Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers

Abstract

BACKGROUNDIt is challenging for clinicians to foster coping and allow hope when discussing prognosis and end‐of‐life (EOL) issues with terminally ill cancer patients and their caregivers. To the authors' knowledge, little research evidence is currently available to guide clinical practice.METHODSThe authors conducted focus groups and individual interviews with 19 patients with far advanced cancer and 24 caregivers from 3 palliative care (PC) services in Sydney, and 22 PC health professionals (HPs) from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Additional focus groups or individual interviews were conducted until no additional topics were raised. The participants' narratives were analyzed using qualitative methodology.RESULTSAll participant groups believed there were ways of fostering coping and nurturing hope when discussing prognosis and EOL issues. Themes identified from the transcripts regarding ways of helping patients with a limited life expectancy to cope were: 1) emphasize what can be done (namely: a) control of physical symptoms; b) emotional support, care, and dignity; and c) practical support), 2) explore realistic goals, and 3) discuss day‐to‐day living. Two additional themes were identified regarding ways of fostering hope: the balance between truth telling and nurturing hope, and the spectrum of hope. All these themes were raised by the patients, caregivers, and HPs. However, there were some differences of opinion within the three participant groups.CONCLUSIONSThe results of the current study demonstrated that most participants believed there were ways of fostering coping and maintaining hope and that HPs have a role in facilitating this with terminally ill cancer patients and their caregivers. Cancer 2005. © 2005 American Cancer Society.

“What concerns me is…” Expression of emotion by advanced cancer patients during outpatient visits

“…Other research has shown that most patients want their oncologists to be willing to talk about death and dying [25,59] and cite emotional support as an important physician skill to help them cope when discussing the future [8]. Unfortunately, factors such as disease stage do not predict whether patients want to talk about end-of-life issues [41], so there is no reliable way to predict whether a given patient has concerns about death and dying.…”

Entrega de malas noticias en la práctica clínica

“…En estas circunstancias los profesionales de la salud, pueden desear (consciente o inconscientemente) persuadir al paciente hacia estas acciones, y cada persuasión puede llegar a ser parte de la discusión de la mala noticia. Los profesionales deben ser conscientes de sus intenciones de persuasión y explicitarlas al paciente 31,34,35 . -Minimizar el estrés del paciente: escuchar malas noticas puede ser abrumador emocionalmente para el paciente, y los profesionales pueden exacerbar este estrés si entregan de mala manera dicha noticia 36 .…”

“…Los factores que pueden influenciar la satisfacción son la discusión, proveer responsividad a las emociones del paciente e involucrar al mismo en la toma de decisiones. -Mantener el optimismo del paciente: promover el optimismo del paciente 35,40 , el cual puede ser un poderoso predictor de adaptación y recuperación 41 aunque debe ser balanceado con honestidad y realismo 39,40 . -Minimizar el discomfort del profesional de la salud: el objetivo final del profesional de la salud debe ser minimizar su propio discomfort con la tarea, el cual puede resultar en miedo a la reacción al paciente, a sus propias emociones, a su falta de competencia o miedo a ser cul-pado 42 .…”

Experiences of truth disclosure in terminally ill cancer patients in palliative home care

“…Objective truths are static and in agreement with fact or reality, whereas subjective truths are based on a person's experience and are continuing and dynamic. Only a few studies have declared what they actually mean when they are asking patients about the truth in prognostic discussions (Clayton et al, 2005a(Clayton et al, , 2005b. What does it mean to patients when they are given a terminal prognosis?…”