Power of internet helps to keep healthcare reform message alive

E-mail responses to essay published in The Washington post still flooding in two years later.

Two years after writing the most personally important essay I will ever write, the e-mail responses still come in. The power of the internet has helped a Washington Post piece live on. Advocacy websites such as www.deathwithdignity.org, www.voice4patients.com and www.reclaimtheend.org, have brought the article to more people who have direct experience with the US medical system's failures in dealing with the dying elderly.

As to be expected, many e-mails have come from those who know what it is like to be haunted by a loved one's final moments. In my mother's case, she was throwing up blood as I held her, pulling on the care facility's call cord and yelling for help. When no one came, I ran down the hall frantically searching for assistance. By the time anyone responded, it was too late. My mother's death came less than a day after she had been forced out of the hospital over my objections because the medical workers wanted to free up a bed and because they wrongly stated that Medicare, the government-funded health insurance for the elderly, would stop paying. They had taken the attitude that because she was going to soon die of cancer anyway, it made no difference how and where she died. They had also failed to send any pain medication with the ambulance when she was transferred. I rushed back to the hospital to get it as her words "just kill me" echoed in my mind.

Such e-mailers as Eileen Shingleton of Avon, Connecticut, are powerful reminders that what I wrote in May 2007 still holds true and raises issues for President Barack Obama, who this month said "our healthcare system is broken" and Congress must address the story of my mother's death, which is a story of profits placed ahead of patients, of medical professionals protecting their own and of the dying elderly being treated as if they were already dead. Unless something changes in our medical system, I fear that what happened to my mother will happen again and again.

Mrs Shingleton, who lost her husband to cancer in February 2007, wrote: "Managed care manages on without a heart and soul. With the perspective of two years it seems to me too many wrongs and cruel things can be done in the name of 'palliative' versus 'curative' medicine. Without the patient even understanding what is what when the doctor briefly mentions they will be under palliative care." Beth Reich of California looks back on her mother's last days and says: "I get so sad when I think about what happened. The images and things my mom said during that time in the hospital are forever burned into my mind. I feel responsible too, because we had to travel 300 miles to this wonderful hospital, which claims to have ranked in the top 10 hospitals in America for the last 17 years. Good God, I can't even imagine what kind of place number 11 hospital must be. It does make a person almost too scared to live [past] 50."

Joyce Gurka shared her story of the realities of fighting back: "It has been about a year since my husband died and I tried desperately to get some 'justice' with three different law firms. Each one had the same concern: Virginia is a very conservative state and I would not be able to win. Hospitals are very powerful and I could not win. If you agree to pay all expenses whether you win or not we will take the case. Horrific, wouldn't you say?"

Yes, I tried lawyers, too, but they said that because my mother was going to die so soon anyway, the cost of taking her case to trial would be more than they thought they would ever recover in damages. Again, money spoke loudest. I knew that in telling my mother's story I would in a way be sharing the tale of Mrs Shingleton, Ms Reich and Mrs Gurka and many others. But when hundreds of e-mails arrived in the days after the essay ran, dozens of them from compassionate medical professionals saying the system had to change, it was obvious the story had hit a vein of outrage. The anger has not disappeared. The subsequent e-mails have only reinforced the sense the United State's healthcare system has lost its way.

Jan Sherer took the time to write a lengthy note asking how I was doing and said: "As one who has worked in nursing homes and hospitals in Kentucky, I can tell you that what happened to you and your mother was not an isolated incident ? You were absolutely correct when you stated that no one seemed to care about how your mother died or that you lost those final priceless hours with her because someone didn't do their job. That is the worst of it. There is no one who will say they are sorry, no one to promise there will be change so this won't happen again, and no one who will admit that your mother was denied a dignified and pain-controlled death. Quite the contrary, like you, loved ones are told that all involved followed 'facility policy' or 'Medicare guidelines' or some other excuse that is void of compassion for our fellow man or woman. Instead, you were treated as a public relations problem."

The senior lobby is a powerful force in US politics, but so too are the medical interest groups. May my mother's death serve as a reminder that the latter need to always put patients first. If not, they risk their own loved ones dying the way she did. [e-mail]