Developing and Evaluating a Care Pathway for Improving Palliative Care in Western Norway

Abstract

Background:

To operationalize the palliative care approach and improve care across services, a palliative care pathway (PCP) was developed in Western Norway. The PCP is an evidence-based framework for palliative care assessment and interventions in the form of a web-based flowchart.

Measures:

An electronic questionnaire aimed at health care professionals (HCPs) examined perceived usability and content. We registered PCP webpage activity and conducted an evaluation seminar and group interviews.

Intervention:

The pathway was developed (2015) and piloted in two cities (2017–2018/2020).

Outcomes:

HCPs perceived that the PCP contributed to increased palliative care knowledge and skills and worked as a reference and educational tool. They found the PCP easily accessible but asked for a search option and easier webpage navigation.

Conclusions/Lessons Learned:

An available PCP can support a common language for palliative care in different settings and enhance patient-centered care. HCPs need time to familiarize themselves with its content and use.

Background

Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness. ¹ Key elements of palliative care are timely identification of deteriorating health, holistic assessment of needs, management of pain and other physical, psychosocial, and spiritual problems, and person-centered care independent of prognosis or diagnosis.^1,2

Care pathways are complex interventions for decision making and coordination of care for a well-defined group of patients during a well-defined period, aiming to improve quality of life. According to the European Pathway Association, key elements of care pathways entail an explicit statement of goals and elements of care; the facilitation of communication among teams, patients, and families; the coordination of the care process; the documentation, monitoring, and evaluation of variances and outcomes; and identification of the appropriate resources. ³

In Norway, primary care is the responsibility of the municipalities, whereas secondary and tertiary specialist care is a governmental responsibility. Discontinuity of care owing to different care providers and different administrative systems is one of the key challenges. ⁴ Another challenge is that many health care professionals (HCPs) do not share a common understanding of palliative care, owing partly to specialized and fragmented care. ⁵

Members of the hospital-based specialist palliative care team and colleagues in the community experienced a lack of a common understanding of palliative care across levels and services in our region and a need for an available tool for evidence-based palliative care provision. Therefore, we wanted to conduct a quality improvement project developing and evaluating a palliative care pathway (PCP) to operationalize the palliative care approach in the regions of Stavanger (350,000 inhabitants) and Bergen (415,000 inhabitants) in Western Norway,

Development of the PCP

In Stavanger, the hospital and municipalities made an agreement on palliative care provision in 2012, describing the respective roles and responsibilities of the hospital departments and municipalities. An advisory board was established to oversee the implementation of the agreement. The advisory board consisted of 10 members from the hospital and the municipalities. From the hospital, the palliative care, surgical, pediatric, and medical departments were represented, in addition to a member from the chaplaincy service. Different municipalities were represented by cancer care coordinators and a general practitioner. The advisory board reported to the cooperation section of the hospital, responsible for cooperation between hospital and community services.

In 2015, this advisory board became the steering group for the interdisciplinary project of developing a PCP. ⁶ The initial work group for the PCP consisted of members from both the hospital and the municipalities, from different professions (palliative care, oncology, and geriatric nurse specialists, a palliative care physician, a social worker, a chaplain, and a physiotherapist). The workgroup reported to the advisory board by a written report twice a year.

The PCP aimed to operationalize the palliative care approach at all stages of the disease trajectory, irrespective of prognosis and diagnosis, ² focusing on identifying patients with palliative care needs (physical, psychological, social, and spiritual needs), goals of care, facilitation of communication, coordination of care, and identification of appropriate interventions and resources for all dimensions of care.^7,8 HCPs with an interest in palliative care, from both the hospital and municipalities, represented the users and were invited to regular seminars to contribute to the development of the PCP. Invitations were sent both to individuals known to the PCP workgroup and via the advisory board, to enable broad participation from municipalities and hospital departments.

The PCP is based on the World Health Organization (WHO) definition of palliative care from 2002, ¹ the Gold Standards Framework, ⁷ and the Supportive and Palliative Care Indicators Tool, ⁹ in addition to multidisciplinary clinical experience. The PCP should be practical for use in a clinical setting and as tool for continuous learning and education. It was developed as a web-based flowchart comprising a digital evidence-based framework for palliative care (Figs. 1 and 2).

FIG. 1.

Outline of the palliative care pathway. ECOG, Performance status scale by Eastern Cooperative Oncology Group; GP, general practitioner; ESAS-r, Edmonton Symptom Assessment System (revised version).

FIG. 2.

Examples of fact sheets in the palliative care pathway.

The PCP is reviewed and updated twice a year by the PCP workgroup, with new members appointed by the advisory board. In 2019, the PCP was adapted for use at Haukeland University Hospital in Bergen. The pathway is available to HCPs through the internal hospital procedure register, also accessible outside of the hospital. In addition, an electronic patient record documentation template called “Palliative Care Assessment Chart” (Fig. 3) was developed to improve the quality of discharge notes for patients and, thus, enhance the interaction between the hospital departments and primary care services.

FIG. 3.

Palliative care assessment chart.

In Stavanger, a family representative was included in 2022 in the group in charge of updating the PCP. In Bergen, a family representative was included on the advisory board for the adaption of the PCP in 2019.

Pilots

Stavanger

The PCP was pilot-tested in Stavanger municipality from September 2017 to January 2018 by Stavanger’s Municipal Palliative Care Team. The PCP was repeatedly presented to multidisciplinary staff from hospital units and municipalities during courses, teaching sessions, and multidisciplinary conferences. Those who had been involved in the development of the care pathway became implementation agents and contributed to the introduction and implementation in their respective areas of work. The palliative care nurse and physician in the municipal palliative care team used fact sheets (Fig. 2) from the PCP to build clinical competence “on-site, on time” in 100 consultations in homecare, and nursing homes, and in collaboration with general practitioners.

The visitor count on each “page” of the PCP was registered from October 2017 to January 2018, showing 2161 visits with 829 different IP addresses on the main page; 62.2% continued to other pages. An electronic questionnaire was distributed via Questback for feedback from HCPs on usability and content with 81 respondents. The replies were summarized and 85% experienced the PCP as easy to use, 83% had found the information they had been looking for, and 73% answered that they would continue to use the care pathway in their work. Participants described the impact at different levels:

“I looked for symptoms and signs in the dying patient, and I found them” (physician)

“Easy to navigate, practical, and useful information” (physiotherapist)

“I will advocate for the PCP on my ward and contribute to implementing it” (nurse)

“(I used the PCP) as a tool for teaching, among other things” (nurse)

Thirty HCPs from Stavanger municipality participated in an evaluation seminar. Key results were that the PCP contributed to increase skills in identifying patients in need of palliative care, assessing palliative care needs, identifying turning points and the end of life, and caring for the dying. The PCP was used for learning how to manage syringe drivers and administrate subcutaneous medications. A search option and easier navigation through all the pages were asked for.

Bergen

The adapted PCP was pilot-tested on two surgical and two pulmonary wards at Haukeland University Hospital in Bergen for 8 weeks in October–December 2020. The PCP was adjusted according to local guidelines and routines, and to the hospital’s electronic quality system, unfortunately necessitating a somewhat more complex layout. Ahead of the piloting weeks, meetings were held between the project manager and local project champions, who provided training and teaching on the wards. The project group met once a week for the first 4 weeks to keep focus and to discuss clinical cases using the PCP. Later meetings had to be canceled owing to COVID-19 restrictions, but the champions followed up on the wards on how to use the PCP “on-site, on time” in clinical situations.

An electronic questionnaire for feedback on usability and contents was distributed via email to 16 respondents. The replies were summarized, and the main findings were that the PCP gave leaders and HCPs access to the same evidence-based framework and provided relevant palliative care documents accessible in one place. The respondents asked for easier access to the framework (web or app). Prioritizing palliative care as a focus area in busy hospital departments was described as challenging, and a need for disease-specific tools was identified.

Sixteen nurses participated in two group interviews. In addition, physicians at the Department of Thoracic Medicine submitted written feedback (owing to COVID-19 restrictions on meetings). A simple descriptive analysis was conducted. The PCP was evaluated as containing relevant information and helping to identify patients in need of palliative care. The layout was perceived as somewhat complicated with too much text. An option to search for specific information and easy access to the definition of palliative care were requested. The palliative care assessment chart (Fig. 3) was well evaluated, as it caused awareness of key aspects and gave structure to discharge notes.

After the pilots, the PCP was approved for implementation. In Bergen, the PCP was included in the hospital quality system. In Stavanger, the PCP was approved by the advisory board in 2018, and in 2020, by the cooperation section and was included in the hospital quality system.

Conclusions/Lessons Learned

A PCP was developed as a digital evidence-based framework for a palliative care approach, structured as a web-based flowchart. The PCP is used by HCPs as a reference or practical manual when attending to patients with palliative care needs. In addition, the PCP is used for educational purposes, at hospital departments, community services, and in pre- and postgraduate education for HCPs. Instructional movies to facilitate the use of the pathway are linked to the left corner of the PCP. Users describe the PCP as providing easy access to relevant information and supporting clinical decision making and dissemination of palliative care skills and knowledge. Thus, the pathway has become a useful tool in building a common language and understanding for palliative care providers in different settings.

A care pathway is usually constructed around a sequence of events and corresponding assessments and interventions. ³ However, the palliative care population is heterogeneous regarding factors such as diagnosis, disease trajectory, functional status, and age, and it proved impossible to create a common care pathway structured along a given trajectory or timeline. The PCP focuses on common features of palliative care, applicable across diagnoses and settings, enabling a rather simple layout with a one-page overview.

An area of improvement identified in the pilots was the lack of electronic communication between levels of the health care system. Unfortunately, the municipal services and hospital services have different electronic patient record systems. The new “Palliative Care Assessment Chart” was constructed to try to overcome this barrier.

The pilot testing confirmed that HCPs require time and support to familiarize themselves with care pathways’ contents and daily use and revealed resistance by some users. An app could probably improve the accessibility and navigation of the PCP. We also realize that more consideration could have been given to the implementation strategy.

The PCP is implemented in the hospitals’ quality plan and e-learning and used as an example of a patient-centered care pathway in a Norwegian Official Report. ⁴ Hopefully, this PCP can serve as a point of departure for developing palliative care pathways in other settings nationally and internationally.