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Abstract
Objectives Outpatient in-person early palliative care improves quality of life for patients with advanced cancer. The COVID-19 pandemic forced a rapid shift to telehealth visits; however, little is known about how telehealth in outpatient palliative care settings should be optimised beyond the pandemic. We aimed to explore, from the perspective of patients attending an outpatient palliative care clinic, the most appropriate model of care for in-person versus telehealth visits.
Methods A qualitative study using the grounded theory method. One-on-one, semistructured qualitative interviews were conducted with 26 patients attending an outpatient palliative care clinic at a tertiary cancer centre recruited from two groups: (1) those with >1 in-person appointment prior to 1 March 2020 and >1 telehealth appointment after this date (n=17); and (2) patients who had exclusively telehealth appointments (n=9). Purposive sampling was used to incorporate diverse perspectives.
Results Overall, participants endorsed a flexible hybrid approach incorporating both in-person and telehealth visits. Specific categories were: (1) in-person outpatient palliative care supported building interpersonal connections and trust; (2) telehealth palliative care facilitated greater efficiency, comfort and independence and (3) patient-preferred circumstances for in-person visits (preferred for initial consultations, visits where a physical examination may be required and advance care planning discussions), versus telehealth visits (preferred during periods of relative heath stability).
Conclusions The elements of in-person and telehealth outpatient palliative care clinic visits described by patients as integral to their care may be used to develop models of hybrid outpatient palliative care delivery beyond the pandemic alongside reimbursement and regulatory guidelines.
- Cancer
- COVID-19
- Supportive care
- Clinical assessment
- Quality of life
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WHAT IS ALREADY KNOWN ON THE TOPIC
The COVID-19 pandemic required a rapid shift to telehealth outpatient palliative care delivery, without time to train professionals, optimise the quality of visits or understand which patients were most suited for telehealth visits.
Telehealth may help overcome barriers to accessing in-person palliative care related to geography and accessibility.
WHAT THIS STUDY ADDS
Through qualitative interviews with patients, we have identified several key elements of hybrid outpatient early palliative care: (1) elements of in-person outpatient palliative care: building interpersonal connections and trust; (2) elements of telehealth palliative care: efficiency, comfort and independence and (3) patient preferred circumstances for in-person or telehealth.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
The identification of elements of in-person and telehealth care may help to develop and refine models of hybrid outpatient palliative care (with in-person and telehealth options), including patient-specific and context-specific criteria for each modality of care. These should be considered alongside regulatory and reimbursement guidelines.
Introduction
Early outpatient palliative care is well recognised as beneficial for patients with advanced cancer. Several randomised controlled trials and meta-analyses have demonstrated that this model improves quality of life, satisfaction with care and symptom burden and may extend life expectancy.1–4 Prior to the COVID-19 pandemic, outpatient palliative care visits were usually offered exclusively in-person.
Telehealth has been defined by the WHO as the use of telecommunications and virtual technology to deliver healthcare outside of traditional facilities.5 The evidence around telehealth in palliative care is limited in scope and depth6 but suggests it is associated with high levels of patient and provider satisfaction7–10; may reduce emergency department visits11 and is convenient for patients who live far from their treating centre.12 A recent scoping review of palliative care interventions delivered using telehealth13 demonstrated the potential to improve symptom control,14 mood15 and quality of life.15 However, most of these interventions were implemented for home-based palliative care,14–17 and none exclusively delivered in outpatient settings. These advantages must be balanced alongside the limitations of telehealth, including connectivity and privacy issues, as well as an inability to provide a truly comprehensive interdisciplinary consultation.7 18
In response to the COVID-19 pandemic and associated recommendations around physical distancing and strict visitor policies in healthcare settings, most outpatient palliative care teams worldwide switched rapidly and predominantly to telehealth visits to provide uninterrupted care to patients with advanced cancer.19 20 Beyond the pandemic, it is anticipated that telehealth visits will continue to be offered in the outpatient palliative care setting.21 22 As such, there is a need to develop strategies for palliative care teams to optimise the quality of care provided through telehealth visits.
This study sought to explore, from the perspective of patients attending an outpatient palliative care clinic, the most appropriate model of care for in-person versus telehealth visits. We conducted qualitative interviews to understand patients’ experiences with telehealth visits to an outpatient palliative care clinic at a tertiary cancer centre in Toronto, Canada during the COVID-19 pandemic and (for those who had also experienced in-person care) compared these with prepandemic in-person experiences.
Methods
Methodology
Our methodology followed Corbin and Strauss’ qualitative grounded theory approach, where theories are constructed based on the lived experiences, reflections and perceptions of participants.23 An iterative approach to coding was used, along with triangulation, with both patient recruitment and the interview guide modified throughout based on emerging categories.
Clinical setting
The outpatient palliative care oncology clinic at the Princess Margaret Cancer Centre (PM) sees approximately 1200 new patients per year, with approximately 4500 visits annually.24 Prior to the COVID-19 pandemic, patients and their caregivers attended in-person. Patients completed patient-reported outcome measures in clinic and were reviewed by a nurse (all new patients), learner and an attending palliative care physician (all patients), with input from other members of the interdisciplinary team (social work, occupational therapy, spiritual care), as needed. Patients were provided with written materials about the palliative care programme at PM as well as resources around symptom management, community supports and contact details for the palliative care team in-between visits.
Following public health and institutional directives in response to the declaration of the COVID-19 pandemic in March 2020, patients with existing in-person appointments (both initial consultations and follow-ups) were informed of a switch to telehealth (telephone or videoconference) visits, based on their preference.19 All efforts were made to replicate the in-person experience. Patient-reported outcome measures were completed via email prior to each clinic visit or completed with the clinician during the telehealth visit; and clinic resources and educational materials were delivered via email or mail, as per the patients’ preference. In-person visits (IPVs) were available if deemed necessary by the patient or clinician (eg, lack of access to or unable to communicate using telehealth modalities or a need to perform a physical examination).19
Participant selection and study procedures
Patients known to the outpatient palliative care oncology clinic at PM were approached to participate in this study between 1 March 2021 and 8 March 2022. Eligible participants were English-speaking, ≥18 years old and had at least one visit to the outpatient palliative care oncology clinic. We used purposive sampling25 to elicit diversity in terms of age, sex, distance from home to the cancer centre (classified based on the patients’ postal code into either the city of Toronto or beyond)26 and type of telehealth encounter (telephone or videoconference). We included two groups according to the visit modality with the palliative care oncology clinic: (1) those who had >1 in-person appointment prior to the COVID-19 pandemic and >1 telehealth appointment after March 2020 (in-person/virtual, IPV) or (2) patients who had exclusively telehealth appointments after March 2020 (virtual-only, VO).
Eligible participants were approached by their palliative care physician who provided a brief description of the study. Those who were interested in learning more were contacted by a member of the research team, who described the study further and answered questions. Informed consent was collected from those who agreed to participate, either by mail or email. Recruitment concluded once data saturation was achieved. The study was approved by the University Health Network Research Ethics Board (UHN-REB # 20–6141).
Qualitative interviews
Using an interview guide, MJAC and BH (female palliative care physicians with experience in qualitative interviewing) conducted one-on-one semi-structured interviews, which ranged in length from seven to 70 min, via telephone (n=25) or on video via Microsoft Teams (n=1), as per participant preference. The interviewers were not known to the participants prior to the interview but were working in the outpatient palliative care oncology clinic at the time of the study. The interview guide included open-ended questions pertaining to participants’ experiences with telehealth visits to the outpatient palliative care clinic. The guide explored participants’ satisfaction with care, perceived quality of the care delivered, and how, if at all, this had changed compared with IPVs (for those who had in-person clinic visits prior to March 2020). Participants were asked to comment on the option of telehealth visits beyond the pandemic, including under what circumstances they might consider a telehealth visit to be preferable to an IPV and vice versa. The guide was revised continuously throughout the study as themes emerged from interviews.
Data analysis
Data collection and analyses occurred concurrently, in keeping with the grounded theory approach. Interviews were audiotaped and transcribed using a professional transcription service. The transcripts were then verified for accuracy and anonymised by members of the research team (BH, MJAC, SZ). Transcripts were not shared with participants, nor was member checking used. NVivo V.12 (QSR International, 2018) and Microsoft Word were used to facilitate data organisation and analyses.
An iterative approach was used for data interpretation. We followed the three phases of coding (initial, focused and theoretical) proposed by Corbin and Strauss.27 In the initial phase, open coding was conducted by examining the interviews line by line to generate a preliminary set of themes and categories, which were revised with input from RN and CZ. During the focused coding phase, the emerging categories from the initial phase were further integrated and organised. In the theoretical phase, codes identified during the focused phase were grouped, collapsed and integrated into an emerging theory. This was further refined until a single core category and associated subcategories emerged. The constant comparison technique was used throughout all levels of coding to compare the data systematically for similarities and differences within and between interviews28; this process was dynamic and began following the first interview. To enhance the rigour of this process, our team engaged in negative case analysis and peer debriefing.29
Weekly team meetings allowed for discussion of emerging themes and discrepant cases. Interviews and analyses continued until theoretical saturation was obtained when the team felt there were no new insights emerging from the analyses.
Results
We approached 30 IPV and 13 VO patients for participation in the qualitative interviews; 26 agreed to participate and completed interviews: 17 IPV and 9 VO. Reasons for non-participation included not returning the signed consent form despite reminders (n=11); inability to reach the participant after receipt of the signed consent form (n=3); functional decline (n=2) and severe hearing impairment requiring caregiver support to complete the interview (n=1). The demographics and clinical characteristics of the participants are shown in table 1.
Demographics of study participants
Across both groups, 10 men (8 IPV and 2 VO) and 16 women (9 IPV, 7 VO) participated in the study. The median age was 60 years (range 34–84). The most common cancer types were genitourinary, gastrointestinal and gynaecological (accounting for 19% each), followed by breast (15%) and lung (11.5%). After the switch to telehealth, nine participants (five IPV (31.3%) and four VO (44.4%)), had videoconference +/−telephone appointments, while the remaining participants continued exclusively with telephone appointments. Overall, 3 (11.5%) participants self-identified as 2SLGBTQ+ and 10 (38.4%) as having been born outside Canada, with no statistically significant differences between the IPV and VO groups based on clinical or demographic features. The IPV group was known to the palliative care clinic for a median of 27 months (range 8–105), compared with a median of 7 months for the VO group (range 1–12, p<0.01).
Categories
‘A flexible approach incorporating both in-person and telehealth visits’ emerged as the core category that encompassed all three subcategories of (1) elements of in-person outpatient palliative care: building interpersonal connections and trust (2) elements of telehealth palliative care: efficiency, comfort and independence and (3) patient-preferred circumstances for in-person or telehealth visits. Illustrative quotations for these categories, representing both typical and divergent comments, are presented in box 1 and tables 2–4.
Core category: a flexible approach incorporating both modalities
I mean, I do think I would want an actual in-person checkout, check-in every once in a while, but I did actually appreciate the option to be able to like sit in the comfort of my own home and still talk about whatever if we needed to talk about in that session (P-005-IPV).
Sometimes the personal visit has some advantage. If I want to talk more about something, if they need to examine me, if I needed it to ask for some support, they immediately take care of that. So yes, the virtual is good, but sometimes you need personal visit (P-006-IPV).
I do believe the hybrid approach is good because it can save a lot of time (P-013-IPV).
So, I think a combination of both is probably, would be really nice, but I know right now with COVID it’s not the best solution… But I think the phone calls shouldn’t stop just because COVID finishes, if it ever does for that matter (P-V6-VO).
Certainly my interaction with palliative care, you know, probably 90% of this can be done virtually. I just sort of miss the 10% then, that’s all (P-V10-VO).
Elements of in-person outpatient palliative care: building interpersonal connections and trust
Elements of telehealth palliative care: efficiency, comfort and independence
Patient-preferred circumstances for in-person or telehealth
Core category: a flexible approach incorporating both in-person and telehealth visits
This core category encompassed the short-term pandemic-related and longer term considerations associated with telehealth visits to the palliative care clinic (box 1). In the immediate aftermath of the declaration of the pandemic, IPV participants recognised the pragmatic approach taken by the cancer centre to switch most visits to telehealth. This switch was perceived as necessary and in keeping with public health messaging regarding physical distancing.
All participants expressed gratitude that their safety and well-being were being prioritised through offering telehealth visits, while maintaining the ability to connect with their palliative care team and other healthcare providers. The ability to meet with the palliative care team via telehealth visits rather than having to travel to the cancer centre, undergo screening and risk exposure to the virus, was appreciated.
While some participants struggled with the technical aspects of telehealth visits (particularly related to videoconferencing), most expressed feeling comfortable with these modalities from the outset, and this comfort grew over time. As participants felt less fearful about contracting COVID-19 with the rollout of vaccinations, they began to consider more broadly the advantages and disadvantages of in-person and telehealth visits as well as how these could be combined into an ongoing hybrid model of outpatient palliative care delivery. These are described in the subcategories below.
Elements of in-person outpatient palliative care: building interpersonal connections and trust
Overall, participants described feeling supported and having positive experiences with their outpatient palliative care team throughout the transition to telehealth visits during the pandemic. No participants expressed confidentiality or privacy concerns around the delivery of virtual care. Despite overall satisfaction with telehealth, most participants described some key elements that were missing compared with in-person appointments (table 2). Participants felt that a face-to-face visit helped to ‘humanise’ their care team and facilitated their ability to build trusting relationships with their providers. VO participants who opted for telephone visits rather than videoconferencing and had never met the palliative care team in-person, described that the opportunity to ‘put a face to a name’ was a critical missing element of their care. An additional factor included the ability to view their physician’s non-verbal reactions and expressions, which enhanced the patients’ feeling of being listened to and understood. Additionally, many participants perceived that the ability for a physician to see their non-verbal cues may help with better identifying their medical needs. Although these sentiments were particularly prominent among patients who had telephone-only visits, patients who had videoconference visits also considered that these were an incomplete substitution for an IPV. In-person interactions were described as having an intangible element that helped build an emotional connection between patient and provider, beyond a purely clinical relationship. These were described by IPV participants as an important element to their care that enhanced their overall satisfaction with their care.
Elements of telehealth palliative care: efficiency, comfort and independence
Participants described several advantages of telehealth palliative care visits (table 3). The convenience of not having to travel to the cancer centre for appointments, with its associated direct and indirect costs and conducting a visit from the comfort of their own home, were cited as prominent advantages to telehealth. These logistical and personal factors contributed to their satisfaction with the virtual care delivery model adopted during the pandemic.
Delays and extended wait times with telehealth appointments were generally perceived as less disruptive to patients than delays at IPVs, as patients could continue with their daily activities at home and wait in a comfortable and familiar setting. However, one participant noted that unexpected delays were often more difficult to communicate in a virtual environment. Additionally, travelling to the cancer centre for in-person appointments required some patients to rely on family and friends for assistance. In these cases, telehealth appointments were particularly valued, as they allowed participants to maintain a sense of independence and autonomy.
Patient-preferred circumstances for in-person versus telehealth visits
Participants were asked about their preferences for visit modalities (in-person, phone or videoconference calls) beyond the pandemic. A hybrid model with a blend of in-person and virtual options was perceived as most desirable, with personalisation of the setting based on the circumstances of the visit and the patient’s state of health (table 4).
Participants described various scenarios for such a hybrid model beyond the pandemic. Overall, the major recommendation was that the first visit should be in-person. IPV participants described that having met the palliative team in-person at least once was an integral part of their care and to the establishment of a therapeutic relationship.
VO participants similarly observed that they felt the opportunity to meet with the palliative care team in-person was a missing element of their care during the pandemic, which impacted the establishment of a trusting rapport with the team. A majority agreed that, beyond the pandemic, initial consultations should be offered in-person.
Participants were asked to describe the different circumstances under which they would prefer to see their healthcare team in-person versus via telehealth. Many participants expressed that their palliative care physician should be the one to decide on the optimal visit modality, and some stated that an IPV once or two times per year should be mandatory. Virtual appointments were considered desirable during periods of health stability, as participants felt IPVs were often unnecessary for routine check-ins. In-person follow-up appointments were overall preferred in two scenarios: appointments requiring a physical examination and those where disease progression or advance care planning would be discussed. The latter appointments were perceived as more serious, where participants identified that they may need more direct support from their team. Participants expressed wanting the flexibility to change an appointment from in-person to virtual (or vice versa) depending on their needs for that visit and their perceived health on the day.
With the consensus that telehealth visits should continue beyond the pandemic, some participants reflected that this modality required specific clinical and communication skillsets and that healthcare providers might benefit from additional training to enhance their skills for this new clinical environment. They also felt that guidance for patients around the optimal use of telehealth may be beneficial.
Discussion
Our study is among the first to identify that a flexible hybrid approach incorporating both in-person and telehealth visits is preferred by patients receiving early outpatient palliative care. While patients expressed satisfaction with telehealth visits as initiated during the COVID-19 pandemic, they identified a need for a hybrid model beyond the pandemic that also incorporates IPVs. This core category was supported by three subcategories (1) in-person outpatient palliative care assisting with building interpersonal connections and trust, (2) telehealth palliative care facilitating efficiency, comfort and independence and (3) patient-preferred circumstances for in-person or telehealth visits. Although some participants expressed a desire for exclusively telehealth (for convenience) or in-person appointments, the majority preferred a hybrid approach and all identified circumstances where the other modality would be both desirable and necessary.
In-person interactions were perceived as critical to building personal relationships with the palliative care team, particularly among those participants who received exclusively telehealth care. These findings contrast with a previously published study exploring palliative care clinicians’ experiences with telehealth delivery that suggested they rarely encountered rapport-building issues with telehealth visits.30 Elsewhere, a study exploring the opinions of patients attending an outpatient palliative care clinic regarding the hypothetical use of telehealth found that the majority of participants did not foresee any challenges maintaining a therapeutic relationship with their physician.31 However, in both studies, patients had at least one IPV to the palliative care clinic, which is consistent with our findings, where patients voiced that an initial in-person assessment is fundamental to establish a solid therapeutic relationship.
Patients in this study identified several benefits of telehealth palliative care delivery, including the convenience of being able to connect with the team from the comfort of home as well as feelings of enhanced autonomy afforded by not having to rely on others for transportation to and from hospital appointments. While the ability to maintain contact with the team without having to risk exposure during the early days of the pandemic was also appreciated in several other studies,32–34 as was the convenience and reduced travel time associated with a telehealth visit for both outpatient palliative care31 and oncology visits;34 to our knowledge, the benefit of maintaining autonomy afforded by telehealth visits to an outpatient palliative care team has not been previously described and is an important element of care delivery in advanced disease.
Participants identified circumstances where in-person or telehealth visits beyond the pandemic would be preferred. IPVs were considered necessary for an initial consultation and preferred when discussing advance care planning, whereas telehealth was felt to be acceptable for follow-up visits during periods of relative health stability. Similar findings were reported in an Australian survey of clinicians and patients in an outpatient palliative care clinic.22 Patients attending outpatient oncology clinics expressed mixed perspectives regarding their preferences for goals of care discussions in-person versus via telehealth; however,34 this may reflect the different nature of the relationship between patients and their oncology versus palliative care provider, and expectations around the level of emotional support provided by either service. While the uncertainty caused by the COVID-19 pandemic may have played a role in patients’ willingness to discuss these topics via telehealth, it is uncertain whether this will remain in the future.35
Some participants in our study suggested the importance of providing communication skills training in the specific use of telehealth to providers delivering outpatient palliative care. Webside manner training has been shown to help build rapport and increase accessibility during palliative care telehealth visits.36 Since all participants expressed a desire for telehealth options to continue beyond the pandemic, offering educational modules on webside manner training for learners and providers should be considered.37 38 Similarly, some participants in our study suggested that guidance for patients, including how to log onto and prepare for a telehealth visit, might be beneficial to enhance overall satisfaction with these encounters.
This study has strengths and limitations. Its strengths include recruiting patients from two groups based on care modality received and the use of purposive sampling to elicit a diverse range of experiences. We recruited participants who had opted for telephone as well as videoconferencing options, recognising accessibility issues related to the latter. Limitations included VO participants being known to the palliative care team for less time relative to IPV; recruitment during periods of relative health stability may have influenced participants’ perspectives and experiences. We recruited English-speaking patients from a single outpatient palliative clinic in a tertiary cancer centre; the experiences expressed may not be generalisable to other clinical settings and contexts. Participants were all recruited during a time when legal, regulatory and physician reimbursement models supported telehealth visits, which may change beyond the pandemic.
Conclusion
Our qualitative findings identified elements of both in-person and telehealth visits to an outpatient palliative care oncology clinic during the COVID-19 pandemic that patients found valuable and necessary for optimal care delivery. Our findings support the desire for hybrid outpatient palliative care delivery beyond the pandemic and present circumstances for selecting visit modality based on patient preferences. Further studies are needed to assess provider perspectives on the delivery of hybrid outpatient palliative care; the long-term feasibility of such a hybrid model and the effectiveness of webside manner training for learners and providers.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by University Health Network Reference number 20-6141. Participants gave informed consent to participate in the study before taking part.
References
Footnotes
X @N/A, @JelauPC
Contributors BH conceived the study and supervised the project. BH and MJAC conducted the interviews, and along with SZ, verified and coded the interviews. RN and CZ provided support around the identification and development of themes. All authors (MJAC, SZ, RN, BO’C, JL, EM, CZ and BH) were involved in study planning and design, as well as interpretation of the results and revision of the manuscript. BH is responsible for the overall content as guarantor. The guarantor accepts full responsibility for the finished work and/or the conduct of the study, had access to the data, and controlled the decision to publish.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.