Spiritual Needs in a Secular Society
Annelieke Damen, MA, PhD Candidate, University of Humanistic Studies, Utrecht
The religious landscape in the Netherlands is very difference from the United States. In the U.S. 23% describe themselves as unaffiliated; in the Netherlands the proportion who report no religious affiliation is double (50%; PEW, 2015; Schmeets, 2016). In the past year, I was involved in two studies about spiritual needs and spiritual struggle of palliative cancer patients, one involved American patients, the other involved Dutch patients. These differences in the American and Dutch religious landscape invite reflection on the differences in the prevalence of the spiritual issues reported by the patients in the two studies, and on making spiritual care services available to address those issues.
A quick overview of the studies will be helpful. For the American study (Damen, Exline et al., 2021), a new concise measure was employed to assess religious/spiritual (R/S) struggles: the RSS-14, developed by Julie Exline and others. This measure includes 14 questions about six different types of R/S struggles: divine, demonic, interpersonal, moral, doubt, and ultimate meaning struggles. An example of an item for ultimate meaning struggle is “Over the last month, to what extent have you questioned whether life really matters?” In the study, 331 cancer outpatients who were receiving palliative care rated the items from ‘not at all’ to ‘a great deal.’ The results revealed that 66% of the patients reported some R/S struggles, and 20% indicated ‘quite a bit’ or ‘a great deal’ of struggle for at least one item.
In the Dutch study (Damen, Raijmakers et al., 2021), 1,103 palliative care patients answered questions about their spiritual well-being by means of the widely used FACIT-Sp-12. The measure includes statements about meaning (e.g., “I feel a sense of purpose in my life”), peace (“I feel peaceful”), and faith (“I find strength in my faith or worldview”). Spiritual needs were assessed through the short version of the Dutch Problems and Needs in Palliative Care measure. It consists of four statements for which the patients responded whether there was a problem, and whether they would have liked to have attention for that problem. The statements were: “Difficulties to be engaged usefully,” “Uncertainty regarding my significance to others,” “Struggle concerning the meaning of death,” and “Difficulty of accepting the disease.” The study found that, on average, the patients experienced quite a bit of meaning, a little bit to somewhat peace, and very low levels of faith. Two-thirds (71%) of patients reported one or more spiritual problems, for which the majority (54%) wanted to receive attention.
When we look at these results, we can see that in both groups approximately two-thirds of the participants reported one or more spiritual issues, either R/S struggles or spiritual problems. In this sense there was little difference between the predominantly religiously affiliated American sample (77% Christian) and the mostly unaffiliated Dutch sample (34% unaffiliated, 42% Christian but not churchgoing). This suggests that spiritual and existential questions may be independent of religious beliefs, considering that in a secular country in which religion is not an active part of most peoples’ lives (the Netherlands), the majority of the patients indicated they are struggling with spiritual issues.
Since the measures used in the two studies, and their specific questions, are different a more in-depth comparison is not appropriate. However, the questions in both studies are about issues addressed by chaplains. The findings suggest that in both countries two-thirds of palliative care patients might benefit from a chaplaincy visit. In fact, the patients in the Dutch study were asked about receiving attention for their spiritual problems and more than half reported they would welcome such attention.
Unfortunately, previous research points to gaps in spiritual care in palliative care in both the Netherlands and the U.S. In the Netherlands, one study found that of the quarter of Dutch patients who received palliative care, only 13% received support from a chaplain (Brinkman-Stoppelenburg et al., 2015). Moreover, most palliative care teams in the Netherlands reported their team lacked expertise in spiritual care (Ettema et al., 2015). A 2013 study of U.S. palliative care programs found that just more than one-third (38%) had a chaplain on the palliative care team (Spetz et al., 2016). A retrospective chart review of 402 patients who died in a major academic medical center found that less than half (47.5%) of these patients had any documented spiritual care (Ernecoff et al., 2020).
Further research is needed to clarify the relationship between religious belief and affiliation and spiritual/existential needs among patients receiving palliative care. However, the findings from these two studies suggest that regardless of religious affiliation, many palliative care patients are are experiencing problems finding meaning and peace. This points to the importance of including spiritual care in palliative care. Unfortunately, it appears that many palliative programs in the Netherlands and the U.S. do not have the resources to help their patients with these issues.
Brinkman-Stoppelenburg A, Onwuteaka-Philipsen BD, Heide A van der. Involvement of supportive care professionals in patient care in the last month of life. Support Care Cancer. 2015 Oct 1;23(10):2899–907.
Damen, A., Exline, J., Pargament, K., Yao, Y., Chochinov, H., Emanuel, L., Handzo, G., Wilkie, D.J., Fitchett, G. (2021). Prevalence, predictors and correlates of religious and spiritual struggles in palliative cancer patients. Journal of Pain and Symptom Management. Online publication May 10th. Doi: 10.1016/j.jpainsymman.2021.04.024 and
Damen, A., Raijmakers, N., Van Roij, J., Visser, A., Van den Beuken-Everdingen, M., Kuip, E., Van Laarhoven, H., Van Leeuwen-Snoeks, L., Van der Padt-Pruijsten, A., Smilde, T., Leget, C., Fitchett, G. (2021). Spiritual well-being and associated factors in Dutch patients with advanced cancer. Journal of Pain and Symptom Management. Online publication October 14th. Doi https://doi.org/10.1016/j.jpainsymman.2021.10.004
Ernecoff NC, Wessell KL, Hanson LC, Dusetzina SB, Shea CM, Weinberger M, Bennett AV. Elements of Palliative Care in the Last 6 Months of Life: Frequency, Predictors, and Timing. J Gen Intern Med. 2020 Mar;35(3):753-761. doi:10.1007/s11606-019-05349-0. Epub 2019 Oct 24.
Ettema E, Wulp M, van Leeuwen R, Leget C. Embedding of the spiritual dimension in pallia-tive consultation services in the Netherlands: inventory, evaluation, and recommendations. Prog Palliat Care. 2015 Oct 27;23(5):259–66.
PEW Forum. America’s changing religious landscape. Available at: https://www.pewforum.org/2015/05/12/americas-changing-religious-landscape/. Accessed November 9, 2021.
Spetz J, Dudley N, Trupin L, Rogers M, Meier DE, Dumanovsky T. Few Hospital Palliative Care Programs Meet National Staffing Recommendations. Health Aff (Millwood). 2016 Sep 1;35(9):1690-7. doi: 10.1377/hlthaff.2016.0113.
Annelieke Damen is a PhD candidate at the University of Humanistic Studies in Utrecht, the Netherlands. Her research focuses on outcomes of chaplaincy and spiritual care