Given the length of this blog and the subject matter it addresses, I’ve divided it into two parts. Part II appears immediately below, Part I in a separate posting. Thanks for your patience and interest.
PART II – ISSUES TO BE ADDRESSED, STRATEGIES TO ADDRESS THEM
Treatment/medication compliance is the “quality of care” measure that along with “clinical outcomes” and “experience of care” will be employed to determine whether the homes’ Goal 3, “Improve Outcomes for Persons with Mental Illness and/or Substance Abuse Disorders,” has been achieved. It represents for me, and would apparently for Giannakali (1), the most dubious and yet the most instructive aspect of the mental health homes’ objectives, since it exposes the homes’ unspoken social control agenda and a potentially coercive methodology. Medication compliance will be tracked via DOH’s computerized records of prescriptions written and filled. If a specified period of time elapses – whether several weeks or months, depending on the medications in question – without a prescription for a customarily prescribed medication being written or filled, the responsible provider will be notified – it’s unclear to me whether by a State or network monitor – will be expected to provide and/or query the enrollee for an explanation and will be required to present a plan of action to continue the required treatment (2).
CARE MONITORING: SOCIAL CONTROL, VIOLENCE AND TREATMENT COMPLIANCE
This procedure has its roots in the State’s “Care Monitoring” initiative, piloted in Brooklyn in 2008 and then implemented throughout the State after an angry and apparently deluded mental patient killed a Manhattan psychotherapist (3). To quell the public outcry that ensued, a high level commission of State and City officials was formed and recommended a plan whose focus was treatment compliance, particularly as regarded medication, by persons diagnosed with serious mental illnesses. Its underlying operative assumption, publicly voiced by Commissioner Hogan at a Brooklyn meeting I attended just prior to care monitoring’s initiation, was that mentally ill persons who did not take anti-psychotic medications had a greater potential for violence than their medication compliant peers. In short, treatment/ medication compliance, care monitoring’s objective, would serve to control violent acting out behavior.
In the case management programs I was directing at the time, we experienced care monitoring as intrusive, wasteful and often unnecessary. For example, many of our clients presumed to be medication non-compliant because they had not filled a prescription at their neighborhood pharmacies in two or more months turned out to be receiving depot medications at their neighborhood mental health clinics. Further, my program supervisors spent so much time tracking down the information requested by the care monitors, who were employed by the private agency contracted to oversee the initiative’s implementation, that we did a time/motion study to document the program-time devoted to that endeavor. We reported our results to the provider advisory committee attached to the initiative, but we received only meant-to-be-mollifying assurances that everyone involved was aware of the problem. Finally, we never bought the “mental patients are dangerous” proposition. We knew after sixteen years of working with a few thousand individuals that, as per the literature, our clients were more likely to be victims than perpetrators of violence. In fact, only a handful of them over the years had committed acts of violence against others, and these were simple assaults or disputes with friends and family members that had gotten out of hand. It should be noted that a literature review undertaken by Choe, at al, in 2008 (4), showed rates of violence by persons diagnosed with serious mental lllnesses against others as ranging from 2-15%, while violence perpetrated against that same cohort as rates ranging from 20-34%. Further, acts of violence appeared correlated primarily with abuse of alcohol and drugs, not medication non-compliance, and to have taken place largely within six months of an acute hospitalization. Of true significance for me was that none of our case managers was ever assaulted by a program client.
As the literature predicted and I often reminded my staff, as many as 50% of our clients at any one time were probably not taking their prescribed medications. A literature review on medication adherence conducted by former U.S. Surgeon General, C. Everett Koop, in 2006 (5) showed rates of compliance of 50-60% for persons diagnosed with schizophrenia, as compared to rates varying from 40-90% for persons with physical ailments.
Our clients’ pacific behavior – and we worked with many individuals who had been incarcerated and had histories of violence – was very likely due to the connections, the relationships, they had formed, with friends, family members, treatment providers and their case managers. Again, as per Choe, et al, reductions in violent acts seem associated primarily with the passage of time spent by individuals in the community as well as with familial and associational links forged by them. I had also learned, after directing an out-patient Forensic DBT program for impulsively aggressive persons that those who engaged in violent and anti-social behaviors rarely if ever sought out treatment (6,7). They would never appear in a Medicaid database.
Finally, we saw care monitoring, as we did AOT, as a violation of our clients’ civil rights. After all, why couldn’t our clients refuse or walk away from treatment and prescribed medications? Two of the State- and City-approved discharge criteria we had employed over the years were “missing” – when our clients didn’t want to be found, no matter how diligently we searched, they weren’t – and “refusing [case management] services”. Were we now expected to pursue clients post-discharge? In fact, we were, but we refused to do so.
From Brooklyn, care monitoring rapidly expanded statewide. Now it’s to be incorporated into the health homes as one of its principal quality assurance measures. Medication adherence will be central to monitoring treatment effectiveness and will expanded to include all medications, including those prescribed to treat physical ailments. Again to refer to Koop, electronic health records, together with a closed pharmacy system, have proved effective in tracking medication compliance and, conversely, non-compliance. The key question is what will be done with that information, particularly that which uncovers medication non-compliance. As per Koop, the studies he reviewed cited the following as key barriers to patient medication adherence: the prescription of “complex [medication] regimens; [failure] to explain the benefits of a medication adequately … and having poor therapeutic relationships with their patients…” The studies’ collective conclusion was that “… enhancing communication between the physician and the patient is a key and effective strategy in boosting the patient’s ability to follow a medication regimen.” To paraphrase James Carville, Clinton’s old political strategist, “it’s the relationship, stupid!”
CONJOINT TRAINING: STAFF & ENROLLEES
Throughout the official documents I reviewed, those to and from CMS and the State DOH (8,9), enrollees appear to be regarded as passive recipients of services rendered, as patients in a clearly subordinate role. It’s not clear at all to me how much input enrollees will be allowed in their treatment nor, more importantly, how that input will be solicited and integrated. To be sure, the State’s plan outlines a standard assessment and planning procedure, but I also know that such procedures are observed more in the breach than in actual practice without training and ongoing supervision. I assume that the case management training program at the Hunter College School of Social Work, for which I wrote the original curricula, will continue training entering case – or care – managers, and that their supervisors will provide supervision ranging in quality from rudimentary to quite effective. I have no idea how mental health clinic psychotherapists, whose clients collectively comprise 70% of the State’s out-patient population, will elicit pertinent information and encourage active client collaboration in their treatment. Anecdotally and as per my own experience, clinic psychotherapists are notoriously ill-prepared to address somatic/medical issues. Further, both case managers and clinical therapists, emblematic of the classic mind/body split in healthcare, simply do not know how to negotiate the “body” half, the medical side of that dichotomy. More training, as well as effective supervision, is needed.
And I have my biases. My twenty-plus-years experience training peers, case management clients and case managers and other mental health professionals conjointly has persuaded me that conjoint training, with information shared equally with between the helpers and those presumably being helped promotes collaboration between the two and serves to equalize the power equation in their relationship. In the Integrative Collaborative Care Management (ICCM) training program at the core of our health care advocacy study (10), our client participants seized the opportunity – one of them christened the project “Ask Questions … Get Answers” — and presented as intelligent, reflective individuals genuinely eager to learn as much as they could to live healthy lives; and our case managers were there to witness that; which served to motivate the CMs as well as underscore their mission to help and their accountability to their clients. Most importantly, both cohorts received candid assessments of the health risks they were running and straightforward strategies for mitigating those risks. So far as I know, there are only two studies that document the conjoint training of clients/peers and case managers and its outcomes: ours, completed in 2010 and referenced below; and the first that I know of, conducted in the early 1990’s, with Dr. Peter Stastny, a community psychiatrist recently retired from the NYSOMH, as director, where a small number of peers were trained alongside prospective case managers to work collaboratively with Intensive Case Managers in the Bronx. I served as the lead trainer in that project.
The State’s plan does leave ample room for conjoint training. Its “Care Coordination and Health Promotion” section advises CMS that “The health home provider promotes evidence based wellness and prevention by linking health home enrollees with resources…” I would assume that among those resources in the West Brooklyn home will be the “Wellness Training” programs offered by several of the community-based providers in that network. While the curricula generally used are informative, I experience their tone as well-meaning yet patronizing. Hard facts, things tough to say and hear, systems issues, are not mentioned. Little is said of the barriers to accessing health care that folks known to have mental illness diagnoses are sure to encounter: condescension, outright discrimination, with somatic complaints described in idiosyncratic fashion ascribed to an individual’s presumed mental illness. Most importantly, nothing is said of the link between the atypical anti-psychotics most of them are taking and the metabolic signs and illnesses they have or run the risk of having: their expanding waistlines and increasing weight, their elevated triglycerides, blood sugar and blood pressure and their declining HDL. It’s as if the curricula and their designers subscribe to T.S. Elliot’s nostrum, “… human kind cannot bear very much reality …” (11)
METABOLIC SYNDROME & THE ATYPICALS
The NYS Office of Mental Health (NYSOMH) recently issued a concise and direct brochure, “Cardiometabolic Risk” What Is It and What Can I Do About It?” (12), which details the issues, specifies the causal links and suggests possible remedies. Will it be distributed and discussed with every health home enrollee prescribed atypicals? Will its unequivocal message be incorporated into the various wellness curricula in use? Will enrollees be given the choice to refuse to take atypicals or any other medications recommended by their treating prescribers? Will the professionals, the folks who will actually do the work that CMS and the State’s plan demand, viz., to carry out their integration/coordination functions and treat, no less view, home enrollees holistically, receive training in overcoming systems barriers, in wellness, in the metabolic risk factors? It should not be assumed that the line professionals will know these things. How ironic – yet how telling – that the two stakeholders on the ground, the enrollees and the line staff, will have such inadequate preparation to address life-threatening issues that could well be considered iatrogenic, i.e., caused by the public mental health system itself. They have been afforded very little say in what will continue to be a very complicated and bureaucratic system and will not easily gain a voice.
I like our training approach, which has a Jungian cast to it: “Where danger is, there awakens deliverance (13).” The first module, which I generally teach, lays out the essential data of the NASMHPD study, beginning with the summary statement concerning the 25 year loss of life expectancy and completes the dots linking the atypicals with onset of metabolic symptoms and consequent diseases. That module concludes with the message that all the causative factors identified in the study are modifiable, which is the focus of the seven training modules that follow. Our trainers, experts in their respective fields, proceed to teach client and case manager participants about the atypicals, their links to metabolic illnesses, principally diabetes and cardiovascular disease, and then about the prevention and management/ mitigation of those diseases, should they occur (10) .
In the middle of all that, I lead two modules entitled “How to Talk To Your M.D. (14),” which has proved to be quite popular, largely because of the immediate use to which its contents can be put to use. I have employed it on several occasions now in a peer specialist training program and am invariably informed by the peer participants how practical it proves to be in their field work when helping other peers as well as in their own personal lives. I’d be happy to make it available to practitioners in the field, whether peers or professionals, and particularly to health home providers and their component programs. It’s one of the guerilla or sub rosa tactics I’d advise providers to use whose staff members and clients/patients need and could benefit from what I term health care advocacy training. While it might not conform to the letter of ACA legislation or to New York State’s health homes plan, I would hope it does to their spirit and intent.
Ultimately, it is more than disappointing – iatrogenic? — that the State plan does not make explicit the link between the atypicals, the metabolic syndrome and the consequent metabolic illnesses, principally diabetes and heart disease, and the loss of twenty-five years of life expectancy. It does highlight smoking as a causative factor; and, indeed, the American Heart Association implicated smoking in 37% of the over 400,000 deaths in the U.S. caused by heart disease in 2007 (15). Interestingly, the NASMHPD study (16) also focuses on smoking as one of the modifiable causes of the increased mortality of persons diagnosed with serious mental illnesses, without acknowledging the role played by the atypicals ; as does New York State’s “Statewide Comprehensive Plan, 2011-2015” (17), which provides the context for its health homes submission to the CMS. It’s as if the policy elite in public mental health can say nothing that might be construed as an attack on the biomedical model. One might conclude that, despite what they know to be the facts, they hold to a steadfast belief in the ultimate efficacy of neuroleptics, particularly the atypicals. Yet, while they won’t connect the dots to the loss of life expectancy, both the State’s plan and the NASMHPD do acknowledge the link to metabolic illnesses. In fact, in the final section of its study report, the NASMHPD makes the following pertinent recommendations to provider agencies:
• That there [be] consistent monitoring of individuals receiving psychotropic medications … [and that]
• Whenever possible, avoid use of medications that are more strongly associated with … obesity, diabetes and hyperlipidemia…”
METABOLIC SYNDROME & PSYCKES
In the “Goal Based Quality Measures” section of the State’s health home plan, there is reference to the former but none to the latter. The rationale for the State’s response to both is probably to be found in a recently completed demonstration project conducted by SOMH with 18 New York City private voluntary hospitals during CY 2011, “Reducing Use of Antipsychotics with High-Moderate Risk of Metabolic Side Effects in Individuals with Cardiometabolic Conditions” (18) Data from the project was collected via SOMH’s PSYCKES system – Psychiatric Services & Clinical Knowledge Enhancement System for Medicaid (State bureaucrats have a thing for tongue-twisting titles and acronyms) — which, as per its website, is a “web-based portfolio of tools designed to support quality improvement and clinical decision-making in the New York State Medicaid population” (19). One can assume that medication monitoring data will continue to be compiled by PSYCKES. To me, that’s a remote and bureaucratic procedure, and I would be prefer that all prescribers be obliged to make use of the Metabolic Syndrome Monitoring Protocol, which I described at length in a blog posted on another site in March of last year and reference below (20), and which was developed by the American Diabetes Association in 2002 (21). But, as the results of the PSYCKES Demo clearly indicate, maybe you can’t oblige M.D.s to do much of anything.
In short, medication prescribers at 18 hospital-based mental health clinics were asked to “convert” at least 30% of all patients receiving atypicals and who were exhibiting metabolic signs and symptoms to other, presumably less problematic neuroleptics over the course of CY 2011. It is important to note that most if not all of these hospitals and their clinics will form part of the several health homes that will serve New York City. At year’s end, the average rate of conversion approximated 25%, but that appeared to be largely attributable to the conversion rates achieved by the 7 hospitals that scored at the 25% rate or higher. Two hospitals converted none; 3 converted less than 10% of their patients; and only 6 attained the 30% targeted rate, with 2 scoring better than 60% (18). So there we have it … the facts are known but the response is, at best, mixed and certainly inadequate. Accordingly, the State is not about to jeopardize its standing – and its Medicaid funding – with CMS by posing for itself a QA standard it could not meet within the next several years, if ever. Which confirms for me a contention I have been making since I started blogging a year ago, that the issues at hand require not clinical but political resolution and call for the development of a peer/survivor civil rights movement. More immediately, it validates my tactical suggestion that health home enrollees, together with their practitioner counterparts, be trained as health care advocates. Comments welcomed.
GUERILLA TACTICS & CONCLUSION
Finally, those guerilla tactics. Nothing illegal but just not officially sanctioned.
The first involves training. The NASMHPD recommends that each State establish and maintain the capacity to train the mental health staff charged with operating these integrated health care programs (16). New York State has fulfilled that obligation with its care management staff, particularly those who work in New York City, since the inception of case management in the State over twenty years ago. I assume the State will continue to fund the training program for new care managers housed at Hunter College. However, it has not done the same for the professionals who staff mental health clinics, most of which are under the auspices of non-profit agencies. Now it will have to ensure training opportunities for them as well as for those staffers from the medical side of the health home provider networks, many of whom will have had little experience working with enrollees presumed to be mentally ill. It’s not clear from its CMS proposal what the State’s training plan will be or what resources it will employ to ensure that staff get the training they’ll need to work effectively. In the event the State has no plan or that it proves inadequate, I’ve detailed above the conjoint training I believe would be useful for staff and enrollees in an integrated health care system. Providers should feel free to use all or part of it and adapt it in whole or part to meet their needs.
Secondly, training should be in line with specific programmatic objectives, which should include the following:
• Ensure staff and enrollee orientation to the health home and to the member agencies that comprise its provider network; the latter will be complex and bureaucratic and will require study and a map to differentiate its members and the services each offers;
• Closely monitor enrollees’ access to primary and chronic health care to ensure they get the care they need;
• Closely monitor the results of enrollees’ metabolic screenings, particularly those that reveal onset in enrollees of metabolic signs and symptoms;
• Promote the development of collaborative relationships between staff and enrollees to ensure they work as a team to achieve the preceding objectives. Specific attention must be focused on securing reductions in the dosages of prescribed neuroleptic medications or changes in the medications themselves should enrollees be suffering from metabolic ailments, particularly diabetes or cardiovascular illnesses, or in the event metabolic signs and symptoms arise.
• Promote enrollees’ recovery, whether recovery is defined as liberation from the mental health system and/or re-integration into the community and into a community-sanctioned role; towards which end, identify peer/survivor-led organizations, develop working alliances with them and help enrollees integrate these organizations into their social support work network (22).
Lots of work, with perhaps little support from official State and health home network entities. Just remember, “Don’t mourn, organize!”
1.- Gianakali, “Medical Compliance? Adherence? Screw That. My MDs Are My Partners,” January 30, 2012, http://beyondmeds.com
2.- NYSDOH, “The Quality Measures for Health Homes,” January 30, 2012, http://health.ny.gov/health_care
3.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2011-2015, Chapter 2, The Imperative for Health Care Reform,” October 1, 2010, http://www.omh.state.ny.us/
4.- Choe, J.Y., et al, “Perpetration of Violence, Violent Victimization and Severe Mental Illness: Balancing Public Health Concerns,” Psychiatric Services, February, 2008, Vol. 59, #2, pp. 153-64
5.- Koop, C.E., “Adherence to Medication,” New England Journal of Medicine, August 4, 2005, pp. 487-497
6.- Carney, J., Frankel, A., Laporte, H., Brathwaite, D., Ring, N., “Utilizing Dialectical Behavior Therapy to Treat Impulsive Aggression in Forensic Clients with Serious Mental Illnesses in an Out-Patient Clinic,” 1999
7.- Carney, J., “Outpatient DBT Treatment for Forensic Clients,” Currents, NASW, NYC Chapter, Vol. 48, #5, February/March, 2004
8.- NYSDOH, “NYS Health Home SPA for Individuals with Chronic Behavioral and Medical Health Conditions – SPA # 11-56,” September 28, 2011, http://www.health.ny.gov
9.- Social Security Administration, “State Option to Provide Coordinated Care Through a Health Home for Individuals with Chronic Conditions,” http://www.ssa.gov/OP_Home/ssact/title19/1945.htm#ftn490
10.- Carney, J., “Ask Questions … Get Answers, II – Training Behavioral Health Consumers and Case Managers as Co-Equal Primary Health Care Advocates: Summary of a Comparative Study, September, 2008 – March, 2010,” October 6, 2010 & February 2, 2011, www.behavioral.net
11.- Elliot, T.S., “Burnt Norton,” Quartet No. 1, from Four Quartets, Harcourt Brace, New York, 1943, 1st ed., and www.tristan.icom43.net/quartets
12.- NYSOMH, “Cardiometabolic Risk: What Is It and What Can I Do About It,” brochure, 2012
13.- Jung, C.K., Modern Man In Search of a Soul, (1933), Routledge Classics, London & New York, 1955, English translation
14.- Carney, J., “Communicating With Your Doctor: A Self-Advocacy Primer,” powerpoint presentation, 2008, 2011, and “Communicating With Your Doctor: A Training Guide to Self-Advocacy,” July, 2011
15.- American Heart Association, “Heart Disease and Stroke Statistics – 2011 Update,” December 15, 2010, http://circ.ahajournals.org/
16.- National Association of State Mental Health Program Directors (NASMHPD), “Morbidity and Mortality in People with Serious Mental Illness,” October, 2006, www.nasmhpd.org
17.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2011-2015, Chapter 4, Public Mental Health System Highlights,” October 1, 2010, http://www.omh.state.ny.us/
18. NYSOMH, “GNYHA-PSYCKES Quality Collaborative: Reducing Use of Antipsychotics with High-Moderate Risk Of Metabolic Side Effects in Individuals with Cardiometabolic Conditions,” powerpoint presentation, January, 2012
19.- NYSOMH, “About PSYCKES,” http://www.omh.state.ny.us/omhweb/psyckes
20.- Carney, J., “Helping Consumers Add Years to Their Lives, II: The Metabolic Syndrome Monitoring Protocol and Other Tools,” March 4, 2011, www.behavioral.net
21.- Newcomer, J.W., Haupt, D.W., “Metabolic Screening & Monitoring Form,” 2006, Compact Clinicals, Kansas City, Mo.
Also c.f. Appendix, NASMHPD study, 2006.
22.- Carney, J., “Answers vs. Questions: Do We Even Need a Mental Health System?”, October 6, 2011, www.behavioral.net