Abstract
Background:
Research on different models of palliative care should include evaluation of the patients' experience of care.
Objectives:
To understand the patients' experience regarding care received in a consult model versus an integrated palliative care and medical oncology co-rounding model during a hospital admission.
Design:
Qualitative study using thematic analysis.
Setting/Subjects:
Seventeen patients with stage 4 solid tumor admitted to a tertiary hospital in Singapore.
Results:
Although experiences of care during the hospital stay were similar in both models, patients in the integrated model were able to better articulate the benefits of palliative care involvement alongside oncologists—to facilitate better communication and a more holistic understanding of the clinical context, with a view to effectively addressing the patient's needs.
Conclusions:
An integrated co-rounding model may possibly smoothen the transition for advanced cancer patients to palliative care, and could perhaps be considered for implementation to foster reach of palliative care services and improve patient experience.
Introduction
Evaluation of palliative care service delivery models requires a multi-faceted approach that utilizes both quantitative and qualitative methods to gain a more comprehensive understanding of the intervention effects.1–3 Central to the provision of a health service intervention is the patient. Therefore, research on different models of palliative care should include evaluation of the patients' experience of care, to understand the wider benefits and drawbacks to patients.4,5
The mainstay of specialist palliative care (SPC) delivery in the inpatient hospital setting is a consult service, operating at the linkage level of integration. 6 This is where a SPC service is available as a separate structure in the health system, and referrals to the SPC team are either initiated ad hoc by the primary team or triggered by standardized criteria.7–9 An alternative model of SPC delivery is full integration into one co-rounding team, thereby fostering proactive communication, role negotiation, shared problem-solving, and mutual respect.6,10–12 We conducted a trial to compare the consult model versus an integrated co-rounding model of oncology and SPC. Effects on pain control, hospital length of stay, hospital readmissions, and access to palliative care are presented elsewhere.13,14
This qualitative study focuses on comparing the patients' experience of care in the consult model versus the integrated co-rounding model of care. The main aim was to understand the patients' experience with respect to care received during a hospital admission.
Methods
Study design
This was a qualitative study, presented here in accordance with the consolidated criteria for reporting qualitative research guidelines. 15
Study setting
The study was conducted in Singapore General Hospital, a 1700-bedded acute hospital with more than 80,000 admissions per year. About 5000 hospital admissions per year are cancer patients under the care of the Department of Medical Oncology. This study was conducted within the context of a stepped wedge cluster randomized controlled trial comparing the consult model versus the integrated co-rounding model of care, details of which have been described elsewhere. 14 The unit of randomization followed existing management structures in the oncology inpatient service comprising teams of clinicians that provided inpatient care mainly to patients with primary cancer sites in the lung, gastrointestinal system, head and neck, and genitourinary system. Outcomes were evaluated for patients admitted under the care of these teams.
The consult model of SPC service is a consultation service with oncologist-driven referrals. A cancer patient admitted to the hospital may have pain or other physical symptom problems such as breathlessness, or psychosocial issues. Oncology doctors usually provide general palliative care to address these symptom problems; for patients who have complex symptoms that are not adequately managed by general palliative care, the oncology doctors initiate a referral to the SPC doctors and nurses. Upon receiving a referral, the SPC doctor and nurse will review the patient and make recommendations for patient management; however, the oncology doctors still take primary responsibility for the patient's care.
In the co-rounding model of care, SPC doctors and nurses joined the oncology clinicians as integrated team members. The patient's issues were managed collaboratively by SPC and oncology health care professionals (HCPs). There was a weekly combined ward round as well as a daily discussion of all patients by the integrated oncology-SPC team; during these daily discussions, a joint decision was made regarding whether SPC was indicated for the individual patients. Most patients did not require specific input from the SPC clinicians. For those who did receive SPC, the content of care provided to individual patients was the same in both models, but delivered in a different context in terms of team structure and referral workflow.
Data collection
We invited patients older than 21 years, who were diagnosed with stage 4 solid tumor and admitted under the care of either the consult or co-rounding models to participate in the study. A purposive sampling approach was used to ensure representation of age, gender, primary cancer type, and model of care under which they were admitted. Eligible patients were first approached by their treating physician, who informed them of the study purpose and sought their permission to be referred to the study team. Semistructured interviews were conducted by a research coordinator (HRT) who was not involved in clinical care of patients and trained in qualitative research. Patients were interviewed once and written informed consent was obtained before the interview. Interview topics included patients' views and experience of (1) care during the hospital admission; (2) health care team; and (3) role of palliative care (Supplementary Table S1). The interviews lasted 30–60 minutes; they were audio-recorded and transcribed verbatim.
Data analysis
We conducted thematic analysis based upon the grounded theory approach. 16 In open coding, two of the investigators (S.S. and C.F.) independently read the transcripts and identified themes using a constant comparative approach and developed codes from these themes. 17 They grouped the codes into categories, and axial coding was used to identify properties of each category and the interrelationship of core categories. Data analysis was an iterative process in which codes were discussed and the categories and subcategories were adapted throughout the process. Regular discussions were held among members of the study team (G.M.Y., S.S., C.F., and S.Y.) to resolve differences and generate consensus. Data saturation was reached when no new theme was identified.
This study was reviewed and approved by the SingHealth Centralized Institutional Review Board (CIRB reference number: 2017/2799).
Results
A total of 40 patients were approached, of which 21 declined to participate for reasons of not feeling well or being busy, and 2 were not eligible. Therefore, 17 patients (8 from the consult model and 9 from the co-rounding model) participated and shared their experience of care during the hospital admission. Table 1 shows the participant characteristics—all had stage 4 cancer with representation from the various ages, genders, and primary cancer types. This qualitative study was conducted within the context of a stepped wedge cluster randomized controlled trial; the reasons for inclusion of four out of five clusters in the trial are detailed elsewhere. 14 Supplementary Table S2 shows the clusters that participants were drawn from. There was representation from all clusters, with about half the participants drawn from cluster 4, which accounted for about half of the total sample size in the trial.
Participant Characteristics
Overall hospital experiences were similar in the two models and across clusters. The main themes relevant to palliative care were (1) communication by HCPs with patients as well as with other HCPs and (2) views on the role of palliative care.
Communication by HCPs
Communication between HCPs and patients
In the consult model, patients felt that quality of communication with nurses was generally undermined by perceived lack of interpersonal skills of nurses, which then adversely influenced their experience of the hospital stay.
“The patient was moaning in pain… Then the patient asked for help and nobody came. They just said, okay we call the doctor. They did not even come to see… never show sympathy”. (P2)
However, not everyone had a bad experience. Some patients described how nurses “brought a smile out of me” through “human touch.” (P3) Likewise, for communication with doctors, mixed experiences were observed: some perceived doctors exclusively prioritizing treatment of the tumor rather than attending to the patient's suffering, whereas others saw doctors having “soft skills in telling [the patient] bad news” (P3).
In the integrated co-rounding model, nurses were generally felt to be “cheerful, very positive” (P5), “friendly, caring, and responsive” (P11), although very few nurses “forgot their intonation and shouted across the common corridor.” (P5) Most patients viewed that doctors explained treatment plans clearly and ensured that patients and families understood what was said. (P1, P15, P16, P17) However, one patient expressed a desire to be more fully informed, particularly when a decision on plans of care is made. (P11)
Communication between HCPs
In the consult model, patients commonly observed that doctors communicated with each other through written medical records. “[The doctor] keys into the computer and [the other doctors] go and see.” (P6) This practice was taken as a given. Otherwise, patients had little to say about communication between HCPs.
In the integrated co-rounding model, participants had both negative and positive observations of interactions between HCPs, and more views on how they should communicate with each other. A patient cited a negative incident where there was no record in the system about a medication change and how the doctors and nurses were “blaming” each other for the oversight (P5). Most patients shared that they did not have the opportunity to observe communication between HCPs because it was done away from the patient and “not in front of us” (P16). However, based on what HCPs spoke to them about, they “knew” (P1), were “sure” (P14), and “believed” (P17) that the HCPs “had a meeting or something like that” to discuss their case (P1) and were “working together as a team” (P15).
Patients perceived that doctors occasionally had contradictory opinions, expressing the need for attending doctors to review the patient together to make sure “they [palliative care team] know what is happening in the oncology side to manage the pain better” (P12), “to understand my condition better” (P17), and “to work closely together to help me” (P17).
Views on palliative care
In the consult model, a recurrent theme was the negative connotation of palliative care, associating it with death and loss of hope. As one patient described, palliative care was “end-stage care of the dying patient” (P2).
“There is still treatment… but then you come with a palliative team to talk, I think it's too early… you are telling your patient no hope… Unless you are very clear that there is really no cure, can't even prolong life, maybe you can talk about this topic.” (P2)
A few patients, however, valued the input of palliative care portraying it as “a little bit of comfort… a little bit of encouragement” (P3), “helping the patient to reduce stress” (P4), and “pain management” (P7)
In the integrated co-rounding model, palliative care was viewed as attending to “social and emotional” needs (P5) and “pain management” (P11, P13, P15, and P16). Notably, an altered notion of palliative care was evident for some patients through positive experiences of the palliative care team. For example, a patient made a distinction between a past experience of palliative care in the consult model where he “rejected palliative care because they talked as if I'm going to die anytime… the words were so negative” and his current experience of palliative care in the integrated co-rounding model where “they assure me that I don't have to suffer the pain, everything has been taken care of… they asked me to relax, not to worry” and spoke with “positive vibes.” (P1)
Regardless of the model of care, patients commonly viewed that the involvement of palliative care professionals would yield improved quality of patient care. As a patient from the consult model suggested, “Maybe you have one specialized nurse going around to ask those palliative patients how they are feeling, how to make them more comfortable. The doctors who are specialist probably couldn't give you this palliative care.” (P3) Similarly, a patient from the co-rounding model commented: “if they come together, then they will know the patient's conditions better. [IF] the oncologist comes [alone], the pain [palliative] team doesn't know what's going on and how to assess. If both come together, then the oncologist will say ‘okay this is what happened’. Pain [palliative] team will know what's going on.” (P12)
Discussion
Our findings indicated that there was a similar spectrum of patient experiences of care in the consult model compared to the integrated co-rounding model regarding communication by HCPs with patients and other HCPs. However, those in the integrated model seemed to be able to better articulate the benefits of oncology and palliative care teams reviewing the patient together—to facilitate better communication and a more holistic understanding of the clinical context, with a view to effectively addressing the patient's needs. Patients in the integrated model also framed the involvement of palliative care more positively in terms of supporting psychosocial needs and pain management.
The patients' experience of care presented in this study complement findings from our other studies as part of a multifaceted evaluation of the consult model versus the integrated co-rounding model. From the perspective of HCPs, the co-rounding model facilitated better communication between oncology and palliative care professionals. 18 This may have led to improvement in patient outcomes in terms of better pain control and shorter hospital length of stay.13,14,19 Along with these findings, this study found that the way palliative care is introduced as a separate or integrated model may affect patient's understanding of palliative care and their emotional readiness to interact with a palliative care team directly. 20 Therefore, an integrated model may help increase patients' awareness of palliative care, facilitate early transition to palliative care, and ultimately improve patient experience.21,22
Limitations
Patients' perceptions of palliative care may be influenced by how they viewed their overall experience in hospital rather than the model of care; however, the perspectives of patients are nonetheless valuable. We did not record the presence of family members at the interview, who may have also influenced their views. The voluntary nature of participation might have introduced selection bias, which we tried to minimize by including a balanced number of patients in both models. Those who declined to participate may have different views and participants in both models could not be perfectly matched; however, efforts were made to include a range of patients with varying demographic characteristics to elicit a wide range of perspectives. Participants were interviewed only once, and we did not collect data on temporal changes in their experience of care.
Footnotes
Authors' Contributions
G.M.Y. obtained funding for the study. G.M.Y., S.S., C.F., and S.Y. contributed to data analysis and interpretation and drafted the initial article. All authors contributed to study conceptualization and design, critically reviewed and revised the article, approved the final article for submission, and participated sufficiently to take responsibility for the content of the work.
Acknowledgments
We would like to thank all participants for their time and Ms Han Rou TEO for conducting the semistructured interviews.
Funding Information
This study was supported by funds from the Temasek Foundation SMF Research Grant Programme. G.M.Y. received support from NCCS Cancer Fund (Research) and salary support from the Lien Centre for Palliative Care.
Author Disclosure Statement
No competing financial interests exist.
References
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
