The “out of towner syndrome” refers to good intended family members rushing in to “save the day” when a loved one is dying. They believe there is more that can be done to save their loved one. In addition, they feel a sense of guilt for not being there at the beginning when certain medical decisions were made.
Such was the scenario for Gracie and her children.
Gracie was told her inoperable lung cancer was no longer responding to the chemotherapy treatments, and that the therapy was actually making her sicker and her demise sooner. She was told by the doctor she had a month to live and it was time to contact Hospice.
Gracie had two daughters, Julia and Sophie, who lived in the area and had been involved in their mom’s care. Gracie also had a son, John, who lived on the east coast and was only recently included in conversations regarding the severity of his mother’s illness. John was the younger of the siblings, highly regarded and loved by his family.
When I entered the home Julia was weeping at the kitchen table. Julia insisted that if only her mother would eat she would get better. Sophie was sitting quietly at bedside with her mother as she slept. John, who arrived a few hours earlier, was on the phone attempting to coordinate experimental treatments for his mom. The tension among the siblings was high.
As the three siblings gathered in the kitchen I started the “meet and greet” portion of my visit which included Gracie’s history and recent decline. The conversation of “how do you want her final days to be?” exposed their different points of view. Julia just wanted Gracie to wake up and eat. Sophie was ready to make funeral plans. John was ready to fight – for his mother’s life, for more treatments and most assuredly fight with me.
Patients and their families follow a pattern of grief when it comes to accepting death. Well over 40 years ago the Swiss physician, Elizabeth Kubler-Ross, broke the stereotypical pictures of death held by most after interviewing thousands of dying people. Her simple, distilled findings indicated that grief occurs in five identifiable stages:
Patients as well as family members move from phase to phase. The family members are also dealing with their own mortality as well as feelings of sadness, loss, regrets and the “burden” of caring for the dying person.
Kubler Ross’s research highlighted the enormous difficulty American’s have with death. She believed, as do I, that it stems from a society-wide denial of death itself. Once while visiting an American hospital, she asked the manager if she could speak with the patients who were dying. “There are none on this unit,” she was told. She then proceeded to go from unit to unit, floor by floor. The message was always the same, “No one is dying here.” After canvassing the 600 bed hospital, no one was dying according to the staff. Astounding!
During my first visit Julia was in a state of denial (1), Sophie was hovering between depression (4) and acceptance (5) and John smack dab in anger (2). The only thing I could do was listen to each one and give them my full understanding.
A few days later when I returned to Gracie’s home the emotions and attitudes had shifted. Julia and Sophie were making funeral plans. John, after blasting his sisters for “not caring enough to fight,” left the night prior to stay at a friend’s.
Since Gracie was in her final hours, I called John and informed him that his mother would soon pass. John arrived at the home and soon after Gracie passed with her three loving children at her bedside.