Here is more evidence. Continue reading
Rene Henry Gracida, Bishop Emeritus of Corpus Christi, Texas, hosts a blog that is a treasure chest of religious, political and philosophical gems. You can read his brief biography (here), and a little about his World War II Army Air Corps service (here). The video of his 50th jubilee homily (link here) is inspiring.
HOWEVER, this post isn’t about Bishop Gracida. It is about two of his guest bloggers and their rousing debate a few weeks ago on the subject of hospice versus “palliative care.”
Father Angelo, a priest with over a decade of experience caring for dying patients, was somewhat critical of palliative care. Ralph Capone, MD, medical director of the palliative care consultation service for University of Pittsburgh Medical Center-McKeesport Hospital, shot back defending “authentic” palliative care as defined by the Center for Palliative Care (CAPC; pronounced “cap-see”). Dr. Capone suggested that patients and families just need to do a little homework to find the palliative care teams that honor sanctity of life as opposed to a quality-of-life ethic.
I have a few thoughts concerning Dr. Capone’s comments.
Patients live longer. Really?
Dr. Capone contends that patients live longer with palliative care as opposed to traditional medicine, and cites a study by Temel et al. to defend his argument. There are a few problems in citing that report. First, the study was limited to cancer patients; it says nothing about a multitude of other end-of-life scenarios and diseases. Second, the researchers studied only a relative handful of patients at one site; it is questionable whether that sample is representative of the entire country. Even if the sample was representative, patients who are flagged for palliative care generally have a multitude of comorbidities, and the variability of those individual patients makes it difficult to make categorical assumptions. Third, I can cite at least one other study that suggests just the opposite; that palliative care results in shorter life. (Brumley et al., 2007)
Euthanasia, stealth and otherwise.
With regard to euthanasia: Dr. Capone asserts that euthanasia is more likely in hospice than in palliative care outside of hospice, and he narrows the definition of euthanasia to what he calls “stealth euthanasia:” overdosing and terminal sedation (sedation while withholding nutrition and hydration). He and Julie Grimstad, writing in Ethics and Medics, attributed “stealth euthanasia” to Choice in Dying, Partnership for Caring, and the National Hospice and Palliative Care Organization. They quoted Ira Byock, Joanne Lynn and Timothy Quill as examples. What they fail to mention is the fact that those people and organizations were part of the small group that defined palliative care as it is known today. Partnership for Caring (founded by Byock) formed the core of the little Steering Committee that wrote palliative care’s Clinical Practice Guidelines. Most, if not all, of the 20-member Steering Committee were involved in Byock’s “Promoting Excellence” projects. The Steering Committee was funded by the Mayday Fund whose executive director, Fenella Rouse, was fresh from her role as director of the Society for the Right-to-Die. At least half of the members were dependent on funding from Soros’s Open Society Institute, and at least a quarter of the members were dependent on federal funding through the NIH.
However, Father Angelo wasn’t talking about terminal sedation. He was talking about palliative care teams pushing patients into decisions regarding life-saving treatment. Although the palliative care community (CAPC and the like) is always eager to defend the so-called “constitutional right” to refuse treatment, for some reason it is AWOL when it comes to cases such as that of Terri Schiavo.
Almost more than pain management and sedative use, the “right to refuse treatment” was a central tenet for those who drafted the Clinical Practice Guidelines over a decade ago. Shortly before Choice in Dying rebranded itself as Partnership for Caring, and became the administrative home for the Steering Committee, it announced the remarkable discovery of a “Constitutional right” to refuse treatment, which it pledged to uphold:
An individual has a constitutional right to request the withdrawal or withholding of medical treatment, even if this procedure will result in the person’s death. Honoring a person’s right to refuse medical treatment, especially at the end of life, is the most widely practiced and widely accepted right to die policy in our society. . . .The U.S. Supreme Court affirmed the constitutionality of honoring a refusal of treatment in the case of Nancy Cruzan in 1990.
Apparently there haven’t been enough takers on that “right to refuse treatment” idea. Patients and families keep requesting life-saving treatment, so the focus has shifted to convincing families to forgo treatment for their loved ones. The “right to refuse treatment” is slowly morphing into a responsibility and duty to refuse medical treatment.
Consensus building — or bullying?
Dr. Capone leaves readers with the impression that Father Angelo’s experience – seeing families pushed into palliative care and limits on life-saving treatment – is a rare or isolated experience. Not only is it not rare, it is planned and it is widespread. A 2011 Journal of Palliative Medicine article provides solid evidence. A decade after he helped draft the Clinical Practice Guidelines, Andrew Billings, MD, conducted an extensive literature review to prove that “family meetings in end-of-life care, especially when conducted prophylactically or proactively, have been shown to be effective procedures for improving family and staff satisfaction and even reducing resource utilization.” [My emphasis. And my comment: Good for the staff; what about the patient?]
Among other things, the article makes two interesting points: before there can be consensus among family members, there must be consensus about goals among palliative care team members; and for palliative care, often the ultimate goal really is “less treatment.” Billings provides a helpful table summarizing key points from a dozen articles indicating that interventional palliative care and ethics consultations resulted in less life-sustaining treatments, “reduced use of life-sustaining treatments in nonsurvivors,” “reduced resource utilization after DNR,” “reduced ICU length-of-stay after comfort care,” and less “nonbeneficial resource use.”
Keep an eye on subjective qualifiers such as “nonbeneficial” and “appropriate” (as in “appropriate treatment”). Dig deeper into those qualifiers and you’ll find judgments on quality of life. Triggers for palliative care consultations, such as those found at the CAPC website (here), and in an article by Meier and Weissman, include quality of life indicators such as declining ADLs (activities of daily living), feeding-tube placement in cognitively disabled people, and even “multiple hospitalizations.” Palliative care is recommended in all of these scenarios. But palliative care has multiple, morphing definitions. It is end-of-life care; it is not end-of-life care; it is curative treatment and it is not curative treatment; it is symptom management; it is consensus and conflict resolution; it is not prolonging death; it is not prolonging life; it is psychological counseling; it is sending the patient home for a comfortable, well-planned death. Which of the many palliative care definitions will be applied to the disabled or chronically ill patient with multiple complications and “multiple hospitalizations”?
This isn’t the 1980s, and this isn’t the medicine it once was.
Without a doubt there are many excellent, dedicated, pro-life palliative care doctors and nurses at the bedsides of patients all across the country. However, these good doctors and nurses simply have no idea the extent to which “palliative” – as they once knew it — has been changed on a grand national scale.
So when Dr. Capone suggests that patients should seek out a life-affirming palliative care program, you have to ask whether this is a realistic solution. First, you had better hope that you like the CAPC brand of palliative care, because 60% of hospitals with 50+ beds are using palliative care that is affiliated with CAPC. Moreover, as Father Angelo remarked, if you are extremely ill – sick enough to be in a hospital – you are hardly in a position to do a survey of alternative treatment centers. I’ll add that many times there is no alternative at all, as indicated by a CAPC report that one out of six hospitals in the U.S is a sole community provider – meaning that the nearest alternate hospital is over 35 miles away. On top of that, 37% of those “sole providers” use palliative care, which means if you are in one of those hospitals, you’re stuck with what you are given.
The medical landscape has changed dramatically since the 1980s when palliative care was synonymous with hospice, when “the right to refuse treatment” was a greater concern than being discharged from the hospital too early, and when the government wasn’t openly discussing national health care rationing schemes to fix the shortage problems caused by its endless centralized planning, redistribution, and the toxic effects of meddling with payment methods. In such a context, one is well-advised to be skeptical of a referral to palliative care.
Here’s a bit of irony.
The Obama administration called for comments prior to launching the third phase of its plan to push everyone into electronic health records (EHRs). The AMA and other medical societies responded with requests to postpone implementation. CHIME (College of Healthcare Information Management Executives) warned:
We strongly caution policy makers not to expect that health professionals will be willing and able to capture significant amounts of structured data—unreasonable expectations in this regard are not only likely to compromise patient care (by unduly interfering with physician-patient interactions) but also lead to an anti-EHR response by the physician community.
It was a different story when it came to comments from the hospice and palliative care associations. They rather liked the course the administration is taking. In fact, they recommended that electronic records should collect even more data about patients and their families than was contained in the original plan.
Yes, these are the same hospice and palliative care professionals who are always moaning about the “technological imperative.”
Palliative care (i.e., the National Coalition for Hospice and Palliative Care (NCHPC)) submitted comments in January. You can read the letter here. (See also comments blogged by Joanne Lynn.) NCHPC recommended that electronic health records collect data for research; compel patients to make decisions on future treatments; and automatically flag patients who are candidates for symptom treatment in lieu of more expensive and unnecessary aggressive curative treatments.
In one section, NCHPC suggests that the controversial POLST form might be used as a model to collect data, to coax “health systems who are not so forward-thinking.” They write (emphasis is theirs):
Goals of care can and should be captured as structured data so that future measures can be developed related to goals of care that will not require laborious chart abstraction … To help imagine what this might look like, we cite the below example from an eMOLST1 form. MOLST forms [a version of POLST] are only appropriate for those very ill individuals with very poor prognoses, but [below is] illustrative of what is possible for goals of care generally. Indeed, forward-thinking health systems are … developing EHRs that can record goals of care. The meaningful use program should include objectives for health systems who are not so forward-thinking in leveraging EHRs in this way.
Generally speaking, advance care planning aids work in a two-step process. Start by assessing the patient’s “values and beliefs” – i.e., how wretched is your quality of life now; how wretched will it be? Are you now, or will you ever be, a burden to loved ones? (multiple choice, the better to pigeon-hole patients):
The next step is to set goals. NCHPC’s sample:
So it appears that organized palliative care is in favor of the Technological Imperative when it aids and abets the Quality-of-Life Imperative.
Here is my question: How often will we be subjected to these types of questions, and from whom?
A quick note on the people who signed the NCHPC letter speaking on behalf of the world of palliative care: Three of the four signatories are Timothy Quill, Diane Meier, and Sean Morrison. “Tim” Quill (as he is known by his friends in the palliative care world) is infamous for helping a patient to commit suicide, and then writing about it. Meier, Quill and Morrison later co-authored a controversial study of (illegal) physician-assisted suicide practices. Shortly thereafter Meier had second thoughts about advocating the legalization of physician-assisted suicide. Coaxing patients out of life-saving treatment on the basis of the quality of life imperative might be another matter.
Last Friday’s March for Life was a reminder that many Americans understand a fact that is lost to those inside the Beltway: that protection of human life, grounded in Judeo-Christian principles, has been the foundation of American civil society for over two centuries. By way of contrast, tomorrow an organization called C-TAC, run by right-to-die activists, will begin a two-day conference uniting pragmatic ethicists, political progressives, consumerists and crony capitalists at, appropriately, the National Academies of Science.
C-TAC (the Coalition to Transform Advanced Care) was founded by social marketer Bill Novelli; death-with-dignity activist Myra Christopher of the Center for Practical Bioethics (CPB; formerly known as Midwest Bioethics Center); and former Evan Bayh adviser Tom Koutsoumpas, now at ML Strategies. The American Bar Association, while not a coalition member, had a hand in development of C-TAC through Charles Sabatino, who is director of ABA’s Commission on Law and Aging.
Bill Novelli is former AARP president, and is also a co-founder of the huge public relations firm Porter Novelli – the firm that made the news last year when it won a $20 million contract from HHS to promote Obamacare. (Porter Novelli handles C-TAC’s press releases.)
Myra Christopher’s claim to fame is that she helped attorney William Colby argue for the death of Nancy Cruzan, and later advised Senators Danforth and Moynihan in crafting the Patient Self-Determination Act.
Tom Koutsoumpas was on the board of Partnership for Caring, and appeared on the website as chairman in 2004 as the organization transitioned to Last Acts Partnership and added Rev. Jeremiah Wright to the board. (Partnership for Caring had been known as Choice in Dying in the late 1990s; before that, it was known as the Society for the Right to Die.)
All of these founding members happen to have been key players in the 1990s death-and-dying project called Last Acts – a Robert Wood Johnson Foundation project that collaborated with George Soros’s Open Society Institute, until Not Dead Yet raised protests, and funding was cut shortly thereafter. In fact, C-TAC bears a striking resemblance to Last Acts.
C-TAC operated “largely under the radar” for about a year (as reported by one liberal blogger in-the-know). By September 2011 their strategic plan included “SWAT Teams” to “respond to questions from the media as well as any attacks” It is not clear whether this was in preparation for a specific “attack,” or whether they were just paranoid in general. The worry about “questions from the media” was clearly a ruse, because Christopher has a long history of using the media to foist her propaganda on the public. In 2000, for example, she and Partnership for Caring collaborated with Bill Moyers on a public television series, by which they were able to generate news stories, magazine articles, photo ops with members of Congress, and establish a community organizing network. They can always count on newspapers to carry their message. Susan Tolle – developer of POLST, a major contributor to Oregon’s guidebook to the Death with Dignity Act, and a board member on one of Christopher’s projects – boasted in a CPB publication:
“Our use of data with the news media often precedes efforts to bring about change in other settings. . . . If data have not been presented effectively to a wider audience, we are unlikely to be of tremendous influence to legislative bodies. . . . There is no doubt that The Oregonian has made a huge difference.”
What is C-TAC’s objective? According to Diana Mason, WBAI radio host and president of the American Academy of Nursing, “C-TAC was formed to reframe the discussion” in response to what she termed “fear-mongering” and “’death panel’ rhetoric.” Blogging at Disruptive Women in Health Care, Mason reported that C-TAC was ready to “take back the conversations with the public about choices in dying.”“Choices in dying” is one part of the agenda, but C-TAC’s objective is much broader. For one, they plan on “changing the health care delivery structure.” They are working with the new Center for Medicare & Medicaid Innovation (CMMI) at HHS; one of their board members just won $13 million in taxpayer money from CMMI to test a new intervention.
C-TAC likes to talk a lot about honoring a person’s values, but clearly they are in the business of shaping the public’s values and behaviors. One of the stated goals in their Strategic Plan is (emphasis added)
“Improve the social, policy and health system environment and norms for quality advanced illness care.”
To accomplish that goal, C-TAC plans to
1. Coordinate public engagement, policy advocacy, clinical model development, and provider education/support to optimize timing, sequence, and priorities to achieve greatest impact.
2. Utilize mass and social media and policy channels to create positive change in normative and expected behaviors regarding advanced illness”
Putting aside their lack of a solid definition for the term “advanced illness,” the problem here is that C-TAC clearly intends to impose its own values on the public in terms of defining “quality,” “positive change” and “normative and expected behaviors.” This is a little troubling coming from an organization whose founders can’t even get it right when it comes to what “ordinary care” means (hint: nutrition and hydration).Nor do the C-TAC founders understand the meaning of the word “person.” According to their definition, a person ceases to be a person when he or she loses cognitive capability – as a number of them would argue in the cases of Nancy Cruzan, Hugh Finn, Robert Wendland, Terri Schiavo, and countless others. So it is not surprising to learn that two years ago a two-day celebration of “the Legacy of Nancy Cruzan” served both as a reunion for old Partnership for Caring alumni, and a convening of agents who would go on to launch C-TAC.
It would be nice if these bioethicists, statists, and crony capitalists would not use taxpayer dollars to impose their values and agenda on the public, but to obtain government funding is one of their objectives. And of course, if all goes as planned, with the government money will come regulations and guidelines that will further operationalize their “better-off-dead” values and pragmatic ethics. Let’s hope they fail.
Here’s a scheme that’s sure to fundamentally transform America’s health care system, from top down and bottom up. The Administration is pairing Alinsky-style organizing with Berwickian rationing, and using your tax dollars to do it.
In a series of YouTube videos posted last fall, Joanne Lynn, MD (right-to-die activist, bioethicist, and wife of Rev. Barry Lynn of Americans United for Separation of Church and State) described a $1 billion “care transitions” project that was established via Section 3026 of the Affordable Care Act (Obamacare).
Lynn explains that “care transitions” means “how you move across settings” in healthcare. The Centers for Medicare & Medicaid Services (CMS) at HHS has been bothered that their clientele — elderly, frail fee-for-service patients — keep going back to the emergency room after they are discharged from the hospital. According CMS, “unnecessary hospital re-admissions” cost roughly $12 billion a year. Supposedly one in five patients returns to the hospital, but Lynn remarks that “in some areas, even higher rates apply; some populations certainly return more often.”
The answer: Use the federal government’s QIO network to establish community-based organizations for health care (re)distribution.
In response to the perceived crisis, CMS is starting with one billion dollars to change health care delivery systems across the country. Lynn says half a billion for “Community-Based Care Transitions Program” (CCTP), and the other half billion goes to “Partnership for Patients.” (Elsewhere, CMS describes CCTP as a sub-project of Partnership for Patients.) Lynn calls CCTP a “marvelously fertile endeavor,” and hopes that the CCTP demonstration project will spawn thousands of coalitions across the country:
“. . . [CCTP is] a very interesting program; half a billion dollars over five years, trying to have leadership organizations in the country – leadership communities, really – figure out how you can build community, . . . reduce the rate of hospitalizations and re-hospitalizations, by involving community-based organizations….”
These test sites will be the foundation for a permanent restructured delivery system over the next few years.
Though the coalitions are local, the federal government determines which organizations are allowed on the team. Lynn says that to qualify for funding, the lead organization must be
“. . . a community-based organization which has adequate representation of the provider stakeholders and adequate representation of the consumers on its board – so it’s a very special organization – Medicare has determined that public organizations like a Department of Health can qualify, and that Area Agencies on Aging can qualify, but you’ll have United Way agencies and others that might be able to do this …
The end result will be a coalition with clout.
The coalition will have its own board and will funnel large amounts of money. The organization is paid a flat rate per person, but then the organization decides how to allot the funds, determining which patients will receive more services, and which patients will get less. Lynn explains:
The community-based organization is the one that will get paid; they must be working with one or more hospitals. It’s an advantage to be working with hospitals with high re-admission rates. You submit an application that gives a blended rate, that says for every patient in our target population, we will be paid a certain amount, and then we will figure out, within ourselves, the patients that need a whole lot of services, and the patients who need less.
Joanne Lynn is not just a random observer. Lynn is an insider. She spent about a year advising CCTP’s headquarters in Colorado. During the mid- to late-‘90s she collaborated with Donald Berwick and his Boston-based Institute for Healthcare Improvement in projects aimed at decreasing hospital admissions by increasing the use of living wills and other advance directives. (Not surprisingly, before he left CMS, Donald Berwick was one of CCTP’s principal champions.) Lynn is probably best known for devising “Medicaring,” a program that manipulates Medicare reimbursements to discourage chronically ill patients from requesting life-saving measures.
Lynn recognizes that developing coalitions across the country will be tricky. She warns that people will be suspicious at first. She advises,
You need to build a level of trust, and then you need to govern by consensus, probably, for a while; and then figure out . . . what’s the governing board really going to look like; are we going to incorporate; are we going to be able to take on grants or funding; are we going to be able to take on the management of any records, or monitoring the situation, or speaking to the public? You have to think a couple years down the road.
This is where the Alinsky-style organizing comes into the picture.
The QIO for Colorado – Colorado Foundation for Medical Care (CFMC) – brought in Organizing for Health to help train and recruit organizers for coalition building via an online seminar that ran from February through May of this year. CFMC is the national coordinating center for a CMS program called Integrating Care For Populations and Communities (ICPC), and as such CFMC helps community-based organizations apply for the CCTP program.
Organizing for Health is spearheaded by Marshall Ganz and his department at Harvard’s Kennedy School of Government. From the Organizing for Health website:
Building on experience with Marshall Ganz, known for his campaigns with Cesar Chavez and California’s migrant grape workers in the 1970s, and Barack Obama’s 2008 grassroots presidential campaign, Kate Hilton, JD, MTS, is leading a team focused on supporting the capacity of leaders to organize and create sustainable conditions for transforming health and care.
For the record: Ganz focused on faith-based organizing, and his proteges at Organizing for Health specialize in leveraging faith-based organizations as well. The two trainers for the CFMC series – Kate Hilton and Ella Auchincloss – picked up community organizing experience while working for the Episcopal Church. Kate Hilton, the daughter of a hospice doctor, brings conflicts over end-of-life decisions into the debate. She has done community organizing through Donald Berwick’s Institute for Healthcare Improvement, the Mott Foundation, National Council of La Raza, and The Middle East Initiative at Harvard University.
Ella Aunchinloss, director of the Hauser Center for Nonprofit Organizing at Harvard’s Kennedy School of Government, stressed throughout CFMC’s four-month training series that there are many “change theories,” but community organizing involves using resources to build power, with emphasis on collective action.
“If the change you want to see involves mobilizing people and involves mobilizing all of the resources available by virtue of that collective, then you’re using the right theory of change for the challenge that you face. To give you an example, if you wanted to find a cure for cancer, organizing as a theory of change may not be the right theory. . . .If there was a scientific breakthrough that did involve the use of a scarce resource of, say, some sort of or drug protocol, you might consider using community organizing in order to shift the power dynamics that make that drug protocol either scarce or scarce to your community.”
In one session, participants were taught how to “map actors.” They were taught how to identify constituents (Auchincloss reminds the organizers that “patients are not constituents”), and and how to target supporters and competitors who have resources to which the movement wants access. Mapping also includes identifying who is the “opposition.” Auchincloss turned to one of the QIO members to provide a real-life example of mapping actors. It turns out the “opposition” was a team of physicians who said they were there to treat sick people. Doctors do usually treat sick people; that’s a good thing. Nevertheless, the physicians were identified as resisters because supposedly they just wanted to make money.
Hilton and Auchincloss, in the footsteps of their mentor Ganz, taught the organizers to begin their public relations campaigns with a “story of self”, a personal anecdote that will tug at their audience’s heartstrings, or conjure a fear. Organizers were told to cull their community for stories of “intolerable situations” to “create a compelling story or narrative of why people need to take action.” The series ended on May 24 with a call to action: “Contact a patient or family representative in your community by June 15th to learn what you can about their experiences.”
Sharpen your discernment skills; the propaganda blitz is on its way.