Today’s post is a departure from the tone of my usual posts and I apologize in advance for the bleak themes of death, dying and end of life care planning. I was privileged to have had a number of conversations this week with a family whose story and voices have had a profound impact on both my professional and personal selves.
I sometimes find it easier to process things when I write about them as short stories. It’s somehow easier to define my feelings this way. The following is a fictionalised account of recent events in my life that has been written for a personal blog firmly from my perspective and with a readership I deeply value and am grateful for. It is not intended to be anything beyond this. I know practically all of you know this already but because I don’t often write about my work here, I felt it needed to be said.
Thanks for reading this far already!
It was your posture that I noticed first when we met. You might have been in your pyjamas and dressing gown (both perfectly ironed and immaculate) sitting on a vinyl covered hospital chair but your posture was perfect. There was this sense about you of a person who had lived their 90 years calling a spade a spade as well as ‘keeping calm and carrying on’ whilst being beautifully turned out at all times.
Then we began to talk and those beautifully modulated sentences flowed just rolled off your tongue in response to my questions. It was yet another chest infection. After a couple of good years during which you’d managed to keep out of hospital thanks to a winning combination of antibiotics and inhalers. But one’s luck only lasts for so long with a chronic medical condition. You caught that bug that was going around your hostel, lost your appetite and then your energy which made everything worse which lead you to me via the emergency department at around half eleven on a Thursday night.
All the signs pointed to you making a full recovery from the infection. Your blood tests were okay, your latest chest X-ray was only a little worse than your previous one and we both just felt it in our waters (that last one’s probably the sign with most positive predictive value). And you did. Your cough improved, so did your tests, colour returned to your cheeks and you even ate a full hospital breakfast that featured corn flakes in a plastic packet and cold toast.
I met your daughter at your bedside and she was you all over again. The eyes, the gestures, the way she spoke. I got along with her just as well as I did with you. As I turned to leave your bed space one day, she called out to you that she was ‘off down to the chemist to get your shampoo’ and followed me out of the room.
‘May I have a word?’, she asked as I turned toward her. ‘Of course’, I replied. She continued, ‘Mum and I have been talking and she wanted me to bring something up…’.
About dying and how you wished it to happen. I had no idea how much these last couple of years had taken away from you. Nursing your husband through his illness and then being at his bedside in those final days. The cascade of new diagnoses and complications of old illnesses that followed for you. More specialists, more tests and more medicines that paradoxically left you with less energy and less zest for life.
Your daughter told me of the woman you once were. The lady with a wardrobe you organized by the season, even in the tiny confines of your room at the hostel. A lady who greeted each day with perfect make up and hair. A lady who was always out and about. A lady who loved her food, good music, reading and who always had time for the weekly gossip magazines with her mid morning cup of tea.
You’re no longer that lady. You know it and your daughter knows it. You were there when the love of your life died. And now you’re ready to join him once again. You’re ready to die, been ready for a while actually and you don’t want the end to be prolonged. So your daughter discussed with me that you’d like this hospital admission to be your last hurrah. That you’d do everything that was needed to get you back to your room at the hostel one last time. Should anything happen medically after you returned, your wish would be for a completely palliative approach to its management. I thanked your daughter for having this conversation with me and we agreed that I’d meet you both to discuss your wishes formally.
We met at your bedside the next day and I could swear that there was the hint of a sparkle in your eye. We decided that the meeting room up the corridor would be the most appropriate place for us to have our discussion. I went ahead to prepare the room and you walked the 20 metres without one faltering step or once stopping for breath. You had a mission and it was going to be accomplished come hell or high water.
It was probably one of the most moving discussions I’d ever had about planning for the end of a patient’s life. Those eloquent sentences of yours conveyed your argument with logic and the minimum of emotion. You’d thought about your words for months. You were there at your husband’s side when he slipped away. You felt his relief that his suffering was over and that sense of peace that comes with a death that is accepted by all of those that love that person more than any words can describe.
You thanked me at the end of our meeting. For hearing you out. For being blunt. For nutting out a plan for your wishes to be both heard and respected. You looked so happy and free as we concluded our meeting.
But actually, it was you I needed to thank. I won’t ever forget your words, your fearlessness or that sense of calm that radiated from you as you spoke. You showed me how little I understood of the words ‘quality of life’. That to understand what it means to someone requires me to ask them and not just make a generalisation based on my own presumption of the person I see in front of me.
