Death over (Christmas) Dinner – Breaking the Taboo of the Dying Patient

48404240_2186633368055959_2970907081407725568_nTo put things bluntly, we all know someone who is dying or who has passed.  If you haven’t, then you’re perhaps the lucky one of very few – because death and dying is a natural happening.  We all go, and we all go at different times and in different circumstances.  Did that sound…too abrupt?  An awkward subject to bring up, no?  Particularly from a medical student whose sole goal to strive towards in life is to save lives, surely?  Death is a taboo subject.  But it is a particularly taboo subject amongst young people like myself.  As a young person in their 20’s, the average life expectancy of 80 years means this whole topic doesn’t even tickle the radar.  But when it suddenly does, we are left in an awkward and denying state of how to deal with it, and what to say.  When is, then, death and dying taught in the medical school curriculum?  Hardly.  A single workshop on the topic of ‘Breaking Bad News’ during medical school barely prepares any of us for what we will inevitably face on such a frequent basis throughout our future careers as doctors.  How then are we supposed to compose that, again, inevitable conversation with patients and their relatives if the entire subject makes you feel uncomfortable?

Of my three years in medical school so far I have spent a fair chunk of it on the Intensive Care Unit hitting the brink on far too many occasions.  Multiple respiratory arrests, a respiratory failure on the side of a mountain very far from any hospital, a horrific case of sepsis, and pneumonia, all forced my family into the autopilot mode of having to prepare for the worst.  Yet, as cliché as it sounds, these near-fatal brushes have made me genuinely revaluate life.  The fact that, in all of the situations above, there was potential, possibility and time to reverse the nature of the illness, it gives us all, yet again, another chance to discuss the ‘what ifs’ for next time.  Because with the unpredictable beauty, (and fragility) of life, we will never know if there will ever be that ‘next time’.  For now, I can carry on to tell the tale, and hopefully use this as another basis of empathy for my future patients, but these second chances are not always the case for people with terminal diagnoses.

My Grandma had a terminal illness – and contrary to belief, it was not a cancer diagnosis.  As health professionals we can often forget that there is a common misconception amongst the non-medical general public that if it is a terminal diagnosis and it requires the input of palliative care then it is some form of malignancy.  Wrong.  My Grandma had COPD.  I watched her, over the years, gradually dwindle from a feisty, independent woman, so pink and lively in the flesh, to a nervous wreck, tinged grey, crouched over and housebound.  In the last few months I watched a longing fear dollop lifelessly in her eyes.  But nobody once talked to her about her illness.  Nobody once spoke to her about death.  Not even I.  You must be thinking, why on earth would you want to describe your loved one in that way?  But it is simply the face of reality.

She ventured out once or twice, for coffee and cakes at the nearby day hospice, St. David’s.  I cannot fault the care they offered her – and again, despite the misconceptions, hospices are so wonderfully full of life.  It gave her the opportunity to meet others suffering the same condition as her, to remind herself what the outside world was really like, before she fell ill, but also to give my doting Papa a time of respite – a chance to live his life too.  To say her eventual death was unexpected would be incorrect – we all knew it was coming, judging by her rapidly deteriorating demeanour.  But what was less expected was that it was ultimately a medical error that led to my Grandma’s death.  The oxygen on the wall beside her hospital bed was turned up to maximum, turning her body grossly and irreversibly acidotic within just a few hours – just enough time for the rest of our family to scramble up to her bedside from all four corners of the UK.  There was no time to get her a bed in the hospice.  There was no time to move her from the frantic environment of the geriatric ward to somewhere more peaceful.  But there was still enough time to say goodbye.

Perhaps the most comforting thing for me, was knowing that she could hear us.  Spending fortnights at a time on a ventilator myself, I had become accustomed to knowing that somewhere, inside of us, there is a voice still speaking out, and an ability to somehow, though vaguely, know what’s going on around you.  So whilst the rest of the family wept, I spoke to her, and chatted.  We chatted for a very long time, as she gargled back, knowing deep down that this gargling sound was the first process in which the body starts to shut down.  This conversation was solely my own coping mechanism.

We’re all hit by grief in different ways.  Whilst my family sobbed, held hands, and handed round snotty tissues, my body’s subconscious reaction was to remove myself from the entire situation and run to the public toilets on the ward corridor, resorting to projectile vomiting down the loo.  Not once did I break my composure though.  Maybe it was the skill of autopilot.  Maybe I felt the need to keep things together for the sake of my family, for the sake of my Mum who had just lost hers.  For the sake of my younger sister – setting that ‘acceptable example’ as the elder sister.  For the sake of my Papa, who, still to this day believes that his wife died naturally following the decision to simply withdraw her medication.  The truth would kill him.  Fact is, there is no right or wrong way to grieve.  But, at least by having the guidance on how to adopt multiple perspectives post-death and during the bereavement process, we can feel more at ease to communicate these dealings and experiences with others around us.

With the Christmas period looming once again, it’s always a particularly hard time for those who have lost a loved one.  It was only the other day that my Mum shed a few small tears in private.  I perhaps hadn’t appreciated that many of us keep our grief and grieving within us for a very long time, if not, forever.  But, it has been 2 years and we are now just about able to have a good chat and fond chuckle over the wholesomely good memories of my Grandma over the dinner table.  This Christmas dinner we will without doubt be toasting to her.  And it’s not such a bad idea either.  The concept of ‘death over dinner’ was discussed during a fascinating talk led by Dr. Mark Taubert, a Palliative Medicine consultant, at the APMJ Conference last month, at the Cicely Saunders Institute in London.  It was the first I’d heard about talking about the topic of dying in such a way and actually, it’s such a wonderfully intriguing initiative that only opens up the whole door to such an otherwise sensitive conversation, breaking down that taboo.

But let’s not just talk about it post-death – let’s talk about it now.  Talk about it during your patient’s, loved one’s, dying process, where possible.  Whilst some patients are very open about coming to the end of their journey, even the quieter, more reserved patients still want to talk about things far deeper down.  It’s inevitably the fear and uncertainty, and the current tabooed culture of death and dying that prevents them from doing so.  By taking the first initiative to bring this important subject up, you are already making it far easier and less awkward for the person going through that process.

My Papa still doesn’t talk about my Grandma’s death.  And that’s perfectly okay.  It takes time, and some people may never want to talk about it.  But it’s important to remind them that there is always support out there.  As an 84-something year old who tries to convince us that they are coping, yet withering the days away sat in the living room with last week’s newspaper, fridge empty, it’s undoubtedly down to, again, the social taboo of death engrained in the older generation.  His whole retired life before my Grandma’s death revolved around obsessively checking her medication routine over and over again.  And, when she was taken out to the day hospice he would sit, watch and wait rigidly at the window, waiting for her return.  Her life was his sole purpose, and the creeping of her illness and inevitable death solidified him in fear.  Now that purpose is no longer applicable.  I had only wished I’d talked about things with him sooner, but we can only respect the time he now needs to consult the process of death, and the consequential grief.

The grief of losing a loved one can sting for a lifetime.  But your grief is one of a million drops in a single ocean.  We all experience it and it’s entirely normal.  Speaking up about death and dying will break the tide of its taboo, and the ripples of the water will only share the story and help ride out the awkward nature it beholds in its depths.  We now need to adopt this initiative of sharing and talking about the topic of death and dying in the classroom, so that the last few days are sown in somewhat comfort and acceptance, for both the patients and their loved ones.  Inspired by the likes of many Palliative Medicine consultants, such as Dr. Mark Taubert and Dr. Kathryn Mannix, I am now very much looking forward to setting up a new Palliative Medicine society, PAMS, in Cardiff, in the New Year, plus further collaborating with these inspiring people in this growing specialty that I hope to one day be a part of.

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