“Death is not an option. Eventually it will happen to each of us,” said Dr. Clevis Parker Sr., medical director of Palliative Care for Parkview Regional Medical Center and Parkview Home Health & Hospice. “As a society, we think, 'I don't want to die,' and so people avoid talking about these things.”
One family's story
Fort Wayne resident Judy O'Dwyer and her late husband Jim did not shy away from these crucial conversations during their nearly 42 years of marriage. Jim was an attorney who specialized in estate planning and wills. Perhaps that made the discussions easier. Judy said their mutual love and respect compelled them to honor one another in life and at the end of it.
So when Jim at 63 was diagnosed with non-Hodgkin's lymphoma in 2006, the couple revisited their advance directives, making certain what they had declared years earlier still followed their wishes. The process was just as important for Judy.
“You never know who is going to go first, even if one has cancer,” she said. They openly shared their wishes and final plans with their three adult daughters, two who live in other states and one who lives overseas.
“Initially, he said he wanted a feeding tube,” Judy said of Jim's living will. A living will allows people to specify to what extent they want medical treatment, life-prolonging procedures and artificially supplied nutrition and hydration when a doctor certifies in writing they have the following: an incurable injury, disease or illness; that death will occur within a short period of time; and that the use of life-prolonging procedures would serve only to artificially prolong the dying process.
“When he found out what all was entailed with a feeding tube, he later changed his mind,” Judy recalled. “He said he wanted to be pain free. I promised him that. We found out what hospice offers, what kinds of things are available for pain.
“We brought our girls into the picture right away so they understood what the game plan was. There was no hesitation on their part, so they were behind it 100 percent.”
Many favor planning; few do it
The O'Dwyers are in a minority. A 2013 Pew Research Center poll of Americans' views on end-of-life decisions found just 37 percent said they had given a great deal of thought to end-of-life medical options, and a slightly smaller percentage said they had put their wishes into writing.
“These are not decisions that should be made when you're at the hospital,” said the Rev. Ann Lantz, Parkview Regional's director of Chaplaincy Services. She has seen firsthand the heartache when family members disagree on end-of-life decisions for a loved one. “When decisions are not made in advance, it's chaos.”
According to Indiana statue, if there is no pre-appointed healthcare proxy and the adult patient cannot make decisions, the patient's spouse, adult children, adult siblings and parents have “equal decision-making power,” Lantz said.
In most cases, “The person who lives farthest away is more likely to want to keep things going,” Parker said. Until consensus is reached, “We keep going with the traditional medical care.” Sometimes the courts decide.
“We have wonderful technology today and we can do a lot of things,” Lantz said, “but just because we can, doesn't always mean we should.” Aggressive intervention can “interrupt the natural dying process, prolonging it.”
For the O'Dwyer family, Jim's advance directives proved even more critical when in 2008, he developed dementia. The time came when he no longer could make even the smallest decisions in life, but his family knew how to honor him to the very end.
A week before Jim died, he suffered a grand mal seizure and was rushed to the hospital from the long-term care facility where he was living. When Judy arrived at the hospital, the ER doctor was going to send Jim for a brain scan, telling Judy he likely had bleeding in his brain.
“He told me Jim could die. I said, 'I understand that.' ” Judy said no to the brain scan and pulled up a copy of Jim's advance directives on her iPhone. She also had a printed copy available. A few hours later Jim was transferred to inpatient hospice care at Visiting Nurse. Six days later he died peacefully, his wife and three daughters at his bedside.
Remembering her promises to Jim, Judy said, “It was a dignified and lovely way to die.”
Jennifer L. Boen is a freelance writer in Fort Wayne who writes frequently about health and medicine. This column is the personal opinion of the writer and does not necessarily reflect the views or opinion of The News-Sentinel.
Resources to helpIndiana law specifies four advance directive forms: a life-prolonging procedures declaration; a living will declaration; an out-of-hospital do not resuscitate declaration and order; and a physician's order for scope of treatment (POST). More information and forms are available online at www.in.gov/isdh/25880.htm.
Resources are available to help families begin crucial conversations about end-of-life decisions. Among them are:
The Conversation Project, www.theconversationproject.org
National Healthcare Decisions Day, www.nhdd.org
The National Institute on Aging, http://tinyurl.com/n9llpru