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