In-advance end-of-life discussions and the quality of inpatient end-of-life care: a pilot study in bereaved primary caregivers of advanced cancer patients

Mori, Masanori; Ellison, Donna; Ashikaga, Takamaru; McVeigh, Ursula; Ramsay, Allan; Ades, Steven

doi:10.1007/s00520-012-1581-x

Cited by 32 publications

(26 citation statements)

References 18 publications

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“…5 Conversely, families have reported a higher quality of care when advance care planning occurs, especially earlier in the disease process. 6 Unfortunately, both families and clinicians believe that ACD often happen too late in the course of a patient's illness. 7,8 Recognizing the need to improve EOL communication, several palliative care experts have developed consensus recommendations to assist clinicians.…”

Section: Introductionmentioning

confidence: 99%

Advance Care Discussions: Pediatric Clinician Preparedness and Practices

Sanderson

Hall

Wolfe

2016

Journal of Pain and Symptom Management

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Section: Introductionmentioning

confidence: 99%

Advance Care Discussions: Pediatric Clinician Preparedness and Practices

Sanderson

Hall

Wolfe

2016

Journal of Pain and Symptom Management

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“…Patients in this situation who do not have advance directives often receive default invasive treatments, such as mechanical ventilation, which may not align with their goals of care [ 3 ]. Advance care planning (ACP) includes establishing advance directives and often involves discussions between the patient, family members, and outpatient clinicians [ 4 ]. Although most patients are open to discussing end-of-life issues, few have had such conversations with a doctor [ 5 , 6 ].…”

Section: Introductionmentioning

confidence: 99%

InformedTogether: Usability Evaluation of a Web-Based Decision Aid to Facilitate Shared Advance Care Planning for Severe Chronic Obstructive Pulmonary Disease

Uhler¹,

Figueroa²,

Dickson³

et al. 2015

JMIR Human Factors

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BackgroundAdvance care planning may help patients receive treatments that better align with their goals for care. We developed a Web-based decision aid called InformedTogether to facilitate shared advance care planning between chronic obstructive pulmonary disease (COPD) patients and their doctors.ObjectiveOur objective was to assess the usability of the InformedTogether decision aid, including whether users could interact with the decision aid to engage in tasks required for shared decision making, whether users found the decision aid acceptable, and implications for redesign.MethodsWe conducted an observational study with 15 patients and 8 doctors at two ethnically and socioeconomically diverse outpatient clinics. Data included quantitative and qualitative observations of patients and doctors using the decision aid on tablet or laptop computers and data from semistructured interviews. Patients were shown the decision aid by a researcher acting as the doctor. Pulmonary doctors were observed using the decision aid independently and asked to think aloud (ie, verbalize their thoughts). A thematic analysis was implemented to explore key issues related to decision aid usability.ResultsAlthough patients and doctors found InformedTogether acceptable and would recommend that doctors use the decision aid with COPD patients, many patients had difficulty understanding the icon arrays that were used to communicate estimated prognoses and could not articulate the definitions of the two treatment choices—Full Code and Do Not Resuscitate (DNR). Minor usability problems regarding content, links, layout, and consistency were also identified and corresponding recommendations were outlined. In particular, participants suggested including more information about potential changes in quality of life resulting from the alternative advance directives. Some doctor participants thought the decision aid was too long and some thought it may cause nervousness among patients due to the topic area.ConclusionsA decision aid for shared advance care planning for severe COPD was found acceptable to most COPD patients and their doctors. However, many patient participants did not demonstrate understanding of the treatment options or prognostic estimates. Many participants endorsed the use of the decision aid between doctors and their patients with COPD, although they desired more information about quality of life. The design must optimize comprehensibility, including revising the presentation of statistical information in the icon array, and feasibility of integration into clinical workflow, including shortening the decision aid.

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“…Despite the limited role of chemotherapy in the advanced stage, high prevalence of misunderstanding the goal of treatment and disease prognosis was reported in advance cancer patients . Advanced cancer patients with inappropriate understanding of their illness are likely to choose aggressive care at end of life (EOL) . A previous study showed that approximately 32–69% of patients have inappropriate understanding of the effectiveness of palliative chemotherapy .…”

Section: Introductionmentioning

confidence: 99%

Family caregivers' awareness of illness and attitude toward disclosure during chemotherapy for advanced cancer

Kim

Kwon

et al. 2014

Psycho-Oncology

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In-advance end-of-life discussions and the quality of inpatient end-of-life care: a pilot study in bereaved primary caregivers of advanced cancer patients

Abstract: Advanced cancer patients may receive higher quality of inpatient EOL care if they had in-advance EOL discussions.

Cited by 32 publications

References 18 publications

Advance Care Discussions: Pediatric Clinician Preparedness and Practices

Advance Care Discussions: Pediatric Clinician Preparedness and Practices

InformedTogether: Usability Evaluation of a Web-Based Decision Aid to Facilitate Shared Advance Care Planning for Severe Chronic Obstructive Pulmonary Disease

Family caregivers' awareness of illness and attitude toward disclosure during chemotherapy for advanced cancer

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