Grandpa’s end-of-life journey was distressing for the entire family. We didn’t know his wishes. In fact, there was a lot we didn’t know. During the early stages of dementia and after grandpa’s strokes, we brought up the subject of planning for the future, but he would get upset and so we changed the topic. When he could no longer safely live independently, he moved to a nursing home. With time, his symptoms grew worse. He could no longer recognize us, was confined to a wheelchair, had difficulty swallowing and rarely communicated with words.
During grandpa’s last year of life, he had several visits to the emergency department. During one of the earlier visits, an emergency doctor approached us. Grandpa was ‘full code’ which meant that the doctors would do whatever they could to keep him alive. If he stopped breathing, they would perform chest compressions and CPR. CPR would likely break his ribs and grandpa would be in tremendous pain. “Had we considered this?” asked the doctor. The answer was no; we had no idea. All we knew was that CPR was lifesaving. We agreed to a Do-Not-Resuscitate order. During subsequent visits, as Grandpa’s condition worsened, we were asked to make decisions about antibiotics, oxygen, feeding tubes and other invasive interventions to keep Grandpa alive.
Grandpa had pneumonia, likely due to his difficulty swallowing. When we placed a spoon of apple sauce near Grandpa’s lips, however, he would readily open his mouth. How could we stop feeding him, even if there was a high risk of choking? If we chose comfort care, which precluded IV fluids/nutrition, wouldn’t we essentially be starving Grandpa to death? Had we any right to make these decisions? As a family, we were conflicted and confused.
Grandpa passed away in a hospital palliative care bed. He left us in the middle of the night. None of us were by his side. Grandpa was like that – independent, private and reserved. I think he wanted it this way.
It meant so much to be present with Grandpa along his journey; to gently squeeze his hand, smooth his furrowed brow, swab his dry mouth and reassure his gaze that he was surrounded by love. I am forever grateful for this privilege. But I have my regrets.
I wish we had tried to creatively seek from Grandpa his wishes; perhaps we would have been more comforted in our decisions.
I wish the family meetings with the nursing home interdisciplinary care team had taken place as Grandpa’s ED visits became more frequent, we might have better anticipated disease progression and considered goals of care.
I wish we had been introduced to a palliative care philosophy earlier on; Grandpa would have suffered less.
I wish the nursing home had the capacity to provide adequate care for Grandpa to die comfortably, we could have avoided burdensome hospital transfers.
I console myself with the belief that during times of struggle and bitterness, we truly appreciate the sweetness of life. I hope to do more to inspire change.