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

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

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.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 168-168
Author(s):  
Anna Rahman ◽  
YuJun Zhu ◽  
Susan Enguidanos ◽  
Valeria Cardenas
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Individual Interviews ◽  
Palliative Care Education ◽  
Home Based ◽  
Care Information ◽  
Seriously Ill Patients

Abstract Although insurance companies are increasingly paying for home-based palliative care (HBPC), enrollment remains low. To identify patient and caregiver perceived barriers to HBPC and their recommendations for overcoming these barriers, we conducted semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on HBPC services; positive and negative aspects of the palliative program explanation; and suggestions for improving HBPC messaging. Seventeen patients and eight caregivers who were eligible for a randomized controlled trial of HBPC were interviewed. Themes related to HBPC referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that HBPC referrals come from healthcare providers or insurance companies and presenting HBPC more clearly. Findings reinforce the need for palliative care education among seriously ill patients and the importance of delivering palliative care information and referrals from trusted sources.

scholarly journals Patient, Caregiver, and Physician Barriers to Home-Based Palliative Care: Findings From a Terminated Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 167-167
Author(s):  
Susan Enguidanos ◽  
Stephanie Wladkowski
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Primary Care Physicians ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Insurance Company ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Abstract Despite two decades of palliative care services, there remains numerous barriers to patient and caregiver use of palliative care. For many years, policymakers believed lack of funding for palliative care was the primary obstacle to accessing palliative care services. In 2017, we undertook a randomized controlled trial to test the effectiveness of a home-based palliative care (HBPC) program within accountable care organizations and in partnership with an insurance company that covered the cost of HBPC. After 20 months, we had recruited just 28 patients. This symposium will: (1) describe outcomes from various approaches undertaken to engage primary care physicians and recruit patients and their caregivers into this trial; (2) present barriers to HBPC referral identified from a qualitative study of primary care physicians; (3) present findings from a qualitative study of patient- and caregiver-identified barriers to HBPC; (4) describe physician and patient barriers to research participation; and (5) discuss implications of these findings for researchers and healthcare providers. Information presented in this symposium will inform researchers and policy makers about challenges and facilitators to recruiting patients, caregivers, and physicians to participate in research studies as well as inform healthcare practitioners of potential obstacles to increasing patient access to HBPC.

scholarly journals Reasons for Refusing Home-based Palliative Care: A Qualitative Study of Patients and Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 903-904
Author(s):  
Valeria Cardenas ◽  
YuJun Zhu ◽  
Anna Rahman ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Care Service ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Palliative Care Service ◽  
Health Condition ◽  
Insurance Company ◽  
Home Based ◽  
Palliative Care Services

Abstract Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that coverage for palliative care may be insufficient to expanding patient access to home-based palliative care. Research has yet to explore palliative care barriers from the perspective of palliative care-eligible patients and their caregivers. To identify patients and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers, we conducted a qualitative study using semi-structured individual interviews. Participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed via telephone. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the program explanation; and suggestions for improving messaging around home-based palliative care. Researchers used grounded theory to identify the themes within the transcripts. Two researchers independently coded the transcripts and then met to compare coding and reconciled discrepancies until 100% consensus was reached. Identified themes related to home-based palliative care referral barriers included reluctance to have home visits, timing, lack of palliative care knowledge, misconceptions of palliative care, and patients’ self-perceived health condition (not sick enough for palliative care). Themes related to recommendations for overcoming these barriers included preferring a palliative care referral from healthcare providers or from insurance company and clearer presentation of palliative care service. Findings reinforce the need for additional palliative care education among patients with serious illness and the importance of delivering the information from a trusted source.

scholarly journals Harnessing New and Existing Virtual Platforms to Meet the Demand for Increased Inpatient Palliative Care Services During the COVID-19 Pandemic: A 5 Key Themes Literature Review of the Characteristics and Barriers of These Evolving Technologies

2021 ◽  
pp. 104990912110366
Author(s):  
Holly R. Cherniwchan
Keyword(s):  
Palliative Care ◽  
Control Measures ◽  
Inpatient Setting ◽  
Overall Acceptability ◽  
Care Services ◽  
Infection Control Measures ◽  
Home Based ◽  
Palliative Care Services ◽  
Virtual Services ◽  
Case Basis

The COVID-19 pandemic has increased the demand for end-of-life services and bereavement support, and in many areas of the world, in-person palliative care is struggling to meet these needs. Local infection control measures result in limited visitation rights in hospital and patients are often dying alone. For many years, virtual platforms have been used as a validated alternative to in-person consults for outpatient and home-based palliative care; however, the feasibility and acceptability of a virtual inpatient equivalent is less studied. Virtual inpatient palliative care may offer a unique opportunity for patients to have meaningful interactions with their care team and family while isolated in hospital or in hospice. This narrative review examines strategies employed during the COVID-19 pandemic to implement virtual palliative care services in the inpatient setting. Five key themes were identified in the literature between January 2020-March 2021 in the LitCovid NCBI database: 1) overall acceptability of virtual inpatient palliative care during the pandemic, 2) important logistical considerations when developing a virtual inpatient palliative care platform, 3) commonly used technologies for delivering virtual services, 4) strategies for harnessing human resources to meet increased patient volume, and 5) challenges of virtual inpatient palliative care implementation. Upon review, telepalliative care can meet the increased demand for safe and accessible inpatient palliative care during a pandemic; however, in some circumstances in-person services should still be considered. The decision for which patients receive what format of care—in-person or virtual—should be decided on a case-by-case basis.

scholarly journals Advantages and challenges in using telehealth for home-based palliative care: A systematic mixed studies review protocol (Preprint)

2020 ◽  
Author(s):  
Simen A Steindal ◽  
Andréa Aparecida Goncalves Nes ◽  
Tove E. Godskesen ◽  
Susanne Lind ◽  
Alfhild Dhle ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Delivery ◽  
Patient Centered ◽  
Care Services ◽  
Home Based ◽  
Mixed Studies Review ◽  
Palliative Care Services ◽  
Meta Analyses ◽  
Systematic Mixed Studies Review ◽  
At Home

BACKGROUND Due to the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth for home-based palliative care. OBJECTIVE The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients’ use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients. METHODS This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data and assess methodological quality. The data will then be analyzed using thematic synthesis. RESULTS We described the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021. CONCLUSIONS Following the ethos of patient-centered palliative care, this systematic mixed studies review could contribute recommendations for practice and policy enabling the development of telehealth applications and services that align with patients’ preferences and needs when using telehealth applications and services at home.

Meeting the needs of family carers: an evaluation of three home-based palliative care services in Australia

2010 ◽  
Vol 24 (2) ◽  
pp. 183-191 ◽  
Author(s):  
Kristina Thomas ◽  
Peter Hudson ◽  
Lynn Oldham ◽  
Brian Kelly ◽  
Tom Trauer
Keyword(s):  
Palliative Care ◽  
Family Carers ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

scholarly journals Refractory suffering at the end of life and the assisted dying debate: An interview study with palliative care nurses and doctors

2020 ◽  
pp. 147775092094661
Author(s):  
Kristine Espegren Gustad ◽  
Åsta Askjer ◽  
Per Nortvedt ◽  
Olav Magnus S Fredheim ◽  
Morten Magelssen
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Symptom Control ◽  
Prima Facie ◽  
Assisted Dying ◽  
Analysis Framework ◽  
Structured Interviews ◽  
Care Services ◽  
Palliative Care Services ◽  
Shed Light

Background How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists. Methods Semi-structured interviews with six nurses and six doctors working in palliative care in five Norwegian hospitals. Transcripts were analysed with systematic text condensation, a qualitative analysis framework. Results Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control. Conclusions If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved.

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