Spiritual Care in Serious Illness: Does Everyone Need It?
George Fitchett, DMin, PhD, Professor
Department of Religion, Health & Human Values, Rush University Medical Center, Chicago, Illinois and Director, Transforming Chaplaincy
Does everyone with serious illness, advanced cancer for example, need spiritual care? Stop for a minute and think of how you would answer this question. Some of you may have said, “Yes.” Maybe some of you said, “No, not everyone.” If that is what you said, then what is your best guess about the proportion of people with serious illness who do need spiritual care? Is it most people, for example two-thirds or more, or a smaller proportion, perhaps a quarter or fewer?
A study that addresses this question was published over ten years ago and the findings have stuck in my mind ever since. It was a study of spiritual distress among 113 patients with advanced cancer who were admitted to an acute palliative care unit for treatment focused on quality of life. You will probably agree with me that these are patients with very serious illness. The study was conducted by a team at The University of Texas MD Anderson Cancer Center in Houston in Texas (Hui et al., 2011). All the patients received a spiritual assessment by an experienced chaplain on the team, Steve Thorney. Steve used a model for spiritual assessment that he and his colleagues had developed and used for many years. The model focused on whether the patient was experiencing spiritual distress in any of 7 domains, including despair, meaninglessness, and guilt or shame.
For the study, Steve went back to his chart notes; for each patient he recorded whether he had assessed distress was present for each of the 7 domains. Figure 1 shows what he found. You will see from the Figure that half of the sample had little or no spiritual distress; 42 patients had distress in 0 domains and 14 patients had distress in 1 domain (42+14 = 56; 56/113 = 50%). In contrast, 23% had moderate/high distress; that is spiritual distress in 3 or more domain
Are you surprised that half of these patients had little or no spiritual distress, half of these very seriously ill patients? Since reading the study I have wondered if it was just an outlier; it is quite possible the findings were just the result of an unusual sample.
In the past ten years other studies of religious/spiritual (R/S) need in patients with advanced illness have been published. I have put 4 other studies in Table 1 along with the findings from Hui and colleagues (2011). Each of these studies examined R/S concerns in patients with serious or advanced illness. To my eyes they tell a similar story. As you can see in the bottom row of the Table, between one-third and half of these patients had no R/S concern or distress, between one-fifth and half had low levels of R/S concern or distress, and between 10% and 25% had moderate or high levels of R/S concern or distress.
What message do you take from these studies? I see two messages here. The first is that a whole lot of patients with serious illness, perhaps half or more, are coping quite well; God bless them. These patients may want or welcome spiritual care, but this research suggests they don’t have the kinds of spiritual pain or needs that compromises their quality of life or emotional well-being. The second message is that there is a smaller proportion of patients with serious illness, perhaps 10%-25%, who are having a very tough time. Spiritual care should be offered to them without waiting for them to request it.
This research also points to the importance of identifying patients who are potentially in the latter group, those experiencing moderate to high spiritual distress. How we do that may vary by clinical area. In clinical areas where many of the patients have serious illness, as was the case for the patients in the palliative care unit in the study by Hui and colleagues (2011), this identification may require a spiritual assessment for every patient by qualified chaplain. ICU units may also be settings where this approach makes sense. In other settings, including out-patient clinics and managed care programs, it may make more sense for non-chaplain colleagues to use validated spiritual screening questions; Delgado-Guay et al. (2016) is an example of that approach.
Because no screening questions are perfect, and because a patient’s situation can change dramatically in a short period of time, our colleagues on the interdisciplinary team, especially physicians, nurses, and social workers, need to be trained to be good spiritual care generalists. That is, they need to know how to identify when patients may be experiencing R/S distress and make referrals to us for further assessment.
I think it is good news to see evidence that many people facing serious illness, perhaps as many as one half, are coping well and not experiencing R/S distress. However, the evidence also points to a smaller group who may be struggling with painful R/S distress that may compromise their quality of life and emotional well-being. We need to work with our colleagues to implement effective spiritual screening and assessment, to identify these patients and offer them effective spiritual care.
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Hui D, de la Cruz M, Thorney S, Parsons HA, Delgado-Guay M, Bruera E. The frequency and correlates of spiritual distress among patients with advanced cancer admitted to an acute palliative care unit. Am J Hosp Palliat Care. 2011 Jun;28(4):264-70. doi: 10.1177/1049909110385917. Epub 2010 Nov 7.
Michael NG, Bobevski I, Georgousopoulou E, O’Callaghan CC, Clayton JM, Seah D, Kissane D. Unmet spiritual needs in palliative care: psychometrics of a screening checklist. BMJ Support Palliat Care. 2020 Dec 1:bmjspcare-2020-002636. doi: 10.1136/bmjspcare-2020-002636. Epub ahead of print.