Ethical Wills and Suffering in Patients with Cancer: A Pilot Study

Abstract

Introduction: Suffering at the end of life may be caused by many factors, including pain and other symptoms, concern about family and friends, and loss of control of one's life. Several authors have suggested that loss of meaning is pivotal in suffering. An ethical will (EW) is a statement, usually written, capturing one's values, wisdom, hopes, and advice. EWs have been suggested as a vehicle for finding meaning as the end of life approaches. This pilot study of EWs examined methods for exploring the role of EWs in reducing suffering at the end of life.Methods: Oncology clinic patients 65ϩ years of age in active therapy for cancer were randomly assigned to one of two arms: EW or control. Subjects in both arms had writing assignments, three home visits, and exit interviews. Suffering was measured at baseline and at the time of the exit interview, using a series of Likert-like scales.Results: Twenty-four subjects (10 EW and 14 control) completed the study. Among EW subjects, trends toward reduced suffering were noted in "concern for loved ones," "unfinished business," and "fear of the future." Several methodological issues were identified by this pilot study, including selection of population for studying suffering, placebo effect, and randomization.Conclusions: EW may be valuable in alleviating suffering; a larger study will be needed to examine efficacy. The study of interventions designed to reduce suffering at the end of life requires careful attention to the definition and measurement of suffering, study design, and subject selection.

Patient's lung cancer diagnosis as a cue for relatives' smoking cessation: evaluating the constructs of the teachable moment

“…The short survival rates associated with lung cancer mean that the window of opportunity for involving patients in these efforts often will be limited. Our findings relating to affect suggest that techniques such as ‘ethical wills’, where patients write values, wisdom, hopes, and advice to family members, which have been shown to reduce a patient's own suffering, also could arouse emotional responses in relatives that reinforce their motivation to take steps toward smoking cessation . However, it is also likely that relatives will need coaching and support regarding alternatives to smoking for handling grief and negative emotions .…”

Searching for wisdom in oncology care: A scoping review

“…Six articles depicted wisdom as something acquired and/or passed on—even as a legacy—from the illness experience with cancer (Austin, 2001; Costa & Pakenham, 2012; Gessert et al, 2004; Greszta & Siemińska, 2011; McTaggart, 2001; Williams, 1995). Costa and Pakenham's (2012) study focused on “benefit finding” (BF) as a capacity some individuals mobilize in adversity.…”

“…McTaggart's (2001) interpretive descriptive study of mother/daughter relationships in the face of cancer highlights a process of “acquiring wisdom” passed on by mothers with breast cancer to their daughters. Gessert and colleagues' (2004) intervention study of “ethical wills” used Likert-type scales to measure a variety of existential themes emerging through patients' experiences. They describe an ethical will as “a statement, usually written, capturing one's values, wisdom, hopes, and advice.…”

“…Aucoin & Wassersug, 2006;Austin, 2001;Baerg, 2007;Balon, 2004;Costa & Pakenham, 2012;Cueva et al, 2005;Geffen, 2004;Gessert et al, 2004;Greszta & Siemiń ska, 2011;Kenford et al, 2005;Liao & Arnold, 2006;McTaggart, 2001;Newell et al, 1999;Richardson et al, 2012;Roy, 2012;Sealy, 2013;Solomon, 2008;Williams, 1995;Woodhouse & Baldwin, 2008;Yancey, 2004;Zebrack et al, 2012) Butlin et al…”

Ethical capital: ‘What’s a poor man got to leave?’

“…For terminally ill persons, leaving an ethical legacy can be part of the advance directive process (Aging with Dignity 1999). As an end‐of‐life meaning‐making exercise (Gessert et al 2004), and a form of dignity therapy (Chochinov et al 2005), ethical legacy construction constitutes a psychosocial intervention that can diminish suffering for dying patients and moderate grief experiences for survivors (McClement et al 2007). Although Hunter and Rowles (2005) articulate the notion of a legacy of values, to our knowledge, no one has considered legacy work as the avenue for transferring ethical capital as a resource distinct from social, human, and cultural capital.…”