New Insights and Future Directions in Palliative Care across the Cancer Continuum

A special issue of Cancers (ISSN 2072-6694). This special issue belongs to the section "Cancer Survivorship and Quality of Life".

Deadline for manuscript submissions: closed (1 February 2024) | Viewed by 6994

Special Issue Editors


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Guest Editor
Department of Medicine, Baylor College of Medicine, Houston, TX, USA
Interests: psychosocial adjustment; caregiving; disparities; advanced cancer; implementation science; healthcare delivery research

E-Mail Website
Guest Editor
Department of Medicine, Baylor College of Medicine, Houston, TX, USA
Interests: health services research; palliative care; implementation science; survivorship; advanced cancer

Special Issue Information

Dear Colleagues,

Palliative care is an integral component of comprehensive cancer care. Its clinical practice is rooted in the philosophy of improving the physical, mental, spiritual, and psychosocial well-being of patients and their family members. Over the last few decades, palliative care has evolved from a specialty that focused almost exclusively on end-of-life care to one delivering comprehensive supportive care to patients throughout the disease trajectory. A growing evidence base has shown that integrating palliative care early on in the disease trajectory can help to alleviate symptoms, improve patient and caregiver quality of life and satisfaction with care, enhance illness and prognostic understanding, reduce healthcare costs, and improve survival. However, significant disparities exist in the access to and provision of palliative care in medically underserved populations. While a variety of integration models show promise in improving access to care, palliative care remains underutilized across the cancer trajectory. Numerous challenges and barriers exist in the implementation of palliative care across systems; furthermore, research focused on improving quality of care is limited.

This Special Issue seeks to 1) describe new models of palliative and supportive care and identify new opportunities to improve care quality across the cancer trajectory; 2) understand barriers and challenges to implementation and integration at the patient,  provider, and system levels; and 3) uncover new insights into multilevel factors that may exacerbate disparities in palliative care access/utilization among cancer patients as well as efforts to address these disparities. Original research papers and reviews are welcome. We will accept manuscripts from a variety of disciplines, including (but not limited to) nursing, medicine, epidemiology, psychology, health services, social work, implementation science, and ethics/public policy.

Prof. Dr. Hoda J. Badr
Dr. Elizabeth Kvale
Guest Editors

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Keywords

  • palliative care
  • oncology
  • disparities
  • quality care
  • interventions
  • models
  • multilevel factors
  • implementation
  • barriers
  • challenges

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Published Papers (4 papers)

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Research

16 pages, 1163 KiB  
Article
What Is Most Important to Family Caregivers When Helping Patients Make Treatment-Related Decisions: Findings from a National Survey
by Avery C. Bechthold, Andres Azuero, Frank Puga, Deborah B. Ejem, Erin E. Kent, Katherine A. Ornstein, Sigrid L. Ladores, Christina M. Wilson, Christopher E. Knoepke, Ellen Miller-Sonet and J. Nicholas Odom
Cancers 2023, 15(19), 4792; https://doi.org/10.3390/cancers15194792 - 29 Sep 2023
Viewed by 1207
Abstract
Prioritizing patient values—who/what matters most—is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we [...] Read more.
Prioritizing patient values—who/what matters most—is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we examined differences in factors considered very important by caregivers when partnering with patients in cancer treatment decision making by cancer stage and caregiver sociodemographics. Fifteen factors were rated on a 4-point Likert-scale from ‘very unimportant’ to ‘very important.’ Descriptive statistics were used to characterize caregiver factors and tabulate proportions of importance for each. Generalized linear mixed effect modeling was used to examine the importance of factors by cancer stage, and chi-square analyses were performed to determine associations between caregiver sociodemographics and the five most commonly endorsed factors: quality of life (69%), physical well-being (68%), length of life (66%), emotional well-being (63%), and opinions/feelings of oncology team (59%). Significant associations (all p’s < 0.05) of small magnitude were found between the most endorsed factors and caregiver age, race, gender, and ethnicity, most especially ‘opinions/feelings of the oncology team’. Future work is needed to determine the best timing and approach for eliciting and effectively incorporating caregiver values and preferences into shared treatment decision making. Full article
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13 pages, 291 KiB  
Article
Palliative Care Clinician Perspectives on Person-Centered End-of-Life Communication for Racially and Culturally Minoritized Persons with Cancer
by William E. Rosa, Meghan McDarby, Haley Buller and Betty R. Ferrell
Cancers 2023, 15(16), 4076; https://doi.org/10.3390/cancers15164076 - 12 Aug 2023
Cited by 1 | Viewed by 1790
Abstract
The aim of this study was to examine interdisciplinary clinicians’ perceptions of priorities in serious illness communication and shared decision-making with racially and culturally minoritized persons at end of life. Clinicians (N = 152) read a detailed case study about a patient [...] Read more.
The aim of this study was to examine interdisciplinary clinicians’ perceptions of priorities in serious illness communication and shared decision-making with racially and culturally minoritized persons at end of life. Clinicians (N = 152) read a detailed case study about a patient self-identifying as Black and American Indian who describes mistrust of the healthcare system. Participants then responded to three open-ended questions about communication strategies and approaches they would employ in providing care. We conducted a thematic analysis of participants’ responses to questions using an iterative, inductive approach. Interdisciplinary clinicians from nursing (48%), social work (36%), and chaplaincy (16%), responded to the study survey. A total of four themes emerged: (1) person-centered, authentic, and culturally-sensitive care; (2) pain control; (3) approaches to build trust and connection; and (4) understanding communication challenges related to racial differences. Significant efforts have been made to train clinicians in culturally inclusive communication, yet we know little about how clinicians approach “real world” scenarios during which patients from structurally minoritized groups describe care concerns. We outline implications for identifying unconscious bias, informing educational interventions to support culturally inclusive communication, and improving the quality of end-of-life care for patients with cancer from minoritized groups. Full article
17 pages, 2483 KiB  
Article
Planning for Your Advance Care Needs (PLAN): A Communication Intervention to Improve Advance Care Planning among Latino Patients with Advanced Cancer
by Megan J. Shen, Susie Cho, Claudia De Los Santos, Sarah Yarborough, Paul K. Maciejewski and Holly G. Prigerson
Cancers 2023, 15(14), 3623; https://doi.org/10.3390/cancers15143623 - 14 Jul 2023
Cited by 1 | Viewed by 1456
Abstract
Background: The goal of this study was to develop and optimize an intervention designed to address barriers to engagement in advance care planning (ACP) among Latino patients with advanced cancer. The resulting intervention, titled Planning Your Advance Care Needs (PLAN), is grounded in [...] Read more.
Background: The goal of this study was to develop and optimize an intervention designed to address barriers to engagement in advance care planning (ACP) among Latino patients with advanced cancer. The resulting intervention, titled Planning Your Advance Care Needs (PLAN), is grounded in theoretical models of communication competence and sociocultural theory. Materials and Methods: An initial version of the PLAN manual was developed based on a prior intervention, Ca-HELP, that was designed to improve communication around pain among cancer patients. PLAN uses this framework to coach patients on how to plan for and communicate their end-of-life care needs through ACP. In the present study, feedback was obtained from key stakeholders (n = 11 patients, n = 11 caregivers, n = 10 experts) on this preliminary version of the PLAN manual. Participants provided ratings of acceptability and feedback around the intervention content, format, design, modality, and delivery through quantitative survey questions and semi-structured qualitative interviews. Results: Results indicated that the PLAN manual was perceived to be helpful and easy to understand. All stakeholder groups liked the inclusion of explicit communication scripts and guidance for having conversations about ACP with loved ones and doctors. Specific feedback was given to modify PLAN to ensure it was optimized and tailored for Latino patients. Some patients noted reviewing the manual motivated engagement in ACP. Conclusions: Feedback from stakeholders resulted in an optimized, user-centered version of PLAN tailored to Latino patients. Future research will examine the acceptability, feasibility, and potential efficacy of this intervention to improve engagement in ACP. Full article
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11 pages, 480 KiB  
Article
Clinician Perspectives on Palliative Care for People with Hepatocellular Carcinoma: Facilitators of and Barriers to Referral
by Christopher D. Woodrell, Christie N. Mulholland, Nathan E. Goldstein, Carole L. Hutchinson, Thomas D. Schiano and Lissi Hansen
Cancers 2023, 15(14), 3617; https://doi.org/10.3390/cancers15143617 - 14 Jul 2023
Cited by 1 | Viewed by 1390
Abstract
(1) Background: Little is known about facilitators of and barriers to palliative care referral for people with hepatocellular carcinoma (HCC). The objective of this study is to identify facilitators and barriers of palliative care referral described by HCC-treating clinicians. (2) Methods: Semi-structured interviews [...] Read more.
(1) Background: Little is known about facilitators of and barriers to palliative care referral for people with hepatocellular carcinoma (HCC). The objective of this study is to identify facilitators and barriers of palliative care referral described by HCC-treating clinicians. (2) Methods: Semi-structured interviews (n = 16) were conducted with HCC-treating clinicians at two centers, focusing on referral patterns, palliative care needs, and disease course. A code book was created, axial coding was used to code all interviews, and selective coding was used to identify facilitators and barriers of palliative care referral. (3) Results: Facilitators included helpfulness at times of transition; help with management of certain symptoms; provision of psychosocial support; and positive experiences with referral. Barriers included feasibility concerns; lack of information about palliative care and who is appropriate; lack of symptoms requiring outside referral; and concerns that palliative care conveys loss of hope. (4) Conclusions: Participants noted the helpfulness of palliative care at specific points in the disease trajectory and cited barriers related to feasibility, lack of need, lack of awareness, and loss of hope. The results show actionable issues that can be addressed in future research to leverage the benefits of and overcome the barriers to palliative care for people with HCC. Full article
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