When someone dies, the survivors eventually encounter an unwelcome silence when her name is mentioned. The door slams gently, quietly, but definitely, shut. Even close friends tire of hearing about a wound that will not heal.
It's a day that had to come, and I am fortunate it took longer than I had expected. When I was still in practice as a psychologist, I worked with widows and bereaved parents whose friends lost patience after six weeks.
It is not only the "last days" of the deceased that are out of bounds, but the rest of her life as well. Happy times. Anecdotes that would be socially acceptable if the person were still alive.
Talking about the deceased, even if you are careful not to talk about her actual dying, is a painful reminder to others. Preventable deaths are even more difficult to discuss. They remind us that none of us are immune to lethal mistakes.
My daughter fought to live. Both she and I spent years advocating for appropriate health care for friends, family, clients, ourselves. Our experience was not enough to save her life, however. She died in a local ICU where she had been successfully treated for swine flu. She died of a hospital-acquired infection that lodged in her spine, leaving her in excruciating pain and paralyzed from the chest down for the last two weeks of her life. The cause of her death was found at autopsy.
Thus, I chose a path many others have taken after a preventable death: the families of Flight 3407, Mothers Against Drunk Drivers, 9/1 1 families, parents of murdered children, parents who distribute pool alarms after a toddler's drowning, who donate CO monitors after losing a teenager to carbon monoxide poisoning, who push for laws moving ipecac from pharmacy shelves to behind the counter. Many others.
I have joined forces with many who have lost friends and family members to hospital-acquired infections, have become a participant in Consumers Union's Safe Patient Project and work to make hospitals safer places to be sick. (There's a website, www.safepatientproject.org.)
Patient safety in hospitals is a major public health concern. Recent research reports nearly 200,000 preventable hospital deaths occur each year in the United States. Nearly one-third of women who die before age 75 die from preventable causes.
Joe McCannon, senior adviser to the administrator of the Centers for Medicare and Medicaid Services (CMS) recently addressed participants at the first of six webinars on patient safety sponsored by CMS. He said:
"No one would argue at this stage that the health system isn't rife with harm and complication and frustration. And we have several major studies in the last 12 months to reaffirm that position. On the other hand, we also observe a number of striking examples of powerful success in individual facilities and systems. Places that are driving infection rates down to almost 0 or pressure ulcers down to 0, places that are introducing reliable care transitions in such a way that patient satisfaction is going way up and unnecessary readmissions are going way down. Just scores of examples."
No single story or individual's efforts can make hospitals safer for patients. Revealing patients' suffering and damage to families and communities as a result of mistakes can strengthen a community's determination to improve patient safety in local hospitals.
Advocacy for improved hospital care is a community task. Unless there is a culture within local hospitals to minimize errors, to report mistakes without recrimination and to address (not cover up) mistakes, no amount of personal advocacy once someone enters the hospital is sufficient to enhance patient safety.
My daughter was on a ventilator in the ICU. Everything she "said" is found in her notebooks and the dozens of emails she wrote while she was there. Repeatedly, she said she wanted to be heard.
So I will try not to make a pest of myself, but I will keep talking in places where I may be able to do some good. I may not mention her name, but this preventable death, like so many others, has given me a job to do.