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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Planning care for people with dementia

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Two new resources are now available to help with planning care for people with dementia. Palliverse talked to driving force Prof Meera Agar about the ‘whys’, ‘hows’ and ‘whats’.

Q: Why develop care planning resources just for dementia?

A: People with dementia face unique challenges and decisions related to their care and health care needs as their illness progresses; and supporting their choices is made more complex as they become less able to communicate their needs and articulate decisions about what they want from care. While good intentioned, many health professionals in aged care and other settings may not understand the course of dementia, and there may not always be good communication, involving the person with dementia whenever possible and their families,  and also between the different health professional involved in the persons care.

Q: So how do the new resources help?

A: The two new resources are a website offering practical support for family case conferencing and a report providing guidance on critical recommendations to improve advance care planning. Continue reading

Palace of Care – Parallel Lives

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Cape Reinga the northern-most tip of New Zealand, where the spirits of Maori depart on their final journeys. Photo by Gadfium.

The first time I met the young ladies I had been cross-covering at the hospital, and was taken to see each of them as they both had severe pain and discomfort. They came from completely different backgrounds, had lived completely different lives but somehow ended up on the same journey.

About a week or so later they had both been admitted into our inpatient unit for pain control. Adjustments were made and they became more comfortable, but a few days later pain had returned again, as well as other problems. We had to aim at constantly moving targets, and so it would be over the next three months of their individual roller-coaster rides.

The similarities were startling; the same diagnosis, the same poor response to treatment, and in the end the same prognosis. What was completely different was their individual experiences of the same outcome. Continue reading

Palace of Care/I think therefore I am? – #getjnrbak – Nervous anticipation

Yesterday we were left with a number of questions.

Was Poppa going to be able to hold on?

Was Junior going to be okay during the flight?

What tie should I wear tomorrow?

A nervous night was spent with as many fingers crossed as possible, finger cramps set in disturbing sleep – and that was just me.

The answers to the questions above are contained in the photo below:

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*Updated* 18/05/16 – Palace of Care/I think therefore I am? -#getjnrbak – Extra, extra read all about it! #pallanz

Hi everyone,

Apologies for the late update, I’ve been clinically busy while working the weekend.

We – Palliverse and the family of “Poppa” and “Junior” are still trying to find a way to make their reunion happen.

With the family’s permission here is a photo from yesterday morning’s ward round:

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“Aloha” from Saturday morning from two guys who are fashion-forward? Poppa is trying to hold on for Junior.

The link to Poppa and Junior’s Story was shared through the social media by myself, the Palliverse community and the family.

I was pleasantly surprised that the link to the post appeared as a headline on Friday 13th May’s edition of the #hpmglobal paper.li – Thank you very much Jim Cleary!

I was informed by the family that one of NZ’s national papers had contact them and they were interviewed last night.

This resulted in the following story appearing this morning:

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Snapshot of from the New Zealand Herald website – Click here to read the full story.

I’m checking out a few more traditional media leads in order to spread the word further.

I’m also trying to contact sailing clubs as suggested by others’ helpful comments.

Fingers are still crossed.


Update 18/05/16 1700 NZT:

Poppa is still holding on, but is getting mighty fatigued.

Junior is on the mend which is good to hear.

Since the NZ Herald on Sunday story we have received a number of helpful emails.

Apparently another NZ newspaper has shown interest in running our story.

I’ve emailed a number of NZ radio shows, an Australian newspaper, and whatever else that myself and other people can think of. I’ve started writing a letter to Santa Claus, the tooth fairy and others in the Pantheon.

Received by Palliverse today was an email from one of the major shipping companies with a desire to “try to make it happen.” I have passed on the details to the family to make direct contact.

This is the most promising lead so far.

Fingers crossed to the power of 10! Say your prayers folks.

*Updated* 13/05/16 – Palace of Care/I think therefore I am?: #pallanz Mercy mission #getjnrbak

 

 

Hi everyone,

Situation:  

Poppa is my patient. Grandson “Junior” in Sydney unable to fly back to Auckland because of eye injury. Tearful conversation via internet this morning. Two men heartbroken at the thought that they will never be able to hug each other again.

Background:

Poppa very unwell and worsening rapidly, admitted this morning for hospice care.

Family have tried Cruise lines, Courier companies, travel agents to no avail so far.

Assessment:

Re-uniting Poppa with Junior would provide the greatest comfort.

Recommendation:

Spread the word through all available palliative care networks to see if we can #getjnrbak!

It might have to be via sea because of Junior’s eye injury.

Thanks in advance for your help.

Let’s see if we can provide another example of a real world translation from our Palliative Care virtual community of practice.

Cheers,

James


UPDATE 11/05/16 1700 NZT:

Junior’s medical details were obtained with his permission.

Sean Coleman from Air Ambulance NZ has been very helpful, again – Shipping companies contacted – minimum of 4 day trip by ship.

Freighter Travel company contacted.

Suggestions:  Make-a-Wish foundation could be approached?

Anyone know any super-rich people with a spare super-yacht?


UPDATE 12/05/16 1100 NZT:

Cruise ship company contacted.

No commercial flight options available. Low cabin pressure private jet would cost at least $30000+ one way.

The search continues, people have been leaving suggestions in the comments section, thanks.


UPDATE 12/05/16 1700 NZT:

I made contact with P&O Cruises and they did not have anything available this year.

Junior’s family are also exploring freighter ship options apparently there is a Brisbane to Auckland ship sailing next week. Hamish from Freighter Travel also told me about the same possibility, he was very helpful.

Poppa remains very unwell.

Fingers crossed.


UPDATE 13/05/16 1400 NZT:

No news on the travel front, but Poppa woke up and was comfortable today!

Fingers double crossed that its the start of a trend.