By Elizabeth D. Wickham, Ph.D.
(Part Two—continued from yesterday)
Strategy and Program Design
Have you noticed that people in this more nuanced wing of the euthanasia movement seem to be working from the same set of talking points?
• Everyone should have an advance directive to protect himself from unnecessary medical treatment at the end of life.
• Withholding/withdrawing food and water is a natural—and even pleasant—way to die, and is a perfectly ethical means of controlling the time of death.
• “The principle of double effect” can be used to justify terminal sedation.
The people who are talking these points are financed by powerful foundations. Among the major foundations spearheading this effort are:
1. The Robert Wood Johnson Foundation, which funded the research and infrastructure, and
2. George Soros’ Open Society Institute/Project on Death in America, which funded a cadre of professionals.
In the last 10-15 years, these two foundations provided well over $300 million to advance the integration of their version of palliative care into the American healthcare system.
In the mid-1980s, Robert Wood Johnson Foundation invested in a carefully designed multi-year research study on how Americans were being cared for at the end of their lives. The SUPPORT study which stands for The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment launched the RWJF/Soros initiatives. The SUPPORT study was conducted on nearly 10,000 patients in five university hospitals including Duke Medical Center. In a sense, SUPPORT was a failure. It attempted to prove that with adequate communication they could change how people die—get people to fill out living wills and forego treatment. But it didn’t work.
So the researchers and their foundations used the data to make their case for changing the entire medical system, as well as shaping the popular culture. SUPPORT brought media and academic journal attention to a purported need for “improvement” in end-of-life care. The desired changes identified at that time in the mid-90s were:
1. develop a new subspecialty of palliative medicine,
2. relax constraints on prescription of opioids,
3. invest in palliative care research,
4. revise textbooks to include core content on palliative care, and
5. make professional education in palliative care mandatory.
Their intent was to change the culture of medicine away from its traditional focus on cure.
Five years after RWJF began the SUPPORT study, in the mid-90s, George Soros entered the field with a press release that claimed there was a profound “denial of death” in America. The “third path” movement rapidly coalesced.
Soros’ Open Society Institute/Project on Death in America began funding a Faculty Scholars Program which provided a leadership base for promotion of palliative care into mainstream medicine. PDIA Faculty Scholars in over 50 medical schools developed into a network of colleagues and now the second generation of scholars is committed to institutional change.
Among their first projects directed at professionals were EPEC (Education for Physicians on End of Life Care) and ELNEC (a similar program for nurses). Some of the other projects were directed at changing the general culture including RC EPEC (tailored to Roman Catholics) and APPEAL (tailored to African-Americans).
In 1996, RWJF formed Last Acts, a coalition of over 100 professional and consumer organizations. The first Last Acts Leadership Conference on March 12, 1996, brought 140 national leaders to Washington, D.C. In a special supplemental report by the Hastings Center which summarized the conference, Daniel Callahan described their three-pronged strategy moving forward:
1. Change the education of health care professionals
2. Change health care institutions and public policies and regulatory apparatus
3. Engage the public to gain support
RWJF began financing and coordinating statewide end-of-life coalitions or Community-State Partnerships using established state ethics committees, networks and centers in more than 20 states.
The National Program Office for the C-SPs (Community-State Partnerships) was Midwest Bioethics Center (now known as Center for Practical Bioethics), a bioethics “think tank” in Kansas City. Each grant recipient received a sizable $450,000 from RWJF and an additional $150,000 in matching funds. These EOL statewide coalitions pursued the primary goals of educating, training, advocating and changing statutes at the state level.
Which brings me close to home. How did LifeTree become interested and active in advocating for the very sick and chronically ill?
It turns out that the Carolinas Center for Hospice and End of Life Care directed the Community-State Partnership grantee in North Carolina and they were visibly involved in 2003, lobbying in support of a bill which LifeTree opposed.
On its surface, the bill criminalized Physician Assisted Suicide (the radicals’ agenda) but also would have validated “third path” tactics by permissive language in the same bill which validated the withholding/withdrawing of life sustaining procedures and prescribing pain medication which hastens death as long as the intent is not to hasten death. LifeTree worked to eliminate these permissive exceptions in the bill and, when it became redrafted more like the Michigan statute which was enacted to stop Dr. Kevorkian, we were surprised to find out that The Carolinas Center and other groups then worked to kill the bill. After it became much clearer and an effective deterrent against hastened death, it never came up for a vote.
A few years later another bill caught our attention. You will recall that the SUPPORT study found that living wills had no measurable impact on the care actually received. And so it was that, in 2007, LifeTree worked to oppose a bill that drastically expanded the conditions that would trigger the living will and health care power of attorney and introduce a new type of advance directive called the POLST form. Unfortunately, the bill passed and POLST is currently being implemented in North Carolina!
POLST stands for Physicians Orders for Life Sustaining Treatment. The name says “for” treatment but in fact POLST is much more likely to LIMIT life-sustaining treatment. The POLST form becomes part of doctor’s orders and is prominently displayed in the patient’s medical record wherever the patient goes.
POLST was tested in Oregon in the early 90s and was launched in 1995, one year after Oregon passed legislation legalizing physician assisted suicide. Now, in 2010, over 30 states have endorsed or are developing POLST programs. Only the 20 states in grey on the slide [slide presented during talk] have NO POLST programs to date.
In NC the MOST form, as it is called, can override your Health Care Power of Attorney agent. The form has a lengthy series of boxes to check indicating levels of treatment. Boxes include “Comfort Measures Only,” “No Antibiotics,” “No IV Fluids,” and “Do Not Attempt Resuscitation.”
A trained facilitator, using carefully designed curricula such as the “Respecting Choices” program, may assist in filling out the form which then becomes part of doctor’s orders, although it can come into effect with neither the patient’s nor a physician’s signature.
Do you remember the discussion of death panels in the proposed federal health care bill last summer? Did you know that the “consulting sessions” between physician and patient that were to be encouraged and federally funded involved filling out the POLST form? How do they define palliative care?
To the uninitiated, there might be a common sense understanding of what the words palliative care should mean and it might go something like this: Managing symptoms and relieving pain.
Many physicians, nurses and other helpers work to do just this and we recognize and applaud them. Many caregivers dedicate themselves to these high principles in a totally ethical way. Unfortunately, because of the movement we have been describing, it is fair to say that palliative care, in its true beauty, is now at considerable risk!
As early as 1986, palliative care professionals had signed on to the World Health Organization’s official definition which went well beyond the common sense understanding. By 2006, the official WHO definition had become, “an approach which improves quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
With funding from Soros and others, symptom management for the individual patient became broadened to a larger social dimension—ethical decision making, conflict resolution, and spiritual guidance orchestrated by a multidisciplinary team.
The great palliative care marketing achievement is reflected in the evolving nature of the definition of palliative care. Today’s officially defined palliative care is far more than managing a person’s symptoms and alleviating pain. Today’s palliative care is an approach or a process guided by a trained and certified palliative care team to help the family determine at what point there should be a shift in the goals of care, putting the patient on a different track, away from cure and on toward death.
Recall again what Daniel Callahan said in 1983 about solving the problem of making biologically tenacious patients actually die by withholding food and water. Imposed death is being repackaged as better quality of life.
Read tomorrow’s commentary for the final part of Dr. Wickham’s compelling talk from the 2nd annual Life Conference.
Elizabeth D. Wickham attended the University of Kansas where she graduated Phi Beta Kappa with honors in Economics. She received a Ph.D. from the University of Rochester studying mathematical economics and international trade theory. She has taught at four state universities and has published in various professional journals. For two years she was Assistant Ombudsman at the University of Tennessee–Knoxville. Dr. Wickham is a cofounder and Executive Director of LifeTree, Inc. She and her husband, Doug, have two children and two grandchildren.
This talk was originally presented at the 2nd annual Life Conference in North Carolina and is based upon the extensive research of Ione Whitlock, LifeTree’s chief of research. It has been reprinted with permission of LifeTree and Dr. Wickham. For more information on LifeTree, please visit http://www.lifetree.org/.