by Janie Brown, RN, MSN, MA (Psych.) Executive Director Callanish Society, Clinical Nurse Specialist: Oncology
Dr. Shona MacKenzie took a deep breath before she entered Bill’s bedroom. She had met the family just five days earlier and had found herself waking up each night since, worrying about them. This was her second visit to see Bill at home.
The diagnosis of ALS (a fatal progressive neuromuscular illness, also known as Lou Gehrig’s disease) struck Bill three years before he planned to retire from the company he founded right out of high school. His daughter Elizabeth had joined him in the business after doing her MBA, and the family business succession plan had been well underway.
Bill’s disease had progressed rapidly over eighteen months and by the time the hospice home care team was consulted, he was almost completely paralyzed and had chosen not to be artificially fed or ventilated. His swallowing reflex was weak and his affected vocal cords reduced his voice to a whisper.
“Good morning Bill,” Shona said, in a cheerier voice than she had intended. Anxiety had a way of lifting up her voice.
“There’s no point dragging this out, Dr. MacKenzie. I want to die,” Bill whispered, holding the hospice doctor’s gaze with a command that required an immediate response. Before Shona had the chance to respond, Bill’s daughter Elizabeth jumped out of the armchair next to the bed and leaned over the bedrail. “I’m not ready, Dad. I need you here. I’ve too many questions still about the business.” Her voice was tinged in panic.
Shona leaned in close from the opposite side of the bed. “You are dying, Bill, and because you are not eating or drinking any more, it won’t be long—likely a week or two at the most.”
“That’s too long. I’ve had enough. Give me something to take me out of this misery. Please,” Bill pleaded.
Janie Brown is the Executive Director of the Callanish Society, a nonprofit organization she co-founded in 1995 for people who are irrevocably changed by cancer, and who want to heal, whether it be into life, or death. She is currently working on her first book.