Abstract
Background:
Patients with serious illnesses have unmet symptom and psychosocial needs. Specialty palliative care could address many of these needs; however, access varies by geography and health system. Virtual visits and automated referrals could increase access and lead to improved quality of life, health outcomes, and patient-centered care for patients with serious illness.
Objectives:
We sought to understand referring clinician perspectives on barriers and facilitators to utilizing virtual tools to increase upstream access to palliative care.
Design:
Participants in this multisite qualitative study included practicing clinicians who commonly place palliative care referrals across multiple specialties, including hematology/oncology, family medicine, cardiology, and geriatrics. All interviews were transcribed and subsequently coded and analyzed by trained research coordinators using Atlas.ti software.
Settings/Subjects:
This study included 23 clinicians (21 physicians, 2 nonphysicians) across 5 specialties, 4 practice settings, and 7 states in the United States.
Results:
Respondents felt that community-based specialty palliative services including symptom management, advance care planning, physical therapy, and mental health counseling would benefit their patients. However, they had mixed feelings about automated referrals, with some clinicians feeling hesitant about not being alerted to such referrals. Many respondents were supportive of virtual palliative care, particularly for those who may have difficulty accessing physician offices, but most respondents felt that such care should only be provided after an initial in-person consultation where clinicians can meet face-to-face with patients.
Conclusion:
Clinicians believe that automated referrals and virtual palliative care could increase access to the benefits of specialty palliative care. However, virtual palliative care models should give attention to iterative communication with primary clinicians and the perceived need for an initial in-person visit.
Introduction
Early specialty palliative care can improve patient symptoms and quality of life, enable informed decision making, and improve caregiver burden and quality of life.1–3 Palliative care interventions also have the potential to lower end-of-life spending for patients living with serious illness by preempting costly hospitalization and emergency department (ED) visits.4–6 Despite this promise, access to palliative care services remains difficult for many of the >40 million Americans living with serious illness. 7
Incorporating virtual elements into early palliative care offerings can alleviate access issues for patients in need. Professional organizations and clinical guidelines are increasingly recognizing virtual care as a valid strategy to bring palliative care into underserved areas. 8 Virtual care could also allow for earlier provision of certain palliative care services, such as advance care planning and caregiver education and support. Although studies on virtual palliative programs are limited, more research is currently being carried out on the effectiveness of virtual palliative care options. 9 Some early studies have had promising results: home-based palliative care programs utilizing telehealth services have been successful in reducing hospital admissions, increasing hospice utilization, and increasing length of hospice stay. 10 Integration of virtual palliative options has also been met with positivity by patients, caregivers, and clinicians for how telehealth has allowed access to clinicians, quick responses, and improved efficiency and quality of care. 11 The COVID-19 pandemic caused a rapid shift toward virtual care, including an acceleration of virtual palliative care use. 12
Building a successful virtual palliative care model to provide upstream access to palliative care requires understanding referring clinician and specialty palliative care clinician perspectives on (1) the design of virtual palliative care interfaces, and (2) barriers to accessing virtual palliative care. We solicited perspectives that could help design an effective virtual palliative care program from 23 clinicians across multiple specialties.
Methods
This was a multisite qualitative study intended to inform the design of a virtual palliative care program among Medicare Advantage beneficiaries. We contacted participants and invited them to share their perspectives on virtual specialty palliative care via a semistructured telephone interview. The goal of these interviews was to understand barriers and facilitators to implementation of a virtual palliative care model from the perspective of clinicians who refer patients to palliative care.
The research team at the University of Pennsylvania included experts in health policy, palliative care, and qualitative methods. R.B.P. conceived the project idea, and served as the principal investigator on the project. T.K. is an expert in qualitative methods and drafted the initial interview guide and oversaw data collection and analysis. J.S. conducted interviews and assisted with data coding and analysis. C.H. and A.D. also assisted with data coding and analysis. W.J.F. served as the Project Manager and ensured adherence to study protocols. E.J.E. and A.S.N. assisted with study design, analysis, and reviewed the article. T.K., R.B.P., and W.J.F. collaborated with experts in palliative care to design the interview guide (Supplementary Data S1). The interview guide targeted clinicians who treat patients with advanced illness and who commonly refer to specialty palliative care. This research project was ruled exempt by the University of Pennsylvania Institutional Review Board.
Sample and recruitment
We aggregated an initial clinician roster using several physician-level datasets, including the AMA Master list, the Colorado Academy of Family Physicians, snowball sampling, and the Principal Investigator's (R.B.P.) professional contacts. The AMA Master List is a telephone-verified database of office-based U.S. physicians who collect demographic and practice-level information, including data regarding practice, health system, hospital, and group practice affiliation, organized by National Provider Identifier number. This database is updated semiannually, deduplicated, and is a nearly complete sample of all office-based U.S. physicians. It has been used successfully used in other studies that included surveys with a 5–15% response rate historically,13,14 but we are unaware of its use in qualitative studies. The qualitative nature of the study may explain this lower response rate.
Although chronic obstructive pulmonary disease is a serious illness, we excluded pulmonary critical care doctors from our sample because we could not identify from datasets who had worked in primarily inpatient ICU versus outpatient settings. We excluded nephrologists because this program was meant to inform a Medicare Advantage program, which does not cover end-stage renal disease. Recruitment e-mails were sent every few weeks for a total of five sends. Of the 2825 e-mails that were sent, only 2 individuals responded to participate in interviews.
The Colorado Academy of Family Physicians listserv is a professional listserv of family medicine physicians. We oversampled cardiologists and oncologists as they are historically most likely to refer patients to palliative care. E-mails were sent to 1800 physicians, and 7 responded to interview requests. Our initial outreach resulted in disproportionately high numbers of oncologists. To increase our sample and add diversity we focused on outreach to physicians with specialties in cardiology, family medicine, and geriatrics. We e-mailed potential participants who the PI knew, and we asked for suggested recruits from those who agreed to be interviewed. Recruitment continued until thematic saturation was reached and all study personnel felt that no new themes were arising from the interviews.
Data collection and analysis
Interviews were conducted by phone by a Clinical Research Coordinator (J.S.) trained in qualitative methods and took ∼30 minutes to 1 hour to complete. Participants were informed about the time commitment for interviews in the initial outreach e-mails, and they were offered a $150 gift card for their participation in an interview. Verbal consent was obtained from each clinician. The University of Pennsylvania Institutional Review Board ruled this study exempt (protocol 850075).
All interviews were recorded and professionally transcribed. In addition to interview questions, we collected basic demographic information including respondents' age, race, gender, practice type, market, and the number of years in practice. Data were entered into Atlas.ti version 22.1.5.0. A codebook was developed that included a priori themes as well as themes that emerged from the interview data. At least two research staff members (T.K., C.H., J.S.) coded all interviews. The focus of this project was to capture perspectives that could help design an effective palliative care intervention program. The researchers did not conduct consensus coding during the coding process, as disagreements were welcome to ensure multiple perspectives were captured. Once all data were coded, theme sheets were developed to review each of the identified themes and corresponding data.
All researchers reviewed the theme sheets and came to consensus on exemplary quotes that reflected the identified themes. Reporting of sampling, interviews, and analysis followed the COnsolidated criteria for REporting Qualitative research (COREQ) checklist (Supplementary Data S2).
Results
We interviewed 23 participants (Table 1). Respondents had varied patient panels depending on their specialty, where they were located, and the local population. Participants included those who practiced in rural, urban, and suburban areas across the country. Respondents also represented various specialties including hospitalists, oncologists, and family medicine. Respondents ranged in age from 33 to 67 years. Four identified as Asian or Indian, 1 as Black and Asian, 2 as Black, and 15 as White or Caucasian. One identified as Hispanic or Latinx. Fifteen identified their gender as male, and 6 as female. Two respondents did not provide demographic information, seven did not give their age, and one did not give their years in practice. Sample illustrative quotes for all sections are provided in Table 2.
Participant Characteristics
Selected Quotes
Palliative care services: Benefits and access
Respondents were overwhelmingly supportive of palliative care services. They described patient needs for spiritual care, nutrition support, support with activities of daily living, transportation, socialization/group support, physical therapy, mental health, social work, home visits, advance care planning, remote/on-call support, symptom management/pain control, economic/financial support, massage, durable medical equipment, pharmacists, ethicists, legal services, hospice referral and transition, alternative medicine, occupational therapy, speech therapy, music therapy, companionship, and patient advocacy. The availability of palliative care providers is variable across health systems and regions, affecting clinicians' ability to refer patients to potentially beneficial services.
Virtual palliative care: Facilitators and barriers
All respondents worked for institutions or organizations that implemented virtual palliative care or telemedicine during the COVID pandemic, and they were able to maintain and expand it after the infrastructure was in place. Programs that primarily utilized telephone visits implemented video-based palliative care during COVID and found the technology beneficial.
Respondents felt that virtual care could be useful for providing services that had limited availability in their geographic area or for patients who may have to travel far for a visit. Patients who live in rural areas with limited health care resources particularly benefited from virtual care. In addition, patients utilized virtual care for follow-up visits if they did not need to be seen in person, saving them a trip to the office.
Virtual palliative care also offers opportunities for the family to participate in patient care. Multiple family members can log in at the same time, regardless of their proximity to the patient, and it allowed for increased family involvement in decision making and care. Clinicians were also able to see patients' home life more clearly and could get a sense for their space and familial relationships through virtual visits.
However, respondents felt that palliative care should be initiated in person. Face-to-face care was preferred for initial visits with palliative care providers to establish rapport and build a relationship. Follow-up appointments via a virtual platform were acceptable, particularly for patients who would have difficulty attending an in-office appointment.
Others identified barriers to its use in palliative care including concerns about reimbursement. Palliative care reimbursement typically did not cover the costs of providing it, and such care was often subsidized by other service lines in health care organizations. Virtual health care received comparable reimbursement rates to in-person visits during the pandemic. Since then, reimbursement rates have varied by payer—leading to financial challenges for providers.
An additional barrier to virtual palliative care was the need for health care teams to offer patients training to be able to navigate the telemedicine technology necessary to participate in the visit. Many patients appropriate for palliative care do not have the technical skills to download a new application on their phone or computer and utilize it for a visit. Some visits turned into technology troubleshooting sessions that were a challenge to complete. Patients needed training to ensure they could participate in a visit.
Automatic referrals
Respondents had positive feelings about automatic palliative care based on clinically valid criteria, citing potential utilization increases and reductions in clinician referral bias. Some respondents also only felt comfortable with auto referrals if they came from clinicians as opposed to an automated algorithm. Others were comfortable with an “opt-out” system in which referrals would be automated unless they actively chose otherwise.
Respondents were skeptical of automated referrals. They were concerned about a lack of personal touch from warm handoffs between clinicians. Another respondent had concerns about automated systems creating referrals without any clinician input. Respondents who viewed automatic referrals negatively were concerned about the reduction of physician oversight, patient confusion, and workforce overload. One respondent felt that it would increase their workload because they would have to manually check each automated referral.
Referrals to virtual palliative care outside clinician organization
Respondents suggested that, if their organizations do not offer virtual palliative care, one mechanism for primary treating clinicians to increase access may be to refer their patients to external agencies or clinicians outside their own system that offer virtual palliative care. However, respondents wanted to ensure that they would remain involved in and informed of their patients' care. Respondents wanted to know about major events that happen in external palliative care and how they can support those functions with the primary care they provide.
Respondents viewed integrated Electronic Health Record (EHR) access as essential to coordinated care between themselves and external palliative care clinicians as another barrier to virtual care was the need to access medical records from other institutions. Clinicians may have referred patients to palliative care services outside their medical practice—particularly for those who are not part of a larger health system or academic medical center. Sharing medical records across institutions poses a challenge for clinicians to effectively collaborate and communicate about treating patients.
Discussion
Respondents advocated for a wide range of palliative care services for patients with serious illness, but they acknowledged a variety of barriers can inhibit access. Availability was a commonly cited issue, with clinicians struggling to refer patients to palliative services due to the varying availability of palliative clinicians across health systems. With a future influx of palliative clinicians to these areas unlikely in the near term,15,16 establishing virtual palliative options could be a promising way to improve access, particularly for rural patients or patients with transportation issues. 17 Some needs (e.g., mental health visits) could be better met through virtual visits than others (e.g., physical therapy). However, for those services that could feasibly be done remotely, virtual visits may improve access. 17
Respondents were supportive of virtual palliative options for patients but expressed reservations about a fully virtual model. Especially after the COVID-19 pandemic, respondents have the infrastructure for virtual visits and felt that virtual care could be useful for providing services that were limited in their geographic area, or for involving family members in a patient's care planning. But respondents also stressed the importance of certain aspects of an initial in-person visit, such as the ability to look someone in the eye or provide a comforting touch. Building a relationship with the patient and first discussing sensitive topics around palliative care would benefit from not having the divide a screen creates. For this reason, any virtual model should consider incorporating an initial nonvirtual visit. It should be acknowledged that a model that puts patients onto a pathway to virtual care rather than being fully virtual from the start may still face workforce constraints limiting palliative care access.
Barriers such as communication and awareness issues could be addressed in conjunction with any new model via educational information sheets or videos. 18 Reimbursement concerns would need to be addressed as well, with participating clinicians reassured that they would be adequately reimbursed for virtual care.
Clinicians had mixed feelings about automatic referrals, with some feeling hesitant about not being alerted to such referrals. Clinicians were concerned about a lack of physician oversight and wanted to be aware of how they could support any major events happening in external palliative care. Responses showed the need for communication if instituting an automatic referral mechanism to keep physicians feeling in control of their patients. Hesitant respondents were more comfortable with automatic referrals if they were offered an opt-out option. Along with winning over clinicians, responses suggested infrastructure challenges that would need to be addressed for successful models using an automatic referral, including EHR integration.
Our findings are similar to other mixed-methods evaluations of virtual palliative care conducted during the COVID-19 pandemic, which found providers to support blended models of palliative care provision.19,20 Another study reported similar strengths and weaknesses of virtual care, namely that it was easier to incorporate families, access was improved, and efficiency was up, but that the loss of human connection and physical touch was a major challenge. 21 Our study is one of the first to study external agencies providing palliative care. It is also one of the first to interview respondents on virtual palliative care after the most restrictive parts of the COVID-19 pandemic, and to focus on a U.S. study population.
Limitations
The sample of respondents only included those who were willing to participate in the study, and participants were identified through snowball sampling and reliance on professional associations and networks. Initial outreach via the AMA Master list and the Colorado Academy of Family Physicians had low response rates, perhaps owing to the qualitative nature of the study. Utilizing professional networks and snowball sampling improved recruitment but may have reflected a biased sample. The opinions reflected may not represent all opinions on palliative care among this clinician population. In addition, there was a paucity of participants from diverse racial and ethnic backgrounds, and some perspectives may not have been included owing to the homogeneity of the respondents. However, the sample did include varied clinical specialties and respondents from across the United States representing varied geographic and clinical perspectives.
Conclusion
Patient access remains limited for palliative care services, despite the high need among the large population of those with serious illness. Offering certain palliative care services early and virtually could improve outcomes and address access issues. Clinicians are supportive of palliative care services and open to virtual palliative care but feel that such care should only be provided after an initial in-person consultation. Any model should take these feelings into account, along with clinician hesitance around automatic referrals. Prioritizing communication and collaboration when implementing an upstream virtual model can help gain clinician support.
Footnotes
Disclaimer
The authors are solely responsible for the design and conduct of this study, study analyses, and the drafting of this article. The funder played no role in study design, collection, analysis, and interpretation of data, writing of the report, and the decision to submit the article for publication.
Funding Information
This project was funded by Humana (Humana Schedule 020–Parikh).
Author Disclosure Statement
E.J.E. has received grants from Embedded Healthcare, Hawaii Medical Services Association (HMSA) Humana, Patient Centered Outcomes Research Institute, Mendel Health, Inc., Laura and John Arnold Foundation, Janssen Pharmaceuticals, Inc., Schmidt Futures Schwab Charitable Fund, University of Miami, University of Bergen. He also receives book royalties. E.J.E. received consulting fees from Healthcare Foundry, Korro/Coach AI, and Aberdeen, Inc. He has received honoraria from Massachusetts Association of Health Plans, Princeton University, Philadelphia Committee on Foreign Relations, Yale University, Hartford Medical Society, Global Innovation Forum Association of Academic Health Centers, Hawaii Medical Services Association & Queens Health System, Advocate Aurora Health Summit, University of Pittsburgh Medical Center, University of California San Francisco, Advocate Aurora Health, Cain Brothers Conference, Bowdoin College, Ontario Hospital Association, University of Oklahoma, The Quadrangle, Sanford Health, Health Plan Alliance, and Emory Health Care Leaders Retreat. He has received travel support from Princeton University, Hartford Medical Society, Global Innovation Forum Association of Academic Health Centers, Macalester College, Oak CEO Summit, Advocate Aurora Health Summit, University of Pittsburgh Medical Center, DPharm Conferenc, University of California San Francisco, Cain Brothers Conference, Bowdoin College, The Galien Foundation Jerusalem Ethics Forum, HLTH 2022, Hawaii Medical Services Association, Tel Aviv University, The Suntory Foundation, Ontario Hospital Association, University of Oklahoma, The Quadrangle, Lazard Healthcare Leaders' Summit, HLTH 2023, Sanford Health, Health Plan Alliance, Emory Health Care Leaders Retreat. He participated on the following Data Safety Monitoring Board or Advisory Boards: Biden's Transition COVID-19 Committee, World Health Organization COVID-19 Ethics & Governance Working Group, Cellares Corp., Village MD, Notable Health, Peterson Center on Healthcare, World Health Organization, Clarify Health Solutions, Inc., FeelBetter, Inc., Alto Pharmacy Holdings, Link Health Technologies, Inc., JSL Health Capital, HIEx Health Innovation Exchange (sponsor United Nations, Geneva). E.J.E. has served in a leadership or fiduciary role for OncoHealth, Village MD, Oak HC/FT, Embedded HealthCare LLC, COVID-19 Recovery Consulting LLC., Journal of the American Medical Association (JAMA), and the Center for American Progress (CAP). He holds stock in Alto Pharmacy Holdings, Link Health Technologies, Inc., HealthCare Foundry, Inc., Korro/Coach AI, Ltd, Clarify Health Solutions, Inc., FeelBetter, Inc., and Cellares Corp. He also holds interests in Applecart Project, Maniv, and Aktivate. A.S.N. reports grants from Hawaii Medical Service Association, grants from Commonwealth Fund, grants from Robert Wood Johnson Foundation, grants from Donaghue Foundation, grants from the Veterans Affairs Administration*, grants from Arnold Ventures, grants from United Healthcare, grants from Blue Cross Blue Shield of NC, grants from Humana, personal fees from Navvis Healthcare, personal fees from Elsevier Press, personal fees from Medicare Payment Advisory Commission, personal fees from Analysis Group, personal fees from Advocate Physician Partners, personal fees from the Federal Trade Commission, personal fees from Catholic Health Services Long Island, and equity from Clarify Health, personal fees and board membership for The Scan Group, and noncompensated board membership for Integrated Services, Inc., outside the submitted work in the past 3 years. R.B.P. has received grants from the National Institutes of Health, Department of Defense, Prostate Cancer Foundation, National Palliative Care Research Center, NCCN Foundation, Conquer Cancer Foundation, Humana, Emerson Collective, Schmidt Futures, Arnold Ventures, Mendel.ai, and Veterans Health Administration; personal fees and equity from GNS Healthcare, Thyme Care, and
personal fees from the Cancer Study Group, Biofourmis, Genetic Chemistry Therapeutics, CreditSuisse, G1 Therapeutics, Humana, and Nanology; honoraria from Flatiron and Medscape; has board membership (unpaid) at the Coalition to Transform Advanced Care and American Cancer Society; and serves on a leadership consortium (unpaid) at the National Quality Forum. The other authors have nothing to disclose.
References
Supplementary Material
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