Spiritual care at the end of life in the primary care setting: experiences from spiritual caregivers - a mixed methods study

This study is part of a larger project aimed at improving palliative care in the primary care setting with a sequential mixed methods design. A two-step needs assessment among healthcare providers in the primary care setting was performed. This study focusses on the responding spiritual caregivers within the project.

The first part of the needs assessment was an online questionnaire that was available online from the 5th of April 2016 until the 5th of August 2016, containing open and structured questions on the participants’ most recent case of palliative care. The second part consisted of an online focus group in which the insights from the online questionnaire were explored more in-depth. The online focus group was held on a website with an interface similar to an online chat room. Participants logged into the website, using a code name and password provided by a moderator (IK), where they responded to the questions posed by the moderator and other respondents’ reactions. The website was accessible 24 h a day, from the moment the first question was presented until a week after the last question was presented. When participants clicked on a question, they could read it with its context, read any earlier comments from other respondents and write a response. Any personal information, or information that identified specific individuals or organisations was depersonalised by the moderator.

Participants in the online questionnaire were recruited through two professional associations for spiritual caregivers: the Spiritual Caregivers Association (VGVZ), and Humanistic Covenant (HV). Inclusion criteria were: 1) working as a spiritual caregiver in the Netherlands, 2) working in the primary care setting, and 3) having experience with providing palliative care. The professional associations sent the call to participate to 112 and 110 of their members respectively, whom they knew were involved in palliative care in the primary care setting. But as it is likely that these numbers overlap, the actual number of eligible spiritual caregivers that received the call is uncertain. There is also no data available on the number of spiritual caregivers practicing in primary care settings in the Netherlands. In total, 31 spiritual caregivers described the most recent case in which they had provided palliative care. In the final question of the online questionnaire, participants were asked to leave their contact details if they were interested in participating in a focus group aimed to further investigate points of improvement in palliative care. Participants who did, were invited to participate through an e-mail containing information on the procedure, subjects of discussion and the ground rules. In total, 26 were invited, and 16 responded of whom 7 declined. Finally, 9 spiritual caregivers participated in the online focus group.

After some structured questions on the characteristics of their most recent case of palliative care, participants in the questionnaire were prompted to describe their case through three open questions: 1) Can you describe the situation and the palliative care you provided, 2) Can you describe what went well in this case, and 3) Were there things that could have gone better. They were also asked to report on eight end-of-life topics whether they had discussed these and if so, with whom. These topics were ‘life expectancy’, ‘complications’, ‘treatment options’, ‘hospital admissions’, ‘palliative sedation’, ‘preferred place of death’, ‘spiritual issues’ and ‘euthanasia’.

Following the questionnaire, eight questions were posed over the course of two weeks in the online focus group. In this paper we focus on two: 1) What causes spiritual caregivers to be infrequently or untimely involved in palliative care, and 2) In what way can spiritual caregivers contribute to more frequent and earlier involvement.

The data from the online questionnaire was analysed through open coding [35]: codes were derived from the data rather than determined beforehand. First, the data was analysed and coded by IK. Second, the codes were discussed with HP, and finally, with all other authors. During this process, codes underwent content and definition changes as the analysis progressed and relations between codes became apparent. From the data, codes in three categories were identified [1]: aspects of care (i.e. the practice of spiritual caregivers) [2], dimensions that are covered (i.e. the dimensions in which care is provided), and [3] barriers and facilitators for the provision of spiritual care.

Table 1 provides an overview of the characteristics of the participants, including the subgroup of the online focus group. The majority was female and was working part-time. The participants had a broad range of age and years in practice. While every participant worked in at least one primary care setting (home, care home or hospice), half (16/31) worked in more than one, including hospitals and other settings such as psychiatric wards, institutions for the mentally impaired and rehabilitation centres.

More than half (19/31) of the participants had a Christian denomination, while nine had a humanistic and one a Buddhist denomination. Eight had no institutional affiliation. Almost half of the participants indicated they had received education in palliative care. The average number of patients at the end of life they cared for in the last year was 27, with a considerable range (0–120).

In the online focus group, we asked the participants why spiritual caregivers in general are infrequently involved in palliative care in the primary care setting, and what they can do to be involved more often, and in time. Table 5 provides an overview of the reported reasons and suggestions for improvement.

Participants in the online focus group indicated that, according to them, other healthcare providers have insufficient knowledge of and attention for spiritual care and do not know spiritual caregivers in person or how to find one. They suggested a twofold solution: healthcare providers should be better trained in recognizing spiritual distress and when to refer, while spiritual caregivers should promote their services better and making their availability more widely known. Participating in multidisciplinary meetings was suggested as a way to do so. The lack of funding for spiritual caregivers in primary care was also raised as an issue, with an apparent solution: organising insurance coverage.

This is, to our knowledge, the first empirical study describing the practice of spiritual caregivers for patients at the end of life in the primary care setting from their perspective. Spiritual caregivers provide care in several dimensions, including care for existential, relational and religious issues. We identified a wide variety aspects of this care in practice, including helping patients find meaning, acceptance or reconciliation, paying attention to the spiritual issues of relatives of the patient, and helping them all to say farewell. Other aspects we identified were performing rites, helping with the funeral or just simply ‘being there’.

In a recent study on the practice of spiritual caregivers working in palliative care in hospitals in the US, similar aspects of spiritual care were found [36]. Spiritual caregivers in that study provided spiritual care in many ways, including providing ritual support, caring for relatives, facilitating communication between patient/families and care teams and addressing familial conflicts. Still there was one notable difference in that the US chaplains emphasized religious distress more than the participants in our study. This may be explained by the fact that religion plays a larger role in the US than it does in the Netherlands [14, 37].

Regarding the dimensions of spiritual care, earlier research by The EAPC Task Force on spiritual care stated that spirituality comprises three dimensions: (i) existential questions, (ii) religious considerations, and (iii) value-based considerations (i.e. (inter) relational issues) [7]. Although the European Organisation for Research and Treatment of Cancer (EORTC) Quality of life group phrased the latter differently, it mentioned the same three dimensions of spiritual well-being [38]. In our data, we found that spiritual caregivers also deal with their patients’ emotional issues. But rather than proposing emotional issues as a fourth dimension, we feel that these emotions like anger, anxiety, and grief are intertwined with the three dimensions and cannot be seen as separate.

The participating spiritual caregivers indicated for eight topics whether they discussed these, showing the wide range of topics that spiritual caregivers talk about with patients and their relatives. Similar to the aspects of spiritual care in practice, the topics discussed are diverse. Naturally, spiritual issues are discussed, but other topics like life expectancy, treatment options and preferred place of death are also discussed regularly. As other healthcare providers are also likely to talk about these topics with patients at the end of their lives, it would be interesting to study the added value of discussing these from a different vantage point.

Spiritual caregivers also mentioned barriers and facilitators for the provision of spiritual care, such as communication with other healthcare providers, having a relationship of trust and communication with the patient. Some of these factors are mentioned as conditions for the provision of spiritual care in the Dutch guideline on spiritual care in palliative care [8]. The guideline recommends healthcare providers to take time for the spiritual issues of their patient, be open, build a relationship of trust and compassion and respect their own limitations. Similarly, in the previously mentioned study on the practice of chaplains in the US, building relationships was found to be the primary activity [36].

Although the guideline on spiritual care provision recommends that healthcare providers refer to specialist spiritual caregivers in case of suspected existential or spiritual crises [8], earlier research in the Netherlands which showed that general practitioners and spiritual caregivers rarely cooperate in palliative care [39]. Communication between healthcare providers as mentioned by the spiritual caregivers in our study, unfortunately remains unaddressed in the guideline, even though it could be critical in the shift from multidisciplinary to interdisciplinary care.

The spiritual caregivers in the online focus group mentioned that more familiarity of other healthcare providers with spirituality and spiritual caregivers is likely to lead to more referrals. Local multidisciplinary meetings were suggested as ideal opportunities to familiarize other healthcare providers with spirituality and promote spiritual caregivers’ services. Interestingly, in the guideline on spiritual care, healthcare providers are encouraged to invite a spiritual caregiver to permanently join their multidisciplinary meetings to ensure attention for the spiritual dimension of palliative care [8]. The recent establishment of regular funding the structural engagement of spiritual caregivers in primary care, both directly with patients and indirectly through multidisciplinary meetings [40], will arguably make this more feasible. Future research should examine whether this development indeed leads to an improvement in spiritual care provision to patients.

The participating spiritual caregivers also mentioned that training other healthcare providers in recognizing spiritual care needs can lead to adequate referral. This is in line with results from a recent study, which showed a positive effect of spiritual care training on the attitudes and competencies of Dutch hospital staff, including an increase of referrals to spiritual care specialists [41]. Still, this effect may be smaller in the primary care setting, where healthcare providers do not work in the same institution and thus may have more difficulty finding each other.

A strength of this study is that we asked the field to describe their practice and we used their descriptions to derive a variety of important aspects of and conditions for spiritual care. A limitation of this study is that although we feel that the study provides a relevant overview of spiritual care in the primary care setting, it is uncertain whether we reached data saturation. Firstly, as we derived the case descriptions from a questionnaire, we could not ask probing questions regarding a specific case. Secondly, we were only able to include spiritual caregivers with a North-western European understanding of spirituality. As the Netherlands is a multicultural society, harbouring people with various understanding of spirituality, this description of spiritual care in the Netherlands may be incomplete. For instance, as the Islamic view on life and death differs greatly from the Western biomedical view [42], spiritual care for Islamic patients may have a different approach, with different aspects playing a role and different topics being discussed at the end of life [43, 44]. We recommend extra attention to minority groups in future research on spiritual care in the Netherlands.

Although patients have unmet spiritual needs at the end of life, spiritual caregivers are infrequently involved in the primary care setting, due to unfamiliarity of healthcare providers with spirituality and the role of spiritual caregivers in palliative care. The overview of the practice of spiritual caregivers in this paper may provide healthcare providers such as general practitioners and district nurses with insight in the practice of spiritual caregivers. This may lead to better understanding of the added value of a spiritual caregiver in a particular patient, possibly leading to more appropriate palliative care for patients with spiritual care needs. In addition, this paper identifies opportunities to increase (timely) referrals in patients with spiritual distress. According to the field, better training of other healthcare providers in recognizing spiritual needs and a more proactive approach in the promotion of their services is needed, and spiritual caregivers joining local multidisciplinary meetings may be a good way to achieve this. The information derived from this study is used in a current study on the feasibility of involving spiritual caregivers in PaTz-groups [45], local multidisciplinary groups in the Netherlands aimed at improving palliative care in the primary care setting.

Finally, while the role of spiritual caregivers in this setting became more important as secularisation progressed, their funding has, until lately, been overlooked. Time will tell whether recent funding developments [40] will improve the involvement of spiritual caregivers, and the provision of spiritual care for patients in the primary care setting.