By Tracy Balboni

In 2006, the same year I was completing my training in radiation oncology and embarking on a career of caring for patients with incurable cancers, I first read this quote from Dr.DanielSulmasy in The Rebirth of the Clinic: An Introduction to Spirituality in Health Care:

“Illness is a spiritual event.  It grasps persons by the soul as well as by the body and disturbs both. Illness ineluctably raises troubling questions of a transcendent nature-questions about meaning, value, and relationship. These questions are spiritual.”

At that particular time in 2006, Sulmasy’s words contrasted starkly with my experience as a trainee in scientific medicine. Medicine was largely blind to the reality that illness is a “spiritual event”. And yet, I knew viscerally in my nascent experience as a physician that Sulmasy’s words were correct.  In the clash between my training and the truth expressed so poignantly by Sulmasy, I discerned a calling to translate this reality into words that medicine could hear and understand — the language of empirical research.

And so I embarked upon an academic career dedicated to translating the spiritual realities of patients into the language of numbers and the format of scientific manuscripts. I also had my own questions to pose and answer. Do patients want for their physicians and other members of the medical team to recognize and attend to the spiritual aspects of their illness experience? If we do embrace the spiritual aspects of illness, how does this influence patients’ well-being and medical care decisions?

With the above questions in mind, I embarked on research within the Coping with Cancer studyunder the mentorship of Holly Prigerson, PhD, the study’s principal investigator, whose vision and creativity have been transformative to the understanding of psychosocial and spiritual factors in end-of-life care. The study involved interviews and observations of 343 patients with advanced, incurable cancers and their family caregivers.

I was curious about the role of patients’ religion and spirituality inillness, such as how these played a role in coping and in well-being. I also wanted to know if patients felt that their religious and spiritual needs were supported by their medical teams, and what effect such support might have on their well-being and medical care decisions.

The results were illuminating. Patients commonly reported relyingupon their religious and spiritual beliefs to cope with their terminal illness. Notably, patients who relied heavily upon religious coping mechanisms at the time of the initial study interview were more likely to proceed with aggressive medical interventions in their last week of life, including more admissions to, and dying within, an intensive care unit setting.[2]

These were surprising results, which caused our research team to consider the reasons why more religious patients were more likely to receive aggressive medical interventions at life’s end, despite a pre-existing terminal illness. One possibility is that religious values such as belief in miracles may influence end-of-life medical decision-making. This research has now given rise to other separate prospective studies of advanced cancer patients, but thus far the data show that such beliefs are common, and may be influencing how patients understand their illness and medical decisions.[3]

Within the Coping with Cancer-I study, we also examined patients’ perceptions of the support of their religious/spiritual needs by their medical teams. Only about one quarter of patients reported that their spiritual needs were well supported by their medical teams, and, notably, those patients who felt highly spiritually supported had better quality of life, both at the time of the initial interview and ultimately near the end of life.[4]  The study also found that patients who reported that their spiritual needs were well supported by their medical teams transitioned to hospice care more frequently, and were less likely to die in an intensive care unit.

Hospice is a form of care for patients with incurable illness who have less than six months to live, and focuses on offering comfort to the patient. Hospice care also aims to keep patients out of the hospital and at home or in settings close to family and friends.

Though of course appropriate in certain settings, aggressive medical interventions for terminally ill patients at the end of life can cause pain and suffering for patients and their families. In fact, other work from the Coping with Cancer study focusing on the family caregiver experience found that caregivers of patients who received aggressive medical interventions at the end of life were more likely to have a difficult grieving process following their loved one’s death, such as more post-traumatic stress disorder symptoms.[4]

The complexities inherent to integrating spiritual care into the care of patients with rich and diverse spiritual backgrounds also led me to do research about the perspectives of patients and clinicians on spiritual care. The”Religion and Spirituality in Cancer Care” (RSCC) study involved interviews of terminally ill patients and doctors and nurses who care for those patients at several Boston-area hospitals. We found that most patients (87 percent) believed spiritual care is important within the care of the seriously ill. Furthermore, most patients (78 percent) indicated that religion or spirituality was important to their illness experience.[6] Furthermore most (84%) reported one or more spiritual needs.

However, most patients (87-94 percent) had not received spiritual care from their doctors or nurses. Similarly, doctors and nurses indicated that spiritual care was important within the care of the seriously ill, but that they often experienced barriers to providing such care. The most important barrier was spiritual care training — in fact most clinicians (87 percent) had received no training — and yet training was the strongest predictor of providing spiritual care within medical care.[7]

In open-ended responses from patients and clinicians,[8] critical approaches to spiritual care were named. Spiritual care was frequently viewed as critical to holistic care and patient well-being, and was identified as an important aspect of a good patient-clinician relationship. However, the responses also emphasized that medical caregivers have a limited role in spiritual care and should regularly call upon spiritual care providers, such as chaplains or other spiritual supporters. Also, spiritual care always must be patient-centered, honoring of the patient’s beliefs, and not imposing or forcing religious perspectives on patients.

In light of these and other research findings, spiritual care is named  by the National Consensus Project for Quality Palliative Care, the quality-of-care setting body for palliative care in North America, as a key domain of palliative care.[9]  Much research work continues to be required to define how best to provide spiritual care to patients in serious illness. Clearly a team approach is required, and palliative care teams are increasingly integrating chaplains into their care teams to help to achieve a whole-person approach that addresses the physical, emotional, social and spiritual aspects of illness for patients and families.

The complexity and richness of the role that spirituality can have within illness issummed up in the words of one patient, a 51-year-old Roman Catholic man and father of two daughters still in elementary school, who said “If it weren’t for my faith, I don’t know how I would have kept my equilibrium through this process. It is definitely through grace. My natural state of anxiety and manic nature would have spiraled out of control by now if I wasn’t being tempered by grace. It is profound. Some people say to me that I’m doing so well, but I can’t take any credit for it. Whenever I’m at the hardest places in life, God just sends his Holy Spirit, and it just takes over, just like he said it would.” [1]

As I reflect on the experiences of persons such as this patient, together with over a decade of research thatilluminates a prominent and varied role of spirituality within illness, I’m fortified in a vocation to help the practice of medicine to recognizeillness as a spiritual event.

Bibliography:
[1] T. A. Balboni, Vanderwerker L. C., Block S. D., Paulk M. E., Lathan C. S., Peteet J. R., Prigerson H. G. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. Journal of Clinical Oncology. 2007;25(5):555-560.
[2] Balboni, T., Balboni, M., Paulk, M. E., Phelps, A., Wright, A., Peteet, J., … Prigerson, H. (2011). Support of cancer patients’ spiritual needs and associations with medical care costs at the end of life.
[3] Balboni T, Paulk ME, Balboni MJ, Phelps AC. Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. Journal of Clinical Oncology. . 2010 Jan 20;28(3): 445-52.
[4] Balboni MJ, Balboni T. Influence of spirituality and religiousness on outcomes in palliative care patients. Uptodate. 2016 May https://www.uptodate.com/contents/influence-of-spirituality-and-religiousness-on-outcomes-in-palliative-care-patients.
[5] Tracy A. Balboni et al., “Racial/Ethnic Differences in End-Of-Life Treatment Preferences: The Role of Religious Beliefs about Care,” Journal of Clinical Oncology 31, no. 15 suppl. (May 2013) 6529.
[6] Sara R. Alcorn et al., “‘If God Wanted Me Yesterday, I Wouldn’t Be Here Today’: Religious and Spiritual Themes in Patients’ Experiences of Advanced Cancer,” Journal of Palliative Medicine 13, no. 5 (May 2010) 581-88.
[7] Michael J. Balboni et al., “Why Is Spiritual Care Infrequent at the End of Life? Spiritual Care Perceptions among Patients, Nurses, and Physicians and the Role of Training,” Journal of Clinical Oncology 31, no. 4 (February 2013): 461-67.
[8] Karen E. Steinhauser et al., “State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes,” Journal of Pain and Symptom Management 54, no. 3 (2017): 428-40.
[9] National Consensus Project for Quality Palliative Care, Clinical Practice Guidelines for Quality Palliative Care, 2nd ed. (2009). www.nationalcoalitionhpc.org/ncp-guidelines-2013/.

Adapted from Health Progress article, “Research Points to Spirituality’s Role” written by Tracy A. Balboni, MD, MPH, FAAHPM with Alexandra Nichipor, MTS. Permission granted from Health Progress, May-June 2018. Copyright © 2018 by The Catholic Health Association of the United States.