Before arriving at our patient’s home, our nurse briefed me about our 72-year-old patient, who suffers from chronic kidney disease. Sylvia* had been undergoing dialysis for more than 15 years, since 2003. A few months ago, she had her legs amputated as they had turned gangrenous. The family had recently decided to reduce her dialysis treatments from thrice to twice a week, as she seemed to be getting weaker, and it was increasingly difficult to get her to the dialysis centre.
Our nurse and doctor entered the house first and greeted Sylvia with a cheery “Good morning Sylvia!” Nothing prepared me for what I was about to witness when I walked through the door. Sylvia was lying on a bed in the living room. Although she was fairly stout above her waist, for a split second, I wondered why she was so short. Even though I was aware that she had her legs amputated, I guess I did not expect that the amputation was done quite high up, near the hip and thigh joint. Dressed neatly in a long dress tucked in at the bottom, she greeted us but almost immediately after, started rambling incoherently.
Tony*, her husband came out from his room to greet us. He was quite concerned that Sylvia was to go for dialysis that day, but she seemed too weak and too tired to attend. He asked why during the previous three days, Sylvia had been rambling incoherently more than usual. He was also concerned that she quite often refused food and drink.
Our nurse explained that without dialysis, toxic wastes and fluid would build up in her body, making Sylvia feel more tired. The fluid build-up could make it more difficult for her to breathe, but we would be prescribing diuretics, a type of medication designed to increase the amount of water and salt expelled from the body as urine.
Tony reminisced about how Sylvia, who was uneducated, grew up in a kampong, growing padi. She looked after the children as they were growing up. Today, Tony and Sylvia are proud grandparents to eight grandchildren and even prouder great-grandparents to two great-grandchildren, with one more coming their way in two months.
He then went on to bravely ask our team if Sylvia was near death. Our doctor explained that depending on how quickly the toxins built up, death could follow anytime from a few days to several weeks. Other signs Tony might observe, include a decreasing appetite, sleeping more, becoming less social, dropping body temperature and experiencing confusion. When a person is dying, their brain is still very active. However, they may become confused or incoherent at times. This may happen if they lose track of what is happening around them. We encouraged Tony, who was Sylvia’s main caregiver, to keep talking to her. Although her eyes may be closed, hearing is not impaired and explaining what is happening around her and introducing each visitor is important.
Sandra*, Sylvia’s daughter arrived shortly after. We explained the situation to her, going through what we discussed with her father, Tony. Tears brimmed in Sandra’s eyes. Although she knew the reality of the situation, it was still difficult to accept that mum was leaving them soon and she was very sad.
I was observing how our team handled the situation. They sat next to Sylvia, gently stroking her hands. They adjusted her till she was comfortable. They were firm and yet gentle when breaking the news to the family. They assured the family that we were just a phone call away. The family was grateful and thanked us profusely as we left. I felt a lump in my throat, thinking of Sylvia and her family. Most of all, I was touched by how our doctor and nurse demonstrated compassion, dignity and respect for Sylvia in her precious last days and her family when they are most vulnerable.
*not his real name
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