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.

I do.

And that’s not a lie.

14 comments:

  1. "Mostly, they want to die peacefully, pain free, and with dignity. "

    It's certainly what I want, as a chronically ill individual. I want my medical personnel at the time to make their decisions with my wishes in mind. Not that it's always possible to have a dignified death with good medical attendance, as demonstrated by today's New York Times article about the patient-care nightmares that unfolded in New Orleans hospitals in the wake of Hurricane Katrina. I would not be at all surprised if every medical worker in those hospitals during those days was out of the profession now.

    If that Alaskan ex-weather girl wants a righteous cause, why doesn't she take up something REAL and USEFUL for people. If she can't stomach supporting reasonable and much-overdue health care reform, why not at least tackle a national policy to guide and protect medical staff doing their best in disasters and civic emergencies?

    How any egotistical politician can make hay by fear-mongering over such a difficult time in people's lives is almost beyond my understanding. And how so many Americans can let themselves be swayed by her ignorant rantings is completely beyond my comprehension. How did America the Educated post-WW2 become the Land of the Arrogantly Ignorant?

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  2. Kudos ... the only thing I can disagree with you is your characterization of this kooky Alaskan as a 'minor political celebrity.'

    I wish she were minor, but small minds have catapalted her celebrity far beyond where she deserves to be.

    It's also a shame you felt you have to step carefully to give very sound advice and counsel on the topic ... for fear of insulting the sensibilities of people who then wouldn't buy your books.

    As a satirist, I gleefully go after politicians in my first two books, but I have to tread the same eggshells with my YA book.

    Norm

    http://fangplace.blogspot.com

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  3. The scariest thing is that the lies linger longer and spread more pervasely than the truth. I have had some discussions on life decisions with my parents and have their living will and medical power of attorney in my possession. These discussions are hard but helpful

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  4. Good article, Mary. You've done your research.
    Not an Alaskan fan, marlis

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  5. Thanks for the support, my friends. I'm sure there will be some who disagree with what I've said, but I appreciate it that you took the time to comment.

    I'm not opposed to honest debate on the merits of the presently proposed health reform bill. Debate can bring about improvement where it's needed. What I hate is fear-mongering based on distortion of the facts.

    And Jeb, I agree with everything you said. I applaude your decision to make your wishes known to your doctor. I only wish more people would follow your example and remove this burden from their loved ones.

    I have always believed that the way politicians control the populace is by keeping them dumb. We spend more on war than on education in this country. I have two daughters who are teachers, and I constantly see them spend their own money on material to help educate their students. America's committment to education sucks, and that's why we have so many foolishly ignorant people in this country.

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  6. Mayhem and Magic (yes, I know who you are, but I respect your wish for privacy), I understand how hard it was for you to talk with your parents. My kids were very uncomfortable with the subject when my husband and I put our decisions down on paper in 1992 when we were only in our forties. But as we told them, no one knows when illness or an accident could strike. I gave all of them POA and LW papers. I only hope they were smart enough to consider filling them out.

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  7. Mary,

    My wife, too, is an RN, and a charge nurse in an ICU as well. She's been doing this for over 18 years. When she comes home from doing what has to be done according to law or doctor's orders, she is often drained or shaken--because of the cruelties perpetrated upon patients who should be allowed to go home and die in peace, surrounded by those who love them and whom they love. They (the nurses in her unit) sometimes refer to themselves as Hitler's Henchmen for the torture they are required to inflict upon the infirm and uninformed, or upon those whose families the doctors have persuaded to ignore the living will or DNR requests.

    This is not kindness to anyone, except to the comptroller of the hospital.

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  8. Excellent post, Mary. I've had a living will for years.

    As for the Alaskan, it's going to take lots of quiet, thoughtful, reasoned commentary such as yours to allay the fear she's whipped up.

    Thank you for speaking out.

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  9. Though I'm not so sure I like everything in the Health Reform Bill, hubby and I are really already using government health plans--Medicare and Champus.

    As for end of life decisions, that should be left in the hands of the individual and as you so eloquently stated, everyone should have something in writing about their wishes. Hubby and I both have DNR directives.

    Unfortunately, they don't always get honored. My son had one when he was suffering from multiple myeloma and he was in the hospital receiving blood, had a heart attack and they revived him. He had five long and painful days on machines until he finally passed away.

    Marilyn
    http://fictionforyou.com

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  10. Tony, I understand your wife's anger and frustration. Believe me, I've felt the same way many a time when doctors ordered senseless and uncomfortable procedures for patients nearing death, or when doctors and families disregarded the patient's wishes. As nurses, we're advocates for the patient, not for the doctor or anyone else. One of my best friends left nursing in the ICU after 25 years to work in a hospice unit because of the very things you wrote about. She feels more at peace now because she can make sure her patients get proper pain medication and are treated according to their wishes. Give my best to your wife and tell her I admire her courage and fortitude.

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  11. Marilyn, your post brought tears to my eyes. The same thing happened to my father-in-law. The doctor disregarded the DNR order and placed him on life support machines, then refused to meet with us for four days. During that time, Fred's dad was given 13 pints of blood and numerous tests. You'd have to know that Fred's dad had been in a semi-coma state for over a year, curled in a fetal position in a nursing home bed, when this happened. When the doctor finally did meet with us, he accused Fred and his sister of killing their dad if they ordered removal of life support. This was a terrible thing to say to two people who had faithfully visited their father in the nursing home and had buried their mother only three weeks earlier. But we did insist on removal of the machines, and Frank died peacefully 30 minutes later.

    Somehow or another, doctors and hospitals must be made responsible for following the wishes of their patients.

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  12. I also work in the medical field in long term care and applaud your posting. It's scary the amount of mis-information that is being passed around and believed. I have participated in my share of end of lofe counseling sessions and it's terribel to watch families strung out on nerves over a sudden medical crisis struggle to make decisions. Along with the ability to prolong life comes the responsibility to honestly face the consequences of doing so. Doctors need to address both issues equally with their patients.

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  13. Thanks for responding to my blog, Cathy. More of us in the health care field need to stand up and make our feeling known on the issue of end of life decisions. Like you said, we need to face the responsibilities of prolonging life for people whose conditions are terminal.

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