OP65 Framing advance care planning in parkinson’s disease: patient and care partner perspectives

Lum, Hillary D.; Jordan, Sarah; Brungardt, Adreanne; Ayele, Roman; Katz, Maya; Hall, Allison; Jones, Jacqueline; Kluger, Benzi M.

doi:10.1136/spcare-2019-acpicongressabs.65

Cited by 16 publications

(22 citation statements)

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“…The positive attitudes towards ACP demonstrated in this study has been found by others for older patients and those with advanced illness, including but not limited to cancer [28][29][30][31]. Nonetheless, some research has reported that patients and families do not want to discuss ACP due to fear of death or not wanting to break their optimism [32], or because patients did not fully understand their illness and/or prognosis [28].…”

Section: Comparison With Existing Literaturesupporting

confidence: 54%

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

2020

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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.

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Section: Comparison With Existing Literaturesupporting

confidence: 54%

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

2020

View full text Add to dashboard Cite

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“…The positive attitudes towards ACP demonstrated in this study has been found by others for older patients and those with advanced illness, including but not limited to cancer (30)(31)(32)(33). Nonetheless, some research has reported that patients and families do not want to discuss ACP due to fear of death or not wanting to break their optimism (34), or because patients did not fully understand their illness and/or prognosis (30).…”

Section: Comparison With Existing Literaturesupporting

confidence: 54%

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

Toguri

Grant-Nunn

Urquhart³

2020

Preprint

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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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“…Our findings may also reflect the difficulty physicians experience when trying to communicate with patients who have cognitive or communicative impairments due to chronic progressive neurologic diseases such as dementia, 37 Parkinson's disease, 38 and other neuromuscular diseases. 39 Patients may wish to maintain a sense of autonomy by making decisions regarding their future care while their cognition remains intact.…”

Section: Discussionmentioning

confidence: 90%

The Attitudes of Physicians and the General Public toward Prognostic Disclosure of Different Serious Illnesses: a Korean Nationwide Study

Kim

et al. 2020

J Korean Med Sci

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OP65 Framing advance care planning in parkinson’s disease: patient and care partner perspectives

Abstract: ConclusionThe majority of physicians indicate that they can adequately estimate a patient's limited life expectancy and that they tend to discuss patients' wishes if they have a poor prognosis. Information transfer concerning patients' wishes for treatment and care can be improved.

Cited by 16 publications

References 0 publications

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

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

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

The Attitudes of Physicians and the General Public toward Prognostic Disclosure of Different Serious Illnesses: a Korean Nationwide Study

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