None of us are getting out of here alive.

Dramatic no?  But as much as we might rationalise it, that’s medicine.  I’m PGY a trillion now, but strangely enough, Friday was the first time I’ve ever had to tell a perfectly cognisant person that they were going to die in the next few weeks to months.  Seriously. I’d never done it before.  I’d told family after family, held their hands and passed them tissues, made cups of tea many times over.  I’ve done actor training on breaking bad news, and then more actor training, and then more actor training.  And then some more.  But every single one of those training sessions was on breaking it to family.  Never to the patient.  It’s not something we are taught to do.  And in the public hospital system I’ve noticed it is something very much not discussed and hugely shied away from.  Sure we discuss with each other that someone is going to die.  We talk about the ‘futility’ of certain testing, of changing our approach, of discussing it with the family (but only once palliative care or geriatrics tells them to!) but to their face?  An elderly person?  When on earth do we do that?  Most of the time people are too unwell to be told.  But not this time.

I wont lie, I put it off for a week.  My resident and I talked it over and over and over.  My boss offered to help me.  I’m ashamed to admit I was too proud and declined and I bloody well should have let her show me how it’s done.  The problem was that we really like our patient.  She’s been with us for weeks.  And she’s going home soon anyway.  But she’s reached a point where the unique diseases that she has means they can’t be treated anymore.  And in the state I work in now, all the specialist services seem to operate almost solely in an outpatient capacity and tend not to have those discussions anyway.  I miss Sydney for this reason, I miss the absence of general medicine (apologies to my gen med colleagues, it’s just my normal).  I told her family first.  Secretly I was hoping they’d do the old ‘don’t tell my parent they’re dying unless they ask’ thing – but they didn’t, and finally after procrastinating so hard I couldn’t even look at myself anymore, I took a deep breath, walked into her room, pulled the curtain, and sat down JD style and told her.

I framed it in the way I’d done all the actor training, the words slightly altered.  “Oh no”, were her first words.  And then she cried.  She asked me if I was sure nothing more could be done.  I told her I was sure, that when it came back, we would treat her anyway, but it was unlikely to work, but we would treat her.  “Oh please“, she said, “Oh please try”.  She cried some more.  I cried a little too, but only for a second because she reached her hand out to me to comfort me and I realised, this was her sorrow, not mine.  I should be comforting her and not the other way around.  I fumbled around with my words, told her that this was going to happen to all of us, that we would all meet again one day, in one way or another.  And that right now, in this moment, the disease was surprised, right now she was as well as she could get and I didn’t really know when it would come back.  It could be weeks, or months.  She admitted she thought about dying all the time, and then the wave of grief subsided and she asked if she could be left alone to watch TV.  I gave her hand a squeeze, quietly left, and went back to the nurses station where I, the resident, and the NUM all cried because she is such a kind and lovely patient who we’ve grown attached to.

But now, as I write this, I feel an anger at the nihilism in medicine.  Especially toward the elderly.  I face it every day.  We take patients rejected from private hospitals and public rehabilitation because ‘too old’.  I get archly told by doctors senior and junior to me that a test is pointless, a treatment, because ‘what would it solve’, ‘what is the goal here’, because they never see the face of a patient asking, ‘oh please, just try’.  They never see their family saying ‘we know they’re going to die, but we just want to know’.  I get the same people waxing on about ‘costs to the health system’, like they are both the bearers and managers of that cost, forgetting in those moments that they are doctors and we are here for our patients first and foremost.  They never say these things to their faces.  I’m not arguing for a heart transplant in a 90 year old.  But one more trial of antibiotics, a brain scan, an arthrocentesis – none of these things are big asks, but they bring a lot of peace of mind.  Once you know, as a person grieving, either for yourself or a loved one, that everything that can be tried has been, once you know the hard diagnosis, instead of the presumed one, plucked from the air with the certainty of the ignorant, you can accept your grief.

My patient has children.  Grown children.  Grandchildren.  And she’s not done yet.  She’s not ready not to exit from their story, or her own.  As much as I can help see as much of the rest of her life I will.  As much sadness I have for her story as it is now, I’m also humbled by that conversation because in that tiny amount of time, I became a vastly better doctor.

One comment

  1. I feel people who ask “what’s the point?” or “what would it solve?” are highlighting their ignorance and somewhere along the line they’ve lost compassion for their patient’s. The point is about respecting the autonomy of our patient’s, supporting their capacity to make informed decisions – and our duty to make informed decisions too. This makes me so frustrated.
    I think of all the times I’ve argued with ICU to accept care of a patient with advanced disease, and their question essentially is “what’s the point?” The point is that despite this person’s terminal disease, they usually have good quality of life and their time is not NOW.
    And Gen Med is just as bad. The pressure to fill out NFR forms and press to palliate a person too easily (24 hours-trial-of-life is one of the most offensive phrases in medicine IMHO), reflects such a narrow understanding of our patients ad the lives they lead.
    I see my patient with metastatic cancer, and together we know she’s got maybe a year to live. But I’m talking together with her, and we say our aim is for “a run of good days” most months. Between appointments, she gets admitted for an infective illness. Reading through admission notes I see they made her NFR/NFM and I see they provided her limited treatment because she’s “palliative”.
    This “palliative” woman is living life; she’s far from dead. And she recovered from that acute illness, and I was able to advocate for her to get a surgery that would provide her some symptom relief – and give her the “run of good days” she was after.
    I have so many stories like that having spent more than my fair share of time on Haem and Oncology. But without that experience, my gen med and ICU time would have taught me cynicism. “What the point?” is a question people ask who don’t see the value of giving people a diagnosis to provide answers and an explanation, to help them plan and manage their lives, to guide possible treatments to relieve symptoms and buy some valuable time.
    I often wonder if any doctor who asks “what’s the point?” would elect to have their questions go un-answered if they or their loved ones had suffered some rapid unexplained decline? Would they be happy to proceed in ignorance not knowing whether their time was nigh, or whether there was some reversibility or respite from their decline with simple measures? If it’s outside your specialty, you might not know of a new targeted therapy which might slow progression of disease, or options for control. There’s questions worth seeking the answer to – not to put the patient in harm’s way – but to give them some control over their destiny. Yes, we’re all going to die – and we can have a good death.

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