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

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!

 

#4APCRC: 4th Australian Palliative Care Research Colloquium

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Members of team Palliverse had the pleasure of attending the 4th Australian Palliative Care Research Colloquium between October 27-28th, which was once again held in the comfortable surroundings of the Rendezvous Hotel in Melbourne, Victoria.  Continue reading

Art therapy for the palliative care clinician

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I had wanted to learn to paint for many years, and finally found the time to take some classes during my research fellowship year. It was really good fun and I loved it. Unfortunately, my fellowship year soon finished and clinical commitments meant I could no longer attend the classes.

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Nevertheless, I decided that I would keep painting, once a week (usually on a Wednesday), just for me. At the end of a busy day, it’s often easier to just slump on the couch and watch some TV. I’ll be honest, sometimes the couch wins. However, I do manage to drag myself out of the house again most Wednesdays, get myself down to the studio for a couple of ours of what I fancifully call my ‘art therapy’ before bed. And when I do, I never regret it.

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As you can see, I’m just a beginner and still have a lot to learn about painting. But I love losing myself in the work, just thinking about form and colour – anything other than patients and families and suffering and medicine, or audits or guidelines or research or presentations. I also love heading out and painting outdoors when I can get away.

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If you also like painting, or any other form of art – please join us for #PallANZ tweet chat on the 29th, which will be on the topic of “palliative care and the arts”! You can find the details here.

#ANZSPM16 Wrap up

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Days two and three of the Australian and New Zealand Society of Palliative Medicine (ANZSPM) 2016 Conference: The Changing Landscape of Palliative Care was just as brilliant as the first. The plenary sessions featured:

  • Merryn Gott (@MerrynGott) spoke about the ‘last taboo’ in our community: the invisible and sometimes unexpected costs of providing care at the end of life, which are often not explored in clinical and almost never measured in policymaking and research. She also discussed  the impact of culture, ethnicity and gender on who is bearing these financial and non-financial costs. To find our more, read her open access @PalliativeMedJ article here.
  • Meera Agar (@meera_agar) discussed the growing evidence base around delirium care in the palliative care setting. Management of this complex, distressing, life-threatening, but often reversible syndrome is challenging. Non-pharmacological strategies and a system-wide approach to organizing and delivering care are crucial, as research into various drug treatments continue to demonstrate a lack of clear benefit and the potential for harm. Meera recommends iDelirium for more information about this important area of palliative care.
  • Pippa Hawley reflected on the lack of evidence around the use of medicinal cannabis – despite the immense interest from (and considerable experience of) our communities. How should clinicians respond while the scientific and legal issues are sorted out? Ask questions, keep an open mind & work with our patients!
  • Douglas McGregor explored the interface between heart failure and palliative care. He referenced Sarah Goodlin’s open access article, Merryn Gott’s study while discussing prognostic uncertainty and clinician paralysis; and observed that most guidelines still see palliative care as relevant only at the very end of life, rather than a key component of chronic disease management. Amy Gadaud’s (@agadoudreview was flagged as a good place to start when considering issues around early integration.
  • Sam Bloore stimulated and inspired delegates with his fascinating talk about dying well in a culture of bitcoin and botox. How can palliative care adapt, survive and thrive in this changing cultural landscape characterized by information overload, mindless distraction and incoherence? We must remain a “subversive” counterculture and continue to strive towards caring deeply and meaningfully!

In addition to these amazing plenaries, fully (and at times even over-)subscribed workshops on the overlap between palliative care and addiction medicine / chronic pain, aged care, literature and the arts were held, alongside numerous excellent oral and poster presentations from specialists and trainees. The enthusiastic and well-informed audience present during all of the sessions was another highlight for me (and I’m sure all of the other speakers and delegates)!

It’s been a wonderful few days in Perth. A big thank you to the Conference organizing committee, chaired by Derek Eng (@dr_engd), for inviting team @Palliverse to be part of this great event. Thanks also to all of you for engaging with #ANZSPM16 on social media. Keep an eye out for our upcoming tweet chats, during which we will continue the conversation about the changing landscape of palliative care!

 

Highlights from #ANZSPM16 pre-conference workshops

The Australian and New Zealand Society of Palliative Medicine (ANZSPM) 2016 Conference opens today. A number of excellent pre-conference workshops were held yesterday, including:

  • A comprehensive trainee day, including a great workshop from Katrina Anderson on self-care and reflection about love, strength, vulnerability and respect; the use of methadone (Pippa Hawley); the challenges of providing palliative care in residential aged care facilities (Douglas McGregor), patients and families with vulnerable personalities (David Kissane), and the neuroanatomy of distress (Lisa Miller)
  • A great presentation on the role of media in palliative care, followed by a hands-on workshop in the afternoon, under the encouraging guidance of Marie Mills; and
  • Supervisor workshop, lead by Michelle Gold and Brian Le

Team Palliverse will be broadcasting from the #ANZSPM16 Conference for the next three days. If you are at the conference, please come and say g’day – and recharge your devices – at the social media hub!

Room for reflection #ANZSPM16

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Nothing will sustain you more potently than the power to recognise in your humdrum routine, as perhaps it may be thought, the true poetry of life – the poetry of the commonplace, of the plain, toil-worn woman, with their loves and their joys, their sorrows and their griefs.

– Sir William Osler

In order to enrich the conference theme of honouring the art of palliative medicine, the conference organisers at the upcoming Australian and New Zealand Society of Palliative Medicine (ANSZPM) 2016 Conference in Perth, Western Australia have created a specific room for self reflection.

The Reflection Room will provide a nurturing space for conference participants to consider the human connection that we all experience as palliative care clinicians, and the impact this has on our own personal growth. The room will contain powerful art pieces that depict resilience in the face of dying, which aim to help delegates reflect on their experiences over the course of the conference, undertake guided mindfulness, or most importantly, just be.

Have you been to another conference recently where self-reflection, mindfulness and art featured strongly in the program? Was there space set aside for delegates to practice these activities amidst all the hustle and bustle of the conference program? Was it useful for you?

 

Victorian Cancer Agency funding opportunities

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The 2016 Victorian Cancer Agency funding round is currently open, with a number of schemes available that may be of interest to palliative care researchers:

  • Translational research projects
  • Clinical research fellowships
  • Mid-career research fellowships
  • Early career seed grants
  • Supportive care scholarships (at the Olivia Newton-John Cancer Wellness and Research Centre)

Most of the applications close in August.

 

Spirituality and self care in palliative care practice

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Photo by Miran Rijavec via flickr

Dr David Brumley is a palliative care specialist with extensive experience working in regional Victoria and across South East Asia. Here he reflects on the importance of spirituality and self care in palliative care practice.

Dr Doug Bridge ran a Spirituality Workshop last September in Melbourne, as part of the 2015 Palliative Care Australia conference. To my knowledge this was the first such workshop associated with a palliative care conference – in Australia, at least. Unsurprisingly, it was very well received. Thanks Doug.

The existence of Spirit and the possibility of spiritual distress and suffering seems unarguable. If spirituality is the ground of our being, spiritual suffering could be seen as our alienation from that.  With variations, many definitions observe the four aspects of spirituality to include relationship with self, others, environment and the transcendent. Such descriptions might allow acceptance by both the religious and atheist. The literature refers to many ways to measure these aspects of spirituality. For example, John Fisher developed SHALOM, a questionnaire that examines these four areas. We applied this questionnaire to members of the Australian and New Zealand Society of Palliative Medicine (ANZSPM) in 2007-8. Many surveyed doctors didn’t feel they had the capacity to help patients in the domains of spirit.

Dying people suffer spiritual distress, and doctors might sometimes be best placed to identify and provide, at the least, initial help. Our own spiritual wellbeing is also needed if we are to care for them and for ourselves and avoid personal distress and injury. The spiritual health of the patients we care for is our responsibility. So is our own. I wonder if they are two sides of the same coin? Ralph Waldo Emerson thought so: “It is one of the most beautiful compensations of this life that no man can sincerely try to help another without helping himself.”

Doctors need to be able to recognise and at least provide initial care of spiritual distress. Do we know what it looks like? Where are the boundaries between psychology and spirituality? How does a doctor approach the question of spiritual assessment of a patient? How would a model of spiritual care be different, for example, from existential psychotherapy? How might it be useful? What are the required skills for such care? What should we take on, and when and to whom should we make referrals? I don’t think we have developed adequate answers to these questions.

Should a structured approach to self-care include a spiritual component? What advantage would that have for us? Should our College have something to say to trainees about spiritual care of others and ourselves? The Royal College of Psychiatrists believes so,  but not everybody. A recent Twitteration on the issue of mindfulness in schools in the USA suggested that many people believed that meditation is inherently a practice of other religions. Don’t look inside, for goodness sake!

As a group we know we must be high-level communicators. Should we also aim for an overt training in talking about what life means, even if it is about to cease, or should we simply follow Osler, and “minister to our patients through warm human contact”? Is that enough? I don’t think so.