Care Pathways in Palliative Cancer Care, A Systematic Literature Review
Karen Løhre
Supervisors:
Marianne Jensen Hjermstad & Stein Kaasa, Avdeling for Kreftbehandling, Oslo Universitetssykehus
Project Thesis Faculty of Medicine
University of Oslo, February 2022
Care pathways in palliative cancer care, a systematic literature review.
Table of content
ABSTRACT ... 2
1.0INTRODUCTION ... 3
1.1 Cancer treatment ... 3
1.2 Palliative care ... 3
1.3 Patient-centered care ... 3
1.4 Patient-reported outcome measures... 4
1.5 Early integration of palliative care ... 4
1.6 Standardized care pathways... 5
1.7 Implementation and planning... 5
1.8 Care delivery ... 6
1.9 Rationale, overall aim, and research questions ... 7
2.0METHODS ... 7
3.0RESULTS ... 9
3.1 Included studies ... 9
3.2 Level of scientific evidence for the included studies ... 10
3.3 Stage in care trajectory ... 10
3.4 Organizational level ... 11
3.5 Symptoms of interest... 11
3.6 Patient Reported Outcome Measures (PROMs) ... 11
3.7 Implementation of care pathways and training of staff... 12
3.8 Time in pathway ... 12
3.9 Place of death ... 12
3.10 Endpoints of the studies... 13
4.0DISCUSSION ... 13
4.1 Statement of principal findings ... 13
4.2 Appraisal of methods ... 14
4.3 Comparison with previous work ... 15
4.4 Clinical and scientific implications ... 16
4.5 Further work ... 17
5.0CONCLUSIONS ... 18
6.0APPENDIX ... 18
7.0REFERENCES ... 24
Abstract Introduction
Care pathways, often known as standardized care pathways (SCPs), intend to improve quality and reduce variations in healthcare. The overall aim of this review was to study if and how SCPs are used in studies regarding pathways in palliative cancer care.
Methods
A systematic literature search was performed to identify studies on care pathways in palliative cancer care. Inclusion criteria were RCTs and other interventional and observational studies on cancer patients who were included in palliative care pathways, written in English.
Exclusion criteria related to study design were qualitative studies, reviews, surveys, and audits. Population exclusion criteria were mixed populations (not exclusively cancer), and age below 18. A set of research questions were developed to answer the overall aim of this
review. These questions covered a wide range of aspects, including stages in the care trajectory, e.g., early integration of oncology and palliative care or end of life care,
organizational level of care, content of the pathways, symptoms of interest, study outcomes, and level of evidence.
Results
Ten of the 102 potentially eligible studies retrieved were included, with patients recruited from more than 70 institutions, ranging from highly specialized university hospital units to general hospitals. The studies were heterogeneous in several aspects, including study design, patient population, SCPs, and outcome measures. All studies used SCPs. How the SCPs were described and used, varied considerably among the studies. Seven of the included studies described the use of patient-reported outcome measures (PROMs) in their method sections, and altogether thirteen different items were assessed.
Conclusion
The systematic literature review demonstrated that there is considerable heterogeneity when it comes to the use, contents, and patient populations of the SCPs in the included studies. It revealed that implementation of SCPs is challenging. A pre-implementation plan may be beneficial. The review showed large variations in the use of PROMs, indicating a need for standardized PROMs in palliative cancer care SCPs.
1.0 Introduction 1.1 Cancer treatment
Globally, cancer is the second leading cause of death, and is estimated to cause close to 10 million deaths a year (1). According to treatment intention, cancer treatment can be divided into curative, life prolonging, symptom relieving, and end-of-life (EoL) care (2). The most common anticancer treatment modalities are surgery, radiation therapy, and medical treatment. The latter includes chemotherapy, hormone therapy, immunotherapy and other targeted therapies (3). The anticancer treatment has a primarily tumor-directed focus, whereas palliative care represents a patient-centered approach (2). Notably, these two approaches supplement each other.
1.2 Palliative care
Palliative and supportive care are specialized medical care for people living with serious illness, such as advanced cancer (4). The distinction between palliative care and supportive care has been debated. According to the World Health Organization (WHO), palliative care is applicable early in the course of the illness (4). The European Society for Medical Oncology (ESMO) states that supportive care should be available at any stages of the disease, whereas palliative care focuses on the time period when curative treatment no longer is an option (2).
The American Society of Clinical Oncology (ASCO) does not specify a particular time for delivery of either. Both palliative care and supportive care focus on the patient, as well as the family, and aim to prevent and relieve suffering, treatment complications, and to improve the quality of life (QoL). Historically, supportive care focused on the side-effects of cancer treatment, whereas palliative care started out as EoL care. EoL care refers to care for people in the last weeks and days of their life. Whatever the distinctions, the main goal is to help patients with incurable disease obtain peace, comfort, symptom relief and dignity (5, 6).
1.3 Patient-centered care
In patient-centered care, the patient values and preferences should guide clinical decision- making in line with clinical guidelines (7-9). Patient-centered care should be collaborative, coordinated and accessible (10). The right care to the individual patient should be provided at the right time and in the right place. The use of multidisciplinary teams enables systematic collaboration across levels of care, and may thus promote optimal patient-centered care (2).
Also, in order to provide the best cancer care, effective public health strategies comprising community and home-based care is of paramount importance (1).
The patient perspective and patient involvement are important elements throughout the entire cancer care trajectory (2). Shared decision-making is also essential in every part of the care trajectory, but is accentuated when the disease progresses, and the discontinuation of tumor- directed treatment should be discussed (11). Anticancer treatment, including its potential adverse effects, may not always be the most beneficial for each individual patient. Both patients and their families need support facing challenges and problems related to difficult life situations. It is mandatory that both the oncologist and palliative care specialist take the patients and their family’s needs and wishes under consideration when presenting multiple treatment options. This is especially relevant when tumor-directed treatment and life- prolonging treatment with marginal benefits can be offered. In anticancer treatment,
particularly so when given with life-prolonging intent, patients’ and caregivers’ preferences, understanding of prognosis, and stop criteria for treatment are essential (12).
1.4 Patient-reported outcome measures
Patient-reported outcome measures (PROMs) are an umbrella term covering assessment tools used to measure the patient perspective on physical and psychological symptoms, including symptom severity, symptom impact, psychological distress, and treatment side effects (13).
Use of PROMs in all clinical care should be highly encouraged as routine use has shown to be associated with better QoL, fewer hospitalizations, and even increased survival compared with usual care (14).
1.5 Early integration of palliative care
Traditionally, palliative care is applied late in the disease trajectory, and often too late for patients to benefit the most from this approach. However, several descriptive and randomized studies have shown that an early integration of palliative care into oncology improves the symptom treatment, quality of life (QoL), better understanding of prognosis and treatment intention, satisfaction with care for both patients and their family, improves the survival, and the quality of EoL care (14-16). According to WHO, early delivery of palliative care
integrated into oncology reduces unnecessary hospital admissions and the use of health care services (4).
1.6 Standardized care pathways
The European Pathway Association (EPA) defines a care pathway as “a complex intervention of the mutual decision-making and organization of care processes for a well-defined group of patients during a well-defined period” (17). SCPs are used to organize, plan, and execute healthcare programs across a variety of disciplines (18). This may include different groups of cancer patients, such as colon cancer, breast cancer, and/or special conditions, or
complications such as medulla compression. The Lancet Oncology Commission on
integration of oncology and palliative care described different models for the integration of palliative care into oncology (2). An essential component was the use of standardized care pathways (SCP) (2).
EPA describes the aim of care pathways as “to enhance the quality of care across the
continuum by improving risk-adjusted patient outcomes, promoting patient safety, increasing patient satisfaction, and optimizing the use of resources” (17). The purpose of SCPs in palliative cancer care is to improve clinical practice in a systematic and evidence-based way.
A logical and coherent SCP may promote the quality of care, be a useful tool for planning, organizing levels of care, implementing new research into practice, and delineate a
predictable care trajectory for patients and families (19).
1.7 Implementation and planning
When new research results are available, their implementation and training of staff has the intention to change the behavior of healthcare professionals and improve routine practice.
Also, when introducing an SCP, an active implementation strategy is important. The implementation strategy must be multi-faceted as it concerns different features such as the implementation process, different outcomes including cost and sustainability, and results of the implementation. In addition, implementation includes the assessment of new research’s relevance, the suitability, and the incorporation of an intervention into clinical practice (20).
Making changes in SCPs is often among the most challenging part of the process, and may benefit from a good pre-implementation strategy.
The term “end-of-life goals” can be defined as the patients’ preferences and decisions made about specific treatments, the intensity of care, and even the planning of future care needs.
This process is also known as advance care planning (ACP) (21). Understanding an
individual’s goals of care allows clinicians to align the care provided with the wishes of the
patients and their families (21). ACP helps to ensure that patients receive care that is
consistent with their preferences, in addition to providing guidance to the family and reduce their decisional burden. Additionally, some studies suggested that ACP reduces moral distress among health care providers (21). ACP may ease the communication between patient, family, and clinicians, facilitating a shared decision-making process (22, 23). Furthermore, some studies demonstrated that ACP reduces EoL care costs without increasing mortality (23, 24).
1.8 Care delivery
Palliative cancer care can be provided at hospital specialized palliative care inpatient or outpatient units (SPCU), in nursing homes, hospices, or at home. Patients with difficulties related to symptom control, medical needs that cannot be optimally managed in other settings, distressed families in need of a higher level of emotional or practical support, or patients in need for transfer out of critical care settings may be candidates for hospital care. An SPCU is designed to meet the needs of patients with a high burden of symptoms, and their families (25).
Nursing home patients typically have multiple comorbid conditions, impaired physical function, cognitive impairment, and a large symptom burden. It has been demonstrated that palliative care teams or consultants providing palliative care at nursing homes led to lower rates of hospitalization, burdensome transports between home and hospitals, as well as
reduced symptom burden (26). These palliative care consultations had most impact when they occurred early in the disease trajectory, illustrating the importance of integrating palliative care early into oncology (26). While nursing homes provide care for a wide range of patients, hospices exclusively deliver palliative care when curative treatment is no longer the goal of care (27).
Home palliative care is associated with reduced symptom burden, and increased patient and caregiver satisfaction (28). The RCT by Jordhøy et al showed back in 2000 that patients with terminal cancer receiving palliative home care services, were more likely to die at home (29).
These results have been supported later, in addition, the patients were less likely to be hospitalized during the last two months of their lives, and the hospital stays were fewer and shorter (30). Moreover, adults receiving home-based palliative care are more likely to have an advance care directive and discussions about goals of care (31).
1.9 Rationale, overall aim, and research questions
The cancer care trajectory can be divided into different organizational stages, such as early integration of oncology and palliative care, standard palliative care, or EoL care. Clinical care pathways may be divided by, and delivered at different levels of care, such as primary,
secondary, or tertiary care. Care pathways may potentially improve quality of care for palliative cancer patients, being hospitalized, in community care, or at home (18). Given the central role of SCPs when integrating palliative care into oncology, as described by the Lancet Oncology Commission, it was considered relevant to investigate the use of SCPs in studies on this topic (2). The overall aim of this review was to study if and how SCPs are described and used in studies regarding care pathways in palliative cancer care. The following research questions were addressed:
1. Which stage of the care trajectory does the SCP describe?
2. On which organizational level of care is the SCP used?
3. What is the content of the SCP?
4. What are the symptoms of interest in the SCP?
5. What are the outcomes of the SCP?
6. How are the outcomes measured?
7. What is the level of evidence of the studies?
2.0 Methods
In January 2021, a systematic literature search of PubMed was performed for studies on care pathways in palliative cancer care. There were no limitations on time periods. In addition, the reference lists of selected articles of interest were searched. Inclusion criteria were
randomized controlled trials (RCT), and other interventional and observational studies on cancer patients following a palliative care pathway. Only studies in the English language were included. Exclusion criteria were qualitative studies, reviews, surveys, and audits. Population exclusion criteria were mixed populations with cancer patients and other patients, and age below 18. The search string, that was conducted together with a trained librarian, and a table of inclusion and exclusion criteria can be found in Appendix 1.
The search resulted in 102 potentially eligible studies. Eight studies were excluded due to language. Ninety-four studies were retained for screening. Eighty-nine studies were excluded from further reading: Thirty-nine due to study design, three did not describe pathways, 39 did
not describe palliative pathways, one was not exclusively considering palliative pathways, four did not include cancer patients, and two studies were performed in mixed patient populations. After the screening process, five studies remained, and five additional studies were included after a hand search (Figure 1). A total of ten studies were included in the analysis (Table 1).
Figure 1. Flow diagram of studies included.
The EPA definition of a care pathway, as described in the introduction, is the basis for the evaluation of the published studies included in the current review. In order to address the research questions, tables of different aspects of interest were created to structure the information extracted from the included studies (Tables 3 & 4, appendix 2). Some of the features in the tables considered details related to study design such as purpose, patient population, nationality, endpoints, and conclusions. Other variables had the purpose of showing the variation of the patient population and the stage of care trajectory, including whether the disease was metastatic or locally advanced, or if it was curative, and if the patients included were inpatients or outpatients. The level of organization of the respective SCPs was also denoted, reflected by the type of institution where the study took place, and if it did include a specialized palliative care unit. To withdraw the different contents of the SCPs, the tables included features such as definition and description of care pathway, PROMs used, time in pathway, anticancer treatment and palliative care simultaneously, time between first medical oncology clinic visit to palliative care referral, and place of death.
102 potentially eligible studies:
Identified through database searching 8 studies excluded:
Non-English
94 studies retained for screening:
89 studies excluded:
Study design: 39 Not pathways: 3
Non-palliative pathway: 39 Not exclusively palliative pathway:1
Non-cancer patients: 4 Mixed patient populations:2 Study group under 50 patients: 1 5 studies included after screening
Additional studies:
Identified from a hand search or reference lists Included 5
10 studies included in the analysis
3.0 Results
3.1 Included studies
The included studies are presented in Table 1. RCTs are listed first in the darkest color, followed by the single clinical trial without randomization, and with the lightest color the observational studies. The same goes for table 3 & 4 in the appendix 2. The studies are, within their category, alphabetically listed by authors.
Table 1. Studies included.
PMID Title Study
nr
Authors Year Country Study design Prospective/
retrospective 24139708 Liverpool Care Pathway for patients
with cancer in hospital: a cluster randomized trial.
1 Costantini
M et al
2014 Italy RCT
-Cluster randomized
Prospective
29543567 Pain Management in Cancer Center Inpatients: A Cluster Randomized Trial to Evaluate a Systematic Integrated Approach-The Edinburgh Pain Assessment and Management Tool
2 Fallon M et al
2018 UK RCT
-Cluster randomized
Prospective
28494643 Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer:
The Danish Palliative Care Trial
3 Groenvold
M et al
2017 Denmark RCT Prospective
20818875 Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer
4 Temel JS et al
2010 USA RCT Prospective
29402701 Effect of early and systematic integration of palliative care in patients with advanced cancer: a randomized controlled trial
5 Vanbutsele
G et al
2018 Belgium RCT Prospective
24559581 Early palliative care for patients with advanced cancer:
a cluster-randomized controlled trial
6 Zimmerman
n C et al
2014 Canada RCT
-Cluster randomized
Prospective
31123870 An in-hospital clinical care pathway with integrated decision support for cancer pain management reduced pain intensity and needs for hospital stay.
7 Løhre ET et al
2020 Norway Interventional uncontrolled trial
Prospective
31704278 Outpatient palliative care and thoracic medical oncology: Referral criteria and clinical care pathways.
8 Caraceni A
et al
2020 Italy Observational study
Retrospective
29247265 End-of-life care pathway of head and neck cancer patients: single- institution experience.
9 Heinonen T
et al
2018 Finland Observational study
Retrospective
24644210 Variations in specialist palliative care referrals: findings from a population-based patient cohort of acute myeloid leukemia, diffuse large B-cell
lymphoma and myeloma.
10 Howell DA
et al
2015 UK Observational
study
Retrospective
3.2 Level of scientific evidence for the included studies
A total of ten studies were included in this review. Six of the studies were randomized controlled trials, of which three were cluster randomized. One was an interventional trial without control groups, the remaining three were observational studies. Seven studies were prospective, three were retrospective. Five of the studies were single center studies, and five were multicenter studies. The number of patients included varied from 52 to 1921, with a mean number of 399 (figure 2). Study number two, Fallon M et al (32), contributes to 44% of the total number of patients that are included in all ten studies, combined.
Figure 2. Number of patients in the studies. Study number 2, with 1921 patients, contributed to 44% of the total patient population in this review.
3.3 Stage in care trajectory
Six studies addressed early integration of oncology and palliative care, two studies were looking at EoL care, and the remaining two were in-hospital studies that addressed symptoms of interest.
The results from care pathways with focus on early integration of oncology into palliative care varied widely. Vanbutsele G et al found that early integration increases the QoL of patients with advanced cancer (33). Zimmermann C et al showed that the difference in QoL was non-significant, and Groenvold M et al did not observe beneficial nor harmful effects of early specialist palliative care, but note that important beneficial effects cannot be excluded (16, 34). However, Temel JS et al showed that early palliative care led to significant
improvements in both QoL and mood, as well as less aggressive care at the EoL, and longer
0 500 1000 1500 2000 2500
1 2 3 4 5 6 7 8 9 10
Number of patients
Study number
survival time than patients in the control (15). Howell DA et al showed that almost 50% of the patients had one referral to specialist palliative care. The referral was associated with place of death, those referred were less likely to die in-hospital (35). Caraceni A et al suggested using performance status and disease stage as screening criteria for referral to palliative care in patients with thoracic malignancies (36).
Out of the two studies investigating care pathways focusing on EoL care, one was looking at the Liverpool Care Pathway in the Italian context (LCP-I). Costantini et al found that LCP-I did not provide better quality of EoL care than standard health care practice (37). Heinonen T et al investigated the role of a specialized palliative-care pathway in head and neck cancer patients, and showed that emergency unit visits and hospitalization are common among head and neck cancer patients in their palliative period, reflecting the need for early integrated palliative care for this patient group. They also found that collaboration with a specialized palliative home-care team seem to increase EoL care at home (38).
3.4 Organizational level
Four studies were conducted at university hospitals (11, 33, 35, 38), one including both university hospitals and general hospitals (37), two in general hospitals (15, 32), three in specialized cancer centers (16, 34, 35), and one within an outpatient clinic (36). In total there were 72 different institutions included.
3.5 Symptoms of interest
Two of the studies were addressing systematized pain management. Fallon M et al suggest that a systematic integrated approach improves pain outcomes for inpatients in cancer centers without increasing opioid adverse effects (32). Løhre ET et al showed that pain intensity, as well as hospital length of stay, was reduced when using a systematic PROM describing patients’ pain intensity, with physicians using evidence-based decision support when treating the patient’s pain (11).
3.6 Patient Reported Outcome Measures (PROMs)
Seven of the studies used PROMs as outcome measures. European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire Core 30 items (EORTC QLQ C30) was included in two of the studies (33, 34).McGill Quality of Life Questionnaire (MQOL)
was included in one study (33). Zimmermann C et al used five different PROMs; Functional Assessment of Chronic Illness Therapy – Spiritual well-being scale (FACIT-Sp), Quality of life at the end of life (QUAL-E), Edmonton Symptom Assessment System (ESAS), Family satisfaction with end-of-life Care (FAMCARE-p16), and Cancer Rehabilitation Evaluation System – Medical Interaction Subscale (CARES-MIS) (16). Temel JS used four different PROMs; Functional Assessment of Cancer Therapy – Lung (FACT-L), Eastern Cooperative Oncology Group performance status (ECOG), Hospital Anxiety and Depression Scale (HADS), 9 item Patient Health Questionnaires assessing depression (PHQ-9) (15). Løhre ET et al used Numerical Rating Scales 0-10 (NRS) for pain intensity, treatment satisfaction, and pain flares which needed extra pain medication (11). Fallon M et al used pain intensity scale (32).
3.7 Implementation of care pathways and training of staff
Out of the ten included studies, six described the implementation process of the care pathway.
In two studies it was not described, and in two it was not relevant as they were retrospective observational studies. An implementation program was developed in three of the six studies (11, 33, 37). Groenvold M et al did not alter the care pathway that was previously
implemented, but the pathway was initiated at an earlier stage (34). The remaining three studies did not describe in detail their implementation plan (32, 36, 39). Four studies described training of staff prior to implementation of the pathway (32, 33, 37, 39), and four studies used physicians and nurses from the existing palliative team in the trial (11, 15, 34, 36).
3.8 Time in pathway
For the RCTs and the interventional trial without control group the duration of time in the pathways ranged from a mean of 10.6 days (11) to 1 year (32). The observational follow-up studies had a study duration from one year to five years (35, 36, 38).
3.9 Place of death
Three of the ten studies described the place of death for the patients. The place of death was reported for a total of 445 patients. Two hundred and ninety-two of the patients died in hospitals. Although some studies differed between general hospitals and university hospitals,
they were merged in this review. Eighty-four patients died at home, relative to 50 at hospices, and 19 at nursing homes.
3.10 Endpoints of the studies
In the two studies addressing pain management, the primary endpoints were change in pain intensity for both (11, 32). Four of the studies had a change in QoL as endpoints (15, 16, 33, 34). Costantini M et al evaluated the perceived quality of care, from a family member perspective (37). The three observational studies had multiple endpoints. Heinonen T et al assessed patient demographics, tumor characteristics, cancer treatment, data on visits to the palliative center or emergency department, cause, and place of death (38). Howell DA et al considered to what degree hematological cancer patients were referred to specialized
palliative care (35). Caraceni A et al examined reasons for referral to palliative care outpatient clinics, including severe physical symptoms, lower performance status, and stage of disease in the patient population (36).
4.0 Discussion
4.1 Statement of principal findings
The current review on pathways in palliative cancer care included ten studies with a total of 3988 cancer patients recruited from more than 70 institutions, ranging from highly specialized university hospital units to general hospitals. The studies were heterogeneous in several features, including study design, patient population, SCPs, and outcome measures. Seven out of ten studies were prospective trials, both randomized controlled and uncontrolled. The remaining three were observational retrospective studies. The large heterogeneity of the included studies posed a challenge in extracting principal findings across studies.
Nevertheless, some aspects could be assessed universally across all the studies.
With respect to if SCPs were used, it was revealed that all studies used SCPs, highlighting their importance and central role. The question of how the SCPs were used and related to this, their content, varied considerably among the studies. The current review identified that there are no established protocols on how to report the use of SCPs, and no standard SCP is uniformly used in this field of research.
Six out of ten studies addressed early integration of oncology and palliative care, aiming to examine whether early integration had beneficial effects for the patients. Out of the four RCTs in this category, two supported that early integration improved patient QoL. Two studies addressed EoL care, one demonstrating no benefits of the Liverpool Care Pathway compared to standard care, and the other investigating emergency hospital admissions for head and neck cancer patients. The remaining two addressed pain as a symptom of interest, both showing that a systematic approach reduced pain intensity. An implementation strategy was described in seven out of ten studies. Three studies described a pre-trial implementation plan, and only two a beneficial outcome from the implementation process. Seven studies used PROMs and altogether thirteen different items were assessed.
4.2 Appraisal of methods
A set of research questions were composed to answer the overall aim of this review. The research questions were developed to cover a wide range of aspects, including stage of care trajectory, organizational level of care, content, symptoms of interest, outcomes, and level of evidence. In addition, a table of more profound details were established. The relevance of the research questions varied, and several of the research questions were not applicable for the included studies on a group level. On the other hand, the research questions demonstrated the heterogeneity of the included studies, with varying settings, populations, and SCPs.
A potential source of error in observational studies is confounding bias. Thirty percent of the included studies had a retrospective observational design. Retrospective studies may indicate non-causal correlations, like the relationship between referral and place of death (35). Studies with statistically significant data and sensational findings are more likely to be published and referenced, a phenomenon known as publication bias (40). Thus, consistent results across several studies are not necessarily proofs of causal relationships.
This systematic review utilized a set of explicit research questions, with distinct inclusion and exclusion criteria, included in a detailed table. It may be argued that this facilitates results with a good internal validity as well as reliability (41).
4.3 Comparison with previous work
Implementation of new research may be challenging (42). This might be related to an inherent resistance towards altering established routines and systems (42). Nevertheless, applying new routines based on research results is the ultimate goal of the implementation process. To optimize integration and implementation, the importance of reducing professional and
personal barriers, developing pre-trial strategies, and having a patient-centered focus must be emphasized (42). In 70% of the studies included in this review, the implementation strategy was described, reflecting the important role of implementation of new research. Even though seven studies had an implementation program, only three described the pre-trial
implementation process. Two out of the three studies describing a pre-implementation plan showed a beneficial study outcome. It might be argued that this can be, at least partially, due to the use of pre-implementation plans. These findings could suggest that several studies may benefit from such plans.
Systematic symptom assessment is an important component of patient-centered care. Studies published over the past few years have shown a positive effect of systematic symptom assessment on patients’ quality of life, and possibly also survival (2). However, despite the evidence of the benefits of systematic symptom assessment, implementing such assessments in routine care has been slow (2). This finding is in line with the implementation challenges demonstrated in the current review.
Previous research has shown that the preferred place of dying for terminally ill patients is at home (29). Almost two thirds of the patients reviewed in this thesis died in hospitals, and only close to one fifth of the patients died at home. This finding represents an interesting
observation. Previous research has shown that the preferred place of dying may vary, depending on factors such as when in the trajectory the patient is asked, and who asks the question (43). The large proportion of hospital deaths in the current review might merely represent a selection bias due to the population at study.
When compared to usual care, hospital-based specialized palliative care may slightly improve the patients QoL, symptom burden, and their satisfaction with care. Moreover, it may also increase the patients’ chances of dying at home, or at their preferred place of death (44). The reviewed studies were conducted at different levels of organization, with different levels of resources and abilities. Specialized palliative care provided in tertiary hospitals represents
advanced care and medicine, whereas obtaining the same quality of care at home may be more challenging. Still, hospital-based specialized palliative care may ultimately contribute to more patients dying at home.
Both clinicians and researchers have acknowledged that early integration of oncology and palliative care improves the QoL of patients with advanced cancer (33). In this review, 60%
of the studies addressed integration. The focus of these studies varied, but the overall intent was to examine whether early integration has any beneficial effects on the patients. Of the four RCTs in this category, two supported this claim (15, 33), one could not show beneficial nor harmful effects (34), while the last did not find statistically significant results for
increased QoL (16).
The benefit of using PROMs include improved communication between health care providers and patients, raised awareness and better management of symptoms, extended survival time, advising treatment decisions, and informing service delivery (42). All the included trials described the use of PROMs in their method sections. This demonstrates the importance of PROMs for assessing patient-related aspects, family-related issues, and QoL. Thirteen different PROMs were used in the seven different studies, posing an obvious challenge in comparing outcomes across studies. A possible solution would be using standardized PROMs when studying palliative cancer care and related SCPs, also making interstudy comparisons more convenient.
4.4 Clinical and scientific implications
Well-founded changes in clinical practice should rest on well-documented evidence based on all available and relevant research on the topic. Systematic literature reviews and meta- analyses attempt to summarize this knowledge. This review highlighted some key findings in SCPs in palliative care, such as the importance of a pre-trial implementation plan, early integration of oncology and palliative care, and the need for standardized PROMs.
It may be argued that the absence of established protocols on how to report the use of SCPs represent shortcomings of the existing studies. A standardized method for describing and reporting the use and content of an SCP would enable study comparisons, as standardized methods in research design and reporting of results contribute to the same goal. On the other
hand, the complexity of palliative care may represent a practical barrier for developing a common pathway suitable for all palliative care services.
4.5 Further work
Recently, there has been an increasing agreement that palliative care should be implemented at an earlier stage in cancer care. This fact also is reflected in the current WHO definition of palliative care, which encompasses patients in the early phase of life-threatening illness (4).
There are few, if any, studies that can show sustainable integration beyond study duration. In line with this, there is a need for more research on how to efficiently implement SCPs in palliative care at an earlier stage in different clinical settings.
Acquiring good quality palliative care in different clinical settings demands various strategies.
There is a need for streamlining the interaction between different organizational levels of palliative care. This process should reflect the perspectives and interests of both the patients and their families. A future focus may be to build palliative care services that address all the needs of cancer patients (2).
The ultimate purpose for an SCP is to benefit the patients by meeting their needs in a timely manner. This depends not only on the SCP itself, but also on how successful the
implementation process is. For this reason, an SCP that in theory would be expected to result in best patient care, may in fact turn out to be unsatisfactory due to complicated pathways, challenges with the implementation process, and low adherence to the pathway by health care providers. Thus, identifying the critical components of an SCP to ensure the preferred result, is valuable.
Palliative care patients are diverse in backgrounds, perspectives, and beliefs. Hence, the preferences on the content of a care pathway are diverging. To some, this may entail a wish of dying at home, whereas others want to die in institutions. This underlines the need for
flexible, individualized SCPs that can accommodate each patients´ perspective and wishes.
The Lancet Oncology Commission on integration of oncology and palliative care describes the use of SCPs as an essential component of the integration of palliative care into oncology (2). According to the European Pathway Association (EPA) the purpose of SCPs is to improve clinical practice in a systematic and evidence-based way (17). With a more
streamlined and well-developed SCP yet flexible, the same treatment and care can be given in both hospitals and at home, and the patients and their family could increase their QoL at end of life.
5.0 Conclusions
The systematic literature review included results from ten studies, which to different degrees described standardized care pathways in palliative care, their use, and outcomes. The overall impression is that there are patient benefits related to the use of SCPs. It also revealed that there is a large variation in PROMs used in this field of research, suggesting that standardized PROMs may be advantageous and ease the process of comparing outcomes. However, the review demonstrated challenges in implementing standardized pathways, but found that the use of pre-implementation plans may be beneficial.
6.0 Appendix
Appendix 1. Search string and inclusion and exclusion criteria.
Search string.
Cancer AND care pathways AND palliative care:
("Medical Oncology"[Mesh] OR "Neoplasms"[Mesh] OR cancer[Title] OR cancers[Title] OR neoplas*[Title] OR oncolog*[Title] OR malign*[Title] OR metastas*[Title] OR
metastat*[Title] OR tumor*[Title] OR tumour*[Title] OR adenocarcinom*[Title] OR carcinom*[Title]) AND (palliative care OR palliative OR Palliation OR end-of-life care) AND (Patient Care Bundles[Mesh] OR "Critical Pathways"[Mesh] OR care pathway[Title] OR care pathways[Title] OR clinical pathway[Title] OR clinical
pathways[Title] OR cancer pathway[Title] OR cancer pathways[Title] OR care bundle[Title]
OR care bundles[Title])
Table 2. Inclusion and exclusion criteria.
Selection criteria Inclusion criteria Exclusion criteria
Language English Non-English
Study design RCTs, other trials, cohort studies, observational studies
Case studies, case reports, surveys, qualitative studies, narrative reviews, cross-sectional studies, pilot studies, audits, chart review, comments, editorials, clinical opinions, expert opinions
Population Adult cancer patients. N>50 Non-cancer patients, children under the age of 18, mixed populations Type of pathway Specifically described as a
palliative care pathway
Non-palliative care pathways
Appendix 2. Tables 3 & 4 with the different aspects interest of the included studies.
Table 3. Results study number 1-6.
Study number
& Authors
1, Costantini M et al (2014)
2, Fallon M et al (2018)
3, Groenvold M et al (2017)
4, Temel JS et al (2010)
5, Vanbutsele G et al (2018)
6,
Zimmermann C et al (2014) Purpose Assessment of
effectiveness of Liverpool Care Pathway-Italy in improving the quality of EoL care for cancer patients. The targets of the intervention were the ward professionals.
Comparing the effect of adding a clinician- delivered bedside pain assessment and management tool to usual care versus usual care alone on pain
outcomes.
To investigate the effect of early specialist palliative care among
advanced cancer patients
identified in oncology departments.
Examine the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end-of-life care among
ambulatory patients with newly diagnosed disease.
Examine whether early and systematic integration of palliative care alongside standard psychosocial oncological care provides added benefit compared with usual care.
Assessment of the effect of early palliative care in patients with advanced cancer on several aspects of quality of life.
Patient population
Cancer patients Cancer patients Cancer patients Cancer patients Cancer patients Cancer patients Number of
patients
Total: 308 Intervention group: 147 Control group:161
Total: 1921 Intervention group: 993 Control group:928
Total:297 Intervention group: 145 Control group:
152
Total: 151 Intervention group: 77 Control Group:
74
Total: 186 Intervention group:92 Control group:94
Total: 461 Intervention group: 228 Control group:
233 Metastatic/loca
lly
advanced/curat ive disease
Advanced cancer
No active disease, local disease, locally advanced &
metastatic
Advanced cancer
Metastatic cancer
Advanced cancer
Advanced cancer
Inpatients/
outpatients
Inpatients Inpatients Both Outpatients Both Both
Integrated oncology and palliative care
Not relevant in this study
Not relevant in this study
Yes Yes Yes Yes
Institution 16 wards.
1 university hospital and 15 general hospitals
19 regional cancer centers
6 specialized palliative care (SPC) centers
General hospital University hospital
24 medical oncology clinics
Single/
multicenter
Multicenter Multicenter Multicenter Single center Single center Multicenter Specialized
palliative care unit (SPCU)
Yes No Yes Outpatient
palliative care unit
Outpatients, but specialized palliative care professionals
Yes
National/
international
National National National National National National
Definition of care pathway
End-of-life care Systematic pain management
Early integration of palliative and oncologic care
Early integration of palliative care and oncology
Early Integration of palliative and oncologic care
Early integration of palliative and oncologic care Description of
the pathway
Liverpool Care Pathway – Italy (LCP-I).
Edinburgh Pain Assessment and management tool (EPAT).
Early SPC – following European Association for Palliative Care White Paper, the WHO
guidelines, national and local guidelines.
Monthly follow- up at the outpatient clinic until death.
Guidelines for the visit were adapted from the National Consensus Project for quality
Palliative Care.
Monthly follow- up with a specialized palliative care nurse, and physician visit after referral by the nurse. The consultations focused on illness
understanding, symptom burden, psychological and spiritual coping, and medical decision making.
Monthly follow- up in the oncology palliative care clinic consisting of assessment of symptoms, psychological distress, social support, and home services..
PROMs Quality of care, in the last week of life in the wards, from the perspective from the family members, in a toolkit scale developed for this study.
Pain intensity scale
EORTC QLQ- C301
FACT-L2, ECOG3, HADS, PHQ-94
EORTC QLQ C305, MQOL6
FACIT-Sp7, QUAL-E8, ESAS9, FAMCARE- p1610, CARES- MIS11
Time in pathway
9 months; 3 months before intervention, and 6 months after.
Each cancer center 1 year
8 weeks 12 weeks Within 12
weeks from diagnosis until death. Measures done at week 18, 24 and each 6th week until death.
4 months
Implementatio n of care pathway
Yes, it was developed an implementation program.
Yes Yes, but “early
SPC” were the same as “usual SPC” initiated
Not described Yes, an implementation plan was included in the
Not described
at an earlier time.
intervention procedure.
Training of staff
Yes, an education program was implemented.
Yes, brief 1 hour.
Used already implemented care.
Physicians and nurses from the existing palliative team were used in the trial.
Yes, the oncologist team trained the palliative care nurses and physicians, doing the intervention, in early delivery of palliative care.
Not described
Endpoint Quality of care, in the last week of life in the wards, from the perspective from the family members, in a toolkit scale developed for this study.
Primary: A change in pain intensity from admission to 3-5 days after admission.
Secondary:
quality of analgesic prescribing and opioid-related adverse effects.
A change in each patient’s primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow- up. Secondary outcomes were change in the seven QLQ-C30 scales and survival.
A change in quality of life at 12 weeks.
A change in global health status/quality of life from baseline to 12 weeks.
A change in quality of life, measured by different quality of life- scores, at 3 and 4 months.
Anticancer treatment and palliative care simultaneously
No Not relevant in
this study
Yes Yes Yes, in the
intervention group
Yes
Time between first medical oncology clinic visit to
palliative care referral
Not relevant in this study
Not relevant in this study
Not relevant in this study
Not relevant in this study
Not relevant in this study
Not relevant in this study
Place of death Not relevant in this study
Not relevant in this study
Not relevant in this study
Not relevant in this study
Not relevant in this study
Not relevant in this study Conclusion LCP-I does not
provide more quality of EoL care than standard health care practice.
A systematic integrated approach improves pain outcomes for inpatients in cancer centers without increasing opioid adverse effects.
The authors did not observe beneficial nor harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.
Early palliative care led to significant improvements in both quality of life and mood, less aggressive care at the end of life, and longer survival.
Early and systematic integration of palliative care in oncological care increases the quality of life of patients with advanced cancer.
The difference in QoL was non-significant at primary endpoint, but the trial did show some promising results on early integration of oncology and palliative care.
Abbreviations:
1 EORTC QLQ-C30 - European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire, 2 FACT-L - Functional assessment of cancer therapy – lung, 3 ECOG - Eastern Cooperative Oncology Group performance status, 4 HADS - Hospital anxiety and depression scale, 5 PHQ-9 - 9 item patient health questionnaires, 6 EORTC QLQ C30 - European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire Core 30 items, 7 MQOL McGill Quality of Life Questionnaire, 8 FACIT-Sp Functional assessment of chronic illness therapy – Spiritual well-being scale, 9 QUAL-E - Quality of life at the end of life, 10 ESAS – Edmonton Symptom Assessment System,11 FAMCARE-p16 - Family satisfaction with end-of-life care, 12 CARES-MIS - Cancer rehabilitation evaluation system – medical interaction subscale.
Table 4. Results study number 7 – 10.
Study number
& authors
7, Løhre ET et al (2020) 8, Caraceni A et al (2020)
9, Heinonen T et al (2018) 10, Howell DA et al (2015)
Purpose It was hypothesized a significant improvement in pain control if patients systematically registered PROMs and if the physicians used an evidence-based decision support.
Identify timing and factors associated to palliative care referral in patients with thoracic malignancies and describing their clinical care pathway.
Evaluate the role of a specialized palliative-care pathway of head and neck cancer (HNC) patients.
Develop and implement a methodology for
capturing complete hematological malignancy pathway data, and use it to identify variations in specialist palliative care referrals.
Patient population
Cancer patients Cancer patients Cancer patients Cancer patients
Number of patients
Total: 52 Total: 229 Total: 60 Total: 323
Metastatic/local ly
advanced/curat ive disease
Metastatic cancer Curative (stage I):4 Locally advanced (stage II-III):79
Metastatic (stage IV):
146
Locally advanced and metastatic cancer
Hematological malignancies
Inpatients/
outpatients
Inpatients Outpatients Inpatients Both
Integrated oncology and palliative care
No 80/98 patients referred to
palliative care
No No
Institution University hospital Outpatient Clinic at the national cancer institute (Hospital)
University hospital 2 university hospitals
Single/
multicenter
Single center Single center Single center Multicenter
Specialized palliative care unit (SPCU)
Yes Yes Yes Yes
National/
international
National National National National
Definition of care pathway
Pain management in a palliative care unit
Early Integration of palliative and oncologic care
End-of-life care Early Integration of palliative and oncologic care
Description of the pathway
Physician-directed decision support using PROMs about pain intensity, the satisfaction of treatment and pain medication.
Retrospective monitoring of the clinical records of the thoracic medical outpatient clinic and palliative care outpatient clinic. Description and timing of POC referral, to study factors associated to referral and describe elements of the clinical pathway.
All patients with non- curable HNC are systematically referred to specialized palliative care.
The PC-team is responsible for the coordination of care according to a regional care pathway.
Collection of pathway data, including referrals to specialist palliative care, clinical
presentation, diagnosis, treatment, response, and place of death.
PROMS Numeric rating scale 0-10 (NRS) for pain intensity, treatment satisfaction, and pain flares which needed extra pain medication.
Not relevant in this study Not relevant in this study Not relevant in this study
Time in pathway
From admission to the palliative care unit until discharge. Mean length of stay 10,6 days.
2 years follow up study 12 months study period or until death. 3 months median survival time after referral to palliative care.
Minimum 2 years and maximum 5 years follow- up study.