Thursday, August 27, 2009
Truth or Consequences, Part Two
In my last blog I wrote about a panel presentation at Killer Nashville that I participated in along with Linda Petrilli Duncan, Colleen Brogan-Raasch, and Dr. A. Scott Pearson. All us work in the medical field, and along with members of our audience, we universally decried the lack of accuracy in some medical mysteries and medical TV shows.
We agreed that because screenwriters are restrained by TV time limits, it’s understandable that they compress facts in order to make them fit a program’s time slot. Likewise, we agreed that fiction writers have a right to build on reality, sometimes taking events beyond what is normally credible in order to create suspense in their novels. Despite these caveats, we felt that professional writers have a duty to research medical facts so as not to present information that is obviously incorrect or misleading.
In my blog I asked if the same could be said for someone who blogs on the Internet. Can a person claim immunity from accuracy when expressing an opinion on medical matters that could possibly influence hundreds or thousands of people? Does this person have any less duty to research the facts than a novelist or screenwriter?
I don’t think so. No one writes a blog solely for his own personal amusement. Blogs are tools used by individuals to convey their opinions on matters of importance to them. They are meant to be read by others who consider those same matters important to them. Thoughtful bloggers form opinions about subjects after carefully examining all the facts related to those subjects. Less thoughtful bloggers – or those driven by something other than the truth – form opinions first, then twists the facts to fit their opinions.
There are consequences associated with the spread of false or inaccurate information via blogs. When that information has to do with medicine and matters of health, the consequences can affect us all. For example, consider what happened recently when a minor political celebrity with a flair for writing turned her imagination and disregard for facts to pressing medical problems. By constantly equating end-of-life counseling with “death panels” on her blog site, she not only resurrected her flagging political career, but also frightened thousands of uninformed citizens into believing their government was out to get them.
Oh, oh, you’re saying. Mary is straying into dangerous territory here. Mystery writers who want people to buy their books should stick to nice, comfortable blogs about nice, comfortable subjects. They certainly shouldn’t offend anyone by blogging on controversial subjects, such as the unfounded assertions of a certain resident of Alaska.
If I was only a mystery writer and had no other interests in my life, I might agree with you.
But forty-one years ago I stood in an assembly of my peers and repeated the solemn words of the Florence Nightingale Pledge. As a new graduate nurse, I swore to “devote myself to the welfare of those committed to my care”. By swearing that oath, I committed myself to defending the right of my patients to receive truthful information regarding their medical problems and care, including information on end-of-life decisions.
Over the years I’ve spoken with many patients and their families regarding Living Wills, Power of Attorney for Health Care forms, and hospice care. By rights, their doctors should have discussed these matters with them long before their deteriorating medical problems drove them to the Emergency Room where I worked. But as one doctor told me, “I’m not good at that. I leave that to the nurses.”
One section of the currently proposed Health Reform Bill (HR 3200) would have lent monetary encouragement to doctors to discuss these end-of-life rights and decisions with their patients. But an Alaskan politician saw an opportunity to further her political ambitions by inciting fear in the populace with a lie, and that changed everything. Congressmen who voted overwhelmingly for end-of-life counseling in the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (Public Law 108-173) acted on the fear they saw in their constituents. They quickly aligned themselves with the Alaskan, conveniently forgetting how they’d voted for President Bush’s Medicare bill only six years ago. On August 13, 2009 they removed end-of-life counseling from consideration in any health care reform proposal.
The Alaskan who gained her state office by receiving 99,610 votes – a number smaller than the population of many towns or suburbs – must be gloating today. She not only cowed into submission the entire Congress of the United States of America, but also successfully managed to kill a good opportunity for people to learn how to take control of the final days of their lives.
This same Alaskan is now decrying the cost of the proposed health reform on her blog. I wonder how she feels about the costs related to TEFRA, the Tax Equity and Fiscal Responsibility Act signed into law by President Ronald Reagan in 1982 and still in place today. Former Reagan adviser Bruce Bartlett said that “TEFRA raised taxes by $37.5 billion per year" and "according to a recent Treasury Department study, TEFRA alone raised taxes by almost 1 percent of the gross domestic product, making it the largest peacetime tax increase in American history." Nevertheless, among its many mandates, TEFRA made Medicaid payments available for the care of children with disabilities – including Downs Syndrome – regardless of their parents’ income.
I have no idea if the Alaskan in question has taken advantage of this government-run health care program for her child. I do know that many parents of children with Downs Syndrome are grateful that, despite the cost of the program, Congress passed TEFRA two decades ago. Any financial help they can get in caring for their children is deeply appreciated.
Likewise, when I speak to patients and families about their right to accept or refuse feeding tubes, mechanical ventilation, and other forms of invasive therapies that prolong the dying process, they inevitably respond with gratitude. Patients want to know their options. They want to have their wishes known and respected by their doctors, and they don’t want the difficult decisions left to family members who may not agree on end-of-life care. Mostly, they want to die peacefully, pain free, and with dignity. All of this is possible if they have Living Wills, Power of Attorney for Health Care forms, and understand what hospice is able to provide for them both at home and in a formal hospice setting.
The Alaskan would probably call me a member of a “death panel”. I call myself a responsible member of the nursing profession.
But then, she probably doesn’t have a Living Will or Power of Attorney for Health Care form.
And that’s not a lie.