Learn From End-of-Life Lessons

End-of-life issues are too complex to be well-served by a bumper sticker mentality. One side can proclaim “Death with Dignity” and the other “All Life is Sacred,” but when it comes right down to it, the long, painful trudge toward death during a lengthy illness is often messy and complicated.

No one brought that home better after last week’s column than Marjorie Horton of Allentown. I had written about the deaths of Charles Snelling and his wife, Adrienne, and Horton responded eloquently about her own experience with her husband, Jack.

Jack had been diagnosed with dementia in 2003 and for the next eight years, she took care of him at home – with the help of aides -- only putting him in a nursing home in the last three months of his life. 

Her husband had a living will that said he desired no extraordinary measures to keep him alive, including no feeding tube, but it had a caveat that she could overrule that preference if she thought circumstances warranted it. When he could no longer safely swallow, Horton had doctors insert a feeding tube because she felt he still had some quality of life. He lived for two more years.  

For the last few months of his life, he was constantly catching pneumonia; dementia had robbed him of almost all ability to function and he was losing weight as his body stopped absorbing much nourishment. “Everything begins to fail,” she said. “Everything has to be done for you, absolutely everything.”

She put him in a Bethlehem nursing home and slept there most nights. “He got bed sores, not because of anything the staff didn’t do but because when you don’t have nourishment, your skin breaks down,” she said.

His other loved ones and doctors pointed out to her that Jack had lost all quality of life. “If we kept trying to feed him, he’d just suffer longer,” she said. “I didn’t want him in pain.

“The day I said to the doctor that I felt it was time to stop his feeding was the hardest day of my life,” she said. “I knew the decision was right, but that didn't help the pain.”

He died a month later with her by his side.

Horton said she appreciated that family members and friends were understanding of her decisions and didn’t second-guess her. “They knew only I had the final power to make this very burdensome decision, but they tried to make it as easy for me as possible,” she said.

She and her husband had Medicare and other health care coverage, plus long-term-care insurance, which she said was a good investment. The tremendous cost of end-of-life care – about $80,000 over the last nine months of Jack’s life – bankrupts many middle-class families.

Horton wrote with admiration about the aides, nurses and others who provide care for those in their last days.

“There is an unseen world that takes care of people who are dying,” she wrote. “The people who helped me care for Jack were paid by the home health care agency [$10 to $11 an hour]. When Jack was in the nursing home the last three months, those who worked there told me that they often stayed with dying patients, even after their shift ended, because they didn't want the patient to die alone.”

I’m not sure death is something we can get really good at. But those willing to look beyond a bumper-sticker mentality can learn a lot from Marjorie Horton.