I was asked by medical students, what was my favourite part of working in Palliative Care? I instantly replied, having a laugh with my patients and their families. Even though a person may be dying, they hold on strong to their sense of humour as it still feels good to laugh. To see the lighter side of even your own end of life is something that I have seen often. People still want to feel included in life and still want to have some fun. To be treated like a normal human being. My favourite thing after 22 years of medical practice is having a good laugh with my patients.
Last Friday, we had a great time joking around, whilst getting to know each other better. Pain and nausea had settled after a few days of hospice work. It was good to meet him properly for the first time, with his quick wit in full flight. I had trouble keeping up with him, a quip every other minute, followed by puns. Two proponents of Dad Jokes performing sit-down comedy, both riffing off each other’s comments, and enormously enjoying each other’s company. Each the perfect audience for the other. Our companions in the room were briefly forgotten, but we didn’t want them to feel lonely and started including them in our fun making. My team mates were included and then my comedy partner’s family. There were no taboo subjects as we launched into our roast of our room-mates.
I found out about his favourite football team, and that the rest of the family supported their arch rivals. Interesting family dynamics on game nights I’d bet. Favourite food stories were shared, including of the traditional delicacy that Robbie Burns once wrote an ode to. I mentioned that I had never had the pleasure of eating deep fried pizza before, and that I would try it when I visited the highlands in the future.
We then talked about the serious matter of where to from here? My partner in comic crime wished to return home. His family and my team were concerned that this might be difficult, but that we would give him the opportunity to work with our therapists over the next days to see if he could get home. He had always been a strong man, had outlived many prognostication attempts in the past, some by 15 years! This time was different though, he had started falling over. Loss of balance is a bad sign.
The human body is able to maintain balance of so many processes, this is usually automatic and works almost like magic. We maintain our fluid balance, the balance of electrolytes, temperature, and our walking balance. Major illness can wreak havoc with our in-built balancing mechanisms and things go awry. People end up falling over in all sorts of ways. The large old bruise on his left elbow told a story. If it wasn’t for the towels drying on the rail the other night, he might have badly injured the back of his head. That’s why his beloved wife was so concerned. He had lost a lot of weight, but he was still a solid block of Scots Pine. I would struggle to lift him up by myself.
Everything had looked promising on Friday morning, but in palliative care settings we have to remain flexible, as things can change in an instant. When I returned on Monday, he was unable to crack any funnies, pain and nausea had over-ridden his cheeky wit. His brow was furrowed, he hadn’t slept much at all. Medications were adjusted to try to calm his discomfort. The next day he had not improved, which frightened his family. The rock of the family seemed to be slipping under the waves, his sons’ biggest hero was in great peril. His younger son had researched online and asked about medication side effects. From my experience I was worried about an acceleration in the disease process, something that I had seen too often. We agreed that we would look for any possibility of reversibility to the best of my ability. Everything was uncertain and I could give no guarantees. I drew my line in the sand clearly for all to see, no matter what, I will not let him suffer.
Test results came back confirming the suspected disease rampancy, with busted bone marrow, a picture of poor health. The physical strain on his body affected his mind and clarity became a fleeting visitor in his room. The internal storm of delirium – at times lucid, at times confused. A major change in our strategy was required. Different medications were trialed in combination for the treatment of pain, nausea and delirium. Many discussions with the family members all of whom shared deep concern, but showed it in varying forms. The maelstrom of emotions swirled in and out of the room. A first time for the family, but one of multitudes for us hospice staff.
Please keep him as clear as possible, as awake as possible.
It took two days before our comedy star returned in all his glory. The pain and nausea had been partially suppressed but his personality would not be caged any longer. He was able to make us laugh again, and thus I was able to ask him important questions about what he wanted. I thought that the scheduled radioactive treatment would provide no benefit, but would only cause harm. First no harm, barred him from having the treatment in my mind. He agreed with me.
I can make you more comfortable but it likely will make you sleepier.
That’s good son.
I don’t think you have much time left.
I know son.
I’m going to get you through this, and your family too.
He became more comfortable though less conscious. I explained that as a person gets closer to dying that they become less clear in their thinking and they become sleepier. That is Nature or a higher power sparing the person from the full experience of the dying process, as it might be unpleasant. This happens often in our hospice patients. His wife said that this was a first for the whole family, that their relatives had died back home but that they had not been there to witness any of the deaths. One of the ultimate prices that the immigrant might pay, the risk of not being there when you are truly needed. The danger of missing out on the final goodbye.
This Friday, I thought would be his last, as I watched the long pauses in his breathing. One, one thousand, two, one thousand, three, one thousand, four. There was no tightness in his body or face to indicate discomfort. I explained that he could still hear us, but that he was having trouble responding to us. We talked about his favourite musicians; Leonard Cohen, Billy Joel, Rod Stewart, Frank Sinatra, Dougie MacLean. A lovely moment as Dougie’s Caledonia was played and his wife sung along, “now let me tell you that I love you, that I think about you all the time…”
He was dying and I did not want to intrude on precious family time. I took his hand and told him that we would look after him well, and reiterated that we would get him and his family through this. That he would be able to head home soon, to see Mungo’s for himself again. I said good bye and turned toward the door.
“Wait, he wants to say something to you.”
I rushed back to his bedside.
His eyes fully open, he reached out for my hand.
His blue eyes pierced mine, retinal eye-lock achieved.
Shaking my hand firmly he said,
If I hadn’t been for my medical mask, my jaw would’ve bounced off the floor, with a dull splash.
Chills went down my spine, as my pupils constricted, and I stifled a gasp.
His eyes closed and he went back to sleep, as I staggered out of the room.