Things Are Never As They Seem and yet They Are Always As They Seem
What this title suggests is that we have to look between the lines and live between the lines. Life is almost always terribly complex. Readers of this commentary may feel convinced that the business model does not fit healthcare, so I need not preach to the converted. However, you may not be familiar with all the intricacies imbedded in this system, and given the recent decision by the second largest HMO to finally heed the wishes of the doctor, the landscape becomes very murky indeed. Should doctors be permitted to give pain medication with the DEA looking over their shoulders? If they do not ease the patients' pain then they can be sued for failing to treat pain appropriately.
Let's examine the Roseburg case. The Oregon Board of Medical Examiners accused Dr. Paul A. Bilder a 54-year-old pulmonary disease specialist, of unprofessional or dishonorable conduct and gross or repeated acts of negligence. Between 1993 and 1998, according to the board, Bilder: "Treated an elderly man who was dying of cancer and in pain with 'substantially inadequate amounts of pain medication,' contrary to a hospice nurse's request for stronger pain drugs and anti-anxiety medication." There were 7 other cases where he refused to give morphine and other narcotic painkillers. The Oregon Board of Medical Examiners has made it a point in recent years to educate doctors about the need for adequate but appropriate pain control. Board officials speak on the topic at conferences and serve on a statewide task force on pain issues. This new approach is in contrast to its hard-line treatment of doctors who used to over prescribe in the past, particularly in the 1980's during the national "War on Drugs." The whole subject of pain control raises legal issues in the light of last month's ruling in the Oregon case, the first ever to discipline a doctor for under treating pain. So, now the American public has to decide whether the doctor is allowed to treat, under treat (with the DEA looking over his or her shoulder) or even over treat and cause the unintentional death of the patient.
As for the private sector, one has to wonder about a system that suddenly does an about face as UnitedHealth did on November 9th and will no longer try to second-guess the Doc. This was a no brainer, but why did it take so long? The No. 2 U. S. health insurer will stop the practice as of Tuesday. The CEO said in the future "We're not making a decision on whether they (the patients) need a procedure, it's whether or not they're covered." The whole scheme is probably a public relations ploy to turn around a very negative image of HMO's. There remain doctors who still need the approval of bureaucrats. As you would expect these involve the whole area of mental health.
The big pharmaceutical companies pay more for advertising than for R & D (research and development). A USA TODAY survey found that the most popular drugs often cost two, three, even four times as much in the U.S. as in other industrialized nations. After her mastectomy four years ago, Ruthmary Jeffries got a tip from her oncologist. Buy prescription drugs in Canada. Every industrialized country - except the U.S.-imposes some form of price controls on prescription drugs. As the lone holdout, the United States pays the price, literally.
Subtle and non-so-subtle coercion
The whole question of public relations and buzz words characterizes the past 15 or so years. How many times do you run across "good death" "a bad death" or names of organizations such as "Death with Dignity"? What do these words really imply? In the L. A Times October 18th a reporter tells the story of an 81 year old woman who "died well". The patient and her husband were forced to sell their home of 46 years and move into a "board and care home" (whatever that is) to be near their son and daughter-in-law. I can't tell if this reporter is naive, serious, ironic or just crass. The story continues, "In the patient's last nine months of life, they (female patient and her husband) formed a regular snail's-pace parade to their son and daughter-in-law's for dinner. Finally, the best part, odd though it sounds: _____' condition worsened, as the Parkinson's continued its slow assault on her muscles and the leukemia kept her from fighting off infections." This reporter subtitled her article "Health: Alternatives to hospices or painful, futile hospital care slowly emerging, but there's a long way to go." Obviously there was no understanding of the hospice movement or what it tries to do, let alone forcing this couple to sell their home after 46 years to foot the medical care.
Dame Cicely Saunders is considered the world's foremost expert in the care of the dying. In 1967 she opened St. Christopher's Hospice in London, the first research and teaching hospice. Now at 80 she till goes to work every day and lives around the corner from the hospice. When she was in the U.S. in May 1999 she told the N Y Times, "What I have learned over all these years, especially of what people can do at the end of their lives if they have good care, makes me wary of a quick way out. I think it denigrates people into just being an incurable illness, and I think it is socially, really very dangerous."
You might have heard other words being tossed around i.e. (1) hospitalists (2) Patient Self Determination Act (3) living wills (4) health care proxy, etc. What do they mean and how do they apply to me? The PSDA (Patient Self-Determination Act) became effective December 1,1991. It requires health care providers to maintain written policies and procedures that will educate patients and the public as to their right to execute advance directives and to direct their post-autonomous medical care. As a federal law, jurisdictional constraints require that the PSDA apply only to institutions receiving Medicaid and Medicare funds. Nevertheless this includes most providers. Many patients have serious misconceptions about life-sustaining treatments, either because their physicians did not take the time to explain things clearly, or because they have lost trust in the patient physician relationship once so sacred. This is a vast multi cultural society with as many traditions. Legal decisions must be examined within a defined cultural context. Given the cherished diversity of U.S. citizenry, it is only logical for differences to exist in the conceptualization of life, personhood, health, illness and death. These views in an ideal world would be discussed fully in the hospital with the patient, physician and family and patient advocate. This does not happen and there are countless misunderstandings, to say the least.
Take the case of Mr. D, a 64-year old African-American with metastatic prostate cancer. Here are some excerpts from the patient's narrative re: encounters with the healthcare system. "Yes, yes, yes, I've told them. It's already been five times and yet they keep sending somebody new with one of them phony smiles to as, 'If your heart were to stop beating or your lungs were to stop working, would you like us to keep you alive with machines?' 'Yes, doctor' I'd reply, trying to sound as upright as I could, 'I sure would' And then wouldn't you know it, bam! They'd reach down for plan number two." "The first one up was that young child-in-training. The intern. He seemed all right at first, but he sure did bring out my ugly side. I've got grandchildren who look older than him and they might be in grade school, but at least they know enough to address me with respect. Shoot, even my enemies call me Mr. D. None of that first name, 'Marvin' stuff he keeps giving me. But I guess that's the way it is nowadays. People lack home training. I hear that they give us old, colored folks to the young ones, so they can get some experience in before moving on to real patients." Mr. D. is regarded as a "difficult" patient. Entries describe him as "manipulative and passive aggressive." A social worker comments that he is "not focused on his cancer and seems out of touch with his emotions." There are many ethical and cultural difficulties in this case. Coercion masquerading as choice, cultural insensitivity, mistrust and lack of meaningful choices are just a few of the problems in modern healthcare. All these problems are worse when it comes to poor and illiterate and minority patients. These groups tend to believe almost any prognosis given by doctors. They will be heavily influenced by professional opinions, and will have no way to judge whether the opinions are wrong, biased, influenced by finances (that is HMO's and their bottom line) or even malicious. Some elderly folks might be pressured into feeling guilty that there are even alive, and that their pre-mature death would be doing those around them a big favor by accepting the almighty decisions of professionals.
Life is complex and decisions cannot be made easily. We have to look at our own humanity, realizing that one day we may be in a vulnerable situation. Maybe the U.S. is coming to a vital moral crossroad that could result in some substantive changes or, at worst, a malicious agenda to kill the frail, old, and ignorant. Robert Twycross a leading pain specialist and a hospice doctor for over twenty-five years eloquently says, " During this time my opinions on many issues have changed, however, one issue that has not changed has been my belief that it would be a disaster for the medical profession to cross the Rubicon and use pharmacological means to precipitate death intentionally." This type of thinking could have serious ramifications all those who are chronically ill. He then goes on, "Rather medicine and nursing should grasp the opportunity to pursue education and gain information and knowledge."
Dorothy Guellec
Medical Specialty
Member Foreign Press Ass'n
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