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

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.

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
J. T. Toguri ◽  
L. Grant-Nunn ◽  
R. Urquhart

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.


2020 ◽  
Author(s):  
James Thomas Toguri ◽  
Lindsay Grant-Nunn ◽  
Robin Urquhart

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.


2020 ◽  
Author(s):  
James Thomas Toguri ◽  
Lindsay Grant-Nunn ◽  
Robin Urquhart

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.


2020 ◽  
Author(s):  
James Thomas Toguri ◽  
Lindsay Grant-Nunn ◽  
Robin Urquhart

Abstract Background: Advance care planning (ACP) is a formal 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’ views of ACP and 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; and 3) identify commonalities and differences between patients’ and families’ experiences and those of the physicians who care for them. Design and setting: Qualitative descriptive study in Nova Scotia, Canada.Methods: Semi-structured interviews with advanced cancer patients and their family members (n=8) and oncologists (n=10) were conducted. 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.


2019 ◽  
Vol 18 (3) ◽  
pp. 277-284
Author(s):  
Megan Johnson Shen ◽  
Cyndi Gonzalez ◽  
Benjamin Leach ◽  
Paul K. Maciejewski ◽  
Elissa Kozlov ◽  
...  

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.


Author(s):  
Masanori Mori

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.


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