Difficult Decisions

My parents made their end-of-life decisions long before they needed to by signing an advance directive. Dad was lucid until the end, but things were different for Mom. After his death, she moved into a nursing home where her slow, sad decline from Alzheimer’s disease continued for seven more heartbreaking years.

During her last winter, mom developed aspiration pneumonia. In the emergency room cubicle, she gasped for breath and tugged on the oxygen mask as her eyes darted to the scrub-clad personnel who hovered around her: a lab tech drawing blood, a nurse starting an IV, a respiratory therapist getting an arterial blood gas. A red emergency cart drawer filled with endotracheal tubes was left ajar. 

“Don’t intubate her.” I handed her living will to a nurse. “Just keep her comfortable.”

I understand that medical personnel are trained to do everything possible to save lives. But sometimes isn’t it more compassionate to do less?

Mom teetered between life and death during this admission. After she had a myocardial infarction, her doctor wanted to transfer her to the last critical care bed in a hospital already filled to capacity.

“Please save that CCU bed for the 45-year-old with a heart attack, not my 82-year-old mother.”

During an upsetting time, I found myself advocating for her when years ago she had already made these decisions for herself.

Perhaps medical training is focused on treatment. Maybe liability concerns result in unnecessary procedures. Or perhaps death is perceived as failure.

“No heroics,” I pleaded.

After ten days, Mom was discharged back to the nursing home; on oxygen, unable to walk without assistance, on thickened liquids to help prevent aspiration. She was moved into the nursing home’s skilled unit because she required more care. At that point, I requested hospice services.

The facility social worker discussed feeding tube placement which might prolong her life. My sister and I decided that our mother didn’t want this. Staff was upset. I found this disconcerting.

Perhaps they struggled with their feelings regarding death. Perhaps tube feedings were less time consuming than hand-feeding.

Maybe they just wanted to keep the bed filled.

I thought patients had the right to autonomy. Has liability replaced compassion? Is the medical profession still squeamish about death?

My experience makes me feel more strongly that people should be allowed to die with dignity, and families should be supported when making difficult decisions.