Abstract
Abstract
Background:
Research shows that religion and spirituality are important when persons cope with serious and life-threatening illness. Patients who receive good spiritual care report greater quality of life and better coping, and such support is strongly associated with greater well-being, hope, optimism, and reduction of despair at end of life. Despite these benefits, evidence shows that many patients and caregivers (P/C) refuse spiritual care when a hospice team offers it, possibly resulting in unnecessary suffering.
Objective:
To better understand what contributes to spiritual support acceptance in hospice care.
Design:
Quasi-experimental quantitative study.
Setting/Subjects:
200 patients admitted to hospice.
Measurements:
Participants were divided equally into intervention and control arms. Control participants received standard information about the availability of chaplain support and an offer for referral to chaplain services. Intervention participants received educational intervention that explained hospice chaplain services and the evidence-based benefits of spiritual support. The association of chaplain acceptance was measured with treatment group, patient age, disease, church affiliation and support, sex, bereavement risk, and place of residence.
Results:
Among intervention participants, 64 (64%) accepted spiritual support versus 52 (52%) of control participants. The intervention arm's acceptance rate was higher than the control arm after adjustment for other variables. The variables associated with acceptance were age, primary diagnosis, and place of residence.
Conclusions:
This research suggests that educational intervention that explains spiritual care in hospice and its benefits contributes importantly to greater acceptance and allows P/C to gain the benefits of spiritual support during end-of-life care.
Introduction
Spiritual care has been recognized as an essential component of palliative and hospice care in the United States.1,2 It is seen as an indispensable domain in the care at the end of life for seriously ill patients and their caregivers. 3 Recent studies have demonstrated increased interest in spiritual care and have illustrated the benefits of spiritual care for dying patients. 4 The majority of hospice and terminally ill patients recognize their spiritual needs as important at the end of life. 5 They believe that routine spiritual support affects their well-being. 6 Religion or spirituality is important when coping with a substantial, life-threatening illness, and patients who receive good spiritual support—understood as evidence based and provided by professional and trained clinicians—report greater quality of life (QOL) and improved coping ability.7,8 Furthermore, spiritual support is associated with patients' greater well-being and their happiness, hope, optimism, and gratefulness. 9 Such support protects them from despair at the end of life. 10 Research clearly shows that spiritual interventions contribute to important benefits at the end of life. 11 Although provision of spiritual support is the responsibility of all hospice team members, chaplains are spiritual care experts, 12 whose primary responsibility is provision of such support. 13
The National Hospice and Palliative Care Organization has regulations and guidelines for hospice care. They recognize these benefits, and they stress the importance of spiritual care for both the patient and the primary caregivers. 3
Despite the important benefits spiritual support offers to hospice care recipients,5,14,15 the number of hospice patients and caregivers (P/C) who agree to receive spiritual support from the hospice team continues to be low. Yet, recent studies indicate that the majority of seriously ill patients desire to receive spiritual support from their providers (67%), religious communities (78%), and chaplains (45%). Patients recognize their spiritual needs as important at the end of life, 5 and most P/C welcome chaplain interventions. 16 Furthermore, in similar clinical settings, only about 40% of parents of seriously ill children request chaplain support, even though the majority considers chaplains as members of the health care team. 17 Patients' conversations with end-of-life care providers often lack the discussion about spiritual support, 18 and inadequate spiritual support might result in unnecessary suffering. 19
The literature shows that the number of studies on referrals and chaplain acceptance rates in acute settings is few, and research on hospice chaplains' referrals and acceptance rates for hospice patients and their families is almost nonexistent. These study data suggest that a large number of patients might not take advantage of or are not aware of professional spiritual support.
Hospice care continues to lack empirical guidance on how to best integrate spiritual support into the care of persons facing terminal illness. 20 Spiritual support in hospice requires evidence-based research for it to be an effective element of end-of-life care. 13 For this reason, this study aimed to identify factors that contribute to the hospice chaplain acceptance rate at patients' admission to hospice care and whether specific intervention can improve the acceptance rates of spiritual service.
Methods
Study design and data collection
This quasi-experimental quantitative research study, with one intervention arm and one control arm, was conducted over the eight months from July 1, 2017, to March 1, 2018. Participants in the control arm received standard information about the availability of chaplain support; participants in the intervention arm received additional explanation of chaplain services and the benefits of spiritual support offered by spiritual care providers (Table 1). In addition, the intervention participants received a card explaining the nature of spiritual support in hospice. The card's explanation offered concrete examples of services provided by a hospice chaplain, such as facilitation of a search for meaning in the dying process, assistance in coping with fears about decline and dying, and assistance with issues of divine and human forgiveness. The admitting staff, either a master level social worker (SW) or hospice case manager (CM), discussed with the participant the information on the card, which was placed in the admission folder. Randomization of patients allowed assessment of the effectiveness of the present practice versus an intervention and its scripted form in acceptance of spiritual support.
Aims of the Spiritual Educational Intervention
Participants sample
Participants were adult, terminally ill patients admitted to a home care hospice program that is part of a large medical enterprise in the Midwest United States. Their caregivers were paired with the patients included as participants. The patients signed a hospice admission agreement and received care either at home or in a skilled facility. Admission data were recorded in the electronic health records by the hospice SW or CM. The SW or CM assigned to the hospice P/C offered intervention according to randomization at the admission to hospice.
Data analysis
Variables were summarized as appropriate for the distribution—namely, median (interquartile range [IQR]) for continuous variables and frequency (percentage) for categorical variables. Univariate logistic regression models were used to estimate associations of variables with the outcome of spiritual support acceptance. A multivariate logistic regression model was used to estimate these associations with adjustment for all other variables (p < 0.05). The institutional review board gave exemption status to this study.
Results
In total, 200 P/C participated in the study. Table 2 outlines their characteristics, together with the summaries of variables in the intervention and control arms. The median (IQR) age was 84 (75–90) years, and 58% were female patients. The most common primary diagnoses were cancer (28.5%), dementia (20.5%), and “other” (e.g., amyotrophic lateral sclerosis, Parkinson's disease, sepsis, and malnutrition) (30%). The majority of patients resided in hospice facilities (68.5%) and had an existing connection to a faith community (71.5%). Among participants, 59 (59%) and 1 (1%) had a medium and a high bereavement risk, respectively. Patient characteristics were similar between the intervention and control arms, with the exception of place of residence. Intervention participants were more likely to be living in the home (41% vs. 22%).
Demographic Characteristics of Study Participants
Data are presented as number (%) of participants unless specified otherwise.
COPD, chronic obstructive pulmonary disease; IQR, interquartile range.
Univariate associations of each variable with the outcome of spiritual support acceptance are presented in Table 3. Of participants in the intervention arm, 64 (64%) accepted spiritual support versus 52 (52%) in the control arm (odds ratio [OR] [95% confidence interval; CI] 1.64 [0.93–2.89]; p = 0.09). Primary diagnosis was significantly associated with chaplain acceptance. In particular, chronic obstructive pulmonary disease (COPD) had a higher acceptance rate relative to cancer (OR [95% CI], 5.96 [1.20–29.68]; p = 0.02), and dementia had a higher acceptance rate relative to cancer (OR [95% CI], 2.30 [1.00–5.27]; p = 0.049). Those in a hospice facility had a higher acceptance rate than those living in their home (p < 0.001). Having a connection to a faith community was not significantly associated with chaplain acceptance (p = 0.33).
Univariate Logistic Regression Models Predicting Chaplain Acceptance
CI, confidence interval; OR, odds ratio.
The association of each variable with chaplain acceptance in adjustment for all other variables is presented in Table 4. After adjustment, the intervention arm had a significantly higher acceptance rate than controls (OR [95% CI], 2.79 [1.40–5.56]; p = 0.004). Older patients were less likely to accept chaplain services (OR [95% CI], 0.97 [0.94–1.00] per year of older age; p = 0.046). Those with COPD or heart disease were more likely to accept chaplain services than those with cancer (COPD vs. cancer, p = 0.02; and heart disease vs. cancer, p = 0.04). Patients with other diagnoses were also less likely to accept chaplain services relative to those with COPD (p = 0.01) or heart disease (p = 0.01). Those in a facility had a higher acceptance rate than those in their homes (p < 0.001). A connection to a faith community was not significantly associated with acceptance of chaplain services (p = 0.34).
Multivariate Logistic Regression Model Predicting Chaplain Acceptance
Discussion
Research strongly indicates widespread agreement that spirituality has an important role at the end of life. 21 Every human being is considered spiritual in nature and has spiritual needs. 22 Ultimately, conflict between science and spiritual and between spiritual and religious needs can be reconciled with scientific knowledge. 23 For that reason, the International Association for Hospice and Palliative Care recently developed a list of essential practices in palliative care. 24 The list provides 23 practices with different intervention levels under different domains, one of which is psychological/emotional/spiritual care.
Increased effort by hospice teams to explain the value and nature of spirituality, to broaden the understanding of spirituality, and to bring to light concrete examples of services provided by hospice chaplains helps widen the acceptance of the benefits that such support provides at end of life. This study confirms this effect.
The roles of hospice professionals are widely misunderstood, especially the role of the hospice chaplain, 25 and spiritual care continues to be addressed poorly. 26 Many health professionals struggle with how to define the role of chaplains, 27 and even hospice team members often struggle with the proper understanding of chaplains' role in the hospice team. When patients understand the role of a spiritual care provider and the nature of spirituality at the end of life compared with other religious practices, hospice chaplains see a greater acceptance rate of the spiritual service. When spirituality and religion are not clearly defined (generally), patients might feel threatened, humiliated, or judged when misconceptions are not clearly addressed. 28 Similarly, when spiritual support is offered, those who feel a strong association with their faith communities might either fear the loss of their own spiritual support from their church congregation or the possibility of shunning by their religious leader for seeking support from a person outside their specific denomination. A greater acceptance rate can be achieved through explanation that hospice chaplains are professional spiritual care counselors with comprehensive training. 13 In many areas of care (e.g., counseling, critical incident stress management, basic psychological support, emotional care, and advance care planning), they do not evangelize and do not attempt to change P/C beliefs, impose uncomfortable practices, or replace someone's pastor or spiritual leader.
Recipients of hospice care can make informed decisions about hospice chaplain support when they understand the definition and nature of spiritual care and its relationship with religion. Puchalski 29 suggests that spirituality is a need to find meaning in life. Although this need could be religious in nature, it often is not. Patients who are not religious or members of an organized religion still look for the meaning of their lives. Other authors agree and define spirituality as a human search for meaning. 22 Religion, by comparison, is defined as a set of beliefs delineated by a religious institution and often includes the existence of a higher power or a God. 30 Nonetheless, the two terms are often interconnected and carry distinctive paradigms.
Because the death experience is characterized not only by periods of distress but also by states beyond fear, pain, and denial, 31 support from spiritual care providers is extremely important for many dying patients. Chaplains are professional spiritual care providers with comprehensive training in counseling, ethics, and religious and cultural diversity, who are able to address P/C and their existential questions, spiritual pain, suffering, concerns with the sacred, 13 and a gamut of other needs. Besides creating a sacred space, chaplains are accountable for provision of high-quality spiritual care to their patients 13 and thus are able to contribute to a greater QOL among the dying population.
Every professional care provider can offer some form of spiritual support. However, data show that many care providers (especially physicians and nurses) do not feel competent or prepared to provide such support. The data also suggest that the best way to offer spiritual support is through professional spiritual care providers and chaplains. 6
Furthermore, chaplain services significantly lower the rates of hospital deaths and contribute to higher rates of hospice admissions. Research suggests that such services are associated with significantly lower rates of hospital death at hospitals that provide these services than at hospitals that did not provide them. One explanation is that patients whose spiritual needs are met are less likely to receive aggressive treatment and are more likely to receive hospice care. 32 Research literature indicates that in most cases, patients themselves asked for chaplain services through their nurses. They request chaplain services for religious and spiritual reasons.33,34 In addition, referrals were made in response to end-of-life issues, when patients felt badly or experienced negative effects of treatment, when they were in pain or depressed, or when the sacrament of the sick was requested. 33 In settings other than hospices and palliative care departments, chaplains are referred to P/C only when patients have a specific need or distress or when P/C individually request such services. 34 This research confirms previous study indication that education and information about chaplain services and the role of spiritual care in hospice increase the number of referrals to chaplain services. 35 One important obstacle for SWs and CMs in the introduction of P/C to spiritual care is the fear of being disrespectful of P/C individual beliefs, as evidenced by the discussion of this issue with hospice team members involved in This study.
The fact that the acceptance rate differs among populations with different diagnoses might be explained by the different trajectories of disease progression at the end of life. 36 Although patients with advanced COPD have well-being similar to patients with lung cancer, they request less support than those with cancer. 18 COPD symptoms might cause patients to fear suffocation, exacerbation, and a range of other symptoms 37 that might prompt a request for additional support from a spiritual caregiver—obviously, in addition to all medical and pharmacologic interventions already provided. In contrast, patients with a heart condition that creates a critical situation seek early spiritual support to help them manage the consequences of their disease. 38 This variation suggests that the trajectory of decline in terminally ill patients with constant decline, despite periods of recovery, causes unpredictability and anxiety that might cause them to seek comfort in their religious beliefs and spirituality. The trajectory is clearly or markedly different from patients with cancer, whose decline is more predictable and steady. The trajectories of cancer and dementia are not as unpredictable as congestive heart failure or COPD, which might explain the differences in religious and spiritual needs and chaplain acceptance rates.
The connection to a faith community did not create a significant difference in the acceptance rate. However, studies have shown that for patients, simultaneous religious support from their congregation and spiritual support from their health care team were associated with higher rates of hospice use and fewer aggressive treatment interventions. 39 Furthermore, research indicates that when patients' religious and spiritual needs are not met, they are more likely to die in an intensive care unit than when they receive the support of hospice services. 40
Patients residing in care facilities accept spiritual care at a higher rate than those living elsewhere because patients often lose connection with their faith community and spiritual support while staying at the facilities. In addition, many residential institutions lack professional chaplains. Although caregivers may want additional support for their loved ones, especially when the loved ones are close to death, additional support is not always possible because of limited resources and lack of time. 41 Furthermore, family members perceive that when the spiritual needs of loved ones residing in nursing homes are addressed, they have better care and are more satisfied with their lives. 42 Explanation for P/C that a hospice chaplain could provide additional support and fill that gap may facilitate more requests for hospice chaplain services.
Limitations
Although the findings of this study represent an important contribution to understanding how chaplain services could be increased, its limitations need to be considered. The study focused on the chaplain acceptance rate of a specific population and on a small group of participants. Often, this intervention was offered when P/C were overwhelmed by the large volume of information at the time of admission to hospice services. Under this stressful circumstance, P/C may not have fully understood the services offered to them.
This study involved a group of participants from a rather small geographic area where diversity was not represented. All participants were white and lived in rural or small urban areas, and the majority of them were of the Judeo-Christian faith. This predominance might preclude the generalization of findings beyond this sample.
Conclusion
The efforts to introduce spiritual support to the terminally ill population should be increased, studied, and offered in a way that provides the most benefit to patients at the end of their lives, as well as benefits their caregivers. When the chaplain role is explained, P/C tend to welcome spiritual support from hospice professionals. This study begins to shed light on how and what demographic factors contribute to the acceptance of chaplain support. It suggests that a simple and specific educational intervention at the time of admission to hospice might contribute to greater acceptance rate of spiritual care from hospice chaplains. This study fills the gap regarding increased spiritual support to dying patients and suggests that specific interventions might contribute to greater acceptance rates of such valuable services. This knowledge might help hospice agencies improve the quality of service they offer through increased acceptance rates of spiritual support provided by hospice spiritual care clinicians. Such support improves P/C QOL substantially.
Footnotes
Author Disclosure Statement
No competing financial interests exist.
