Change agents hope to transform end-of-life care with “new” values
Journalist Ellen Goodman was a 2015 National Summit on Advanced Illness Care keynote speaker for The Coalition to Transform Advanced Care (C-TAC). She addressed the room of professionals in their personal capacity, “as mothers, as fathers, as sons, as daughters, as well as change agents because, of course, whatever it says on your CV, you are actually all here as change agents”(1) for end-of-life issues.
What is to be changed? Death is nothing new, as Goodman herself humorously observed.
What’s new is that technological miracles can mean that there are complicated and sometimes expensive end-of-life decisions to be made. Catholic moral teaching is clear that no one needs to take heroic measures to artificially sustain life but is equally clear that food, oxygen, and nutrition are not “heroic,” so long as the body still accepts them.
However, C-TAC isn’t a Catholic coalition and its values aren’t grounded in Catholic moral teaching or the natural law. Goodman’s thesis – and that of a program she co-founded and directs, The Conversation Project, which is part of the C-TAC coalition and its work – hinges on the subjective end-of-life “wishes” of each person. Some individuals may want aggressive medical intervention, some may want minimal intervention, and some may want an “assisted” death.
Goodman doesn’t discuss these various positions during the C-TAC talk but The Conversation Project is frequently recommended as a tool by which the individual can meet death on his own terms.(2)
There’s a faith-based initiative in The Conversation Project, too. Rev. Rosemary Lloyd is its adviser.(3) In 2012, motivated, in part, by a bill that was before Massachusetts voters titled Prescribing Medication to End Life, Rev. Lloyd delivered a sermon in which she said that Unitarian Universalist principals “support individual autonomy. Given the confines, limits, and safeguards embedded in Question 2, after a search of conscience and heart, I believe my religious values support this compassionate measure.”(4) One presumes that is the measure of her advice: to each his own.
It seems fair to conclude that C-TAC and The Conversation Project C-TAC are working from a secular – i.e., relativistic – moral framework. Therefore, when C-TAC’s roomful of change agents are told by Goodman that the “the whole thing rests on public engagement and trust,” we would like to know what this “thing” is. What are we likely to mistrust?
“Why do we work inside of congregations?” Rev. Lloyd asks at the C-TAC Summit. “Because these are existing communities that are filled with people who want to live according to shared values and they are devoted to being of service to vulnerable populations….Some congregations are the places where the seeds of cultural change are actually planted.” Given the secular, relativistic framework, these are uncomfortable words.
Enter the Alinskyians
Rev. Lloyd goes on to say that social justice is a part of “this” and that The Conversation Project has fostered a partnership with Greater Boston Interfaith Organization (GBIO). GBIO is an affiliate of the Alinskyian IAF network which was “the key force in achieving Health Care for All in Massachusetts….we’re hoping to use that power to… be a catalyst for change, towards making Boston a conversation-ready city, where we have conversations with our loved ones and our health care providers and that our health care providers are listening and our wishes are recorded and respected….We want to transform how we die in America.”(5)
Consistent with Catholic teaching, Cardinal Law, Archbishop of Boston, “and other Catholic leaders had a major impact on the demise of bills introduced in 1994 and 1996 that would have permitted physician-assisted suicide. In 1996, Law testified in person against the measure. Both times, the bills wound up buried in ‘study committees.’“(6) The Catholic Church consistently rejects euthanasia as an ethical “choice”…regardless of how well-intentioned.(7)
But here is a tremendously ironic situation. Cardinal Law was supportive of the founding of GBIO. Several Catholic parishes are members of the organization. Yet, GBIO’s relationship to health care has always been morally problematic. It was a member of the ACT!! Coalition (Affordable Care Today!! Coalition) that included NARAL Pro-Choice Massachusetts(8) and fought for passage of Commonwealth Care, a state-run precursor to the nation’s Affordable Care Act, that includes coverage of abortion services.(9) It also assures that low-income people can obtain low or no-cost contraceptives and birth control counseling.(10)
As for end-of-life issues, Reverend Rosemary Lloyd, now representing GBIO,(11) served on a Massachusetts Medical Orders for Life-Sustaining Treatment (MOLST) Committee to discuss “current concerns and priorities for improving end of life care.”(12) The Committee’s recommendations included development and implementation of a public awareness campaign in the state about advance care planning, palliative care, and end of life options. “It is crucial that the public become aware of available options for palliative care and end of life care … Care and treatment decisions made by an informed and empowered public will result in greater concordance between the expressed preferences of patients and the care that is actually provided.”(13)
What evidence is there for imagining that MOLST might also include “preferences” for euthanasia? MOLST is a directive to medical care professionals that tells them the patient’s wishes regarding resuscitation, intubation (tubing in the windpipe to make breathing easier), administration of intravenous antibiotics, and the use of feeding tubes during what is presumed to be the last year of life.(14) Many of these procedures constitute “ordinary care” and are not a moral “option.” Removing food, water, or air will eventually cause death…what advocates term “passive euthanasia” in contrast to “actively” bringing about death, such as taking an overdose of painkillers.
The Conversation Project’s Starter Kit, like MOLST, treats “ordinary care” as if it were “extraordinary.” It includes the question “Are there kinds of treatment you would want (or not want)?” In case one might not understand what has been asked, the questionnaire gives examples: “Resuscitation if your heart stops, breathing machine, feeding tube.”(15) This is a good example of offering or suggesting “passive” euthanasia as an end-of-life “option.”
GBIO – and the legislation, policies and programs it supports – gives progressives a foot in the door of its member congregations, acculturating abortion, contraceptives, and now euthanasia.
C-TAC is largely an advocacy organization. That is, C-TAC pushes for federal and state legislative, regulatory, judicial and administrative initiatives. To achieve broader support, it also has a public engagement component to “help people make more informed decisions and to support delivery system and policy change.”(16)
C-TAC is a national organization with specific values it intends to disseminate. Its pilot program, which C-TAC intends to replicate, is in Oakland, California and involves the faith-based community through another Alinskyian network, PICO. PICO’s Oakland affiliate, Oakland Community Organization (OCO) is part of C-TAC public engagement efforts.
There are, of course, legitimate reasons why faith communities are involved with people at the end of their lives. They are concerned about the state of a person’s soul, for one. They have humanitarian concerns that people don’t die alone or in unnecessary pain, for another.
They should also be concerned that dying people are not prematurely or unnaturally denied “ordinary” means of survival. However, this is precisely the uncomfortable fact: and, as has already been noted, C-TAC’s program is secular. To gain public trust, faith communities are “engaged” as the moral cover for secular programs that include immoral values.
“Public engagement” for C-TAC is, therefore, a pretty way of saying “manipulated public opinion” to support this new set of values. Local people are “engaged” in discussions that may make them feel as though they are part of a decision-making process but important decisions about how people are to live and die have already been made by others.
Oakland Community Organization has been involved in health care reform for several years. PICO and OCO were strong supporters of a national health care system(17) and was a member of the We Believe Together – Health Care for All coalition – along with the Religious Coalition for Reproductive Choice.(18) Like Commonwealth Care, the Affordable Care Act was determined to cover “reproductive services”. Like GBIO, PICO was not disturbed by that fact, despite its Catholic member congregations, and OCO is actively “organizing health insurance enrollment events.”(19) And OCO member congregation, Allen Temple Baptist Church, hosted C-TAC’s Interfaith Leader Consultation in 2013.(20)
North Carolina Regional Planning
C-TAC isn’t the only organization advancing problematic end-of-life care.
Another affiliate of the Alinskyian IAF network, HELP (Helping Empower Local People) in North Carolina, is part of the “public engagement” component for a comprehensive regional plan to manage its population’s health care, its environmental concerns, its housing, its food, and other things.
The plan is called “Connect Our Future.”(21)
Managed healthcare means that various government programs will be coordinated.(22) So, as part of the Connect Our Future plan, residents within the region can be connected to resources provided by the Mecklenburg County Health Department (which runs a Family Planning Clinic offering “comprehensive family planning & reproductive health services”)(23) or with Community Health Partners, a Medicaid program that, among other things, provides “palliative care.”(24)
An “Accountability Care Guide for Community Health Partners: Preparing Community Health Partners for the Approaching Accountability Care Era” explains the health care goals that are part of North Carolina’s regional plan. Among them are the reduction of health care spending growth, the collection of data, and the creation of a “culture” of “full collaboration” among “hospitals, physicians, providers, and community health resources.” (25)
Part of this is accomplished through “population health management.”(26) “Avoidable costs,” such as physical inactivity, tobacco use, and poor nutrition are addressed and health systems “engage with organizations ….[to] influence individuals’ behavior.”(27)
If that isn’t sufficiently invasive, the Guide instructs its readers to: “Use the trust in the faith community to link patient, doctor, and the community’s resources.”(28) Presumably, involvement of one’s congregation in this medical “collaboration” can be used to overcome suspicions about government intrusion into its citizens’ health care and records. Faith communities represent the broader community. They are identified with positive values and are one of the pieces by which these programs “gain mutual trust and buy-in.”(29)
When one considers all the negative values – birth control, sterilization, abortion, and so forth – included in this “value-based” community health care package, the regional planners have accomplished quite a coup.
Then there’s end-of-life care.
One of the Community Health Partners is Carolinas Center for Hospice and End of Life Care which lobbied for a bill that would have legalized withholding or withdrawing life sustaining procedures and permitted prescribing pain medication which hastens death as long as that wasn’t the intention.(30) Thankfully, the bill failed but, several years later, the North Carolina Medical Society (of which Community Health Partners is a part) helped draft “advanced directive” legislation to allow health care providers to withhold or withdraw life-prolonging measures in certain situations.(31) It’s called a “living will” or “natural death” but can actually be a form of “assisted suicide” – or “assisted murder” – if it’s interpreted to mean withholding water, nutrition, or oxygen…as is all too often the case. This legislation passed and is the driving engine behind the “Accountable Care Guide for Community Health Partners.”(32)
As with the IAF’s local “public engagement” for education reform, “public engagement” actually means “managed public opinion.” Local people are engaged in discussions designed to make them feel as though they are part of the decision-making process when, in realty, decisions about governance and curriculum and which values are retained and which get tossed have already been made by others.
Accountable Care Organizations
The “public engagement” involvement of Alinskyian faith-based organizing in North Carolina for a new, managed healthcare system is being replicated around the country.
In Camden, New Jersey, a PICO associated doctor founded the Camden Coalition of Healthcare Providers.(33) The Camden Coalition of Healthcare Providers just announced that, together with two other groups, they will form a three year pilot program as New Jersey’s first Medicaid Accountable Care Organization (ACO).(34) The Camden PICO affiliate, Camden Churches Organized for People, is a member.(35)
Together Colorado, PICO’s Denver-based affiliate, is in the process of creating a similar ACO initiative in Aurora, called Bridges to Care. In San Diego, PICO’s Southwest Organizing Project is part of the Multicultural Independent Physician Association Super-utilizer Project (MultiCultural Primary Care Medical Group) ACO.(36) These are just three ACOs; there are others.
All Accountable Care Organizations connect local healthcare providers together into a coordinated system. All ACOs collect patient data that is shared throughout the system. All have “public engagement” entities, some of which are affiliates of Alinskyian organizing networks.
All Accountable Care Organizations – even those whose primary managing institutions are Catholic – work from a secular perspective, providing (somewhere within the system) birth control, abortion, and advance directives.
So, for instance, Cooper University Health Care is one of Camden Coalition of Healthcare Providers ACO members. At the Cooper University Health Care website, you can download a Living Will and check a box saying whether you want or don’t “want tube feeding or any other artificial or invasive form of nutrition (food) or hydration (water).”(37)
Aurora’s Bridges to Care includes Metro Community Provider Network, which is a provider of services that include birth control, emergency contraception, and pregnancy options counseling for teens.(38) On May 20-21, 2015 Metro Community Provider Network held a free class for seniors on advance directives. “During this class, participants will have the opportunity to possibly complete an advance directive form.”(39)
MultiCultural Primary Care Medical Group received a $1.1 million federal Healthcare Innovation Challenge Grant in 2012 in collaboration with PICO’s San Diego Organizing Project. The resulting Patient Health Improvement Initiative targeted chronically ill patients. Like the Camden model, patients are served by a team of providers that includes “a nurse case manager, a social worker, community health workers and faith-based volunteers. They work intimately with each patient, including visiting his or her home, to help manage the chronic illnesses, to coordinate medications and therapies and to accompany them to their appointments, all the while offering emotional and spiritual support.”(40)
This sounds good until one realizes that, because it is part of the Medicaid system, MultiCultural Primary Care Medical Group uses “managed care and quality improvement” infrastructure.(41) Medicaid managed care organizations must provide their enrollees information about advance directives.(42)
It’s just part of the system. The price paid for a secular, nationally-managed health care system is the acceptance of its secular values. …and too many of these “values” just aren’t healthy.
- Ellen Goodman, “C-TAC 2015 National Summit on Advanced Illness Care – Engaging Multiple Generations,” video: “www.youtube.com/watch?v=Kuobk2susc8&utm_source=Member&utm_campaign=b7bbf8190d-Member_Alert_February_Week_1_2nd_Send2_9_2015&utm_medium=email&utm_term=0_e1d9f6f769-b7bbf8190d-63307321”
- See, for example, Nan March, “Maine Voices: Discussion should begin on right to make one’s own end-of-life decision; As four Maine lawmakers draft death-with-dignity bills, both sides of the issue should be debated,” Portland Press Herald,2-23-15.
- The Conversation Project website: http://theconversationproject.org/about/
- Rev. Rosemary Lloyd, “What are you talking about?” sermon given at the First Church in Boston, 10-28-12.
- (See FN #1)
- Michael Jonas, “Cardinal Law’s Challenge: Has the Cardinal lost clout?” Common Wealth Magazine, 1-1-99.
- Cf. Peter Kreeft, The Fifth Commandment: Moral Issues of Life and Death, (2000). Cardinal Law gave this book its imprimatur.
- Health Care for All: ACT!! Coalition members: https://www.hcfama.org/coalition/health-reform
- Wes Allison, “Indeed, abortions are covered,” Tampa Bay Times, 11-27-07.
- Rev. Lloyd is a GBIO leader.
- UMass Medical School, “MA Expert Panel on End of Life Report: Looking Forward: 2014 and Beyond,” 2014 Update (p.29, p. 2).
- “End of Life Report….” P. 3.
- Life Matters Media, “Massachusetts Doctors Must Provide End of Life Counseling,” 12-23-14.
- C-TAC, “Call to Action: Transforming Advanced Illness Care,” 3-25-14: http://www.thectac.org/wp-content/uploads/2014/12/C-TAC-Call-to-Action-UPDATED-3.25.14-1.pdf
- OCO website: http://www.oaklandcommunity.org/causes/bringing-health-care-home/
- We Believe Together – Health Care for All website (inactive), Endorsing Organizations list: data.rac.org/bt/?page_id=2
- OCO website: http://www.oaklandcommunity.org/causes/bringing-health-care-home/
- CONNECT Our Future is a Sustainable Communities initiative, funded by a grant from the U.S. Department of Housing and Urban Development.
- Connect Our Future website, Connect work groups list (health care): http://www.connectourfuture.org/about-the-process
- Mecklenburg County Health Department website: charmeck.org/mecklenburg/county/HealthDepartment/ClinicServices/Pages/FamilyPlanningClinic.aspx
- Gaston Family Health Services website: gfhs.info/community-health-partners/
- Smith, Anderson, Blount, Dorsett, Mitchell & Jernigan, L.L.P. “Accountability Care Guide for Community Health Partners: Preparing Community Health Partners for the Approaching Accountability Care Era,” Toward Accountable Care Consortiumand the North Carolina Foundation for Advanced Health Programs, 2014 (pp. 8 & 9).
- “Accountability Care …,” p 13.
- “Accountability Care …,” pp 12 & 13.
- “Accountability Care …,” p 22.
- “Accountability Care …,” p 24.
- Senate Bill S646, Unlawful to Assist Another to Commit Suicide(2003).
- Senate Bill 1046, Advance Directives/Health Care Pwr. Atty., 2007; Drafted by the North Carolina Medical Society to support use of MOST (Medical Orders for Scope of Treatment) forms. www.ncmedsoc.org/wp-content/uploads/2014/02/final_most_manuscript.pdf
- The North Carolina Medical Society gave “significant support” to the Guide.
- Together Colorado website, “Bridges to Care Fact Sheet,” www.togethercolorado.or/resources/bridges-to-care.
- Eric Strauss, “Updated: State’s first Medicaid ACOs are approved,” NJBiz,6-30-15.
- Camden Coalition of Healthcare Providers website: www.camdenhealth.org/aco-members
- Camden Coalition of Healthcare Providers website: www.camdenhealth.org/national-hotspotting-sites
- NARAL Pro-Choice Colorado, “Thinking about Sex? What Teens Should Know about Reproductive Health Care:” http://www.prochoicecolorado.org/assets/bin/pdfs/teenguide_en.pdf
- MultiCultural Primary Care Medical Group website, “Projects Changes Patients’ Lives, Slashes Costs,” 9-22-14: http://multiculturalipa.com/project_transforms.html
- Rodney G. Hood and Paul Hernandez, “Sustainable High-Utilization Team Model: CMMI Healthcare Innovation Challenge Award ,” PowerPoint presentation, University Best Practices, 8-6-12, slide 13.
- District of Columbia Department of Health Care Finance, “Medicaid Managed Care 2013 Annual Technical Report,” Delmarva Foundation, 2014, p 25.
This article, Agents of Death: The Alinskyian Effort to Manage Your Life’s End is a post from The Bellarmine Forum.
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