who am i

to my surprise, i have been learning a lot about palliative care sitting in the lung transplant clinic.

i started my research fellowship back at the mothership a fortnight ago. my project aims to explore the experience and needs of patients and carers on the transplant journey. my hypothesis is that there are unmet palliative care needs in this population and, if so, the other part of my fellowship is to figure out how best to meet these needs.

i had worked as the transplant resident a few years ago. it was exciting and challenging but i was distracted by my exams. nor did i spend much time in the clinics, as i was always swamped by work on the ward. as i discovered on my oncology term during advanced training, life in clinic is very different from life on the ward. people are positive, energised and keen to live; rather than resigned, exhausted but afraid to die.

it turns out that a lot of what i think of as 'palliative care' is already being practiced in the lung transplant service: discussing prognosis. exploring psychosocial issues. determining goals of care. bolstering hope in the face of death. i am left wondering: perhaps there is no role for palliative care here. maybe ian maddocks was right and palliative care is just good medicine.

but here and there clues appear, suggesting that my radar has not been completely off and the unease i felt years ago was not entirely unfounded. refractory symptoms abound. verbal and non-verbal cues are left unheeded. distress is palpable in the air. this is the natural habitat of a consultation-liaison palliative care physician. this is where i am needed. i can feel it in my bones.

and, most of all, the patients and families and clinicians i meet tell me they want help with the things that i do every day. they may not call it palliative care. they may not even know what to call it. but they seem to sense that things can be better and place their confidence in me to make it so.

i suppose i'd better not let them down.

the song remains the same

'what you need to realise is that, during a psychotherapy session, there are two wild beasts on a boat at sea. so if you're doing it right, there should be two very scared people in the room."

it's been a while. a lot has changed. but much remains the same.

i visited a friend in hospital today. we talked about what was happening for him. we also reminisced about what happened in the past, when we were both uni students sharing a house with other blokes, all of us trying to figure it out while keeping it together. i thought the visit would mainly be about him, but in actual fact a lot of what we talked about was about me as well. i wasn't at all prepared for that. my fault really. but what i also realised was that -

in the end we're all in it together.

'but you remember what i remember / and that's enough to care'

where when what why

throw myself into work in order to justify my existence. staying at work late to avoid the emptiness at home. taking on other people's suffering so i can feel something. people watching in order to feel part of the whole. stuffing my face to fill the bottomless hole in my soul.

sometimes it works.

study days

i had a couple of study days this week, one in brisbane and one in melbourne. a mixed bag of good and not-so-good presentations but overall i learnt a little about palliative care and communication skills and a lot about the importance of being exposed to new things.

i find that so much of my evenings after work these days involve slumping on the couch, eating bad food and watching bad tv, lamenting about my lack of energy. but the two study days made me realise that doing new things, being in a different place, listening to and thinking about new ideas fill me with energy. rather than just reflecting on past events, i actually start making new plans in my mind. sure most of these plans don't translate to action - but at least for a little while i feel hopeful and positive!

i really must do it more!

do not go gentle into that good night

"and you, my father, there on the sad height,
curse, bless me now with your fierce tears, i pray.
do not go gentle into that good night.
rage, rage against the dying of the light."
- dylan thomas

the dying process is often associated with physical and psychological suffering, and in palliative care, we try to alleviate this and achieve a peaceful, dignified death for our patients. we often console our patients and their families with this promise and sometimes this helps them to move on from the shock and hopelessness of a terminal diagnosis.

however, despite our best efforts, sometimes we fail. although total failure in the form of a screaming patient surrounded by crying family is thankfully a rare occurrence, often the medications we use to treat symptoms compromises our patients' mental faculties. they spend more and more time sleeping. and when they are awake, they find themselves in the grey zone: unable to concentrate, their thoughts wander as their minds slip back into the haze, their senses dulled, their humour muted. they become the hollow men, a shell of the people they once were. it's a horrible state of being.

i don't know how i would like to go. i certainly don't have the right to tell my patients how they should go. but what i do know is that, even though we might like our dying to be peaceful and dignified, sometimes it's noisy and messy, filled with gasps and groans. and despite all that we are trying to achieve in palliative care, sometimes, a person's struggle against death can feel so overwhelmingly noble, human and right.

"this is the way the world ends

this is the way the world ends

this is the way the world ends

not with a bang but a whimper."

- t. s. eliot

politics

being a registrar involves managing people:

- its leading and teaching the residents, interns and medical students.

- its liaising with all of the consultants, working around their varied styles.

- its coordinating care with the other medical teams, nurses, allied health, hospital administration - knowing when to compromise and when to stand firm.

- its also about looking after myself - recognising when im tired, hungry or close to losing my temper, then stepping back from the brink.

all of these tasks are crucial to being a good registrar. but, for me, i would still like to believe they're secondary to caring for my patients and their families. now may be ive got that wrong. but im yet to find out the hard way.

my patient is dying. she has a prognosis of days. all of her energy and will is directed towards a significant family event that has been looming for months. afterwards, i would not be surprised if she fades quickly to nothing. i have seen it before. many times.

she has not been the easiest patient to look after. at times, she refuses our recommendations. she has her own reasons for these choices, and although i do not agree with them, they are not random or irrational, so i respect them. patient autonomy is a cornerstone of medical ethics that i believe in and guides my medical practice.

however, another key tenet of medical ethics is that of resource allocation. the hospital is full. patients are backed up out the doors of the emergency department. there is a bed at the palliative care unit, where my patients care needs would be better met. but she has consistently refused to go back there after a previous bad experience, despite our attempts to overcome this. she is taking up an acute bed and other patients' care are being compromised as a result of this. (of course, the other patients' care also also being compromised as as result of bad planning by the hospital administrators - but naturally this is not something they would consider.) the hospital administrators tell me that i must send her to the palliative care unit, against her wishes, or discharge her home, where her care needs could not possibly be met.

naturally, i refuse. patient autonomy trumps resource allocation. so the drama escalates. i am called away from patient care by various urgent pages, phone calls and meetings. my suggestions for alternatives are ignored. more patient care is compromised but the hospital administrators do not see this. they want her out. everything else must wait.

i give in and try again. i shake her awake from her restless sleep. she is drowsy and drifts in and out of the conversation. i make promises i don't know if i can keep. she seems to understand, and finally nods yes.

i leave feeling like ive done a bad thing.

reflection

we had a session on reflective writing the other day, as part of our fortnightly palliative medicine training sessions. we were each given a fancy notebook with hard covers (!) and then told to write whatever we wanted for half an hour.

it was hard to get started. knowing that i would probably have to read what i've written in front of the other trainees in the group and our facilitator (a palliative care consultant) didn't help. it took me a couple of minutes just to pick a topic that wouldn't invoke too many emotions. i guess i didn't want others to judge me. for all the posturing i do ("i don't care what other people think," i tell myself...) i guess scratch the surface and i'm really still the awkward self-conscious fifteen year-old.

the other thing that made it hard, i thought, was that i "never" do any reflective writing. but then i realised that that hadn't always been the case. this blog consists mainly of reflective writing. listening to what the other people in my group wrote, then to myself reading the dry uninspiring prose i'd struggled to put together, i felt a little sad that i'd let it go for so long...

well, maybe it's not too late to pick it up again.

back to mildy

bliss

sleeping in after a late night up drinking and gaming

the smell of cooked breakfast with freshly brewed coffee

the weekend paper and all the time in the world to meander through it

and to top it all off, dinner with good company to look forward to

*sigh*

the summer of 11/12

daylight saving started over the weekend and so today as we walked out of the hospital after work, it was still a bright warm afternoon. no exams. beer time. sweeeeeeeeeeet...

good grand finals over the weekend. geelong were deserved winners as colliwobbles hit again. fantastic first three quarters. manly was the more disciplined team and worked hard for their win but the warriors were much more exciting to watch, particularly in the second half.

i have a couple of great interns atm. they work really well together, making ward rounds a breeze. and with dot on the team as well, there is always plenty of laughs. plus dom is a hands off consultant, which of course is how i like them. can't ask for much more than that...

our apartment got flooded the other day. i was at work so gal had to sort it all out. got home to find him still madly mopping the floor. the floorboards are all ruined and we had to make do without hot water for a few days. but right now, i really couldn't care less...

it's going to be a fantastic summer!

back to work with a vengeance

so much for being a vegetable. things are busier than ever - and boy its fun!

ive signed up for not one but two research projects. so lots of reading around the subject and learning (and re-learning) random things like how to do a pivot table and apply for ethics approval. and ive just realised why im enjoying this so much - its because i work better when there are concrete goals. like an essay or a mini-assignment. abstract, open-ended tasks like "studying for the fracp exam" are just hopeless for me. but i dont have to do that ever again! yay!

on top of the projects, i have my interview with the vpmtp panel tomorrow. and then job applications, house hunting and also trying to get through all the other chores ive put off for four months - tax, salary packaging, sorting through the mess of paper in my room.

im revelling in the promise of tomorrows. how long can this last?

the end of the beginning

so i passed the fracp. big deal. now what do i do?

just kidding.

IT'S BLOODY FANTASTIC!!!

for various reasons, but most of all:

1. i don't have to do another twelve months of this

2. i didn't let laila down

3. i don't have to feel guilty about not knowing anything other than palliative care ever again.

sure i have six months of general medicine to go. but it doesn't really bother me too much. i can come home and be a vegetable in front of the tv without feeling guilty! oh it's just so good...

hectic

time is running out like sand in an hourglass. things seemed so leisurely three months ago. now the pace hastens. we're all pushing each other along, helping one another to overcome inertia, swelling together into a wave that will hopefully peak and break beautifully in five weeks' time.

there are so many thing to do at once that i either feel overwhelmed or flit from one task to another, briefly tackling something before becoming distracted by something else. compiling and memorising lists, researching and trying to understand signs, tidying up my cv and writing emails to various palliative care directors to set up meet-and-greets, booking and seeing patients and examiners for long cases, attempting to make it to as many short case tutorials as i can, and on top of this looking after my own patients and trying to make the most out of this rotation. doesn't seem to leave much time for anything else!

five weeks to go... i can't wait until it's over!

pall care bear

im back doing palliative care. yay!

its annoying having to prepare for exams at the same time. all i want to do is break down people's discomfort into discrete, treatable symptoms; talk away the family's fears and guilt about their loved one's dying in family meetings; dive into clinical research and learn about new exciting drugs; eat free drug-rep lunches perched on a ledge at the back of various multi-disciplinary gatherings; do a few tummy and pleural taps here and there. ahh... bliss! is it wrong to feel this way? am i just finding new ways to procrastinate? am i just trying to convince myself that this is still what i want to do, having been away from it all for a couple of years?

i don't care. im looking forward to going to work tomorrow. something i haven't felt like doing for a long time.

waiting... again

shit has it really been a month already?! it feels as if ive barely started! sure ive stumbled through a few short cases and made a fool of myself messing up a couple of longs, but theyre merely test runs, before i really get stuck into it, before i get serious about the whole thing, before...

sigh. here we go again. perpetually preparing myself. and then just making do when it comes down to it. the life of a procrastinator.

only eleven weeks to go.

geelong waterfront

five short weeks later, im back in the soup...

what is art?

is this art? (a room full of purple balloons and screaming teenagers)

what about this? (a couple of groovy slides and a bunch of kids aged ~ 6 to 60)

or this? (cooperative lego architecture)

(links here and here)

refrain

the phone going off at 3:30pm on that fateful afternoon and recognising laila voice over the airwaves was possibly one of the most dreadful moments of my life. surely it was all over. but to my great surprise, she didnt have bad news for me.

i think i was in shock for the rest of the day. i trudged dutifully to the belgian beer garden, but i really didnt feel like going. i convinced myself that i should do the expected thing, join in the backslapping and cheerful false modesty as everyone breathed a big communal sigh of relief. it was horrible. i left without saying goodbye, which i guess was nothing out of the ordinary for me. instead of a weight being lifted off my shoulder, i think i just felt confused. what do i do now?

this is such a ridiculous state of affairs. how did i find myself in this situation? i mean, its not like im not glad that i passed. on the contrary, im not sure i could have gone through another twelve months of this without some sort of permanent brain damage. but for some reason i feel guilty. the voice in my head is incessant: "i didnt deserve to pass", " i still dont know anything", "i should keep studying"... before the exam it was procrastination; now its denial. its ironic and its sad.

sometimes i really dont know whether to laugh or cry at my useless ego.

hiatus

so i have dedicated most of the last twelve months of my life this this thing.

and now finally the day has come and gone.

there is some regret. i gave it a shot. i really did. i could have done a bit more, probably. especially the last three months. that didnt really go very well. it couldve made all the difference. maybe. but its done. theres nothing more to do, but wait...

there is a lot of relief. "at least its over!" the little voice in my brain shouts! but almost before that thought can form another pops up next to it: "at least for a little while. i mean, you dont know if it is over for good. and you know, deep inside you doubt yourself, you suspect that you will have to do it again. you know you have to do it again." oh but i dont want to think about that right now.

now is time to rest. clean up my room. put my affairs in order. categorise and cleanse and recharge my batteries. the next challenge may be just around corner.

day dream weekend

instead of studying im thinking about my ideal weekend. this probably has something to do with the beautiful spring day outside and the impending 13.5 hour cover shift tomorrow. sigh...

waking up naturally (no alarm clock!) in the cozy hole ive made for myself in the doona. only my head is sticking out in the cool morning air. its still mostly dark outside, with only a slightest hint of dawn poking through the curtains. the window is open and i can smell the trees.

a quick coffee before i head out the door. its getting brighter as i hit the trail. an invigorating walk through the forest before making it home for a cooked breakfast of scrambled eggs, mushrooms, spinach and hash browns. more coffee. lounge about reading the paper, guilt free, with nothing else to do before lunch. ahh... i might even do some laundry!

head out to meet friends for lunch. vietnamese? japanese? chinese? indonesian? i don't really care as long as there is plenty of room for the gang to huddle and not too loud so we can all hear each other. what's been happening in everyone's lives? more of the same. bitch about work. we love it.

wander through an art gallery or maybe head over to someones house to play board games (or even a quick LAN battle). fire up the barbeque, crank up the music and down a few beers around dusk. theres not much to say. we all slouch down and watch the sunset. there is nowhere else we'd rather be.