By Rick Banas of assisted living provider BMA Management, Ltd.
We need to start talking about death much earlier in life, Katy Butler noted during a presentation that I was invited to attend last week at the Loyola University School of Law.
Katy is an award-winning journalist and author of “Knocking on Heaven’s Door: The Path to a Better Way of Death.”
The event was hosted by the Chicago End-of-Life Care Coalition (CECC) and attended by well over a hundred individuals, including doctors, nurses, social workers, hospice and palliative care workers and elder law attorneys.
I thank Dan Kuhn of Rainbow Hospice and Palliative Care for e-mailing me the invite.
Katy’s book is, in part, a touching memoir about the death of her parents; in part, an investigative report into our medical system and into our attitudes and expectations about life and death; and in part, a visionary guide designed to inspire the difficult conversations she feels we need to have when we are not in a panic, not facing significant loss and can think straight.
We have an epidemic of unnecessary suffering at the end of life and live in a culture that does not want to talk about death at all, she noted during her presentation. We do not want to say good-bye to the people and things we love.
Three-quarters of Americans want to die at home, but only a quarter do. Twenty percent die in an Intensive Care unit at a hospital. Executing a health care power-of-attorney document and Do Not Resuscitate Orders is not enough.
In her grandparents’ generation, there was living and there was dying. Now there is a gray zone that can last for days, for months, for years.
Katy’s father “lived” in the gray zone for years, following the crippling stroke he suffered at the age of 79.
Katy is the oldest of three children and the only daughter. She lived in California, thousands of miles and three time zones away from her parents’ home in Connecticut.
As so often happens, the burden of caregiving fell on Katy’s mother and on Katy, the middle-aged daughter. After spending a decade reporting on health and human behavior, Katy found herself becoming her parent’s parent. But she was not the dutiful daughter from a few generations ago who moved in to take care of her parents.
In her presentation, Katy chronicled what happened after her Dad underwent what is a relatively simple medical procedure, the installation of a pacemaker, in the aftermath of his stroke.
What I found to be so valuable are her insights into the factors that tend to make a pathway to a natural death so difficult:
Patients who approve medical procedures rather than face the prospect of mortality.
Proud parents with stoic, self-reliant attitudes.
Wives who feel that because the husband took care of the family for 50 years, now it is their turn.
Family members who are in denial or who are unwilling to accept or face the death of a loved one.
The insistence by families that doctors do everything possible to prolong life, including “Hail Mary” surgeries.
The threat and fear of litigation.
Our piecemeal approach to medicine, and the focus on fixing one particular organ or problem.
Physicians who are trained to save life at all costs, and a health care system that views death as a failure.
A health care payment system that reimburses doctors at a much higher level for using advanced medical technology than for doctors appropriately doing less, inappropriately doing more or for taking the time to have a conversation with the patient and family so they can make a truly informed decision.
Parents who grew up believing what doctors told them.
Decisions that have to be made during a crisis by exhausted and overwhelmed family members.
Katy talked about learning what it meant when a hospital discharge planner informed the family that her Dad had to be transferred to a neurological rehabilitation center “at once.” She and her mother were in a panicked rush, looking for the closest place that had an available bed.
She also spoke about her feelings of grief, fear and confusion. Her thoughts would muddle from the desire for her Dad to be fixed to the hope that he would die. In the book, she admits that at one point in time during the ordeal she felt that while it might have been better for Mom if Dad had died from his initial stroke, “it wouldn’t have been better for me.”
She challenged those of us attending her presentation with some tough questions:
How do you want to die? What is a Good Death for you?
Where is the line between saving a life and prolonging suffering and death?
What would I as the daughter do if Mom died first before Dad?
Can a daughter express her love for her father by doing all she can to let him die?
Her goal is not to push the pendulum from over treatment to under treatment. During the Second World War, doctors were not sure if Katy’s father would make it through the night after he was injured by a German shell in the hills outside Siena, Italy. They saved his life by amputating his left arm and using a miraculous new drug to fight off the infections that were coursing through his bloodstream.
Her vision is appropriate patient-centered care that recognizes that there comes a time when the focus should be on “caring” rather than “curing.” The priorities should be on postponing disability and living independently for as long as possible, relieving suffering, supporting the patient and family, and planning a pathway to a natural death.
As Katy asked us, what is one change that you would like to see made to help ensure that this happens?
All affordable assisted living communities managed by BMA Management, Ltd. are certified and surveyed by the Illinois Department of Healthcare and Family Services. All assisted living communities are licensed and surveyed by the Illinois Department of Public Health.
“BMA Management, Ltd. is the leading provider of assisted living in Illinois
and one of the 20 largest providers of assisted living in the United States.”
What are your thoughts? Leave a comment and let us know.