“Our best hope is a cure.” Hope in the context of advance care planning

Abstract

<jats:title>Abstract</jats:title><jats:sec id="S147895151100068X_sec1"><jats:title>Objective:</jats:title><jats:p>Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices<jats:sup>®</jats:sup>program in Wisconsin.</jats:p></jats:sec><jats:sec id="S147895151100068X_sec2"><jats:title>Method:</jats:title><jats:p>Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison.</jats:p></jats:sec><jats:sec id="S147895151100068X_sec3"><jats:title>Results:</jats:title><jats:p>Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP.</jats:p></jats:sec><jats:sec id="S147895151100068X_sec4"><jats:title>Significance of results:</jats:title><jats:p>Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as “unrealistic” as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.</jats:p></jats:sec>

Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers

“…Six studies reported that patients' experience of health care and perception of the healthcare system, as well as their previous experiences with dying people could positively or negatively influence their support for and willingness to engage in ACP .…”

“…Much of the literature on ACP has focused on patient, caregiver, and health professional views on ACP and on its implementation (see Table 8 for relevant references). While results vary across studies and between stakeholders, in general terms, ACP is viewed as desirable [2,5,24,25,29,31,34,37,38,42,[45][46][47], although some have concerns over the capacity of ACP to meet its objectives [23,42,46]. However, even among those who supported ACP, there was concern regarding at least some components of ACP.…”

Iranian Cancer Patient Perceptions of Prognosis and the Relationship to Hope

“…The cancer patients in another study reported that the most frequent unmet needs were in the health system and information domain (Abdollahzade et al, 2014). While it might be tempting to conclude that positive perceptions of prognosis in the context of a cancer diagnosis are incompatible, advanced cancer patients and their relatives in both Western countries (Duggleby & Wright, 2004;Eliott & Olver, 2009;Robinson, 2012;Sanatani et al, 2008) and non-Western countries (Banning & Gumley, 2012;de Graaff et al, 2010) have reported believing their cancer is curable. It remains unknown whether this is the result of the non-disclosure of the cancer prognosis, as documented in Western (Hagerty et al, 2005) and nonWestern countries (Brokalaki et al, 2005;Cavanna et al, 2007;Phungrassami et al, 2003), or, rather, a patients' belief in the power of thinking positively, religion or a miracle cure (Guerrero et al, 2011;Marian, 1990;Widera et al, 2011).…”

The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease

“…Openly discussing what the future may hold may have important implications to decision-making: it has been suggested that families may opt for high-risk surgical or interventional procedures simply because they are unclear of the outcomes of a more conservative approach 18. There also appears to be little downside of early involvement: well-informed parents do not necessarily conceptualise cure-directed and symptom-directed care as mutually exclusive or alternative approaches,27 and the act of raising these issues is not felt to be in conflict with the principle of ‘honouring hope’ for their loved one 28…”