Patient and Caregiver Perspectives on How to Introduce Community-Based Palliative Care

Zhu

et al. 2021

Self Cite

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

Cardenas

Zhu

et al. 2021

Self Cite

“…This strategy is in keeping with the preference, expressed by participants in other research for how primary care providers should introduce and refer patients to palliative care. 28 At the same time, drafting and implementing a public health communication strategy would bode equally well, 29,30 including through the use of patient role model stories that have shown to be effective in improving knowledge about palliative care. 31 Additionally, patients seem to have a high level of confidence in their primary care physicians’ decision-making on their behalf, as well as entrusting their care to other healthcare professionals they come into contact with, thus strengthening the argument for involving healthcare professionals in expanding HBPC services to this population.…”

Section: Discussionmentioning

confidence: 99%

Identifying Paths Forward: Expanding Palliative Care to Low-Income Patients in California

Hoe

Wang

et al. 2022

Self Cite

Multiple studies demonstrate most consumers do not know about palliative care. And, since January 2018, California’s Medi-Cal Managed Care patients have been eligible for palliative care services under Senate Bill 1004 (SB 1004). Yet, the uptake of palliative care services was underwhelming. The purpose of this study was to explore patient-centered barriers to palliative care. We recruited 27 adult Medicaid managed care patients from community-based sites in Los Angeles and conducted semi-structured qualitative interviews. Each participant was asked questions to elicit their knowledge about, and perspectives on, palliative care as well as their preferred communication approaches for receiving a referral to palliative care. The interviews were audio-recorded and transcribed verbatim. We used a grounded theory approach to guide our analysis of primary themes. Our findings indicated that the barriers to palliative care referrals among this population included lack of knowledge about palliative care and available services; the reliance on, and trust in, primary care physicians for information; language and cultural barriers; housing instability; and patient believing they are neither old enough nor sick enough to need palliative care. These findings emphasize the critical role primary care physicians play in advocating for low-income patients and the necessity for culturally sensitive education about palliative care. Promoting knowledge and understanding of palliative care among both primary care physicians and consumers is critical to ensuring access to care.

“…4,15 Little research has focused on understanding successful practices and approaches to communicating about HBPC to physicians, patients, and caregivers. In one small study examining patient and caregiver perspectives on how best to introduce palliative care, 16 researchers found that patients and caregivers want more education and understanding of HBPC before deciding to enroll in HBPC services. This study also found that a program's messaging may impact patient and caregiver decision-making.…”

Section: Introductionmentioning

confidence: 99%

“You cannot stop talking about palliative care:” Perspectives and Learnings from Providers on Communicating about Home-based Palliative Care to Patients and Physicians

Kogan

Lomeli

et al. 2022

Self Cite

Background Home-based palliative care (HBPC) programs are proliferating across the U.S, yet face significant, documented challenges in promoting uptake of services and sustaining sufficient patient referrals. There is a huge need to understand effective methods for engaging physicians, patients, and caregivers in palliative care. Thus, the purpose of this study was to elicit successful practices on how to best communicate about HBPC to both healthcare providers and patients/caregivers. Method Focus groups with nine California-based HBPC organizations were conducted between January and April 2020. Discussions lasted approximately 54 minutes, were guided by a semi-structured protocol, audio-recorded, and transcribed verbatim. Thematic analysis was used to identify themes and codes from the data. Results Twenty-five interdisciplinary HBPC staff members participated in a focus group. Most identified as white (76%), female (76%), and working in their current position for 5 years or less (56%). Three themes were identified from the data: (1) value of relationships; (2) communication do’s and don’ts; and (3) need for education. Participants discussed actionable recommendations for each theme. Discussion Study findings highlight several successful practices for HBPC programs to communicate- and foster relationships with healthcare professionals and patients/families about palliative care, with education at the crux. Lessons learned about key words and phrases to say and to avoid are particularly valuable for budding HBPC programs. Our results suggest that HBPC providers exert enormous efforts to increase patient referrals and enrollment through strategic, continuous outreach and education to physicians, patients, and their caregivers; however, palliative care educational interventions are needed.