Patients' and oncologists' views on family involvement in goals of care conversations

Smith, Cardinale B.; Feder, Shelli; Bickell, Nina A.

doi:10.1002/pon.4630

Cited by 20 publications

(26 citation statements)

References 25 publications

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“…Over time, our findings indicated a change in the relationship between patients, and their caregivers with patients preferring to confide issues pertaining to the cancer with likeminded, rather than caregivers. The patients described a feeling of wanting to protect those close to them from further uncertainty and worry, as also found in a previous study [23]. A recent focus group study of patients and caregivers likewise found that changes in the roles between patients and caregivers may lead to relationship challenges during the treatment trajectory [24].…”

Section: Discussionsupporting

confidence: 71%

It’s all about the CA-19-9. A longitudinal qualitative study of patients’ experiences and perspectives on follow-up after curative surgery for cancer in the pancreas, duodenum or bile-duct

et al. 2019

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Background: Patients undergoing curative surgery for cancers of the pancreas, duodenum or bile ducts currently attend follow-up at specialized centers. Traditionally, follow-up after cancer has focused on cancer relapse. The Danish Health and Medicines Authority has recently pushed for a wider focus incorporating patients' individual needs and concerns during cancer rehabilitation. We aimed to explore patients' experiences of and perspectives on the rehabilitative scope of the current follow-up within the first year after curative treatment. Material and methods: A qualitative longitudinal design was undertaken with individual semi-structured interviews. We included twelve patients attending current follow-up after treatment for cancer in the pancreas, duodenum or bile-duct. We interviewed the patients three times over a period of 9 months. Data were analyzed longitudinally using inductive content analysis. Results: The patients experienced the cancer antigen (CA-19-9) as the center piece of follow-up, with consultations revolving largely around the CA-19-9 results. Parallel to and independent of follow-up, the patients described an array of creative strategies for adapting to their altered bodies and new life situation. The strategies included homemade endeavors to minimize gut symptoms, for example mint tablets or dairy products without lactose: realizing lifelong dreams and resolving financial matters; confiding with likeminded outside the family or professionals outside the hospital. First encounters with HCPs were critically important with bad first encounters haunting patients throughout follow-up and good first encounters facilitating trust and reciprocity between patients and HCPs. Conclusion: Patients in this study perceived detection of relapse through CA-19-9 as the focal point of follow-up, leaving other patient-important symptoms insufficiently addressed. We may, therefore, consider not using this relatively unprecise marker for relapse in the future. Balancing clinicians' needs to diagnose relapse with patients' needs for rehabilitation warrants attention in clinical practice and future research.

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Section: Discussionsupporting

confidence: 71%

It’s all about the CA-19-9. A longitudinal qualitative study of patients’ experiences and perspectives on follow-up after curative surgery for cancer in the pancreas, duodenum or bile-duct

et al. 2019

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“…We report findings on other interview content elsewhere. 7,8 We continued interviewing until we achieved data saturation. We asked oncologists to complete demographic/practice information forms.…”

Section: Methodsmentioning

confidence: 99%

Facilitators and Barriers to Oncologists’ Conduct of Goals of Care Conversations

2018

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“…However, apart from the benefit of family involvement, there can also be some challenges to these conversations. Some studies demonstrated discrepancies between patient-family, and family-physician understanding about treatment goals in advanced cancer [42] . For example, a study conducted by Lipson et al [47] with 41 patient-family caregiver dyads demonstrated that patients and their family members might have different preferences for quality or length of life.…”

Section: Patients' Preferences Regarding Family Involvement In Decisimentioning

confidence: 99%

“…Oncologists recognize the importance of family involvement in decisions near the end of life. A qualitative interview study with 38 patients with advanced cancer and their oncologists (n = 21) found that patients and oncologists shared similar views about family involvement in such decisions, highlighting the importance for patients' understanding of their disease and family emotional support [42] . However, clinical evidence demonstrates that oncologists are still reluctant to involve family or else involve them too late in the course of the disease [43][44][45] .…”

Section: Patients' Preferences Regarding Family Involvement In Decisimentioning

confidence: 99%

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Patients' Preferences in Non-Curable Cancer Disease

Laryionava

Winkler²

2019

Oncol Res Treat

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Eliciting and integrating patients' preferences in decision-making in palliative oncology is an important criterion for the quality of end-of-life care. It is an essential prerequisite in supporting the integrity of patients' decision-making process, enhancing patients' right to self-determination and facilitating patients' autonomy. In this review we summarize the data on: (1) patients' preference for a decisional model in advanced cancer, (2) patients' preferences for quality versus length of life and the enrollment of patients in early-phase clinical studies, and (3) preferences for caregiver involvement in decision-making. Timely assessment of patients' preferences enables advance care planning with respect to considering patients' values, discussing therapy goals and planning for patients' end-of-life care. It helps avoiding overtreatment near the end of life and giving care that is aligned to patients' wishes and family capacities.

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Patients' and oncologists' views on family involvement in goals of care conversations

Abstract: Patients and oncologists have similar views about family involvement in GoC conversations. Learning how to communicate with family members should be a critical component of physician education in palliative care.

Cited by 20 publications

References 25 publications

It’s all about the CA-19-9. A longitudinal qualitative study of patients’ experiences and perspectives on follow-up after curative surgery for cancer in the pancreas, duodenum or bile-duct

It’s all about the CA-19-9. A longitudinal qualitative study of patients’ experiences and perspectives on follow-up after curative surgery for cancer in the pancreas, duodenum or bile-duct

Facilitators and Barriers to Oncologists’ Conduct of Goals of Care Conversations

Patients' Preferences in Non-Curable Cancer Disease

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