Editorial

Palliative Care and Vulnerability of Self

Joakim Öhlén
Senior Lecturer, Institute of Health and Care Sciences, Sahlgrenska Academy, Göteborgs Universitet, Sweden

PP: 47 - 48

Abstract

When we are exposed to patients and significant others’ existential issues in palliative care, we not only come close to their vulnerable selves, but also most often come in contact with our own selves. Or, as Avery Weisman states 'Healing is bilateral' (Weisman 1993, p.16).

This refers to the interpersonal processes most often involved when someone suffering is comforted or consoled. When we mediate comfort and consolation, the sufferer may not be the only one affected. The comforter may also be comforted and even transformed through the shift of perspective in the consoling event (Norberg et al 2001). However, facing vulnerability of self and others takes courage, and thus, may be risky.

In palliative care there are numbers of issues to be dealt with which can be hazardous or uncertain for the palliative care provider and as a consequence – regardless of its significance for the patient – may be hidden, avoided or neglected in practice. Such issues are highlighted in this section of this special issue on palliative and supportive care: sexuality, intimacy, guilt, shame, grief and spirituality.

Coming closer to such phenomena may likely enhance practical wisdom. In this way the contributors present insights of significance for palliative care team members to prudently and wisely act with sensitivity in the palliative care of the very ill and dying and the significant others involved (Öhlén, 2002).

Keywords

palliative care, supportive care, end-of-life patient care

Article Text

A common thread in the papers of this section is the presence of existential issues. The first article by Amanda Hordern and Annette Street explores how sexuality and intimacy is communicated in palliative care. Through a reflexive inquiry of Australian patients with cancer and their health professionals these authors reveal how intimacy and sexuality is avoided in palliative care encounters and transformed through the use of neutralized terms by professionals. Talking with patients about their vulnerability due to lack of intimacy following advanced cancer might be very challenging. However, the main results of the study present an image of professionals who unintentionally act powerfully while dialoguing with patients. A minor part of the result presents negotiated communication with potential of providing an empowering dialogue.

Two papers explore spirituality: Kittikom Nilmanat and Annette Street from a Buddhist stance, and Maria Arman Rehnsfeldt from a Christian view point. The first of these report an ethnographic case study of Thai family members to patients with AIDS. In the Buddhist context, the AIDS sickness became linked to a belief in karma, and components of the spiritual journey associated are presented. The second study reports an interpretive inquiry based on reflexive dialogues with nurses working in anthroposophic palliative care in Sweden about nuances of 'bearing witness' as an act of caring. The nurses discriminated between seeing and telling, pointing out that courage is needed to become a witness, in order to move into unknown fields in encounters and affirm what has been witnessed to the patient. The meaning of this is further elaborated by the author, through a lens of theory and existential philosophy based in Christian tradition.

Finally, two papers focus on family issues. Anthony Love provides a literature review? of grieving processes and supporting people with grief. Through evaluation of the current research, his paper provides knowledge to advance practice. The paper is focused on adults, while acknowledging the grieving of children and adolescents. Informative and practical guides for the assessment of grief reactions and bereavement needs are included. The family-oriented paper by Birgitta Andershed and Carina Werkander Harstäde reports Swedish next of kin’s feelings of guilt and shame related to end-of-life care, through secondary analysis of interviews. Guilt was related to several aspects of the participants’ perceived own inadequacy in relation to the dying person, while shame was related to inadequate actions of others toward the dying person. Both kinds of feelings affected the participants’ existence negatively, and thus, touched their vulnerable selves.

These five papers are contextualized in palliative care from three continents: Asia, Europe and Australia. There is indeed a cultural diversity which needs to be acknowledged. Buddhist or Christian perspectives are more or less taken for granted in some communities, while relatively unknown in others. This points to the need to challenge our own assumptions wherever we are taking part in palliative care. However, the tendency toward vulnerability of the self seems to have relevance in a number of cultural traditions globally. Let’s take the risk of facing the certain uncertainty of our selves, patients and significant others. Challenges for the future includes further inquiry of how these demanding issues are socio-culturally framed, mediated and communicated in communities and in palliative care practice.

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