Spiritual Care at the End of Life: Who Defines a Good Outcome?
Abstract & Commentary
By Howell Sasser, PhD
Associate, Performance Measurement, American College of Physicians, Philadelphia, PA
Dr Sasser reports no financial relationships relevant to this field of study.
Synopsis:Those receiving spiritual support from medical personnel rather than community-based religious organizations were more likely to receive hospice care at the end of life.
Source:Balboni TA, et al. Provision of spiritual support to patients with advanced cancer by religious communities and
associations with medical care at the end of life. JAMA Intern Med 2013;173:1109-1117.
- Those with high levels of religious involvement and support were less likely to receive hospice care and more likely to receive aggressive treatment measures at end of life.
- Those who received high levels of spiritual support from those in the medical system were more likely to receive hospice care rather than ICU care and other aggressive measures.
- Those with high levels of religious involvement and support were more likely to recognize that they were dying and had higher self-reported quality of life.
Between 2002 and 2008, researchers in New England and Texas recruited 670 adults (age ≥ 20 years) with advanced cancer diagnoses who had an "informal" (i.e., unpaid) caregiver. Baseline interviews recorded demographics, diagnosis-related details, and information related to participants' sources of spiritual care, the importance of religion in their lives, and their quality of life (QoL). Participants were asked to rate on a five-point scale the extent to which their spiritual needs were being met by their religious communities (clergy, lay visitors, congregation members) and the extent to which the same needs were being met by the "medical system" (including chaplains as well as physicians and nurses). The results of each question were dichotomized (the lowest three levels as low and the highest two levels as high) for analysis. Religious coping was measured with the 21-point Brief RCOPE scale, and the results were also dichotomized at the median (a score of 12) as low or high for analysis. QoL was assessed using the McGill QoL and SUPPORT questionnaires. Important aspects of QoL that were measured included the quality of the patient-physician relationship, patient reports of having had end-of-life (EoL) discussions with their physicians, and patients' preferences for aggressive vs comfort care.
The main outcome was the nature of EoL care received by each participant. Medical records were reviewed to determine whether a participant was treated in inpatient or outpatient hospice in the last week of life, whether s/he received "aggressive" care measures (treatment in an intensive care unit [ICU], ventilation, or resuscitation) in the last week of life, and whether s/he died in an ICU. QoL also was included as an outcome. Caregivers were interviewed to assess participants' psychological, physical, and overall QoL at the time near death.
Because the study focused on EoL care, only those participants who died during the study period (n = 379) were eligible for inclusion in the analysis. A further 36 lacked complete data, leaving a final sample of 343. Participants' average age was 58.3 (± 12.5). About half were male and 37% were African American, Hispanic, or of another non-Caucasian race or ethnicity. Sixty-eight percent described religion as very important to them, and 43% were classified as having high religious community support. Thirty-seven percent had had an EoL discussion with a physician and 25% expressed a preference at baseline for aggressive treatment measures. Sixty-one percent of those with low religious community support and 46% of those with high religious community support reported having advance care planning (for example, a living will or a "DNR" order).
Participants reporting high levels of spiritual support from medical personnel (including chaplains) had a greater chance of receiving hospice care (odds ratio [OR], 2.62; P = 0.001), a lower chance of receiving aggressive interventions at EoL (OR, 0.41; P = 0.02), and lower chance of dying in an ICU (OR, 0.25; P = 0.003), all as compared with those reporting high levels of spiritual support from a religious community. These findings were even more pronounced when the analysis was restricted to those with high scores for religious coping or to racial and ethnic minority participants. The analysis was not broken out by race/ethnicity, but the actual proportions in the minority category were 55% African American, 44% Hispanic, and 1% "other." Those with high religious community support also had significantly less hospice care (P = 0.02), received significantly more aggressive interventions at EoL (P = 0.03), and were more likely to die in an ICU (P = 0.01), as compared to those with low religious community support.
This study raises a number of interesting questions about the way decisions at EoL are framed, how the physician-patient relationship is affected by current patterns of medical practice, and the role and limits of social support. To evaluate how the study answers these questions, it is instructive to consider the assumptions that the investigators seem to make, but which are left largely unspoken.
The first and most important of these deals with how value is assigned to outcomes. The characterizations of hospice care as appropriate and of ICU care as inappropriate in the context of EoL represent an assignment of value. Contained in it are arguments from cost (hospice care is less expensive than ICU care), allocation (sophisticated ICU resources should be expended on those most likely to benefit from them), and preference (lower intensity care is more comfortable and better preserves patient dignity). These arguments are valid, but not exclusively so. They represent choices and values that could — indeed would — be seen differently by people with different experiences, preferences, and goals.
Current trends in policy and research support the idea of recognizing and respecting patients' wishes. There is even evidence that clinical outcomes are better when decision-making is shared.1,2,3 However, tension is created when patients' goals do not align with what research evidence suggests is most efficient, economical, or equitable. This is especially true with EoL, when decisions have added emotional weight. There is no reason to suppose that a preference for hospice care and an avoidance of aggressive interventions is less ethically valid than any other choice, but if "patient-centeredness" is to be respected, it also must not be seen as superior to all other choices. From this perspective, the present study might be re-evaluated on the basis of the number of patients who participated in appropriate decision-making and whose wishes were complied with. From an ethical point of view, all such cases are successes.
A second assumption relates to the consequences of the "medicalization" of EoL decisions. It is increasingly common for hospitalized patients to be treated by hospitalists regardless of whether they have a pre-existing relationship with a primary care physician. This means that important care choices are made or informed by clinicians who likely do not have experience with their patients' pre-illness lives and attitudes. In the absence of such knowledge, clinicians must be guided by prevailing norms supplemented by what they can glean from the patient. The net effect of this is to narrow what options are discussed to the most uncontroversial.
By comparison, patients' clergy, friends from church, and family members are much more likely to know their habits and preferences, and to know how to contextualize EoL discussions, even if they may not be able to present specific options. The present study plainly judges such relationships (as measured by high religious coping and high religious community support) as having a negative effect on the choices made by exerting influence in favor of aggressive interventions. Yet there is more to the picture. Those with high religious community support were also significantly more likely to be aware that they were dying, and they had significantly higher self-reported QoL, both as compared with those who had low religious community support. This suggests a more realistic outlook and better psychological integration, important factors in clear and independent decision making. The input of physicians in EoL decisions is clearly very important, but it is also the case that the current structure of medical care limits the participation of physicians who might be best placed to know and respond to the patient.
A third assumption deals with the distinctness of EoL as a life phase. It is certainly true that death and dying are events without (personal) precedent in each person's life. As such, they oblige us to make new and unfamiliar choices. However, it seems implausible to think that these choices are not colored by earlier experience (both personal and social). The extent to which these influences are common to the patients, physicians, hospital culture, and community weighs heavily in how well EoL is integrated into the life that precedes it. In the present study, minority patients were found to be less likely to opt for hospice care and decline aggressive measures. This must be seen in the context of minority patients' prior access to medical care and experience of medical decision making. A history of poor access to care might make hospice look like a lower-quality, less technologically advanced option. To have the chance to choose what one feels has been denied in the past is a powerful motivator. This is only the most obvious example. Other more subtle factors in patients' experiences, and the ways in which they differed from those of their physicians and the dominant culture of the hospital, also played a part.
This study is a welcome reminder of the role that physicians and others can and must play in helping patients make decisions in areas that are more than simply "medical." Patients must rely on those with expertise that they lack to navigate unfamiliar situations. However, it is also important to remember the diversity of experiences and expectations that all parties bring to these interactions. Patients' preferences may not always align with the dictates of "evidence," and those whose professional lives are driven by what is or is not evidence-based must be careful to keep the patient and his/her wishes in the center of the picture.
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- Weiner SJ, et al. Patient-centered decision making and health care outcomes: An observational study. Ann Intern Med 2013;158: