Fighting to Meet the Obligation to Treat the Whole Patient
Joseph Bokum Lee MD
S tudents rush into the halls to watch another fight. While some hoot and holler, others whisper, “they belong at Hartgrove.” As the dust clears, students are escorted back to their classrooms, and I ask my 8th graders about Hartgrove. They respond with a chorus of “that is where crazy kids go.” And thus was my introduction to adolescent mental health services as a teacher in the south side of Chicago. In actuality, Hartgrove Behavioral Health System is an inpatient psychiatric health service for children, adolescents, and adults in the Chicagoland area . After further questioning, I learned that students unable to be controlled by their guardians and schools are sent to Hartgrove in hopes they would be rehabilitated and acclimate back to the school community. These students are then connected to school social workers and counselors in hopes that services offered a few times a month would be enough to help the students’ mental health problems.
In theory, such programs are admirable; however, in practice they are not nearly adequate to treat the massive amounts of grief and instability my students face . What they need are easily accessible physicians that are able to provide consistent care for common mental health issues.
Fast forward a few years. I am now a pediatric resident in the very same community in which I used to teach. The mental health needs are no different, and the reality is that only about 15%-25% of children and adolescents who require specialty services actually receive them. Of that percentage, the retention rate is below 50% due to lack of transportation, financial constraints, stigma, or shortages of providers [3,4]. Primary care providers, who provide over half of the mental health services in this country , have seen their ability to contribute to the mental health of our youth “carved out” by managed care organizations (MCOs), who only use contracted behavior specialists, having deemed pediatricians ineligible to be compensated for mental health services they provide in their office . The result is that primary care physicians, often the most appropriately suited to take on these matters, are left unable to treat the whole patient, body and mind.
In the last 4 decades, the role of the physician has changed considerably. In the words of Eric Cassell, physicians have gone “from treating patients to making treatment decisions.” Cassell states:
To a medicine guided by marketplace principles and the socially based ethics of justice, the loss of the personal is irrelevant. The classical norms of clinical medicine–dedication to the patient, constancy, thoroughness, self-discipline, compassion–are not about saving lives and improving overall health; they are about this patient’s life and health .
What used to be a sacred bond between patient and provider has quickly become a rigid assembly line, ruled by protocols and flow sheets. Being able to treat the whole individual, body and mind, involves more than just the proper images and medications, but understanding the intricacies of relationship building. Patients are asked to reveal the darkest, most painful elements of themselves to their providers, often without any rapport established, even in life or death decisions. It is in these moments where we have failed our patients.
For many of my patients, treatment cannot be divided between physical and mental; issues overlap, and are intertwined, exacerbated by the fact that this is a disadvantaged population that is both traditionally underserved, and suffers mental health problems endemic of their damaged socioeconomic surroundings, and the attendant sequelae thereof . As a result, physicians are often unable to meet their obligation to treat their patients in accordance with their fiduciary obligation to them. If I defer treating my patient’s mental health issue because of MCO strictures, knowing she will not, or cannot, seek out the services of a specialist, I am clearly not treating her healthcare needs as paramount. The actions MCO’s have taken in this regard deny these patients the rights they have been guaranteed through countless declarations of human rights, and such actions are at best an incompetent use of what funding is made available, and at worst, unjust. These actions also represent the continuing decline of the traditionally held conception of what a physician does, principally in terms of individuated and thorough care of a specific patient .
MCO’s purportedly exist to make needed healthcare services available to patients, but the problems with mental health service delivery in my community highlight an unacceptable failure to do so. It is irrational to allow the means of service delivery to compromise the service itself. MCO architecture has overridden the primacy of patient care, and as physicians, we have an ethical obligation to meet our fiduciary duty to our patients; we must act, first and foremost, in their interests. This is not so much a clinical problem as it is a policy problem, and corrective efforts will have to be made in that arena. However, I would like begin by highlighting some of the clinical issues I see before turning to that larger question.
A Few Examples
How are students and patients actually being let down? Consider Kimberly. Kimberly was a hardworking, mature 8th grade student, raised by an equally hard working single mother. She was a true leader, and often kept the class calm and together, not getting sidetracked by the temptations of the neighborhood. The first time she walked into my classroom crying and complaining of headaches, I knew of no other solution but to allow her to rest her head and offer to visit the school nurse. As time progressed and I came to know her better, I learned that her father would cancel visitations with her frequently, which resulted in headaches that would last through the next day. We would learn to cope with such disappointments together over next 2 years. Or Shannon, a quiet, 7th grader who treated all adults with respect, and who was committed to doing well in school. Her most impressive trait, however, was her ability to remain focused in the midst of everyday middle school drama. Thus, it came to everyone’s surprise when she broke down crying profusely after lunch one day. When finally calmed and in a safe environment, she revealed that she had seen her grandmother being shot in their home.
These were but a couple of the stories that highlight the issues my students shared with me in their journals every day while I was teaching. While reading such stories left my heart broken, I was limited by the amount of support that I could provide as a teacher. I was left trying to navigate a system that systematically left my students to fend for themselves. Where could they turn when our conversations and journal entries were not enough? Where could they find providers who were able to meet with them on a consistent basis, and help them through the resultant mental health strain imposed by their lives’ circumstances?
Primary care physicians, who may have once been able to provide that level of care, are no longer able to as MCOs continue to silo mental health care services. And while studies show that living in poverty imposes such a large cognitive burden that little reserve is left to focus on anything else, we ask the urban poor to pick themselves up by their bootstraps through academic excellence .
Now, as a physician, I find myself limited in my ability to help that same community. Jacob, an 8th grade student admitted to the hospital yet again as he jumps from one foster home to another, unable to manage his insulin for his type I diabetes. When finally granted the opportunity to spend a few minutes in his room, I can visibly see the pain he experiences from lacking consistent guardians who could help him with the medication regimen. With additional support, we could save him trips to the hospital, and ultimately save his life.
Or Samantha, a high school student who has missed months of school and numerous doctors’ appointments as her family battled homelessness. While I could care for her acute healthcare needs, I was left feeling helpless about the myriad of social determinants of health that were contributing to her physical decline.
And yet, standing before me, I see that the enormous challenges and trauma that members of this, and other similar communities face are given little acknowledgement. When our patients fail to take medications, no-show on their appointments, or suffer from mental health instability, they are deemed as lazy or even as “crazies.” Yet MCOs continue to require physicians to see more and more patients, and utilize non-physician providers, barring physicians the time to establish a holistic understanding of the complex mental health problems that may be hindering our patients to thrive in school and home [11,12].
There are three broad components contributing to the problem outlined above. Each will be discussed in turn prior to advancing the general thesis that as physician’s obligations to individual patients have been in decline over the past several decades, our current obligations must extend beyond the clinic, to include advocacy for our patients if we are ever to recapture our role as treating the whole person.
There is little acknowledgement by society, or even the medical community, of adverse childhood experiences (ACEs) being a contributing factor to the physical health problems that we seek to manage, as found in the monumental ACES study by Kaiser Permanente in 1998 . Instead, society continues to carry a notion that people should succeed regardless of the upbringing or past hardships. And as a medical community, we go about treating sexually transmitted diseases, managing obesity, and providing anticipatory guidance without an adequate understanding of the stories of abuse and household dysfunction that children live with on a day to day basis. Instead of embracing mental health problems as another serious health condition, we label such patients as difficult or hopeless .
Maybe such misguided attitudes are rooted in our own discomfort in dealing with such issues, given many of our backgrounds are in cultures and communities that stigmatized mental health prob#CTCB17-1lems [15,16,17,18]. For example, in the Asian Pacific Islander American (APIA) community, patients often seek treatment as a last resort, and only after the mental health condition has caused serious harm for the patient, family, or community. The notion that mental health problems are a byproduct of not being resilient enough, and that hard work and willpower are all that is needed to overcome such problems is a pervasive misconception [19,20]. The stigma associated with seeking professional help continues to be a major roadblock, and patients will often turn to family, friends, and clergy before seeking out counselors or therapists . Such upbringing contributes to a culture of health care workers, many of whom under-recognize mental health problems, and patients who underreport the toll mental health problems can have on overall wellbeing .
MCOs are structured in a way to incentivize cost effective medicine and limit variation in clinical practice patterns. Health care efficiency means creating the best health outcomes with the least amount of dollars spent. In theory, this is a noble and just endeavor; however in practice, it leads to increased pressure to do more with less, which means less time spent with patients, utilizing therapies that may not be most therapeutic, but are most cost effective; and juggling what tests and treatments will provide the most utility. Instead of using our clinical judgment, we must now consider monetary incentives/penalties and pressures from peers and supervisors in our decision-making. Such structures are bound to compromise patient care and advocacy for cost savings .
The MCO health care system today prevents physicians from treating the entire human being, as they struggle with the mammoth task of plugging patients into adequate treatment modalities. For instance, primary care physicians are faced with the reality that primary care visits last an average of 13 minutes, addressing roughly six patient problems in that time span, including mental health problems . It is unrealistic to expect that an adequate amount of time can be committed to treating mental health problems, yet studies show that patients with mental health problems want more primary care involvement in their treatment, as they have often formed strong patient-provider relationships and see it as way to avoid the stigma of seeing a psychiatrist .
Further, payment for office visits with a mental health diagnosis code has traditionally been discounted by Medicare and Medicaid for primary care. This policy disproportionately affects the patients in this community, which contain large numbers of traditionally underserved groups such as poor, ethnic minorities, who often seek care for mental health problems from general medical providers . In doing so, MCOs have effectively denied these patients’ rights to access equitable, holistic health care and prevented providers from doing what is best for these patients.
In contrast to a primary care appointment, a psychiatric visit usually lasts around 30 minutes to 1 hour, and focuses on a singular problem. Access to a psychiatrist is often only offered to patients with private insurance. This limitation partitions off many of the patients in this community who may benefit from such services the most. Even insured patients are seeing their level of mental health coverage being slashed by employers and insurance providers, with most plans having maximums on outpatient visits and inpatient hospitalization days.
And yet, government funding for mental health services continues to be on the decline, making access that much more difficult. In 2012, then Illinois Governor Patt Quinn closed two state run mental health hospitals and cut over 100-million dollars from the state’s mental health funds . Soon thereafter, the Mayor of Chicago, Rahm Emmanuel, closed six of the 12 city run mental health clinics in poor and crime-ridden neighborhoods . Both city and state officials cited budget crises as the reason as to why such services were cut; however, such actions demonstrate the low priority of accessible mental health services in our city and state.
Things have not improved much with the new Governor, Bruce Rauner, as the state has gone one year without a passed budget, resulting in organizations that receive state funding feeling the pinch. While some clinics have been able to stay afloat through tapping lines of credit, others have had to close their doors. In fact, from 2009 -2012, Chicago cut $113.7 million in funding for mental health care services, which is the 4th highest in the nation by percentage . If we are to truly advocate for our patients, we must stand against such injustices that affect the most vulnerable communities through the ballot box and lobbying. It is not enough to patch holes of health once they are created; we must prevent such holes from forming in the first place by engaging in activism to change the social, economic, educational, and political system to ameliorate suffering and contribute to human well-being .
Implicit Obligations: Agency and Activism
Pediatricians do not choose the profession; the profession chooses them. It is anathema to say, “the MCO’s have made it impossible for us to treat the whole patient, so we have no obligation to do so”, and rest easy. In my mind, our obligation remains. As pediatricians, we have the obligation to treat more than just physical ailments; we have an obligation to relieve suffering, which for communities such as mine necessarily includes treating the whole person, body, mind and spirit. Consider: Is it in line with the concept of beneficence, taking actions that will benefit the best interest of patients, to partition off mental health care in the manner described, if in doing so we deny them access to the care they need the most? How can we see ourselves as patients’ fiduciaries when we send them off with a referral to a specialist we know they either will not, or cannot, see? How is that any different from performing a useless test?
While it could be argued that the divisions in who provides what care should be a clinical decision, or at least a determination based on clinical evidence, it is not. Meeting our obligations as physicians and as clinicians, and upholding the ethical principles of providing quality patient care are tied to policy-level decision-making where there is no fiduciary duty to patients. That requires our involvement in an entirely different arena of practice. We must promote mental health through community organizing, advocacy, and legislation. In doing so, the medical community can work in unison with insurance companies and politicians for the betterment of the individual lives of patients, and the communities they live in. They deserve adequate food, safe neighborhoods, good schools, and have a right to high quality health care. What does high quality medical care mean without these things?
In “Perspective: agency and activism: rethinking health advocacy in the medical profession” Sarah Dobson and her colleagues argue that:
…while physicians recognize advocacy as an essential domain of competent and responsible practice, there is little clarity around what a physician should do as a health advocate and how this should manifest in daily practice. Further, Dobson and her colleagues differentiate agency as advancing the health of individual patients; and activism, as advancing the health of communities and populations. This distinction is useful in the present discussion of mental health care in the MCO setting because it clarifies the roles physicians have. As agents, in clinical, one on one interactions physicians can work the system for their patients, which is in keeping with our fiduciary duty. However, agency only goes so far. In order to make greater change we must engage in health care advocacy, using our expertise to push for social, political, and ultimately commercial changes .
Such thoughts are in line with the AMA Declaration of Professional Responsibility: Medicine’s Contract with Humanity, which state that as physicians, we are bound in our response to human suffering by applying our skills and knowledge, beyond the traditional patient-physician relationship, to care for the sick and the suffering. It is not our specialty that determines which patients we will treat, but rather humanity itself is our patient [30,31].
Joshua Freeman draws on Dobson’s distinction and argues agency is not sufficient if physicians want to have the greatest impact on patient’s health. He points out that while agency is accepted as a medical obligation, advocacy is less accepted, often considered to be outside of their professional responsibilities or lost in the long list of tasks that physicians must complete day in and day out .
However, how can the actions that make the most impact on health be outside the responsibility of those persons who are dedicated to that very thing? It, of course, cannot. From a Utilitarian perspective, advocating for our patients best interests is an obligation precisely because it can have such an impact. The greatest good is clearly served by physicians working as advocates in this manner, where potentially all patients can benefit from changes inspired by those who have the specific expertise necessary to know what needs to be changed. To not act in a manner that maximizes the good for the largest number of people is not ethically permissible, and thus advocacy is an ethical obligation for physicians.
From the Kantian perspective, generalizability and universalizability are the critical components of ethical maxims. It is not sufficient for a maxim to just to treat people as ends in themselves; the maxim must be as general as possible so that it can guide us in as broad a set of circumstances as possible, and it must also be universalizable to all similar people in similar circumstances . For physicians, treating our patient’s ailments is an ethical maxim; partitioning off the role of advocacy lessens the generalizability of the maxim. Alternatively, arguing certain physicians are responsible for advocacy, while the rest are not, lessens the universalizability of the maxim. Therefore, advocacy is obligatory from this ethical perspective as well.
As physicians, we have an obligation to treat our patients, both physical and mental ailments, both inside and outside the clinical setting. Unless we are able to do so, and not be stymied by MCOs or other insurance companies, we will not be able to meet that obligation. Thus, we must continue to fight for the rights of our patients through advocacy and activism. I push on as I think of Kimberly, Shannon, Jacob, and Samantha.
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- Office of Minority Health. Mental Health and Asians. May 24, 2011. See http://minorityhealth.hhs.gov/templates/content.aspx?ID=6476.
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- Schiffman, Lizzie. “Illinois Mental Health Facility Closures: Quinn Defends Move Amid Criticism.” The Huffington Post. TheHuffingtonPost.com, 27 Mar. 2012. Web. 14 Dec. 2016.
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- Declaration of Professional Responsibility: Medicine’s Social Contract with Humanity. American Medical Association. Mo Med. 2002 May;99(5):195.
- See also Cruess RL, Cruess SR. Expectations and obligations: professionalism and medicine’s social contract with society. Perspect Biol Med. 2008 Autumn;51(4):579-98.
- Freeman, Joshua. “Advocacy by Physicians for Patients and for Social Change.” Virtual Mentor: American Medical Association 2.11 (2014): 722-25. Virtual Mentor – AMA Journal of Ethics – American Medical Association. Sept. 2014. Web. 12 Dec. 2016.
- Kemerling, Garth. “Kant: The Moral Order.” Kant: Morality. The Philosophy Pages, 12 Nov. 2011. Web. 14 Dec. 2016.