Article Text
Abstract
Advanced care planning (ACP) is a series of ongoing voluntary discussions between patients, families and healthcare professionals to plan for their future healthcare needs. Despite patients with rheumatic diseases having high symptom burden and disease complications, the ACP completion rates in patients with rheumatic diseases remain low. In this quality improvement project, we aimed to increase the number of completed ACP in a tertiary referral rheumatology centre in Singapore from 0 to 1 per month. We showed a statistically significant increase in ACP completion across 1 year with two Plan-Do-Study-Act cycles. Further studies are needed to explore further interventions for ACP completion in patients with rheumatic diseases.
- Advance Directives
- Healthcare quality improvement
- Patient Preference
- Quality improvement
Data availability statement
Data are available on reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Advanced care planning (ACP) is a series of ongoing voluntary discussions between patients, families and healthcare professionals to plan for their future healthcare needs. ACP has been shown to improve end-of-life care, but rates of ACP completion have been dismal in patients with rheumatological disorders.
WHAT THIS STUDY ADDS
In this quality improvement project, we were able to achieve a statistically significant increase in ACP completion across 1 year with a multimodal intervention involving the education of rheumatologists, active referral of patients to ACP coordinators, providing ACP collaterals to patients and bridging the communication between the rheumatologist and ACP coordinators.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Through lessons learnt through this project, we were able to increase the rates of ACP completion in patients with rheumatological diseases. We hope that more patients with rheumatological diseases will be able to benefit from the increased uptake of ACP.
Introduction
Advanced care planning (ACP) is a series of ongoing voluntary discussions between patients, families and healthcare professionals to plan for their future healthcare needs. The European Association of Palliative Care recommended that healthcare providers should initiate this conversation.1 Subsequently, a certified ACP facilitator, medical provider or social worker explores the goals of care and the values of an individual to help craft and document their future healthcare preferences in an ACP Form.2 These coordinators are professionals employed by healthcare institutions and receive training to become certified ACP facilitators.
Detering et al demonstrated that ACP improves end-of-life care and reduces anxiety and stress levels in both patients and their families.3 Additionally, numerous studies have also documented positive impacts on patient care, including an increase in satisfaction and quality of life.4
Patients with rheumatic diseases have a high symptom burden with disease complications, which may lead to multiple admissions and recurrent infections.5 Patients with systemic sclerosis, dermatomyositis, lupus or vasculitis may have high mortality and morbidity rates if there is cardiopulmonary involvement, such as pulmonary hypertension, interstitial lung disease or myocarditis.6 7 Therefore, it is imperative for ACP discussions to be held between patients and the healthcare team to ensure that their care preferences can be made known to clinicians involved in their care.
Unfortunately, rates of ACP discussions have been low, with one study documenting this to be as low as 4.2%,8 but measures have been taken to change this. In Singapore, a study in the primary care sector showed that the use of both brochures and active counselling resulted in an absolute increase in completed advanced medical directives.9 To our knowledge, there have been no studies conducted on rheumatic patients.
Therefore, this quality improvement project (QIP) aims to increase the number of completed ACPs in patients with rheumatic diseases.
Methods
Study setting and period
This QIP was conducted in the Department of Rheumatology and Immunology in the Singapore General Hospital from 1 August 2022 to 31 April 2024. This project was conducted by a multidisciplinary team from the process transformation and improvement, medical social work, specialty nursing, and rheumatology and immunology departments. The team comprised five physicians, two specialty nurses, two ACP coordinators, two research coordinators and one quality improvement coach. This project was led by the junior and senior residents in the Department of Rheumatology and Immunology. This project was implemented in the inpatient setting, whereby patients were admitted and there was an opportunity for intervention. We invited all patients with rheumatic diseases who were older than 65 years old to participate in the project. We also included younger patients with significant rheumatic diseases with significant lung pathology (including pulmonary hypertension and interstitial lung disease) and/or significant cardiac pathology (including ischaemic heart disease or heart failure). Our inpatient registrars (senior residents) identified these patients during daily ward rounds and informed the specialty nurses to engage identified patients during their inpatient stay. These specialty nurses are specifically trained in rheumatology and have been working with these patients for at least 3 years; therefore, they have developed a good rapport with them. Prior to the commencement of this project, we had registered the project with the office in charge of quality improvement at Singapore General Hospital.
Study design
A specialty-based multidisciplinary interventional study was conducted.
Data collection and analysis
We retrieved the electronic medical records of all patient records in the Department of Rheumatology and Immunology, Singapore General Hospital, to determine if there was any completed documentation of ACP. We also confirmed the records with the medical social work office, who were able to double-check the records on documented ACPs separately. During each Plan-Do-Study-Act (PDSA) cycle, every referral for patients that was planned for an ACP discussion was tracked, along with the completion status and documented reason for not being able to complete the ACP discussion. Our primary outcome was a number of months with at least one documented ACP discussion.
Baseline data
The results of our baseline measurement found that there were zero completed ACP discussions over 6 months from July 2022 to February 2023.
Strategy to implement the project
The multidisciplinary team did a root cause analysis using the fishbone diagram as described in online supplemental figure 1. We plotted possible intervention packages and designed an implementation plan as described in online supplemental figure 2. We then conducted two PDSA cycles and data were collected and analysed. The results were subsequently presented in the medicine division quality improvement sharing session for dissemination.
Supplemental material
Root cause analysis
Online supplemental figure 1 describes the root causes of the reasons for poor ACP completion rate in patients with rheumatic diseases. 20 identified causes that may result in poor ACP completion rates were classified into reasons related to doctors, disease, patient, materials, system and family. Examples of such causes included a lack of confidence in leading ACP discussions by doctors and a lack of awareness of ACP by patients and their families.
Interventions and change ideas
Online supplemental figure 2 describes the change ideas that were targeted to increase the ACP completion rate. With the use of a prioritisation matrix, we focused on six specific changes out of a potential of 10 change ideas.
The proposed interventions were (1) team physicians to broach discussion about ACP as well as individual goals and plans during admission and document the discussion to facilitate outpatient discussion, (2) ACP facilitators to remind patients to let their primary physician know during the next appointment about the ACP discussion so that the primary physician can address any outstanding questions or ACP facilitators will document in the electronic medical records for patients with outstanding questions to their primary physicians, (3) ACP trained physicians to conduct ACP presentations during grand ward rounds to allow primary rheumatologists to understand ACP, along with regular reminders to the inpatient rheumatology team, (4) rheumatology inpatient team broaches ACP to rheumatology inpatients and to refer them accordingly to ACP facilitators using the computerised physician order entry, (5) rheumatology specialty nurses to provide ACP brochures when initiating ACP discussion in the ward and clinic settings and (6) rheumatology specialty nurses to provide Quick Response (QR) codes to patients to scan when doing ACP initiations, which would direct patients to an online workbook10 on ACP designed by the Agency of Integrated Care. This booklet is written in layman’s terms and guides the patient in reflecting on their values, concerns and views towards their health and end-of-life care. The link to the ACP resources is provided for reference (https://www.aic.sg/care-services/acp-resources/"https://www.aic.sg/care-services/acp-resources/). For our patients, all six interventions described above were implemented on the patients identified by our team registrars.
PDSA cycle of the project
Two PDSA cycles were conducted over a 12-month period. In each PDSA cycle, an intervention was implemented and studied for 6 months. Based on the result of the first PDSA cycle, further interventions were included in the second PDSA cycle along with the first cycle PDSA interventions.
PDSA cycle 1
In the first PDSA cycle, the proposed interventions as shown in online supplemental figure 2 were implemented. Results were monitored across a 6-month period (February 2023–August 2023). In this cycle, we restricted the ACP referral to maximum of 2 per month due to manpower limitations among the ACP facilitators.
PDSA cycle 2
In the second PDSA cycle, on top of the interventions in the first PDSA cycle, we did not set a maximum referral limit for the number of ACP referrals. This was done after consultation with the ACP service, which feedbacked that the number of referrals to them could still be increased. A second 6-month period (September 2023–March 2024) was monitored to track the number of ACPs completed.
Statistical analysis
Fisher’s exact test was used to analyse the primary outcome of months with completed ACP. The comparison group used was the 6-month preintervention. The significance level for all tests is set at p<0.05. Statistical analysis was calculated using IBM SPSS Statistics for Windows, V.20 (IBM).
Results
A total of 22 patients were referred for ACP discussion. Table 1 summarises the characteristics of patients being referred for ACP discussion. Figure 1 summarises the results of our PDSA cycles. During preintervention period, there were five ACP referrals, but none were completed.
During PDSA cycle 1, eight patients were referred for ACP discussion, we were able to achieve 5 out of 6 months with at least one completed ACP discussion, and this was statistically significant (p=0.015). During this time, the median number of completed ACP per month increased from a baseline of 0 to 1.
However, in PDSA cycle 2, 14 patients were referred for ACP discussion. The number of months with at least one completed ACP discussion fell to 2 out of 6 months (p=0.455). As such, the median number of completed ACP per month was 0 for this period, which was the same as the preintervention period.
Table 2 summarises the outcomes of ACP referrals and the reasons for ACP non-completion. Among patients who declined an ACP discussion, the top reasons were that (1) preferred to do advanced medical directives instead of ACP, (2) felt stressed discussing ACP and (3) preferred to read through ACP brochures on their own. Of note, some patients in PDSA cycle 2 (which took place between September 2023 and March 2024) also cited the reason that they would like to defer the discussion after significant holidays, such as the Chinese New Year (CNY), which took place in February 2024.
Discussion
We are one of the first to present a rigorous approach to explore the improvement of ACP completion rate in patients with rheumatic diseases. We were able to significantly increase our ACP completion numbers from 0 to 1 across 6 months in PDSA cycle 1, although this was not reproduced in PDSA cycle 2.
In contrast to our study, other QIPs for ACPs involving patients with advanced cancer had shown increased documentation by 12%.11 This may be because our study has targeted a different population of patients. Patients with rheumatological diseases are younger, and thus, ACP is not something that they will consider, especially when they are not in an acute flare episode. Further studies are needed to assess the understanding of ACP during the non-flare episodes in the outpatient setting.
This study revealed similar findings to that of Ng et al.12 Our patients have an interest in understanding more about ACP. However, when it comes to ACP completion, they were less keen, citing a lack of readiness and the need to first discuss the ACP with their families. Completion of ACP may be perceived as unnecessary when patients are physically well. Additionally, there is an element of the taboo of discussing ACP in Asian culture.13 Such taboo is particularly seen across festive seasons, especially during CNY, which could have contributed to the decrease in the number of completed ACPs in our PDSA cycle 2. More studies are needed to explore the barriers towards ACP and how to implement strategies to overcome the relevant barriers.
During this QIP, the team highlighted certain interventions to be particularly beneficial in improving ACP completion rates. First, it was important that a clinician with good rapport with the patient initiated the conversation on ACP. Examples of such clinicians included the patient’s primary rheumatologist or the advanced practice nurse taking care of the patient longitudinally. This agrees with previous studies, which have shown that the involvement of the patient’s primary provider is important in facilitating such discussions.14
Additionally, the ACP discussion should be paced well, according to the readiness of the patient. A systematic review on conditions for a successful ACP discussion found that it is essential that patients and their families are willing to participate in ACP.15 As such, future interventions can include improving clinicians’ skills in assessing a patient’s perceptions towards ACP discussion and strategies for a well-paced discussion.
Lastly, patients and their families were able to discuss their ACP when patients were well through the ACP workbook10 provided to them through QR codes given as part of the QIP. This workbook encouraged patients to reflect on their current concerns and health status and think about their views on treatment and goals of care. Studies have shown that ACP discussions should be iterative and repetitive to increase effectiveness.16 By allowing patients to reflect on ACP after the initial discussion, patients and their families were able to discuss key aspects of their goals of care when they were outside of the acute flare episode. While such information leaflets cannot replace a facilitated discussion with a trained healthcare professional, they helped to facilitate ACP discussions.
Lessons and limitations
This report is not without limitations. Two main factors contributed to the lower ACP completion rate in the second PDSA cycle. First, since our junior doctors are deployed to the department on a rotational basis of 3–6 months, adequate training may not have been achieved during their transitions; therefore, this limited our referral numbers in the second PDSA cycle. This reason was also one of the reasons cited by Johari et al17 for the lack of internal ACP referrals in their QIP study focusing on increasing the number of ACPs for patients with chronic obstructive pulmonary disease in the emergency department. Additional studies are needed to explore methods to improve the continuity of QIP efforts across junior doctors’ rotation periods.
Second, our interventions in the second PDSA cycle cut across holiday seasons, such as Chinese New Year, which made the discussion of ACP more difficult as patients preferred to defer the discussion to after the festive period. Further efforts need to be explored on the communications of ACP during festive seasons.
Third, our QIP was conducted in a single tertiary centre in a multiethnic Asian country. We expect the results to differ when conducted in other countries due to varying cultures and beliefs.
Last, we did not seek feedback from our patients on their views regarding each intervention, for example, their perspective on the ACP workbook.
Moving forward, we will monitor for sustainability of the impact of our interventions on ACP uptake in rheumatic interventions. Additionally, we hope to be able to understand the patients’ perspective of each individual component of our interventions to better improve our efforts towards improving ACP uptake.
Conclusions and recommendations
In this project, we were able to achieve a statistically significant increase in the number of months with at least one completed ACP across a 6-month period. We recommend further studies into factors that can encourage further interest in ACP. This is especially important as the short period during inpatient care may be too limited to fully explore the interests of patients in ACP.
Data availability statement
Data are available on reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This project was submitted to the Singhealth Institutional Review Board, which deemed it to be exempt from IRB review.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors YHK, MW-YT and MHL contributed to the design of this quality improvement report and collected relevant data. ZCL initiated and ensured interventions for the report were conducted in the inpatient team. PXC and LKT were involved in implementing the interventions detailed in this report. EJNS and YHK contributed to the writing and editing of this quality improvement report, with YHK being the main and corresponding author of the submitted report. EJNS submitted this report. ESL, WLP, THW and CWYS were involved in data collection. SXX provided QI support to the team. YHK is the guarantor of this report.
Funding Publication of this research was sponsored by the SingHealth Medicine ACP Sponsorship for QI publications.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.