My first ever guest blogger (drum roll please!) is my friend Caroline Belfanti whom I have known since primary school. She is a Clinical Nurse Consultant in palliative care.
Over lunch recently Caroline shared a piece she had written, about a harrowing and uplifting visit to a patient who had arranged to die at home.
Not only is this narrative a glimpse into the work of a medical professional who deals with death on a daily basis, what struck me was Caroline’s ability to ‘tell it how it is’ –to relay a difficult circumstance with feeling and candour, without any embellishment or over sentimentality. As I read, I felt I was in the room with this family saying goodbye to a much loved father, brother, son, son in law and husband.
Thank you Caroline for allowing me to share your heart rending story on my blog.
‘As I approached the clad house under threatening skies I prepared myself for the hours ahead. The path had been modified for wheelchair access, the garden overgrown and children’s’ toys strewn about: a set of swings, a trampoline and a bike. What struck me when I entered the house was how very much alive he was. Today his BIPAP (positive airway pressure ventilation) was being withdrawn. He’d been living with Motor Neurone Disease for 5 years and only had eye movement left.
Choosing a day to depart this world is more problematic than entering it. You can pick a date for a Caesarean or induction. However departing from the comfort of one’s own bedroom is an ethical and legal mine field. This event usually takes place in a clinical setting. His regular nurse being away added another dimension to the situation.
There was some apprehension amongst our clinical team regarding who was going to accompany the consultant to the house and if the patient and his wife would have confidence and trust in a new nurse, me.
I arrived at 11 am and introduced myself. His wife asked if the doctor was with me. I explained that I had been unable to make contact with him that morning and reassured the family that he would soon join us. I suggested that if for some unforeseen circumstance he was unable to attend, another consultant would attend in his place.
At this point I was feeling rather awkward and uncomfortable and wondered how he and his family were feeling; this day had been planned for some weeks now. He then said “he (the doctor) must have a holiday hangover and I hope he realises this is a matter of life and death”
I was moved by his ability to express humour in such a situation. The juxtaposition of imminent death and humour felt surreal. His 6-year-old daughter showed me with great excitement her first tooth that she had recently lost. Then very pragmatically she announced that “daddy is going to die today and we have said goodbye”.
I needed to steel myself and wondered if I was going to be able to manage the hours ahead. Music was playing and he was giving sage advice to the 6 year old. “Take risks my beautiful girl but make sure they are measured, travel and have fun, stay safe….”
Life in the household was continuing in the background; grandparents occupying both children, his wife adjusting the position of his hands and feet, the kettle on, tea poured.
It was through circumstance that I found myself at this juncture: witnessing intimate conversations and interactions at such a significant time for this family.
The wife’s’ phone rang and it was the consultant apologising for running late. I sensed the relief in the house. We were back on. He arrived a short time later. A priest and a De La Salle brother had also appeared by then. They waited quietly for their cue to anoint him. The consultant questioned the patient gently to ensure that he was still unequivocal in his decision. We discussed the process and doses of medications, checking that everything was charted correctly. The syringe driver was loaded and medications drawn up in readiness.
His wife wheeled him into the bedroom and got him comfortably positioned into bed. In the short time I had been there observing, it was obvious what a capable woman she is, having cared for him immaculately while dividing her time between their 2 small children and keeping a house in order. The professional staff held conversations with his parents in law while everyone waited for the next cue. There was an air of sadness, but also peace. The supporters agreed what a strong couple he and his wife had been.
Two hours passed and we entered the bedroom. His wife expressed their deep gratitude for allowing the procedure to take place at home. It meant a great deal to all of them to fulfil his wish. I inserted the subcutaneous line and administered the loading doses of Morphine and Midazolam and started the syringe driver. Rosary beads had been placed in his right hand. How long? This question had been asked numerous times during the day. It was uncertain.
The children and family members came in and out of the room during the course of the afternoon. His wife held his hand. When the consultant advised that he was in a deep sleep the family – including his father and 3 siblings – were called and the BIPAP turned off.
We all bring our own stories and history with us. I had a deep empathy for his siblings as they watched their dear brother slip away. I witnessed the grief that creased his father’s face as he watched his son leaving, as my own father had watched his son. There was reminiscence and joy for the life and the contribution he had made to this world. And sadness for their overwhelming loss. He left quietly to the strains of Somewhere Over the Rainbow.
When you take time to pause and empty yourself of personal agendas and expectations you are open and more receptive to what a patient has to give to you, it’s not just about what we have to offer them.
On this grey wet day in Spring I witnessed a death with peace and dignity and the love and strength of family.’