|
|
“Shared
Decisionmaking:” Patient “Decision Aids” and “Shared Decisionmaking Resource Centers” The Obama Health Care Law includes a program called “Shared Decisionmaking”1 which provides funding to nongovernmental organizations to develop “patient decision aids” that are supposed to help “patients, caregivers or authorized representatives . . . to decide with their health care provider what treatments are best for them based on their treatment options, scientific evidence, circumstances, beliefs, and preferences.”2These organizations will also receive funding to establish “Shared Decisionmaking Resource Centers . . . to provide technical assistance to providers and to develop and disseminate best practices . . . .”3 A Bias Against Treatment In the creation of these materials and the “assistance” given health care providers, what point of view will the nongovernmental organizations awarded grants and contracts espouse? An Oklahoma bill whose text closely resembled this part of the federal law gives a clue.4 That bill, which failed to pass the state legislature, actually named specific national groups which were to be consulted in the creation of the protocols and patient decision aids: the Foundation for Informed Medical Decision Making, the Center for Information Therapy, and Healthwise.5 If you go to the website of the Foundation for Informed Medical Decision Making website of the Foundation for Informed Medical Decisionmaking, you immediately come across a little box titled “Did You Know?” And in that box flash statements like these: “About 25% of Medicare dollars are spent on people in their last 60 days of life.” “Whether or not they receive active treatment, most men diagnosed with early stage prostate cancer will die of something else.” “Back patients in Idaho Falls, Idaho are 20 times more likely to have lumbar fusion surgery than those in Bangor, Maine, with no clear difference in . . . quality of life.” “For at least 70% of people who have heart bypass surgery, the survival rate is no better than if they had chosen to take medication alone.” “More care does not equal better outcomes.” “In many people with stable heart disease, medications are just as good as stents or bypass surgery.” Notice a pattern? Clearly, this is a group that wants to discourage patients from choosing treatment that may be extensive or costly. The Center for Information Therapy’s website is now password protected but when it was publically accessible it included the statement: “Toward the end of life, too many people receive ineffective, expensive medical treatments.” What about “Healthwise”? Its website proclaims that health plan and benefit providers can “avoid unnecessary care with Healthwise consumer health information.” There are significant indications that
under the guise of giving accurate and unbiased information to guide
patients’ informed consent, these groups will develop materials designed to
push and persuade us to agree to forego intensive medical treatment. A precedent on the federal level is a Veterans Affairs patient decision-making aid, a 53-page production entitled “Your Life, Your Choices.”6 Under the heading, “What are the key things to think about?” on page 29, this document asks, “If you had severe dementia and then became ill with a reversible illness, such as pneumonia, would you want treatment even though the treatment would not help your memory problems? What if treatment included going to the hospital?” On page 12, it certainly seems to discourage assisted feeding for someone with Alzheimer’s disease. Using a fictional case, here’s what it says: “Lily Chen, an elderly widow, was diagnosed 4 years ago with Alzheimer’s Disease . . .. Now she doesn’t remember where she is and she can no longer recognize her daughter . . . . Her daughter . . . has to decide whether to have a long-term feeding tube surgically placed into her mother’s stomach. The surgery is quick and won’t cause much pain, but the real issue is guessing how Mrs. Chen would value her current life. If they place the feeding tube, Mrs. Chen could live for many more years in the same or worse condition. If they don’t she will die in about 2 weeks or less, and probably won’t feel hungry or thirsty.”7 The booklet has worksheets to fill out for “Current Health,” “Permanent Coma,” “Severe Dementia,” “Severe Stroke” and “A future situation of concern when I might not be able to express my wishes.” For each of these there is a section on “quality of life.” Only for current health is there a choice to affirm that life is worth living without reservation. For all of the others, the choices are “Life like this would be difficult, but acceptable,” “Life like this would be worth living, but just barely,” and “Life like this would not” – the “not” is underlined – “be worth living.” In each circumstance except current health a negative picture is given. For example, “Terminal Illness” is described as a state in which you “have a lot of discomfort that requires medication[,] are in bed most of the time due to weakness[, and] need help with getting dressed, bathing, and bowel and bladder functions.” Of course, what people experience when terminally ill varies widely depending on the particular illness and many other factors, but this booklet seemed designed to lead people to believe that life with terminal illness will be almost unremittingly bleak.8 In the words of Paul Malley, President of the national non-profit organization Aging with Dignity, “'Your Life, Your Choices' encourages our nation's service men and women to look at illness and disability as things that render life not worth living."9 The Payoff– Less Money for Health Care The motivation for nudging patients to reject life-saving medical treatment is clear. Holly Prigerson of Boston’s Dana Farber Cancer Institute has been quoted as saying, “We refer to the end-of-life discussion as the multimillion-dollar conversation because it is associated with shifting costs away from expensive . . . care like being on a ventilator in an ICU, to less costly comfort care….”10 Indeed, a medical journal article of which Priegerson was lead author concluded that the mean cost of care was 35.7% less for patients who reported having end-of-life discussions, compared with patients who did not.11 A recent JAMA study reaches a similar conclusion that, "On the other hand, patients who reported having end-of-life discussions received less aggressive medical care and were more likely to receive hospice services for more than a week."12 This perspective in certainly in line with President Obama’s call in Spring 2009 for “a very difficult democratic conversation” about treating “those toward the end of their lives [who] are accounting for potentially 80 percent of the total health care bill out here.”13 Conclusion In short, not only will the Obama
Health Care Law limit our ability to use our own money to save the lives of
our family members, it will also fund propaganda to convince us this is all
for the best. 1. 42 USC § 299b-36. 2. 42 USC § 299b-36(b)(1). 3. 42 USCS § 299b-36(e)(2)(a). The “decision aids” are to include “relative cost of treatment or, where appropriate, palliative care options.” 4. Sec. 3A, S.B. 1395, 52nd Leg., 2d Sess. (Ok. 2010), accessible through http://webserver1.lsb.state.ok.us/WebBillStatus/main.html . 5. Like the federal law, shared decisionmaking legislation enacted in Washington State did not specifically mention the groups who would be contracted to formulate the decision aids. When the law was implemented, the local Group Health Center for Health Studies consulted the Foundation for Informed Decisionmaking. In 2009, the Vermont State Legislature passed Act 49 to fund a “shared decisionmaking” pilot program. (Significantly, its subtitle was “an act relating to containing health care costs.”) When the program was implemented, InformedMedicalDecisions.org, was listed among the sources of patient decision aids to be used. 6. For further information see http://www.nrlc.org/News_and_Views/Aug09/nv082409.html and http://www.nationalreview.com/articles/228199/your-life-not-worth-living/jim-towey . 7. This attitude is on full display in a recent New England Journal of Medicine article. The article, entitled “The Clinical Course of Advanced Dementia,” lamented that, “Distressing symptoms and burdensome interventions are . . . common among such patients.” It stated that in the last three months of life 49.7% of those in the study underwent at least one instance of what the authors chose to classify as “burdensome intervention.” These included hospitalization, visits to the Emergency Room, an injection or infusion, or tube feeding. The authors regretted that patients with advanced dementia received treatment for pneumonia, fever, and eating problems -- complications frequently experienced by such patients, which are generally addressed by measures that are quite low-tech and hardly “extraordinary.” The article went on to claim, “Patients with health care proxies [that is, surrogate decision-makers] who have an understanding of the prognosis and clinical course are likely to receive less aggressive care near the end of life.” In those cases, many of the patients did not die from the underlying dementia, but from starvation that a feeding tube could have avoided or an infection that antibiotic could have treated. The phrase “burdensome interventions” is a conclusion based on a very subjective determination. It employs a value judgment that a person with dementia lacks dignity or an adequate quality of life. 8. The lead author was Dr. Robert Pearlman, the chief of Ethics Evaluation for the VA’s National Center for Ethics in Healthcare. Given the excerpts, it should come as little surprise that Dr. Pearlman was one of a group who filed a brief before the Supreme Court in 1996 urging the Court to recognize “physician-assisted suicide . . . as a fundamental right.” Brief of Amicus Curiae Bioethicists Supporting Respondents, at 1 (Pearlman listed in Appendix A), Washington v. Glucksberg, 521 U.S. 702 (1997) & Vacco v. Quill, 521 U.S. 793 (1997). 9. http://www.news-medical.net/news/20090819/Veterans-deserve-better-than-the-Department-of-Veterans-Affairs-current-advance-care-planning-tool.aspx 10. http://www.empowher.com/cancer/content/end-life-talks-between-cancer-patients-and-doctors-lead-better-less-costly-care 11. “Health Care Costs in the Last Week of Life Associations With End-of-Life Conversations,” Arch Intern Med. 2009;169(5):480-488. 12. Wright AA, Zhang B, et al. Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA. 2008;300(14):1665-1673. 13. April 14, 2009 interview, published in the New York Times Magazine April 29, 2009. |
|