A survey of Californians in 2011 found that more than half have not talked about their end-of-life medical wishes. Fewer than a quarter had written down their wishes.
But everyone will have to confront these issues at some point, for themselves or a loved one. Many people already have experienced the difficult conversations or the impossible choice.
Here, the community is sharing its stories.
We invite you to share your experiences with end-of-life decisions using the forum below.
Tell your story using the form below — please be thoughtful; the limit is 500 words.
All stories must be accompanied by name, city of residence, email address and phone number only for our use in contacting you. If your story is chosen for publication, you will be identified by first and last initial and home town. inewsource may edit submissions for clarity and length.
My late mother was on ventilator(s) twice at the end of her life. The first time, she was treated in an acute unit for almost a month, and then stepped down to another facility, where she finally was well enough to get off the ventilator and to breathe for herself.
Several years later, as her health deteriorated more, she ended up on a ventilator at a subacute facility, after being in a hospital’s ICU for several weeks. She stayed on a ventilator and feeding tube for two years, unable to walk, swallow, or care for herself. It was a nightmare, but I was thankful for the all the silver linings I found along the way — the caretakers that were kind, compassionate, and well-trained. We made life-long friends of other families who were going through similar situations. In this subacute facility, well-trained nurses and staff were rare among all the other employees, but the wonderful hospital chaplain would visit frequently. My father and I relied on well-trained staff to lessen the discomfort of our mother. However, due to staffing issues, one of us had to be at the bedside to find help when the ventilator alarm would go off. We would walk through the ward, looking for immediate help.
One will wonder how family members could endure watching this horrible situation for such a long time. Mine was a case of legal opposition and, as the daughter, I had no rights. My mother had named my father, her husband, as her Attorney-in-Fact for her health care decisions. Unbelievably, she also signed an Advance Directive (AD) that said she did not want extensive life-sustaining treatment! The staff was legally bound to follow what my father wished, even when it was different from her AD.
My mother was conscious about half the time during the first year of being on a ventilator/feeding tube. As she deteriorated, she was not conscious. The staff did show my father how badly my mother was doing, but he just couldn’t unplug her. Finally, he agreed to my bring in the hospice team, and with medications to ease the transition, she left us peacefully when the power was turned off.
— S.S., San Diego area