Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

I hope you enjoy this week’s reads, which include topics like wills, funerals, dementia, research ethics and the experience of a hospice nurse who becomes carer for her mother. I hope there’s no typos – I’m rushing off to a communication skills workshop but wanted to post this before I leave.

As always, please leave your thoughts in the comments box below.

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Malignant Psoas Syndrome

Malignant psoas syndrome is said to be extremely rare, but I keep seeing it. Admittedly, working in the pain and palliative care service in a specialist cancer centre, if anyone was going to see it, you would think it would be my team.

I have had three patients with MPS this year and because each time it’s something that the clinical staff are not familiar with, I thought I would share a  short summary with the Palliverse.

The original description of MPS in 1990 (1) described patients with:

  1. Metastatic cancer involving the psoas major muscle either intrinsically (direct intramuscular metastasis), or extrinsically from metastatic retroperitoneal lymph- adenopathy infiltrating into the muscle.
  2. Painful flexion of the ipsilateral hip with positive psoas stretch test (‘‘reverse’’ straight leg raise) related to psoas muscle spasm or irritation.
  3. Clinical evidence of proximal (L1–L4) lumbar plexopathy with spontaneous, burning and lancinating pain associated with hyperalgesia (allodynia and hyperesthesia).
  4. Absence of osseous lumbar vertebral metastases and/or concomitant lumbar polyradiculopathy due to other causes (e.g., malignant neuraxial dissemination, chemotherapy-associated or radiation-induced neurotoxicity).

In 2010, Stevens et al wrote a helpful review (2) of MPS with a case review, mechanisms and theories. Five years ago, according to the paper, there had only been 28 cases reported in the English speaking literature.

I will leave interested readers to explore the papers themselves, but it describes polymodal pharmacotherapy (aka throw everything at it), plus some novel strategies like local anaesthetic block of psoas sheath.

What has encouraged me to put fingers to keyboards tonight though is the referral of yet another patient with psoas syndrome, plus this Japanese case series by Takase et al (3). It describes three patients with MPS who had excellent results with methadone (15-30 mg/day). Their average pain scores were reduced by an astounding 7 points with greatly improved function.

I am pretty keen to try adjuvant methadone for my new referral.

Have you seen any malignant psoas syndrome cases before?Were they recognised and treated as such? How did it go? Particularly keen to hear whether anyone has tried methadone. 

Sonia

References:

1. Stevens MJ, Gonet YM: Malignant psoas syndrome: Recognition of an oncologic entity. Australas Radiol 1990; 34:150–154.

2. Mark John Stevens, Charlotte Atkinson, and Andrew M. Broadbent. Journal of Palliative Medicine. February 2010, 13(2): 211-216. doi:10.1089/jpm.2009.0193.

3. Takase Naoto, Ikegaki Junichi, Nishimura Harumi, Yuasa Sayoko, Ito Yumiko, and Kizawa Yoshiyuki. Journal of Palliative Medicine. July 2015, 18(7): 645-652. doi:10.1089/jpm.2014.0387.

I think therefore I am – Te Arai Research Group Palliative and End of Life Conference, Auckland

Hi everyone,

Tomorrow I’ll be posting an article on the inaugural conference held by Te Arai Research Group.

Highlights include:

  • Me writing about some of my favourite PC nurses and my plans to clone them.

  • A conversation about engaging the public on palliative care, with hopes to continue the discourse.

  • How enjoyable it is catching up with old friends and valued colleagues, and the maintenance of networks.

If you can’t wait until tomorrow please check out my twitter feed:

@japmanforever

End-of-life care: no, we don’t all want ‘whatever it takes’ to prolong life

This article originally appeared in The Conversation

Charles Corke, Deakin University

We all die eventually, of course, but these days it’s very hard for doctors and loved ones to let patients and relatives die without first doing “whatever it takes” to try to keep them alive. That is, unless they’ve left clear instructions to the contrary.

The overwhelming priority for doctors is to save life. In the last few decades, technologies have progressed so far and fast that doctors are able to embark on treatments that until recently did not exist, or were too risky to consider.

The extra years of good health are wonderful. But everything comes at a price. While we and our loved ones can often be kept alive, this may involve burdensome treatment and awful outcomes.

But while the default position of medicine is to prolong life, staying alive isn’t everyone’s number-one priority, as my soon-to-be published survey results reveal. Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavoHere’s the latest collection of reads for your weekend, with palliative care news from around the world, research and social media advice, and a palliative pet care story. As always, please enjoy and share your thoughts in the comments below.

Today is World Refugee Day, at a time when world refugee numbers are at their highest since WWII. A new Palliative Care in Complex Humanitarian Emergencies (PALCHE) network has launched to help address the unmet palliative care needs of the world’s >60 million refugees. Read about it (and find out how to get involved) at ehospice.

Happy 10th Birthday, Pallimed! Continue reading

Palace of care/I think therefore I am? Special Edition – Project #ffsflame

A community of practice is a group of like-minded people who come together to work on a shared goal or cause. One of the core ideas behind Palliverse is that we want to form a virtual community of practice and translate it into a real world community of practice. This is in order to foster community spirit to make a difference in the world, in the form of global access to palliative care.

Palliverse is also  an ongoing tribute to the power of words. This was illustrated last November with the realisation of project #getjakbak, where-by last-minute crowd-funding on the fly enabled a dying man to go home to his family.

Project #ffsflame is a bit different in that it is a personal project of mine and is aimed at keeping one of my favourite people in the world from requiring palliative care services.

Who is FF?

FF is a member of my inner circle and has become very unwell with Liquid Malignant badness (blood cancer.) FF is one of the hardest working people on the planet, she is married and is the mother of two lovely kids, both under six years old.

The following word pairs are listed in an effort to describe her:
family first

fabulous friend
feisty female
fantastic free-spirit
focused foxy-lady
fulla fun
faithful facilitator
friendly face
fail-safe flexibility
forever fair-natured
farseeing freshness
fluent finesse
freckled flower

FF is not used to asking for, or receiving help as she is usually the one helping everyone else, but now is a time where she needs all the help she can get.

FF is scheduled to start her first cycle of chemotherapy early next week, and has to leave her home and young family to do so.

FF needs your moral(e) support.

To take part in a demonstration of the power of words and human connection, please leave a message in the comments section, or tweet to #ffsflame to keep her fire burning.

Please spread this request to all of your social media networks.

Thank you,

James

3 Tips for Using Social Media to Read Articles More Efficiently

3 Tips for Using Social Media to ReadI’ve been asked how I have time to find and read so many palliative care articles, both in academic journals and the lay press (the type of thing that ends up in Elsewhere in the Palliverse posts). Is my nose constantly pressed up to a screen? Definitely not. Below I will share a few tips on how to read more efficiently using free social media tools and apps. Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

I hope you enjoy this selection of articles (and some links to photos and videos) about palliative care, research and related topics. If you make it to the bottom, I’m interested to know what you think of the last link. Please share your thoughts, and any recommendations, in the comments section.

  • “Why is so difficult to prognositicate?” asks neurologist Jules Montague, examining cases of poor prognostication throughout history. (Why doctors get it wrong, The Guardian UK)
  • Team Palliverse still have a place in our heart for textbooks, and we love it even more when their editors write blog posts. To mark the release of the fifth edition of the Oxford Textbook of Palliative Medicine, the OUP blog is publishing a 3-part series titled “Facing the challenges of palliative care”. Part 1 (Continuity) and Part 2 (Development) are available now. (Oxford University Press)

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I think therefore I am? – Alcohol hand-rub and the clinical application of Mindfulness

Mindfulness in recent years has become increasingly fashionable throughout the world and is popping up as part of treatments in Psychiatry, as part of the rehabilitation of prisoners, and even in the Palliative Care world. Is it really all that new or is it the repackaging and re-marketing of what Buddhists have been doing for thousands of years? What follows is my own personal experience of Mindfulness and how I apply it to my practice of Palliative Care.

I had been interested in meditation since the late 1980’s when I read in a Batman comic that when he was completely exhausted, instead of sleeping, Batman would meditate briefly. This would leave him refreshed and able to go out and fight the bad guys again in a few hours’ time. Having never been a fan of sleep in general, the idea of a sleep substitute really appealed to my younger self. Throughout the 1990’s I explored various types of meditation practice, but had largely given up by the 2000’s.

In September 2013 I had signed up, in my usual last-minute fashion, to a pre-conference workshop at the APHC 2013 conference held in Bangkok, Thailand. Having registered for the workshop very late I was left with only one option. The workshop entitled, “Mindfulness in Clinical Practice,” turned out to be the highlight of a very enjoyable conference.

Less than a week later I was in Montreal, Canada for the 1st Whole Person Care Congress in which a number of the sessions and workshops were devoted to Mindfulness. It really had become the flavour of the month on a global scale, but did it spur me into a programme of regular Mindfulness practice? Heck, no!

It wasn’t until October of last year that I decided to give Mindfulness meditation a proper go, via the Headspace app. This easy to use program of guided meditations has led to me doing 236 sessions and has had various benefits. A greater sense of calm, better observation skills, greater ease at falling asleep, and even benefits for my patients.

What is the connection to alcohol hand rub?

As a Medical Registrar the importance of clean hands was drilled into me by an Obsessive/Compulsive trait possessing Physician who went through 500ml of Alcohol hand rub per day in his quest to limit the spread of hand-borne contagion. Apologies for the next sentence…some of it rubbed off on me. As part of my own personal ritual, prior to knocking on the door of patients, I will douse my hands with a good squirt of the alcoholic jello-shot. While I am rubbing my hands together I take a deep breath in, and slowly release it. This brief amount of time allows me to centre myself so that I can be truly present in the clinical moment that follows.

Being in the moment with the patient allows me to “tune in” to what they are going through, and to gift them my full attention. I’m not thinking about what is for dinner, what my plans for the weekend are, what an interesting shadow is being cast on the wall, but instead I am able to focus on what they are saying, verbally and non-verbally. Of course this doesn’t happen with every single patient encounter that I have, but when I am “in the zone,” the patient’s situation becomes much clearer to me. I end up with a much better idea of what they want and need. This fleeting moment full of human mind connection still surprises me at times. It feels like it is a little piece of magic, something to be approached with wonder.

The patients seem to enjoy it too.

At the end of the visit I say my goodbyes and reverse the entry ritual. Another squelch of disinfecting viscous chemical is applied to my hands, another deep breath is taken and released. The ward round continues.

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free smartphone app for GPs providing palliative care

There’s an app for that! ABC news writes that a new smartphone app can help guide GPs in management of patients approaching the end of life.

It’s free from iTunes and provided to you by the lovely chaps at Flinders University in SA.

We would love to hear from GPs or trainees  – what do you think?

Sonia