence in palliative care nursing.

DID YOU play a part in establishing the foundation for this progress?

DO YOU want to contribute to future progress towards this vision?

ARE YOU just curious to check out the latest advances in palliative care nursing?

Whether you’re in Canberra, Cooma, Clayfield, Carlton, or Christchurch—this conference is your opportunity to meet and mingle with experts in your field, as well as catch up with old colleagues or make new friends and professional connections.

In this post we give an overview of the conference program and keynote speakers presenting at what promises to be an outstanding conference, not to be missed!

#PCNAust16 by @PCNAust

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Palace of Care / I think therefore I am? #gotjnrbak The final update.

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What would happen after the joyous reunion of Poppa and Junior? This was a question asked at our multidisciplinary meeting two and a half months ago. From the accumulated experience of our staff members we thought it could go either of two ways:

  1. Poppa might get a “boost” from being reunited with Junior and other family members, and might improve.
  2. Poppa had used what was left of his energy holding on to see Junior and would continue to deteriorate.

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