Advance care planning: Pitfalls, progress, promise

Prendergast, Thomas J.

doi:10.1097/00003246-200102001-00007

Cited by 197 publications

(127 citation statements)

References 47 publications

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“…Including these substitute decisionmakers in discussions has been shown to improve the effectiveness of advance care planning. 135,136 In-depth discussion of advance directives and enduring medical powers of attorney are beyond the scope of these guidelines. The status of advance directives and the status and responsibilities of representatives of incompetent patients is complex and varies from jurisdiction to jurisdiction.…”

Section: Advance Care Planning (Box 11)mentioning

confidence: 99%

Life expectancy discussions in a multisite sample of Australian medical oncology outpatients

Zucca

Sanson‐Fisher

Waller

et al. 2015

Medical Journal of Australia

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Objectives: The study examined: 1) the proportion of patients who received their preferred level of information about life expectancy; and 2) sociodemographic, clinical and psychological factors associated with patients' perceptions of whether they received too little, too much, or the right amount of information about life expectancy. Design: Cross‐sectional survey. Setting: Eleven large Australian medical oncology treatment centres. Participants: A total of 1431 medical oncology outpatients participated (81% consent rate). Eligible patients were approached between September 2012 and May 2014. Main outcome measures: Patients indicated whether the information about life expectancy they received aligned with their preferences. Results: Almost one in four patients (24%) received too little information, 4% received too much, and 50% received all the information they wanted; 22% of patients neither wanted nor received information about life expectancy. Patients were more likely to receive too little information if they were not in remission (odds ratio [OR], 1.77), did not know their cancer stage at diagnosis (OR, 3.64), or were anxious (OR, 1.48) or depressed (OR, 1.48). Patients had greater odds of receiving too much information if they were younger (OR, 1.45), had more advanced cancer (OR, 2.01) or did not know their cancer stage at diagnosis (OR, 4.42). Conclusions: That fact that 28% of cancer patients did not receive their desired level of information about life expectancy highlights the difficulties associated with discussing this sensitive topic. To ensure that life expectancy discussions correspond with patient preferences, clinicians should routinely ask patients whether they want to know this information, in what format, and at which level of detail.

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Section: Advance Care Planning (Box 11)mentioning

confidence: 99%

Life expectancy discussions in a multisite sample of Australian medical oncology outpatients

Zucca

Sanson‐Fisher

Waller

et al. 2015

Medical Journal of Australia

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“…Some experts, for example, believe that written ADs, as traditionally constructed and executed, are inadequate for several reasons, including difficulty completing such documents 40,41 ; their inability to address changing circumstances [40][41][42] ; poor rates of completion 40,43,44 ; being unavailable when needed 40 , 45 ; or being overruled by family or health care providers 40 . Evidence also suggests that they may not affect care received 46,47 .…”

Section: Discussionmentioning

confidence: 99%

Engaging Homeless Persons in End of Life Preparations

et al. 2008

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BACKGROUND: There are no prospective studies that have investigated the effects of an intervention to improve end of life (EOL) care in an underserved population. OBJECTIVE:To determine whether homeless persons will complete an advance directive (AD). DESIGN:Randomized trial comparing two modes of providing an opportunity for homeless persons to complete an AD. Half of the subjects were randomized to a self-guided group (SG) who were given an AD and written instructions; the other half were given the same material but, in addition, were offered the opportunity to receive guidance to complete the AD (CG). PARTICIPANTS: Fifty-nine homeless persons recruited from a drop-in center.MEASURES: Rate of AD completion and baseline and 3-month follow-up EOL-related knowledge, attitudes, and behaviors. RESULTS:The overall AD completion rate was 44%, with a statistically significant higher completion rate of 59% in the CG group compared to 30% in the self-guided only group. Frequency of worry about death decreased among those who filled out an AD from 50% to 12.5%, and also among those who did not (25% to 12.5%) (p< .05). Among those who filled out an AD, there were increases in plans to write down EOL wishes (56% to 100%; p< .05) and plans to talk about these wishes with someone (63% to 94%; p< .05).CONCLUSION: This study demonstrates that people living in dire economic and social situations will complete an AD when offered the opportunity. While offering guidance resulted in higher rates of completion; even a simple self-guided AD process can achieve completion of ADs in this population. BACKGROUNDImproving end of life (EOL) care is an important goal of the US health system 1 . One main finding of the NIH State of the Science conference on EOL care was that the majority of EOL research has been conducted on narrowly defined populations 2 . Consensus recommendations included more study of under-represented populations, such as the underserved or underinsured. The limited EOL research examining individuals from lower socioeconomic strata is mainly descriptive but indicates that disparities exist in the delivery and experience of EOL care.A core process in good EOL care is advance care planning (ACP) and writing advance directives (ADs) 1 , but these are known to occur less often within disadvantaged populations. There are, for example, associations between lower levels of education, socioeconomic (SES) and insurance status, minority status and lower completion rates of ADs 3-9.Homeless persons face the most disadvantaged financial and social circumstances. Poverty is the greatest risk factor for homelessness 10 Recent empirical work has demonstrated that homeless persons are concerned about EOL care [28][29][30][31][32] , and have unique challenges, barriers, and wishes when seeking or obtaining EOL care [28][29][30][31] . One normative theme that emerges from this nascent literature is the prescription for making one's EOL wishes known, particularly through written means, such as ADs [28][29][30][31] . However, in additio...

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“…It must be kept in mind that ACP is not a checklist, but is intended to increase the understanding of the individual patient’s values and choices and to provide a better understanding of the disease for both the patient and the caregiver(s) [26,27]. The goal of ACP is not necessarily to reduce or stop treatment, but to ensure a balanced treatment based on an understanding of the needs and wishes of the individual patient.…”

Section: Definitionmentioning

confidence: 99%

Danish respiratory society position paper: palliative care in patients with chronic progressive non-malignant lung diseases

Marsaa

Gundestrup

Lange

et al. 2018

European Clinical Respiratory Journal

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Background: Chronic non-malignant lung diseases such as chronic obstructive pulmonary disease (COPD) and interstitial lung diseases (ILD) result in reduced quality of life (QoL), a high symptom burden and reduced survival. Patients with chronic non-malignant lung disease often have limited access to palliative care. The symptom burden and the QoL of these patients resembles patients with cancer and the general palliative approach is similar. However, the disease trajectory is often slow and unpredictable, and the palliative effort must be built on accessibility, continuity and professional competences. The Danish Health Authority as well as the WHO recommends that there is access to palliative care for all patients with life-threatening diseases regardless of diagnosis. In 2011, the Danish Health Authority requested that the national medical societies would to formulate guidelines for palliation. Methods: In 2015, a group of members of the Danish Respiratory Society (DRS) was appointed for this purpose. It was composed of experienced ILD and COPD researchers as well as clinicians from different parts of Denmark. A literature review was made, a draft was prepared, and all recommendations were agreed upon unanimously. Results: The Danish version of the position paper was finally submitted for review and accepted by all members of DRS. Conclusion: In this position paper we provide recommendations on the terminology of chronic and terminal lung failure, rehabilitation and palliative care, advanced care planning, informal caregivers and bereavement, symptom management, the imminently dying patient, and organization of palliative care for patients with chronic non-malignant lung diseases.

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Advance care planning: Pitfalls, progress, promise

Cited by 197 publications

References 47 publications

Life expectancy discussions in a multisite sample of Australian medical oncology outpatients

Life expectancy discussions in a multisite sample of Australian medical oncology outpatients

Engaging Homeless Persons in End of Life Preparations

Danish respiratory society position paper: palliative care in patients with chronic progressive non-malignant lung diseases

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