Control & Decision Making

elizabeth

Taken from my hospital room on a good day

I’ve been in hospital for the last three weeks, and have just returned back home (finally!).  It has been both a very difficult physical experience dealing with pain management and a wound, but also a mental journey for me.

 

A lot of what I read about palliative care, and my own experiences as well, have been about control; the control that palliation gives you over the time you, as an individual, have left, rather than the often more passive involvement of care when engaging in active treatment.  Throughout my treatment, I’ve been eager – possibly to my own mental and emotional detriment – to remain highly active with what has been going on.  I make guesses as to what might be causing pain or discomfort or other symptoms, explaining to my doctor what it must mean as he compassionately and respectfully listens to my ideas that I’ve gotten from my half-hearted reading of an abstract from a medical journal.  Continue reading

Family doctor involvement in palliative care: what’s its prognosis?

I feel like such a fraud. What am I doing writing a guest post for Palliverse, when I am a doctor who rarely provides palliative care? My justification for writing here is that it’s this very sense of uncertainty and underqualification that I’m feeling which is the subject of my post.

I’m a “general practitioner” — a “GP” as we’re called here in Australia. If you’re reading this post from North America, think “family physician” — it means much the same thing — but for convenience I’ll use the term “GP” today.

Continue reading

2015 in the Palliverse – conferences

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As we adjust to the New Year (hello 2016), Palliverse is looking back at some of our posts over the past year. Being palliative care nerds, Team Palliverse have been lucky to attend numerous Australian, New Zealand and international conferences over the past year. Click the links below to attend vicariously or relive some of them:

 

Stay tuned in 2016 for more conference updates – Team Palliverse are already begging for leave and furiously submitting abstracts. And if you are attending a conference that would be of interest to Palliverse readers, and would like to share a summary, please contact us!

To be alerted about new Palliverse posts, follow us on Facebook, Twitter or LinkedIn or hit the “Follow” button in the right-hand column to subscribe to email alerts.

 

2015 in the Palliverse – palliative care reading

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Are you looking for some reading over the summer holidays (or winter if you’re that way inclined)? Over the next fortnight, we’ll be looking back at some of our posts over the past year. We’ve been to conferences, reflected on clinical and research experiences, shared palliative care educational resources (#FOAMPal) and hosted guest contributors.

A good place to start for palliative care reading is our “Elsewhere in the Palliverse” posts, curated lists of palliative care articles, blog posts, educational resources and the occasional video from Australia, New Zealand, and beyond. This year we’ve shared fifteen “Elsewhere in the Palliverse” posts. We’ve had special editions for events like World Hospice and Palliative Care Day, Dying to Know Day, and Halloween.

To be alerted about new Palliverse posts, follow us on Facebook, Twitter or LinkedIn or hit the “Follow” button in the right-hand column to subscribe to email alerts.

 

First Person: The therapeutic value of touch

photo by Jonas Vincent via unsplash.comThe first time one of my medical professionals touched me for comfort rather than during a physical exam, it was during my liver biopsy.  I was extremely frightened of the procedure, due to how painful I’d been warned the procedure was, and I was, and still am, slightly uncomfortable with needles (though daily Clexane shots sure sorts that out fast).  The medical team at the imaging clinic I attended had gotten in a second nurse, just to hold my hand during the procedure.  It was her 60th birthday, and she had been called in, literally, just to hold my hand.  I was incredibly moved by this, and incredibly comforted to have someone gently talk me through what was going on – to warn me to look away when the giant liver biopsy needle was brought out, helping me count holding my breath as the needle drew up the cancerous cells, and gently walking me to the recovery room after the procedure finished. It was one of the kindest things I have experienced with my medical professionals – and I have experienced more kindness than I can even recognise. Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

Welcome to this weekend’s reads. People seem to enjoy the cute animal stories, so I’ve included one (near the end, if you want to read it first).

The latest paediatric palliative care video (below) from Little Stars is about treating chronic pain in children. It’s nice to see how the interdisciplinary team interacts with, and respects, the girl in the video.

An article that is all over my social media feeds this week: Knowing How Doctors Die Can Change End of Life Discussions. It also brought back to mind this article on How Doctors Die. (NPR)

“I felt like I was beating up people at the end of their life…I would be doing the CPR with tears coming down sometimes, and saying, ‘I’m sorry, I’m sorry, goodbye.’ Because I knew that it very likely not going to be successful. It just seemed a terrible way to end someone’s life.” Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

This week’s reading list features stories from around the globe.

Telehealth helps to facilitate home-based palliative care in Taiwan, in one of a series of EAPC blogposts about palliative care in SE Asia (Cloud-based platform for palliative care at home)

Tailored care for older patients with cancer in Latin America: an imminent challenge (British Geriatrics Society blog)

“Although it is unrealistic to believe that someday every older adult with cancer will be treated by a geriatric oncologist, we should make every effort to offer geriatric training to all healthcare professionals and to create bridges between geriatrics and other medical specialties.”

Health advocate and heart attack survivor Carolyn Thomas on the physiological and emotional response to the fear of dying during a heart attack. Continue reading

Is the health system designed to crush the creativity and spirit of health professionals?

Do you ever feel like health professional education and the health system are designed to take talented, intelligent, creative individuals and turn them into machines with no ability to innovate? Do you find yourself banging your head against a wall when even the smallest change for improvement requires hours of paperwork (that you probably submitted via fax), approval by numerous committees and months of waiting? Do you feel trapped in a health care silo? Do you feel ridiculous attending “multidisciplinary” meetings when the multiple disciplines are merely different specialties within your own profession?

If the answer to any of these questions is “Yes”, please keep reading. Continue reading

Elsewhere in the Palliverse – weekend reads

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I’d recommend the current issues of New Philospher (#7: Health) and Quarterly Essay (#57: Dear Life) for some palliative care-related reading. If you can’t make it to the book shop here are some online reads:

Truly beautiful words – Before I Go: A Stanford neurosurgeon’s parting wisdom about life and time. (The Washington Post)

EAPC has a new blog series from the patient and carer perspective! (Palliative Stories, EAPC Blog)

The Trouble With Advance Directives. (NY Times)

A doctor discovers an important question patients should be asked. (Washington Post)

When doing everything is way too much. (NY Times) Continue reading

Elsewhere in the Palliverse – weekend reads

Gratuitous holiday snap unrelated to post

Gratuitous holiday snap unrelated to post

I’ll be spending the weekend enjoying the sunshine reminiscing over holiday snaps catching up with tweets from #CancerCongress, #PPCConference, #COSA2014 working on an ethics proposal. If you’re looking for something to do, try this reading list.