Relationships Between Advanced Cancer Patients' Worry About Dying and Illness Understanding, Treatment Preferences, and Advance Care Planning

Rodenbach, Rachel; Althouse, Andrew D.; Schenker, Yael; Smith, Thomas J.; Chu, Edward; White, Douglas B.; Bakitas, Marie; Arnold, Robert M.

doi:10.1016/j.jpainsymman.2020.09.004

Cited by 13 publications

(10 citation statements)

References 48 publications

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“…38 Patients in the maintaining-and gaining-accurate prognosticawareness groups experienced similar levels or changes in anxiety symptoms despite accurately understanding their prognosis at different time points. We speculate that when advanced cancer patients realized that their life expectancy is limited and death was approaching, their anxious feelings may continue to rise and accumulate 35 from worry about dying 39 in an unacceptable manner, for example, with intractable pain, loss of control, concern for their family members' preparedness for their death, or uncompleted life tasks. 40 Due to the scarcity of relevant studies, further research is warranted to clarify why early versus late accurate prognostic awareness does not seem to influence anxiety symptoms, preferably by qualitative studies.…”

Section: Discussionmentioning

confidence: 99%

Associations of prognostic‐awareness‐transition patterns with emotional distress and quality of life during terminally ill cancer patients' last 6 months of life

et al. 2023

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Objective: Unprecedently investigate associations of prognostic-awarenesstransition patterns with (changes in) depressive symptoms, anxiety symptoms, and quality of life (QOL) during cancer patients' last 6 months. Methods:In this secondary analysis study, 334 cancer patients in their last 6 months transitioned between four prognostic-awareness states (unknown and not wanting to know, unknown but wanting to know, inaccurate awareness, and accurate awareness), thus constituting three transition patterns: maintaining-accurate-, gaining-accurate-, and maintaining-inaccurate/unknown prognostic awareness. A multivariate hierarchical linear model evaluated associations of the transition patterns with depressive symptoms, anxiety symptoms, and QOL determined at final assessment and by mean difference between the first and last assessment. Results: At the last assessment before death, the gaining-accurate-prognosticawareness group reported higher levels of depressive symptoms (estimate [95% confidence interval] = 1.59 [0.35-2.84]) and the maintaining-and gaining-accurateprognostic-awareness groups suffered more anxiety symptoms (1.50 [0.44-2.56]; 1.42 [0.13-2.71], respectively) and poorer QOL (−7.07 [−12.61 to 1.54]; −11.06 [−17.76 to −4.35], respectively) than the maintaining-inaccurate/unknown-prognostic-awareness group. Between the first and last assessment, the maintainingand gaining-accurate-prognostic-awareness groups' depressive symptoms (1.59 [0.33-2.85]; 3.30 [1.78-4.82], respectively) and QOL (−5.04 [−9.89 to -0.19]; −8.86 [−14.74 to −2.98], respectively) worsened more than the maintaining-inaccurate/ unknown-prognostic-awareness group, and the gaining-accurate-prognosticawareness group's depressive symptoms increased more than the maintainingaccurate-prognostic-awareness group (1.71 [0.42-3.00]). Conclusions: Unexpectedly, patients who maintained/gained accurate prognostic awareness suffered more depression, anxiety, and poorer QOL at end of life. Promoting accurate prognostic awareness earlier in the terminal-cancer trajectory should be supplemented with adequate psychological care to alleviate patients' emotional distress and enhance QOL. Trial registration: ClinicalTrials.gov:NCT01912846.

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Section: Discussionmentioning

confidence: 99%

Associations of prognostic‐awareness‐transition patterns with emotional distress and quality of life during terminally ill cancer patients' last 6 months of life

et al. 2023

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“…In summary, we explored accuracy of curability expectations in patients with GI cancers regardless of stage and identified lower accuracy rates among those with metastatic disease, unresectable disease, and early‐stage patients who did not receive adjuvant chemotherapy. Additional studies will evaluate more disease types and the associations of distress (physical, emotional, spiritual), including worry about death and dying, 39 on patient expectations. Accurate illness and treatment understanding by patients can support them and their care team to align around the goals and plans for oncologic care.…”

Section: Discussionmentioning

confidence: 99%

Accuracy of curability expectations in patients with gastrointestinal cancers

et al. 2022

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Background Assessment of illness and treatment understanding among cancer patients has largely focused on those with advanced disease. Less is known about patient expectations at earlier stages of cancer and potential modifiers of accurate understanding. Methods We assessed accuracy of cure expectations in patients across all stages with gastrointestinal (GI) cancers. Accuracy was determined by independent reviews of patient health records by oncologists on the investigative team. Impact on cure accuracy of selected clinical variables and health‐information preferences was analyzed. Results Hundred and thirty five patients were included for analysis, with 100% interrater agreement for accuracy between oncologist reviewers. Sixety five patients (48%) had accurate cure expectations from their cancer treatment. Accuracy was lower in Stage IV versus Stage I–III disease (35% vs. 63%, p < 0.01), lower in unresectable versus resectable disease (35% vs. 67%, p < 0.01), and higher in patients with early‐stage disease who received adjuvant chemotherapy versus those who did not (78% vs. 53%, p = 0.04). Accuracy did not differ by health‐information preferences and remained stable over time. Of 63 patients who died, baseline accuracy differed by location of death ( p = 0.03), with greater accuracy in those who died with home hospice (56%). Accuracy was lower in those who were hospitalized in the last 30 days of life versus those who were not (25% vs. 59%, p = 0.01). Conclusions Inaccurate cure expectations are prevalent across all stages of GI cancers, but particularly among those with metastatic or unresectable disease. High‐quality, iterative communication strategies may facilitate patient illness and treatment understanding throughout the disease course.

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“… 65 Moreover, barriers for ACP can be affected by prognostic uncertainty, illness understanding, worry about dying, systemic racism, culture, religion, spirituality, and family values. 65 71 72 73 Effective implementation and utilization of ACP concerning these factors among patients with HNC require further investigation.…”

Section: Discussionmentioning

confidence: 99%

Referral Patterns of Outpatient Palliative Care among the Head and Neck Cancer Population

Saravia

Kong

Roy

et al. 2022

Int Arch Otorhinolaryngol

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Introduction Patients with head and neck cancer (HNC) experience unique physical and psychosocial challenges that impact their health and quality of life. Early implementation of palliative care has been shown to improve various health care outcomes. Objective The aim of the present study was to evaluate the patterns of referral of patients with HNC to outpatient palliative care as they relate to utilization of resources and end-of-life discussions. Methods We performed a retrospective review of 245 patients with HNC referred to outpatient palliative care services at two Louisiana tertiary care centers from June 1, 2014, to October 1, 2019. The control group consisted of those that were referred but did not follow-up. Reasons for referral were obtained, and outcome measures such as emergency department (ED) visits, hospital readmissions, and advance care planning (ACP) documentation were assessed according to predictive variables. Results There were 177 patients in the treatment group and 68 in the control group. Patients were more likely to follow up to outpatient palliative care services if referred for pain management. Hospital system, prior inpatient palliative care, and number of outpatient visits were associated with an increased likelihood for ED visits and hospital readmissions. Those in the palliative care treatment group were also more likely to have ACP discussions. Conclusion Early implementation of outpatient palliative care among patients with HNC can initiate ACP discussions. However, there are discrepancies in referral reasons to palliative care and continued existing barriers to its effective utilization.

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Relationships Between Advanced Cancer Patients' Worry About Dying and Illness Understanding, Treatment Preferences, and Advance Care Planning

Cited by 13 publications

References 48 publications

Associations of prognostic‐awareness‐transition patterns with emotional distress and quality of life during terminally ill cancer patients' last 6 months of life

Associations of prognostic‐awareness‐transition patterns with emotional distress and quality of life during terminally ill cancer patients' last 6 months of life

Accuracy of curability expectations in patients with gastrointestinal cancers

Referral Patterns of Outpatient Palliative Care among the Head and Neck Cancer Population

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