Association of illness understanding with advance care planning and end-of-life care preferences for advanced cancer patients and their family members

2019 ◽  
Vol 28 (6) ◽  
pp. 2959-2967 ◽  
Author(s):  
Shin Hye Yoo ◽  
Jihye Lee ◽  
Jung Hun Kang ◽  
Chi Hoon Maeng ◽  
Yu Jung Kim ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Advanced Cancer Patients ◽  
Advance Care

scholarly journals Advance Care Planning Among Patients With Advanced Cancer

2019 ◽  
Vol 15 (1) ◽  
pp. e65-e73 ◽  
Author(s):  
Jane R. Schubart ◽  
Benjamin H. Levi ◽  
Megan M. Bain ◽  
Elana Farace ◽  
Michael J. Green
Keyword(s):  
End Of Life ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Decision Aid ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Physician Awareness ◽  
Advance Care

Purpose: Advance directives (AD) have been heralded as vehicles to promote patient autonomy and have been decried as ineffective. Efforts to improve advance care planning (ACP) and AD documents are wide ranging but have not been prospectively studied. Materials and Methods: In an institutional review board–approved, single-blind, randomized, controlled trial, we compared an interactive, educational ACP decision aid to standard ACP among patients with advanced cancer. We hypothesized that use of the decision aid would increase physician awareness of patients’ health care wishes and increase physician adherence to patients’ end-of-life wishes compared with standard ACP. Results: A total of 200 patients were randomly assigned to two study arms. We analyzed data from medical records and interviews with physicians and family members for 121 patients who died by August 2016. No differences in physician awareness or adherence were found between the ACP decision aid and standard ACP groups. End-of-life treatment wishes and discussion of wishes were documented for 70% and 64% of the patients, respectively, but only 35% had an actual AD in the medical record. According to family members, end-of-life care was consistent with the patients’ stated wishes 94% of the time. Similarly, according to physicians, it was consistent for 98%. However, according to AD documents, delivered care was consistent with desired care in only 65%. Considerably fewer patients than predicted died, and data from physicians were difficult to obtain. Conclusion: ACP type did not influence documentation of patient wishes or end-of-life care received. Future prospective studies must account for challenges in prognostication and point-of-care data collection at the end of life.

Outcomes Associated with End-of-Life Discussions (DRAFT)

2018 ◽  
Author(s):  
Masanori Mori
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Aggressive Care

Physicians and advanced cancer patients are often reluctant to talk about death. They frequently avoid end-of-life discussions (EOLds), although such conversations are essential to initiate advance care planning. In this prospective, a longitudinal multisite cohort study of advanced cancer patients and their informal caregivers, the authors suggested cascading benefits of EOLds between patients and their physicians. In total, 123 of 332 (37.0%) patients reported having EOLds with their physicians at baseline. EOLds were not associated with higher rates of emotional distress or psychiatric disorders. Instead, after propensity-score weighted adjustment, EOLds were associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care was associated with worse patient quality of life and worse bereavement adjustment. These findings may help destigmatize EOLds and assist physicians and patients in initiating such conversations and engaging in advance care planning.

Association Between Advance Directives and Quality of End-of-Life Care (DRAFT)

2018 ◽  
Author(s):  
Donna S. Zhukovsky
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Care Providers ◽  
Advance Care

Advance care planning is a complex process whereby an individual reflects on future care options at the end of life after reflecting on his or her values and goals for care. These values, goals, and preferences are then communicated to key stakeholders in the process (i.e., proxy and surrogate decision-makers, family members, and health care providers). It is unclear how well the completion of advance directives and a written outcome of advance care planning affect desired patient outcomes. In this chapter, a critical review is provided of a mortality follow-back survey that evaluates the association of advance directives with quality of end-of-life care from the perspective of bereaved family members. Study strengths and limitations are described, as are directions for future research.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
J. T. Toguri ◽  
L. Grant-Nunn ◽  
R. Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Methods This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n = 4 patients, 4 family members) and oncologists (n = 10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusions Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

scholarly journals An examination of Latino-advanced cancer patients' and their informal caregivers' preferences for communication about advance care planning: A qualitative study

2019 ◽  
Vol 18 (3) ◽  
pp. 277-284
Author(s):  
Megan Johnson Shen ◽  
Cyndi Gonzalez ◽  
Benjamin Leach ◽  
Paul K. Maciejewski ◽  
Elissa Kozlov ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Religious Beliefs ◽  
Family Members ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Eol Care ◽  
Language For Learning

AbstractObjectivesLatino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.MethodsPatients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.ResultsFindings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.Significance of resultsKey cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Author(s):  
James Thomas Toguri ◽  
Lindsay Grant-Nunn ◽  
Robin Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Methods: This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n=4 patients, 4 family members) and oncologists (n=10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusions: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

scholarly journals How Acculturation Influences Attitudes About Advance Care Planning and End-of-life Care Among Chinese Living in Taiwan, Hong Kong, Singapore, and Australia

2021 ◽  
Author(s):  
Fu-Ming Chiang ◽  
Jyhgang Hsieh ◽  
Ying-Wei Wang
Keyword(s):  
Hong Kong ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Family Members ◽  
Individual Autonomy ◽  
Clear Understanding ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract Background ： Understanding attitudes towards life and death issues in different cultures is critical in end-of-life care and the uptake of advance care planning (ACP) in different countries. However, existing research suffers from a lack of cross-cultural comparisons among countries. By conducting this comparative study, we hope to achieve a clear understanding of the linkages and differences among healthcare cultures in different Chinese societies, which may serve as a reference for promoting ACP by considering cultural differences. Methods ： Our researchers recruited Chinese adults who could communicate in Mandarin and lived in metropolitan areas in Taiwan, Hong Kong, Singapore, and Australia. Focus group interviews were conducted, and the interview contents were recorded and subjected to thematic analysis. Results ： Between June and July 2017, 14 focus groups with 111 participants were conducted in four regions. With traditional Chinese attitudes towards death as a taboo, many participants felt it would be challenging to discuss ACP with elderly family members. Most participants also desire to avoid suffering for the self and family members. Although the four regions' participants shared a similar Chinese cultural context, significant regional differences were found in the occasions at which participants would engage in end-of-life discussions and select settings for end-of-life care. By contrast, participants from Singapore and Australia exhibited more open attitudes. Most participants from Taiwan and Hong Kong showed a preference for end-of-life care at a hospital. Conclusions ： The developmental experiences of ACP in Western countries, which place a strong emphasis on individual autonomy, cannot be directly applied to family-centric Asian ones. Healthcare professionals in Asian societies should make continuous efforts to communicate patient status to patients and their family members to ensure family involvement in decision-making processes.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Author(s):  
James Thomas Toguri ◽  
Lindsay Grant-Nunn ◽  
Robin Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. Aims: To 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Design and setting: Qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Methods: Semi-structured interviews with advanced cancer out-patients and their family members (n=4 patients, 4 family members) and oncologists (n=10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusion: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Author(s):  
James Thomas Toguri ◽  
Lindsay Grant-Nunn ◽  
Robin Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. Aims: To 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Design and setting: Qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Methods: Semi-structured interviews with advanced cancer out-patients and their family members (n=4 patients, 4 family members) and oncologists (n=10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusion: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

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