Summary of Research Findings

An article published in March 2009 by Andrea C. Phelps et al. in the Journal of the American Medical Associationexamined the impact of positive religious coping on medical care received by terminal cancer patients at the end of life.Footnote ⁴ Positive religious coping in a health context generally refers to patients' constructive reliance on religious practices (e.g., prayer) and theological beliefs (e.g., a loving God) as an orienting framework in which they can respond to the trauma of illness. Religious coping was measured at the time that advanced cancer patients were enrolled in the study using Pargament's Brief RCOPE, a well-validated questionnaire. Other psychosocial factors and predictors of end-of-life care were measured at this initial time point, such as patient demographic information and end-of-life care preferences. Patients were then followed until death, at which time their medical records were reviewed to determine the nature of the end-of-life care they had received. Patients whose religious coping scores fell above the median were considered to have a high level of religious coping, while those whose scores fell below the median were considered to have a low level of religious coping. Researchers found that among the 345 incurable cancer patients studied, high religious coping was associated with a six-fold greater likelihood of preferring “heroic” life-prolonging measures at end of life. Likewise, positive religious coping was associated with patients who were less likely to have a living will, a health care proxy, or a do-not-resuscitate order. Finally, positive religious copers were three times more likely to receive intensive life-prolonging care (e.g., mechanical ventilation and resuscitation) at the end of life and nearly two times more likely to die in an intensive care unit. These findings persisted even after accounting for other potential factors influencing end-of-life care such as age, ethnicity, psychosocial variables, terminal illness acknowledgement, and treatment preferences. The researchers suggested that there is some unknown combination of religious factors associated with one's relationship with God—beliefs, identity, personal relationships, and practices—shaping medical decisions resulting in aggressive care.

A study published in January 2010 by Tracy Balboni et al. in the Journal of Clinical Oncology examined the correlations between support of terminal cancer patients' spiritual needs by the medical system (e.g., physicians, nurses, chaplains) in relationship to end-of-life care received and quality of life near death.Footnote ⁵ Support of patients' spiritual needs was defined by two measures: 1) a patient-reported measure of the degree to which their spiritual needs were being met by the medical team and 2) receipt of pastoral care services by hospital chaplains. Patients were followed until death, at which time medical care received and quality of life near death were assessed. Quality of life near death was evaluated by interviewing care-givers present in the patient's last week of life. Of the 343 patients studied, those whose spiritual needs were largely or completely supported by the medical system were three times more likely to enter hospice versus patients who did not receive adequate spiritual support. Hospice is multidisciplinary care of the dying with the primary goal of relieving suffering—physical, psychosocial, and spiritual—and does not involve pursuit of medical care specifically aimed at cure. The study also found that high religious coping patients whose spiritual needs were largely or completely supported by the medical team were five times more likely to receive hospice care by the last week of life and five times less likely to receive aggressive medical care during the last week of life. Pastoral care visitation on its own was not associated with increased hospice care or decreased aggressive care. Only support of spiritual needs by the entire medical team, including physicians, nurses, and chaplains, was associated with medical care received by dying patients at the end of life. This study also demonstrated that spiritual support from the medical team and receipt of pastoral care services are associated with better patient quality of life near death, with scores being on average 28% higher than those not receiving spiritual care. These findings persisted after accounting for multiple factors potentially influencing end-of-life care and quality of life near death. This study suggests that medical support of patients' spiritual needs reduces aggressive care, facilitates greater transitioning to hospice care, and fosters increased patient well-being at life's end.

Diagnosing the Problem—The Divorce between Spiritual and Biomedical Care of Persons

Phelps et al. reveal a problem in how some religious individuals (and likely their faith communities) engage the experience of terminal illness while Balboni et al. uncover a potential solution. Other studies have demonstrated that aggressive care near the end of life is ubiquitous in American medical practice, has increased over time,Footnote ⁶ and exacerbates health care costs.Footnote ⁷ One might presume that positive religious coping would correlate negatively with choosing aggressive medical measures, making patients more willing to accept death. However, these two studies we have described, in corroboration with previous data,Footnote ⁸ are sobering because they show the opposite relationship. Likewise, other studies have shown that aggressive care at life's end is associated with poorer patient quality of death and higher rates of patients' family members experiencing pathologic bereavement after their death, including greater rates of major depression disorder, ongoing regrets, and feeling unprepared for the loss.Footnote ⁹ The data presented in the first article beg the questions: Why are people who rely heavily on religious appraisals of illness more likely to receive futile, aggressive care at the end of life? What underlying factors are implicated? While further research is needed in order to more fully understand the religious motivations driving aggressive treatment decisions, some hypotheses can be made, of which we will name five.

1. 1) Religious coping is likely associated with a strong belief in miracles. Hence, patients may choose aggressive care based on a hope that God will perform a miracle through yet untested therapies or high-risk procedures. In the words of one religious patient receiving aggressive medical treatment for a terminal illness, “Jesus said that if you have belief the size of a mustard seed you can move mountains. I find myself asking, ‘Why not me? Why can't I be like the masses that were healed?’ ”Footnote ¹⁰

2. 2) Similarly, positive religious coping may result in aggressive medical care as some patients connect the exercise of their faith with the fight to overcome illness. According to this construal, capitulation to terminal illness could be equated to abandoning faith or hope in God—“giving up on God before God has given up on them.”Footnote ¹¹

3. 3) Clergy and religious community supporters may play a role by influencing the felt expectations of dying religious patients. Religious supporters who are praying for and holding out hope for cure may add unique social pressure to patients' resistance to accepting a terminal diagnosis.

4. 4) Religious patients who pursue aggressive medical care despite a terminal diagnosis may also be responding to impoverished theologies of dying. Currently, popular engagement with death by religious groups appears to focus on upholding the value of life in response to medical technologies (e.g., human embryonic stem cell research) and ideologies (e.g., euthanasia) that are increasingly perceived to collide with religious values. Though clearly important, this singular focus leaves little to guide the religious person facing illness. Where is the theology of illness and dying to enlighten the path to death? Most theologies of illness and dying—though persisting in largely academic contexts—have all but faded from popular awareness as the paths of medical and religious communities diverged.Footnote ¹² Aware only of their religious communities' strong ethic of life and lacking a guiding theology of dying, the religious person may believe that a pursuit of all available medical technologies, no matter how doubtful the actual results, is most consistent with their religious communities' stress on the sanctity of life.

5. 5) Finally, patients may choose aggressive medical care at the end of life because they lack religious counsel sufficient to help them discern spiritual issues in end-of-life decision-making. This is related to our fourth hypothesis in that, though a religious bioethics of end-of-life decision-making is available in more than one tradition, it does not actually affect the experience of death for many people. This inadequacy of spiritual counsel might be thought due to conflicting ethics of end-of-life decision-making. However, many religious ethicists are in general agreement concerning the principles governing end-of-life decision-making. Instead, we propose that this deficit stems directly from the extant gulf between medical and religious communities. Lacking integration, religious principles have limited means of reaching the specific contexts of dying religious persons. Currently, this role is played by clergy, chaplains, and congregational members who visit the sick. But why are these means insufficient? First, the presence of these individuals, though invaluable, generally comprises a minority of the patient's experience of medical care—an experience dominated by interaction with medical care-givers such as doctors and nurses. Second, the philosophical schism between care of the soul and care of the body leads to a tendency to relegate “spiritual” issues to spiritual providers and “bodily” issues to medical providers. As previously stated, human experience does not fall neatly into categories, and the end of life is no exception. Because these issues are largely considered to be “bodily” matters, medical care-givers are given the greatest voice, and, with few exceptions, spiritual counselors are at best given a secondary voice. However, medical decisions—even very practical ones such as whether to pursue palliative radiation therapy or to participate in a clinical trial—are often imbued with spiritual motivations and implications.

It is also noteworthy that the disconnection between medical and believing communities is common to each of the five above-stated hypotheses. Fighting for life until one's last breath and praying for a cure despite otherwise hopeless circumstances can and should be compatible with a deeply spiritual and religiously-consistent process of dying. However, a religious approach to dying should also be characterized by a religious understanding of meaning and hope in the face of death's inevitability. This religious understanding of human mortality can then be more frequently translated into a willingness to forgo aggressive care in the face of terminal illness. However, unlike in the past when medical and spiritual caregiving were frequently practiced in concert, today there are few people—let alone communities of persons—possessing wisdomFootnote ¹³ in both to accompany patients in this spiritual discernment. Specialization has severed religious truths from biomedical realities, and hence patients and their families are often left alone and ill-equipped to bridge this gap.

Spiritual and Biomedical Reintegration: Resources for Dialogue

What initial practical steps might be taken to reconnect the spiritual and biomedical care of dying persons? Data from Balboni et al. point to a key extant resource—persons providing care in medical contexts, e.g., doctors, nurses, social workers, and chaplains. In this study, support of patients' spiritual needs by medical providers led to overall increased adoption of hospice care at the end of life (arguably indicating an increased acceptance of terminal illness) as well as improved patient quality of life near death. Positive religious coping patients experienced notable change in decision-making when receiving spiritual care from the medical team. In response to data supporting the importance of spiritual care to patients in a medical context, national health care guidelines now require medical care-givers to recognize the spiritual aspects of illness. However, medical providers are steeped in a biomedical model of caregiving—an approach that grew out of the divide between medical and faith communities—rendering spiritual care infrequent despite these mandates.Footnote ¹⁴ Medical providers need to be equipped to acknowledge and invite the spiritual back into the biomedical context.

Pastoral professionals and medical providers can act as key resources in translating a religious understanding of illness to the medical context. Chaplains already receive formal training to play this role, and can promote integration when granted a larger voice in medical education and practice. Equally important are medical providers—including doctors and nurses—particularly because these individuals play a primary leadership role in patient care. While not all doctors or nurses are capable of engaging patients' religious/spiritual concerns, all care-givers, no matter their faith orientation, can respectfully identify and acknowledge spiritual matters in the experience of illness, and refer patients with spiritual concerns to care-givers equipped to play this role. Moreover, religious medical providers are uniquely poised to facilitate integration of biomedical and spiritual caregiving, particularly when engaging patients who share a similar faith orientation. However, although data indicate that U.S. physicians are more religious and spiritual than the general population,Footnote ¹⁵ they are also more likely to treat faith as a private concern and hence exclude spiritual matters from their work as physicians. Religious care-givers could be encouraged and equipped to play a crucial role in integration by receiving training from within their religious traditions that builds their religious understanding of illness and of medical practice.

An important task for religious communities has been to provide an understanding of work that facilitates more faithful practice in everyday life, and the equipping of medical providers is just one manifestation of this larger task. To achieve this aim, religious communities would need to foster a religious understanding of illness, healing, and dying such as to enable robust practical application in end-of-life caregiving. Medical providers receiving this training would be able to apply this understanding to the care of patients, particularly those sharing a similar faith tradition. Additionally, religious providers would be equipped to provide education to other medical providers regarding the issues and resources relevant to their particular faith tradition. In this way, religious and nonreligious medical providers would be better prepared to recognize the multifarious spiritual issues arising in the context of illness and more readily call upon religious resources. Religious medical providers also have the potential to act as resources for religious communities, as their familiarity with both the biomedical context and their religious tradition grants them a unique perspective on spiritual issues arising with illness.

A second important means of promoting integrated care of the sick is improved dialogue between medical and religious communities. On a case-by-case level, this might take shape as clergy and congregational members actively participate in an ill congregant's care or as medical care-givers welcome religious supporters' involvement in a patient's care. At a higher level, this interchange could take the form of active dialogue between religious and medical communities. Such dialogue might include courses on faith and medicine for both medical and theological trainees or presentations in public forums exploring the practical (not just the controversial) intersection of theological and medical issues.

A Case Example

To place the above presentation in a practical context, consider the following factual case.Footnote ¹⁶ Mr. R is a 46-year-old gentleman with metastatic (incurable) cancer who is married, the father of two elementary-school-age daughters, and a highly religious Roman Catholic layman. He is well-educated and articulate, and works as a high school science teacher. After his initial diagnosis two years ago, he received surgery, chemotherapy, and radiation therapy with the aim of curing his disease. Twelve months later his cancer recurred, and despite further aggressive chemotherapy his cancer did not respond. Over the past month the cancer progressed to the point of causing pain and difficulty with swallowing. His medical oncologist offered an experimental drug aimed at reducing but not curing the progression of his cancer, and Mr. R is strongly considering this clinical trial. He was advised first to undergo palliative radiation therapy to reduce his pain and difficulty with swallowing. The radiation oncologist explains to Mr. R that two weeks of “palliative radiation” should give him some relief from these symptoms. Mr. R then asks, “What does ‘palliative’ mean?” His physician explains that palliative radiation treatment aims to relieve symptoms of the cancer but will not cure the cancer itself. Upon hearing this explanation, Mr. R becomes angry, and states, “I don't like your attitude, doctor. We're going to kick this thing and I expect you to be on my team—or let's find another doctor who will be.”

The day after this conversation took place, Mr. R was interviewed as part of a survey examining the role of religion and spirituality in advanced cancer. During the interview, he told the story of his powerful religious conversion when he was thirty years old, after which he found his spiritual home in a Roman Catholic parish. This congregation formed a strong spiritual community that nurtured his faith as he struggled with cancer. He said that after his cancer diagnosis, both he and his wife became closer in their marriage and they made Christ the “absolute center” of their lives. Not surprisingly, he scored very highly on the positive religious coping scale.

During the interviewer-administered spirituality survey, Mr. R spontaneously recounted the aforementioned conversation with his physician. The fact that Mr. R naturally linked this conversation with his physician regarding his cancer prognosis with topics of spirituality is in and of itself telling of the fluidity between spiritual and bodily matters in this man's experience of his illness. His subsequent exchange with the interviewer further underscores the seamlessness of this interconnection. After Mr. R described the conversation with his physician, the interviewer asked him why it was so important for him to get better. “Because of my two daughters,” Mr. R said. “God has given them to me as my responsibility and I have to be around at least until they are grown.”

Mr. R has been powerfully formed by his religious identity, and his own words illustrate the findings of Phelps et al. regarding how this may lead to an aggressive course of medical care at the end of life resulting in a poorer death. However, as Balboni et al. have suggested, supporting a dying person in grappling with the spiritual realities of struggling with terminal illness may help that individual to undergo a transformation in their spiritual understanding of themselves and of their illness that ultimately can facilitate peace and acceptance. How might Mr. R's medical care-givers provide this support? First, medical care-givers should be aware of their patient's faith and how it functions in the experience of illness. This can be achieved through a few, basic questions included as part of a general assessment at the time of initial consultation, such as the FICA questionnaire proposed by Puchalski.Footnote ¹⁷ With the understanding gained from this initial assessment, Mr. R's physicians would likely have been more aware of his need for spiritual support. While medical decisions are ultimately the patient's to make, they need not be made alone or with spiritual motivations that have not been fully disclosed and discerned by trusted advisors. Furthermore, aware of the important role of Mr. R's religious community, a physician might consider inviting Mr. R to bring spiritual supporters to his appointments to facilitate an integrated discussion and understanding of his illness and the implications of any medical interventions. These supporters might include hospital chaplains, many of whom have considerable training and experience in the context of illness, or might also include the patient's pastor, an appropriate congregational member, or another spiritual friend.

These examples of facilitating integration of religion and medical practice, such as taking spiritual histories and referring patients to chaplains, require minimal training and are easily performed by any medical care-giver regardless of faith background. However, physicians and nurses might also consider more deeply engaging the spiritual issues that are affecting patients' experiences of illness and medical care, particularly if these medical care-givers are specifically trained in such engagement or when the patient and physician share similar faith perspectives. Surveys have repeatedly demonstrated that most patients want physicians and nurses to consider their religious and spiritual beliefs and concerns as part of medical care, particularly in the setting of life-threatening illness.Footnote ¹⁸ And as the most recent research indicates, religious perspectives directly influence patients' medical care decisions and engagement of spiritual concerns both reduces futile, aggressive care and improves patients' well-being at the end of life.

Returning to Mr. R's case, a key spiritual issue involves Mr. R's religious sense of vocation as a father. While considerations of time and level of familiarity may limit a doctor or nurse's ability to engage with the spiritual concerns of a patient such as Mr. R, a certain level of spiritual counseling is both appropriate and necessary. Consider the following hypothetical response to Mr. R's concerns, based on the physician having completed a spiritual screening with Mr. R and sharing a similar faith tradition with him:

Clearly this kind of spiritual conversation only begins the process of helping patients understand their illness and medical decisions in light of spiritual considerations. While in-depth and repeated spiritual conversations should be left to clergy and chaplains, spiritually-minded physicians and nurses can assist patients in both identifying and engaging the spiritual matters intertwined with illness. Likewise, religious physicians and nurses, understanding the intricacies of illness and medical treatment and possessing fluency in their own faith tradition, can introduce what faithfulness might look like to patients sharing their faith perspective.

Practical-Theological Initiatives

A nascent movement toward reintegration of spiritual and biomedical caregiving is evident in the rising number of medical school courses on spiritualityFootnote ¹⁹ and in increasing research on the intersection of religious factors and illness.Footnote ²⁰ These positive, albeit initial steps, have been taken largely by those within the medical community. However, it is also incumbent on religious communities to take a more active role within medical institutions and professions. We propose two initiatives furthering the reintegration of spiritual and biomedical caregiving that require the leadership, creativity, and commitment of denominational leaders and theological educators to address this important gap in the American religious experience.

First, human mortality and the experience of death must be embraced more widely within religious communities. Clergy could regularly invite congregation members to reflect on their frailty and mortality, and in so doing to further their preparation for and spiritual appreciation of the experiences of sickness and death. Denominational leaders could also offer models and describe characteristics of a good and faithful death. While each person's death has unique and unrepeatable elements, most traditions continue to assert that religious beliefs and practices must shape the experiences of sickness and death. Each religious tradition should explore and identify, in light of the contemporary context, the characteristics of dying well. Similarly, those who suffer from illness or a terminal diagnosis must be given a more prominent voice in sharing their experience with congregation members. The sick and dying should not be isolated from their faith communities, as is often the case.Footnote ²¹ Rather, they should be viewed as teachers with a vital voice capable of preparing the healthy for the experience that will inevitably come.Footnote ²² Finally, a robust religious embrace of the experience of sickness and death requires in-depth theological engagement that permeates beyond the confines of academic contemplation to the formation of congregations and congregational leaders. The once-abundant spiritual resources for religious communities that upheld a practical-theological engagement of illness and death have largely vanished.Footnote ²³ It is incumbent, therefore, on theologians to discover novel resources that will equip congregations to embrace faithfully the experiences of illness and death.

Second, religious medical care-givers (e.g., doctors, nurses, chaplains) should be embraced within their own faith traditions as facilitators of the integration of religious faithfulness with the experience of illness and medical treatment. Their wisdom in the medical model and in their faith traditions would aid fellow congregants in bridging gaps such as those indicated by Phelps et al. that more religious patients receive more futile, aggressive care at the end of life. For example, religious medical care-givers could assist congregations and clergy in understanding the benefits and limitations of medicine, particularly at life's end. Religious medical care-givers could also assist religious communities in developing an ethical and spiritual framework for approaching sickness and health, whether facilitating compliance with taking blood pressure medications, promoting nutritious eating habits, or exploring the implications of end-of-life decision-making. Furthermore, while a theoretical framework is essential, sick persons and their families would also benefit from the presence and support of religious medical care-givers. The provision of a spiritually and biomedically-informed understanding of illness can assist patients in attaining an integrated perspective on their illness experience—one that simultaneously recognizes spiritual and medical realities.

Conclusion and Future Directions: Division-of-Labor versus an Integrative Model of Spiritual Care

In this essay we have explored the ramifications of a divided approach to care of the body and soul, and how further steps can be taken on the part of both the medical and religious communities to achieve integrated care for the sick. Though preliminary steps have already been taken on the medical side, a wide schism remains between medical and spiritual caregiving. As awareness of the implications of spiritual matters in medical care has grown, there has been increasing momentum to professionalize spiritual care within the medical setting, with chaplains serving as the primary providers.Footnote ²⁴ We will conclude with a response to this model of spiritual caregiving, suggesting that, although professional providers of spiritual care are essential for the provision of caregiving in the medical context, truly integrated spiritual care requires fluid rather than fixed professional boundaries in the collaboration and contributions from both medical providers and religious communities.

Within the medical literature, many already agree that spiritual care is at least a collaborative effort, involving doctors, nurses, chaplains and other medical care-givers.Footnote ²⁵ However, some conceptualize this relationship based on a “division-of-labor model” in which chaplains and clergy handle spiritual concerns, while physicians and nurses, who are focused primarily on bodily matters, identify and refer spiritual concerns to spiritual or religious professionals. While this spiritual care model has important advantages, its liability is that it presumes that spiritual and material matters operate apart from one another in patients' experiences of illness and can be engaged effectively by different professions. Our story of Mr. R and multiple medical survey studies demonstrate that these distinctions are not the case for many facing illness.Footnote ²⁶ Furthermore, as suggested by the findings of Phelps et al., a division-of-labor approach may lead to unrecognized and inadequately addressed spiritual gaps in the medical setting that cannot be practically compensated for by a model that divides caregiving according to body and soul. Furthermore, Balboni et al. found that an association between spiritual support and end-of-life care was present for spiritual care from the medical team but not for pastoral care services. This finding likely indicates that the practice of spiritual care by nurses and doctors uniquely addresses certain dimensions of spiritual concerns, such as when spiritual and medical issues overlap. These findings suggest that spiritual care in the medical setting is not best served by a professionalized, subspecialty model but rather by an integrated, generalized model. The latter is founded on the principle that bodily and spiritual matters cannot be dichotomized and hence that caregiving in the setting of illness requires attention from diverse spiritual care-givers including clergy, chaplains, congregants, family members, physicians, and nurses. In addition, spiritual support from medical care-givers not only requires a multi-disciplinary, team approach, but also calls for individuals comfortable in both the biomedical and spiritual dimensions of caregiving. Without a model of spiritual care that promotes an integrated involvement of both biomedical and religious communities, the contemporary medical approach dichotomizing body and soul will likely remain unchanged. Not only is an integrated, generalized model likely the only means of overcoming the chasm between medical and spiritual caregiving, it also is the most resource-rich (particularly desirable in the context of a financially-strained medical system), insofar as it draws upon a multitude of skilled helpers offering necessary and complementary resources in the overwhelming task of shepherding souls. In light of overwhelming spiritual concerns triggered by illness,Footnote ²⁷ many people of different levels of spiritual care training and experience should participate in providing spiritual care to the sick.

The integrated model to spiritual caregiving for the sick requires that medical and religious communities enter into active dialogue and promote integrated practice. Recognizing the frequent presence of spiritual matters in the experience of patients, the medical community has already taken nascent steps toward integration; religious communities, denominational leaders, and theological educators are likewise needed to further this process of restoration within a medical context. A multidisciplinary, collaborative, and community driven effort is needed, if an integrated care of the body and soul is to be again realized in contemporary medicine.