Abstract
[1] This article critiques current directions in health care research and suggests an ethical perspective for guiding research planning as a shared endeavor. “Caring for Health” (the Eighth Social Statement of the Evangelical Lutheran Church in America) sets a powerful ethical context for this activity. Its definitions of health and healing and emphasis on shared endeavor have strong implications for setting research agendas. Lutheran Medical Center in Brooklyn, New York, provides one example of an institution that has altered its research program to reflect values in “Caring for Health.”
Introduction
[2] Health care research in the United States involves an overwhelmingly diverse and multifaceted collection of topics, approaches, methodologies, and agendas. Universities, government agencies, hospitals, clinics, service providers of all kinds, producers of pharmaceuticals, training centers, alternative practitioners, and a multitude of private companies conduct research. The projects underway range from high technology applications of genetics to evaluations of new imaging techniques to explorations of acupuncture to qualitative studies of patient and cultural perspectives on care to a small but growing interest in the relationship of health and spirituality. Is it useful – or even possible – to examine the overall direction of health care research in the United States from an ethical perspective, given such a welter of ideas, such creative foment?
[3] The perspective of this article is that it is not only useful, it is essential to examine the direction of health care research. Its purpose is both to do this and to suggest an ethical perspective, a rationale if you will, that can guide research planning as a shared endeavor.
“Caring for Health” as a research guide
[4] To find a meaningful way through the maze of ethical issues related to health care research planning, we must have a context in which to place our questions. Such issues include the complex and contrasting motivations of researchers and funders of research, the effects of research on human beings (from saving lives to ego gratification to earning large sums of money to causing harm), and the various values placed on those effects. An ethical context would help put these issues in perspective and hopefully offer a way of deciding which issues are central and which are peripheral and whether we are proceeding in a purposeful way. Several resources exist that potentially offer such a context.
[5] One such resource is the Belmont Report (1979), a milestone in research ethics in the United States with powerful implications for research planning. The ethical principles it articulated include beneficence (using research to help wherever possible), justice (ensuring that the benefits and risks of research are distributed fairly, that all have equal access to enrollment in studies, and that the conclusions of studies are not distorted), and respect for persons (empowering research subjects with information). In their exploration of a variety of ethical perspectives, Beauchamp and Childress (2001) add the principles of nonmaleficence (doing no harm, or at least minimizing harm) and autonomy (ensuring the power of choice). These principles are valuable and germane to the issue of planning research projects and setting research agendas. But often such principles are used more to create rules for avoiding specific ethical problems rather than to set a context for conceiving of and planning research ethically.
[6] The resource that I would like to focus on here is one that has the muscle to set such a context and that is also particularly relevant to Lutherans and Lutheran institutions. “Caring for Health” is the Eighth Social Statement of the Evangelical Lutheran Church in America (ELCA), adopted in 2003. This remarkable document addresses issues such as the nature of health, healing, and illness; equity and access to health care; the church and its expressions of care related to health; the role of congregational health ministries; and biblical and theological perspectives related to health and health care. Many of the ideas and assertions found in “Caring for Health” are relevant and powerful in setting a context for the ethics of research planning. But are they being tapped, even in Lutheran institutions?
[7] “Caring for Health” articulates health care values that are different from how research is often conducted and driven. In spite of the incredible diversity found within health care and its research programs, pronounced trends can be seen, which are pinpointed in “Caring for Health.” The great majority of health care (and therefore research) resources are allocated to high technology solutions to manage specific medical diagnoses. Furthermore, most health care research is based on reductionist science, i.e., science that reduces the biopsychosocialspiritual complexity of health and illness to physiological processes and linear cause-and-effect patterns. Finally, a commodity-oriented profit motive – health care as business rather than as a shared endeavor of caring – drives most health care initiatives, and by extension the majority of funded research protocols.
[8] What, then, is the system of values in “Caring for Health” that offers a radically different context? First, “Caring for Health” defines health in the following way. “God creates human beings as whole persons-each one a dynamic unity of body, mind, and spirit. Health concerns the proper functioning and well-being of the whole person.” This implies that health care research activities should as much as possible take into account the whole person as a unity of body, mind, and spirit (as well as the communal dimension stressed elsewhere in the statement). Furthermore, this definition implies that research activities should never undercut, contradict, or eclipse the existence and importance of this unity. These implications affect research goals, methodology, and epistemology.
[9] The great majority of health care research deals with the body only, and only a small fraction truly address mind, emotions, behavior, spirit, and communal life. While more and more health care research includes spirituality (Koenig et al, 2001), the actual amount is still miniscule in comparison to research that does not do this. The definition of health in “Caring for Health” implies that methodologies and research measures related to mind, spirit, and communal life should be developed that are accessible to and usable by mainstream researchers and that these should be integrated wherever possible into specific research projects. Because alternative and complementary therapies often address mind and spirit as well as body, research in these therapies is much needed as well.
[10] From the above definition of health flows a definition of healing – restoration of the wholeness of body, mind, and spirit. Fruitful research questions related to healing include, How do we understand what this definition of healing entails? How do we know when it has occurred? How do we promote healing, even when cure is not possible? These questions are central to the nature of health and human life and deserve concerted effort. I believe it is warranted to say that this definition of healing plays little practical role in the research that reports the effects of health care interventions. This research is by and large focused on physiological measures only – on cure, not healing.
[11] Echoed throughout “Caring for Health” is the theme that health care is a shared endeavor – one that includes individual, church, business, society, and government at all levels. Health care as a shared endeavor entails being a good steward of one’s own health, neither falling into the extremes of making health an idol nor of neglecting it and denying one’s mortality. How should health care providers adapt this concept of good stewardship to each individual, and how should individuals adapt it to themselves? What are the best ways of communicating this concept of stewardship effectively and actually changing the behavior of individuals and groups? How does the research conducted by pharmaceutical companies and other for-profit entities support individual stewardship, or not? These are important and largely unanswered questions.
[12] Caregiver support is another component of shared endeavor. Which caregivers most need support, and what kinds of support are most helpful and effective? Are there skills we can teach caregivers that will help them identify and meet their needs for support? Currently, caregivers are invisible in the great majority of clinical trials, and few attempts are made to assess their role in any health care intervention.
[13] Also included in shared endeavor are public health care services that focus on the population as a whole. We know that rates of obesity, asthma, and diabetes are rising, and that heart disease is still a major killer. More research dollars are spent on interventions designed to treat these problems piecemeal (as with drugs and surgery after the problems have already occurred) than on preventive interventions that foster societal and lifestyle changes. Our understanding of how to create such lifestyle changes in a variety of settings with a diversity of people is limited. Admittedly, the research designs used to investigate such issues are difficult to implement and expensive. Yet the amount of money and effort spent on the quick fixes at the end of the line dwarfs what we spend on research in prevention. This leads to the important ethical question, Who has stewardship over such funds, and to what end are they being spent?
[14] The denial of death – as opposed to making it a friend and spiritual guide – results in our placing undue faith in technology, according to “Caring for Health.” After all, technology enables us to sometimes sidestep our mortality, at least for a moment. But how many of health care’s technological fixes extend the life span without improving quality of life, or provide only minimal benefit that does not outweigh cost and risks? If we take “Caring for Health” seriously, quality of life needs to be included in research studies in a way that takes the whole person into account, including the whole person’s acceptance of mortality.
[15] As a society, the social statement says that we must come to terms with the rising costs of health care, the way health care resources are rationed with respect to need and economics, and the lack of access to health care for many. Research can play a supportive role here in terms of quantifying costs and benefits seen from a whole-person, whole-community perspective. Social action research in particular can support changing unjust social structures.
[16] These represent but a few of the large issues suggested by “Caring for Health” that have powerful implications for the ethics of research planning. With respect to each of these issues, some research has already been done. Yet a huge discrepancy exists in the resources allocated to the suggestions above versus those allocated to the profit-oriented or purely scientific aspects of health care. Do we have an ethical mandate to change this balance – to look at what research we are actually conducting versus what issues are most important? Are we indeed spending our money and time to answer the health care research questions that are most important to the whole of body, mind, spirit, and community? Is the church taking leadership with this? Many in the “secular” world appear to be looking to faith-based institutions to do just that.
Lutheran Medical Center – A case study
[17] We have just considered some large ethical issues that have the potential to shift research focus globally and change the way research is funded. By their very magnitude, such considerations can trigger an overwhelming sense of powerlessness. How can one individual or institution possibly have any impact on the vast forces of economics and class that shape research today? In this section I would like to describe some humble steps toward this end that have been taken in one Lutheran institution.
[18] Lutheran Medical Center is an inner city hospital in Brooklyn, New York. Along with the Lutheran Family Health Centers’ network of outpatient clinics, it provides a wide array of health care services ministering to body, mind, spirit, and community. Around fifty percent of its patients are Latino, mostly from Puerto Rico, Santo Domingo, and Mexico, and twenty-five percent are Chinese, from Canton and Fujian. The remaining twenty-five percent include Russian, Arabic, Caribbean, and a variety of other ethnicities. Most are recent immigrants, with many undocumented and underserved. The rate of poverty is high.
[19] I serve as research director, my salary paid out of medical education dollars. My primary mission is to train hospital residents in research and scholarly activity. Usually working in teams, residents conceive of, design, implement, and write up research projects. They find topics they are interested in. Because they are encouraged to develop their own goals for projects, their topics vary greatly, from qualitative research on the effects of patients’ culture to prognostic studies involving laboratory tests.
[20] Each year for the last ten years, professionals of all types who have done research throughout our health system share their findings at a research fair. Scientific posters are showcased, and presentations of the best research in each department are given from the podium. For the last two years, the theme of the fair has been taken from “Caring for Health.” The promotional artwork and posters for the fair reflect the theme. During the fair, reflections on how each project relates to the theme are given. In this way, the ethical perspectives implicit in “Caring for Health” began to percolate through the research community of the hospital.
[21] Last year for the first time, we instituted the “Caring for Health” research award, with cash prizes for the three research projects that best combined quality research design and implementation with important ideas from “Caring for Health.” This annual award will hopefully make positive use of researchers’ natural competitive urges, engaging them in learning about the ELCA’s social statement on health and causing them to ponder its relationship to research and the health care services they provide. We created a two-page summary of “Caring for Health” to make it easier for researchers as well as other health care professionals to understand its key points and adapt them to both research and their daily activities.
[22] Research proposals could change as a result of the “Caring for Health” research award in at least three ways. First, their perspective – the context in which they are situated – could broaden. For instance, studies that test new interventions might measure patients’ quality of life in addition to physiological parameters. Qualitative data could also be collected that reveal patients’ and caregivers’ perceptions of and feelings about the new therapy and that take into account their culture and their understanding of the treatment. Second, new studies could set objectives – research goals – that are directly related to “Caring for Health.” For instance, they could focus on shared endeavor or the denial of death and how they play out (or don’t) in various clinical settings. Third, new studies could take on a social action dimension, with the intention of actually changing health care policy and practice through the way their goals are set and their findings reported. One way this could happen is by studying innovative ways that faith-based organizations and health care institutions could work together vis a vis government to better the health of the community – body, mind, and spirit – and create a more just system.
[23] Because of the ideas found in “Caring for Health,” the research program at Lutheran Medical Center is shifting toward greater engagement with the community. From needs assessments to investigations of community health attitudes and beliefs to explorations of how patients of various backgrounds relate to their health care providers, “Caring for Health” has suggested ways for researchers and community to interact. The new goal for the research department is to involve the community in the planning and implementation of the research as well in the dissemination of findings, so that professionals and community members learn in new ways the valuable lessons that each has to teach.
[24] While these activities related to research ethics and planning are occurring on a small scale, at least they are occurring! Through judicious use of existing funding, grants, and volunteers, such research has been carried out even though budgets are small. To start with, this influences at least some residents at the hospital – the next generation of physicians – each of whom will treat thousands of patients in their professional lives. Also, through presentation at national meetings and publication, this research approach will hopefully contribute toward shaping a larger dialogue about how we can do better in improving the health of body, mind, spirit, and community through a truly shared endeavor.
Acknowledgments
[25] The author wishes to thank Donald Stiger, Senior Vice President for Mission and Spiritual Care at Lutheran HealthCare, and Claudia Citkovitz, LAc, for their thoughtful reading of the manuscript and helpful suggestions.
References
Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 5th Ed. New York: Oxford University Press, 2001.
Caring for Health: Our Shared Endeavor. Minneapolis, MN: Evangelical Lutheran Church in America, 2003. Also available at: http://www.elca.org/socialstatements/health/.
Koenig H, McCullough ME, Larson DB. Handbook of Religion and Health. New York: Oxford University Press, 2001.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Belmont Report – Ethical Principles and Guidelines for the Protection of Human Subjects of Research. 44 FEDERAL REGISTER 76 (Wednesday, April 18, 1979), 23192-197.