The power of consoling presence - hospice nurses’ lived experience with spiritual and existential care for the dying

Being with dying people is an integral part of nursing, yet many nurses feel unprepared to accompany people through the process of dying [1]. Bearing witness, listening and staying present as the patients’ suffering unfolds can be emotionally challenging because it exposes the nurses to their own vulnerability and finitude [2, 3]. Western society’s fast-paced healthcare environment conditions us to view death as a physiological event and a failure [4, 5] rather than a natural part of the human lifecycle and a sacred passage of a life [1, 6]. Easing and alleviating suffering are at the heart of nursing. As a basic category of care, the concept of suffering comprises the dying patient’s whole experience of life, health and illness in a physical, mental and spiritual sense [7].

Research indicates that a significant number of terminally ill patients experiencing spiritual and/or existential issues long for adequate spiritual or existential care and counseling [8]. Nevertheless, many healthcare professionals report a lack of skills in psychosocial and spiritual care of dying people [9‐13] resulting in high levels of moral distress, grief and burnout [13]. Halifax [6] points out that we need to explore ways of being with the dying that can serve both the care giver and the dying person practically and spiritually.

There seems to be no single agreed definition of spiritual care in the nursing literature. Henceforth, this term is open to interpretation [12, 14‐17]. This study has adopted a pragmatic and functionalist epistemological point of departure, since it is targeted at the practical implications of the nurses’ spiritual and existential care experience, rather than the ontological questions related to the conceptual framework of spiritual care.

Nurses working with the dying and their families often witness spiritual and existential suffering [18] Hospice nurses have especially chosen to work with palliative care patients in their terminal phase. This study will therefore describe their experiences with alleviating spiritual and existential suffering, to see what can be learned about ways of being with the dying that can serve both the caregiver and the dying person practically and spiritually.

Two themes and seven subthemes from the structural analysis are shown in Table 1.

Results will be presented in the text below, including quotes to illustrate the themes.

In this study the nurses narrated about their lived experiences with alleviating dying patients’ spiritual and existential suffering.

Three themes emerged through the critical comprehension, (discussion): Compassionate silence, Uncovering the wound and Wounded healers. To develop this last step in the analysis, the text was read as a whole, taking into account the authors’ preunderstanding, naive reading, structural analysis, previous research and relevant theory.

Our results show that “being there” for the patients and their relatives lied at the heart of the nurses’ spiritual and existential care practice. “Being there “ was about conveying consolation through silent presencing, companionship, deep existential and religious conversations, and by supporting the patients’ expressions of faith and rituals. The results suggest that the nurses were able to use silence in a therapeutic and consoling manner, alternating skillfully between invitational and compassionate silence. Through caring presence and shared silence, the nurses offered a context and space where patients might feel safe enough to open up, and express their existential, spiritual or religious concerns, allowing the nurses to help them interpret their suffering in a meaningful way.

Over several years the nurses’ mental focus had shifted from “doing something” for the patient” to “being with the patient”. They had learned through experience that modern medicines’ emphasis on “doing”, “fixing” and “curing” needed to be balanced with the quality of being present with the dying and their families [13]. According to Rushton et al [13], presence refers to the capacity to be fully there with a quality of attention and authenticity that informs relationships and actions. When nothing else can be done, bearing witness to suffering are healing acts in themselves and are often “enough” [13]. Covington [31] points out that caring presence has been discussed in the nursing literature as a way that nurses can be with patients to provide an atmosphere of shared humanness and connection.

This resonates well with our results. In the following, the nurses’ use of silence will be discussed in light of Back et al’s [32] research. According to them silence may increase the nurses’ awareness of patients’ facial micro expressions or barely perceptible changes in voice tone, thus helping them to “tune in on” existential and spiritual distress. However, Back et al [32] point out that consoling through silence is not simply a matter of withholding speech. Drawing on several studies, they discuss how silences are filled with texture and feeling, and may have therapeutic, neutral or destructive effects on the therapeutic relationship. Silences can feel awkward, indifferent or even hostile, or comforting, affirming, and safe. If the clinician looks uncomfortable, generating palpable feelings of unease, this may be transmitted and misinterpreted by patients as i.e. judgment, disapproval, and ambivalence. Opposed to awkward silences, comforting silences resonate with the ease of patients and nurses exchanging feelings and thoughts that do not quiet make it into language. Back et al [32] comment on communication teachers’ frequent recommendations of using invitational silence. Here silence is deliberately created to invite patients to think, feel and express themselves. While acknowledging the value of invitational silence; Back et al [32] advocate a form of compassionate silence that has received little attention in health care. According to them, compassionate silence is a kind of silence that emerges spontaneously in the conversation, often when the clinician and patient share a feeling, or the clinician is actively generating a sense of compassion for the patient. Compassionate silence can be experience as a profound kind of “being with” and “standing with” in a difficult moment. It can nurture a mutual sense of understanding and care, and may be a means to console and ease the loneliness of suffering. However, our results also reveal that sometimes, just sharing the silence is not enough. In the nurse’s story about the young woman with Cancer Pancreas the nurse spoke of the need to “puncture the boil” in order to reach in to the patient’s existential and spiritual suffering.

In the following this will be discussed in light of Norberg et al’s [33] study of the phenomenon of consolation. According to them, “uncovering the wound”, (the cause of the suffering) is a necessary albeit painful part of the consolation process. In the short run, uncovering the wound (or puncturing the boil) increases the patient’s pain, because the wound becomes obvious, uncovering all that is ragged and broken. However, in the long run, exposing the wound will alleviate the pain and loneliness of suffering. According to Norberg et al [33] both parties must become ready for consolation before they are able to mediate or receive it. This involves becoming open, present and available. The nurse mediating consolation becomes “ready” through a willingness to see the wound and listen to the suffering person.

Our results show that becoming willing and ready to “just be there”, seeing and listening to the wounded patient demanded personal courage, especially when they were caring for desolate and despairing patients. Facing patients’ suffering could sometimes open the nurses’ own wounds and trigger feelings of helplessness, vulnerability, and uncertainty. The nurses expressed that giving and receiving peer support and debriefing was vital to endure the emotional pressures of being with the dying. This is in line with Miller et al’s [34] research. They point out that nurses must learn to embrace and explore their own wounds, by focusing on their own pain, and reappraising it as a source of energy and growth, literally becoming “wounded healers”. This will place them in a more informed position to understand when they will be able to provide compassion and when they may be harmful to others [34].

In Norberg et al’s [33] consolation study, the nurse mediating consolation “walks alongside” accepting the patient’s expressions of weakness, grief and pain. The suffering patients become ready for consolation by expressing their feelings. The nurse mediating consolation and the suffering patient become able to “see” and confide in each other: ” A trusting relationship creates room to uncover the wound and look at the cause of suffering. The suffering person becomes calmer and dares to look at the wound”[33]. According to them, when the wound is uncovered, in communion and dialogue, a shift of perspective takes place, enabling the suffering person to become free of the overwhelming feelings of darkness and petrification so that he or she is able to contemplate his or her suffering and reach a feeling of how to relate to it. This enables the person to place suffering within a pattern of meaning. Receiving consolation generates a shift of center for the suffering person, enabling her to “break through her shell”, and undergo new experiences and through them renew and enhance her life.

When the nurses were asked to narrate about their experiences with existential and spiritual care, their story themes evolved around sensing the patients’ existential and spiritual distress, and their attempts to mediate consolation. Whether the nurses managed to convey consolation or not varied. However, the stories reveal that the nurses’ consolation efforts were aimed at assisting the patients towards a good death. In their stories, “consoled” patients “died well”. Expressing awareness, acceptance and preparation for death, these patients died in a peaceful and dignified manner. The “un-consoled” patients were characterized by a lack of acceptance of death and a failure to actively pursue fulfillment of living in the final scenes of dying. These “un-consoled patients” were looked upon as problematic and emotionally challenging, forming the focus of peer support and debriefing. This is consistent with the research of Hart et al [35]. The hospice movements’ “good death ideology” could be recognized in the nurses’ attitudes about dying. This ideology involves an open awareness of dying, open communication, a gradual acceptance of death and settling of both practical and “interpersonal business”. Just as members of contemporary society are expected to age well with the aide of technology and a youthful spirit, dying people are expected to live well until they die and make their own choices in the process [35, 36]. Taking this into consideration, the nurses’ story about the young woman can be interpreted as a story about a “good hospice death”.

However, the concept of “the good hospice death” is critiqued and debated in the literature. Hart et al [35] discuss the underlying ideology of the “good death concept” as a means for social control, stating that the choices and opportunities of dying people are powerfully shaped and constrained by those caring for them, and that patients may implicitly be expected to conform to the normative values of the ”good death concept ”. This can be ethically problematic. As McNamara [36] points out, patients may not necessarily comply with a “good death model” that involves awareness, communication and acceptance. An array of factors including the patients’ physical and mental capacity, and their right to chose or refuse certain treatments and therapies influence the patients’ choices about how they wish to live and die. The results show that the nurses were aware of these ethical dilemmas, as they reflected on how they could encourage patients to express their distress without violating their dignity and autonomy.

KT. PhD. student, Norwegian School of Theology and Center for the Psychology of Religion, Innlandet Hospital Trust Norway, RNT, Associate professor Lovisenberg Diaconal University College, Norway.

LJD. Professor Dr. Theol., Norwegian School of Theology, Director of The Center for the Psychology of Religion, Innlandet Hospital Trust, Norway.

KK. Professor, PhD., RNT. Department of Nursing and Mental Health, Hedmark University College Norway.

VS. Professor, PhD., RNT. Lovisenberg Diaconal University College, Norway.