What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals

2019 ◽  
Vol 33 (10) ◽  
pp. 1299-1309 ◽  
Author(s):  
Cheng-Pei Lin ◽  
Catherine J Evans ◽  
Jonathan Koffman ◽  
Shuh-Jen Sheu ◽  
Su-Hsuan Hsu ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Filial Piety ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care

Background: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention. Aim: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan. Method: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views. Results: Forty-five participants were interviewed ( n = 15 from each group). Three main decision-making trajectories were identified: (1) ‘choose palliative care’ was associated with patients’ desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) ‘decline palliative care’ was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) ‘no opportunity to choose palliative care’ was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety. Conclusion: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.

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.

scholarly journals Advance care planning in dementia: recommendations for healthcare professionals

2019 ◽  
Vol 12 ◽  
pp. 117822421982657 ◽  
Author(s):  
Karen Harrison Dening ◽  
Elizabeth L Sampson ◽  
Kay De Vries
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advance Care Planning ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Family Carers ◽  
Care Approach ◽  
Future Care ◽  
Advance Care ◽  
Person With Dementia

The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care.

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 Cancer Patients, Families, and Providers 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 ◽  
Formal Training ◽  
Healthcare Team ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

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.

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