Dealing With the Tension Between the Patient’s Wish to Die and Professional Attitudes Toward a ‘Good Death’

Abstract

As Kuczeswski (2019) points out, one of the tensions in working with dying patients that is thematized by K€ ublerRoss in On Death and Dying is between the desire to help patients experience a good death on their own terms and imposing a right or correct way to die. Kuczewski brings to our attention not only the importance of acknowledging this tension, but also K€ ubler-Ross’s plea for openness to the patient’s experiences, narrative, and what the patient deems important at the final stages of his life—which may differ from what professionals deem important. How can we, as clinical ethicists, foster awareness of this tension as well as openness toward patients among health care professionals? We argue that this can be done through facilitating a reflective dialogue in cases of diverging perspectives on a good dying process. This is in line with Kuczewski’s emphasis on the importance of “facilitating communication,” but also goes beyond it, in that dialogue not only makes participants aware of this tension, but also enables them to overcome it—or at least to understand their patients better. As Kuczewski argues, if someone does not seem to acknowledge his impending death, or does not want to speak about it, this might be designated as ‘denial’ by professional caregivers, i.e. the inability or reluctance of a patient to enter the stage of ‘acceptance’ of his end-of-life, hence ‘getting the dying process wrong’. However, this might be a negative evaluation of something that does not deserve that predicate. At least, it is an assumption that should not be taken for granted, but requires investigation. According to the philosopher Gadamer, such assumptions cannot be prevented; we cannot escape the way in which we see the world, which is shaped by prior experiences and interactions. Yet, we should be open to the possible limitations of our views, and put them to the test, by listening to the views of others and venturing into their perspective. Only in this dialogical way, we will come to an enriched understanding of the situation and of the other (Gadamer 1975/2004). In a clinical setting, this dialogical process can be fostered by the ethicist by facilitating a reflective dialogue (Metselaar et al. 2015, 2017). Facilitating such dialogues is all the more relevant, as our society, especially in metropolitan areas, has become much more diverse. Different religious traditions and historical experiences lead to a variety of fundamental convictions, narratives and norms about death and dying (Menaca et al. 2012; Schweda et al. 2017). For instance, when it comes to different views on truth telling; do you tell the patient the end is near, or do you keep this from them – and only inform the family? For many professionals, at least in Western medicine, not informing the patient about his impending death is not only seen as impeding on patient autonomy, but also as undermining a ‘good’ dying process (Pergert et al. 2007). That this view does not always contribute to good end-of-life care, we will illustrate by discussing an actual case (anonymized) from our experience as clinical ethicists. A 68-year old woman is admitted at the ICU with acute kidney failure and endocarditis. Living in the Middle East, she has not been well the last year due to cardiovascular problems, because of which she had to quit her work. Suddenly, her condition deteriorated. Also having a Dutch passport, she traveled to The Netherlands in order to be with her husband and two children, who live there, and to be treated there. At admission at the hospital, the patient repeatedly indicates that she wants to be treated, but neither wants to be informed about her condition nor about the treatment itself. During her treatment, she allows her caretakers to treat her and stresses that she fully trusts them, but asks nothing and refuses to have a conversation about her condition with the physicians. In the course of 48 h, her condition rapidly deteriorates further. Everything is done to improve her condition, but to no avail. Concluding that further interventions aimed at the improvement of her health are futile, the staff decides to change to palliative care. The staff struggles with the dilemma whether to inform her about this change of treatment and that they expect that she will die soon, notwithstanding her persistent wish not to be informed, or to go