Do medical oncology patients and their support persons agree about end‐of‐life issues?

Waller, Amy; Hall, Alix; Sanson‐Fisher, Rob; Zdenkowski, Nicholas; Douglas, Charles; Walsh, Justin

doi:10.1111/imj.13626

Cited by 5 publications

(5 citation statements)

References 35 publications

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“…Not all patients or families want to engage with or are willing to assert rights. 26 Substitute decision-makers and patients do not always agree. 26 Individual barriers included preferred decision-making styles; the ability to deal with the emotional aspects of decision-making; willingness to engage with advance care planning processes and documentation; family conflict; and a lack of legal literacy.…”

Section: Discussionmentioning

confidence: 99%

“…26 Substitute decision-makers and patients do not always agree. 26 Individual barriers included preferred decision-making styles; the ability to deal with the emotional aspects of decision-making; willingness to engage with advance care planning processes and documentation; family conflict; and a lack of legal literacy. Some of these problems can be addressed by community education, highlighting the need for reliable and accessible information about end-of-life law.…”

Section: Main Findingsmentioning

confidence: 99%

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Operationalizing legal rights in end-of- life decision-making: A qualitative study

et al. 2021

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Background: For a patient’s legal right to make end-of-life treatment decisions to be respected, health care practitioners, patients and their substitute decision-makers must know what rights exist and how to assert them (or support others to assert them). Yet very little is known about what enhances or obstructs the operationalization of legal rights from the perspective of patients, family members and substitute decision-makers. Aim: To explore barriers and facilitators to the operationalization of rights in end-of-life decision-making from the perspectives of terminally-ill patients and family members and substitute decision-makers of terminally ill patients in Australia. Design: Semi-structured interviews (face to face and telephone) with patients, family or substitute decision-makers experienced in end-of-life decision-making completed between November 2016 and October 2017. A thematic content analysis of interview transcripts. Setting/participants: Purposive sampling across three Australian states provided 16 terminally-ill patients and 33 family and/or substitute decision-makers. Results: Barriers and facilitators emerged across three overlapping domains: systemic factors; individual factors, influenced by personal characteristics and decision-making approach; and communication and information. Health care practitioners play a key role in either supporting or excluding patients, family and substitute decision-makers in decision-making. Conclusion: In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advanced care planning is needed to facilitate people operationalizing their legal rights, powers and duties. Palliative care and other support services should be more widely available to people both within and outside health systems.

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Section: Discussionmentioning

confidence: 99%

Section: Main Findingsmentioning

confidence: 99%

Operationalizing legal rights in end-of- life decision-making: A qualitative study

et al. 2021

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“…A description of the study sample and procedures was published previously. 22,23 Briefly, clinic staff identified eligible participants, which included adult medical oncology outpatients attending their second or subsequent appointment at a tertiary treatment center, who were able to read and understand English, and who were judged as being physically and cognitively able to participate. Patients who indicated to clinic staff that they would be willing to talk to a trained research assistant were approached for consent to complete a pen-and-paper survey.…”

Section: Sample and Proceduresmentioning

confidence: 99%

“…The items described here are drawn from a larger set of survey items, some of which are reported elsewhere because they address different themes. 22,23 The survey instrument included the following definitions of ACP and EOL care: "ACP provides an opportunity for people to think, discuss, and plan for the medical treatment they would prefer if they became too ill in the future to express their wishes. Everyone should consider ACP, regardless of their age or health.…”

Section: Outcome Measuresmentioning

confidence: 99%

Dances With Denial: Have Medical Oncology Outpatients Conveyed Their End-of-Life Wishes and Do They Want To?

Waller¹,

Douglas²,

Sanson‐Fisher³

et al. 2018

J Natl Compr Canc Netw

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This study surveyed a sample of medical oncology outpatients to determine (1) the proportion who have already discussed and documented their end-of-life (EOL) wishes; (2) when and with whom they would prefer to convey their EOL wishes; (3) the EOL issues they would want to discuss; and (4) the association between perceived cancer status and advance care planning (ACP) participation. Adult medical oncology outpatients were approached in the waiting room of an Australian tertiary treatment center. Consenting participants completed a pen-and-paper survey assessing participation in ACP, preferences for conveying EOL wishes, timing of EOL discussions, and EOL issues they want to be asked about. A total of 203 patients returned the survey (47% of eligible). EOL discussions occurred more frequently with support persons (47%) than with doctors (7%). Only 14% had recorded their wishes, and 45% had appointed an enduring guardian. Those who perceived their cancer as incurable were more likely to have participated in ACP. If facing EOL, patients indicated that they would want family involved in discussions (85%), to be able to write down EOL wishes (82%), and to appoint enduring guardians (91%). Many (45%) preferred the first discussion to happen when their disease became incurable. Slightly less than one-third thought discussions regarding EOL should be patient-initiated. Most agreed doctors should ask about preferred decision-making involvement (92%), how important it is that pain is managed well (95%), and how important it is to remain conscious (82%). Fewer (55%) wanted to be asked about the importance of care extending life. Many patients would like to have discussions regarding EOL care with their doctor and involve their support persons in this process. Only a small percentage of respondents had discussed EOL care with their doctors, recorded their wishes, or appointed an enduring guardian. The first step requires clinicians to ask whether an individual patient wishes to discuss EOL issues, in what format, and at what level of detail.

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“…However, little is known about how these conversations are experienced by patients and physicians in hospitals and nursing homes [ 13 ]. Applying strategies to make patient preferences known to healthcare providers and support persons while the patient still has the capacity for this is a critical step in improving the quality of EOL care [ 14 ]. A specific template for conducting such conversations may be an important aid for physicians.…”

Section: Introductionmentioning

confidence: 99%

Decision-making conversations for life-sustaining treatment with seriously ill patients using a Danish version of the US POLST: a qualitative study of patient and physician experiences

Tuesen

Ågård

Bülow

et al. 2022

Scandinavian Journal of Primary Health Care

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Objective To explore patients’ and physicians’ perspectives on a decision-making conversation for life-sustaining treatment, based on the Danish model of the American Physician Orders for Life Sustaining Treatment (POLST) form. Design Semi-structured interviews following a conversation about preferences for life-sustaining treatment. Setting Danish hospitals, nursing homes, and general practitioners’ clinics. Subjects Patients and physicians. Main outcome measures Qualitative analyses of interview data. Findings After participating in a conversation about life-sustaining treatment using the Danish POLST form, a total of six patients and five physicians representing different settings and age groups participated in an interview about their experience of the process. Within the main research questions, six subthemes were identified: Timing, relatives are key persons, clarifying treatment preferences, documentation across settings, strengthening patient autonomy, and structure influences conversations. Most patients and physicians found having a conversation about levels of life-sustaining treatment valuable but also complicated due to the different levels of knowledge and attending to individual patient needs and medical necessities. Relatives were considered as key persons to ensure the understanding of the treatment trajectory and the ability to advocate for the patient in case of a medical crisis. The majority of participants found that the conversation strengthened patient autonomy. Conclusion Patients and physicians found having a conversation about levels of life-sustaining treatment valuable, especially for strengthening patient autonomy. Relatives were considered key persons. The timing of the conversation and securing sufficient knowledge for shared decision-making were the main perceived challenges. KEY POINTS Conversations about preferences for life-sustaining treatment are important, but not performed systematically. When planning a conversation about preferences for life-sustaining treatment, the timing of the conversation and the inclusion of relatives are key elements. Decision-making conversations can help patients feel in charge and less alone, and make it easier for health professionals to provide goal-concordant care. Using a model like the Danish POLST form may help to initiate, conduct and structure conversations about preferences for life-sustaining treatment.

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Do medical oncology patients and their support persons agree about end‐of‐life issues?

Abstract: Background: The perceptions of those called on to make decisions on behalf of patients

Cited by 5 publications

References 35 publications

Operationalizing legal rights in end-of- life decision-making: A qualitative study

Operationalizing legal rights in end-of- life decision-making: A qualitative study

Dances With Denial: Have Medical Oncology Outpatients Conveyed Their End-of-Life Wishes and Do They Want To?

Decision-making conversations for life-sustaining treatment with seriously ill patients using a Danish version of the US POLST: a qualitative study of patient and physician experiences

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