Integrated palliative care visits of patients with incurable cancer in Tampere University Hospital 2018–2021—a retrospective study
Original Article | Palliative Medicine and Palliative Care for Incurable Cancer

Integrated palliative care visits of patients with incurable cancer in Tampere University Hospital 2018–2021—a retrospective study

Eliisa Jaakkola1, Reetta P. Piili1,2, Juho T. Lehto1,2, Elina Tolvanen1,2

1Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland; 2Palliative Care Centre, Tampere University Hospital, Tampere, Finland

Contributions: (I) Conception and design: All authors; (II) Administrative support: JT Lehto, RP Piili, E Tolvanen; (III) Provision of study materials or patients: None; (IV) Collection and assembly of data: E Jaakkola, E Tolvanen; (V) Data analysis and assembly of data: All authors; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.

Correspondence to: Eliisa Jaakkola, MS. Faculty of Medicine and Health Technology, Tampere University, Arvo Ylpön katu 34, 33520 Tampere, Finland. Email: eliisa.jaakkola@tuni.fi.

Background: Integration of palliative care has been shown to be beneficial and is therefore recommended. However, the specific methods for arranging such care remain unclear. Systematic referral and regular visits with a multi-professional palliative care team have appeared most beneficial. This study aimed to study how integrated palliative care is currently carried out in relation to which patients are referred to an integrated visit and what occurs during the visit, along with lifespan after the first integrated visit.

Methods: A retrospective chart review of all patients with an incurable cancer receiving integrated palliative care with ongoing oncologic therapy, who were treated in Tampere University Hospital, Finland, between January 1, 2018 and June 30, 2021.

Results: Altogether 207 patients were referred to an integrated palliative care visit, which covers 4% of the incurable cancer patients in the department of oncology at the same time. The most common reasons for referral were symptom burden and limited anti-cancer treatment possibilities. The need for advance care planning was seldom identified. During the first year after the integrated visit, 99 (48%) patients died. Approximately one-third of the patients received anti-cancer treatment in the last month of their life.

Conclusions: Based on the results of the study, the need for palliative care might be unmet, since so few patients are referred to integrated palliative care visits. Emphasis should be placed on identification of palliative care needs and advance care planning. The follow-up models of outpatient clinics should be examined and developed to better meet the needs of the patients.

Keywords: Palliative medicine; outpatient care; medical oncology; integrated visit

Submitted Apr 23, 2024. Accepted for publication Aug 12, 2024. Published online Sep 25, 2024.

doi: 10.21037/apm-24-71

Highlight box

Key findings

• Integrated palliative care with referrals based on the decision of oncologists seems to concentrate on symptom control and only covers a small proportion of cancer patients. This may leave important palliative care needs unmet.

What is known and what is new?

• Previously, it has been shown that early integration of palliative care is beneficial and is therefore recommended, but the specific methods for arranging such care remain unclear.

• This retrospective real-life study indicates that referral instructions constructed according to international recommendations do not necessarily lead to the identification of palliative care needs. The need for symptom control seems to be better identified than the need for advance care planning among patients referred to integrated palliative care visits.

What is the implication, and what should change now?

• Emphasis should be placed on the identification of palliative care needs and advance care planning. The follow-up models of outpatient clinics should be examined and developed to better meet the needs of the patients. Implementation of systematic referral policy should be strengthened.

Introduction

Background

The definition of early palliative care integration varies from one study to another. In randomized studies, early integration of palliative care is usually referred to if guidance to specialist palliative care is performed within 2–3 months of diagnosis of a serious disease and the patient’s ability to function is good (1). A clinical life expectancy, e.g., 6 to 24 months of remaining life, may also be used as a referral criterion (2). Through systematic review, an expert panel has suggested referral criteria for outpatient palliative care (3). However, there is still a debate on the most optimal time to refer a patient to an integrated palliative care visit, and which group of patients would be most in need of the integrated visit with limited resources (1).

Previous studies show that integration of palliative care alongside cancer treatments is linked to better quality of life experienced by patients (4-7). Better quality of life is also likely to increase patients’ compliance of care (8). The relief of physical symptoms such as fatigue and anorexia-cachexia may also help patients to tolerate cancer treatments better (1). In addition, integrated palliative care is shown to alleviate the overall concern and depression of severely ill patients’ closest ones (9), but not to affect their quality of life (10).

In some studies, patients receiving early integrated palliative care have been shown to have a longer life span compared to the control group (5,11). Patients treated with integrated palliative care are less likely to be hospitalized during their last month of life and are also less likely to die in a hospital (12). Much of the cost savings are explained by the reduced need for hospital services (12). Early integrated palliative care in cancer patients increases the likelihood that the patient has discussed the limitations of treatment with the treating physician prior to death (7). The discussion provides patients with the best possible care that meets their values and wishes but is medically justified (13).

With early integration of palliative care, it is less likely that the patient receives aggressive treatments at the end of their life (7,9,14). End-of-life anti-cancer treatment in the last month is associated with adverse outcomes (15), and it can increase healthcare costs and consume limited resources without obvious benefit to the patient (16). It has been suggested that less than 10% of patients should receive anti-cancer treatment during the last 2 weeks of their life (17,18).

Rationale and knowledge gap

Although there is already much evidence of benefits of early integrated palliative care, real world situation about integrated palliative care visits is not profoundly studied. There is currently no systematically collected data on the exact contents or impacts of integrated visits on the patient’s care path.

Objective

In this study, we use the term “integrated palliative care visit” or “a visit to the palliative care unit” which includes both early and later referrals for integrated visits. Our aim was to determine which patient groups are currently referred to an integrated palliative care visits to the Palliative Unit of Tampere University Hospital, and for what reason. Information was sought on the treatment received by patients and the contents of the integrated palliative care visit. We also examined how integrated palliative care visits occurred in the patient’s treatment path in relation to the cancer treatments and life span. We present this article in accordance with the STROBE reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-24-71/rc).

Methods

Design

We conducted a retrospective registry-based study of patients who visited the palliative care unit while having planned or ongoing oncologic treatment in Tampere University Hospital from January 1, 2018 to June 30, 2021. Patients were followed up until death or June 30, 2022.

For this study permission to access the patient records was obtained from the Pirkanmaa Hospital District, Tampere, Finland (No. R21582). According to Finnish law and research regulations, neither ethics committee approval nor informed consent from the patients was needed for this retrospective, registry-based study. This study was conducted according to national laws, regulations, and the Declaration of Helsinki (as revised in 2013).

Setting

Tampere University Hospital provides secondary health care for a population of 530,000 inhabitants of the Pirkanmaa Hospital District and tertiary-level care for a population of 900,000 inhabitants.

In the Palliative Care Unit of Tampere University Hospital, palliative care is arranged through outpatient visits or in-hospital consultations. The Palliative Care Unit functions in the same facilities as the Department of Oncology. Palliative care physicians collaborate with oncologists also beyond patient care, e.g., participating in the same academic meetings. The Palliative Care Unit provides advanced care planning, psychosocial support, and advanced symptom management, including removal of ascites or pleural fluid through paracentesis or insertion of tunneled catheter. The current instructions for referral to the unit are based on international recommendations (3). Instructions for referral include, for instance, difficult physical or psychosocial symptoms, the need for advance care planning, and cancer not responding to oncologic treatment. Oncologists are familiar with the instructions but make their judgements about referrals individually.

During visits to the palliative care outpatient clinic, the patient always meets a doctor and a nurse who are specialized in palliative care. Follow-up is agreed according to the patient’s needs. The patients are permitted to contact the unit when needed.

Study population/participants

Patients with incurable cancer and planned or ongoing anti-cancer treatment who had visited the palliative care unit during the data collection time were identified from the patient records of Tampere University Hospital. The total number of patients with incurable cancer visiting the department of oncology during the data collection was also extracted from the hospital records. It was estimated that the study size of all the patients visiting the clinic during 2.5 years would reflect the current situation adequately.

Data collection

Collected data included background information about the patient, events during the integrated palliative care visit and events after the visit. Post-visit data included data on the patient’s visits on other special care units, possible anti-cancer treatments and time intervals between the integrated palliative care visit, last anti-cancer treatments and the patient’s death. Two researchers collected the data from the hospital records. Some variables (for example number of visits or diagnose codes) were directly counted or copied from the records while others (for example contents of the visit) required interpretation from text. Unclear interpretations were systematically cross-checked by both researchers. Data collection was performed carefully, and the researchers constantly assessed and cross-checked the data in order to avoid bias in collection or interpretation.

Statistical analysis

We studied the data on frequencies and cross tables and compared differences between groups with a Chi-squared test. Survival estimations were made by the Kaplan-Meier method. Statistical significance was set as P value less than 0.05. Analyses were performed using IBM SPSS Statistics version 28.0 (IBM Corp. Armonk, NY, USA, 2022).

Results

During the data collection time, 4,891 patients with incurable cancer were taken care of at the department of oncology, Tampere University Hospital. Out of this total, 207 (4%) patients were referred to the unit and visited palliative care outpatient clinic.

Characteristics of the patients are shown in Table 1. The most common malignancies were breast cancer (22%), lung cancer (17%) and gastrointestinal (GI) cancers (upper GI, 12% and lower GI, 12%). Altogether 156 (75%) of patients had a metastatic disease. The most common reason for referral for the integrated palliative care visit was the need for symptom control (Table 1).

Table 1

Patient characteristics (n=207)

Variables Numbers
Gender, female 110 [53]
Age, years 69 [28–94]
The patient had underaged children 18 [9]
Cancer diagnosis
   Breast cancer 45 [22]
   Lung cancer 36 [17]
   Upper gastrointestinal cancer 25 [12]
   Lower gastrointestinal cancer 24 [12]
   Prostate cancer 23 [11]
   Renal cancer 11 [5]
   Lymphoma 10 [5]
   Other cancer type 33 [16]
Reasons for referral*
   Symptom control 136 [66]
   Limited anti-cancer treatment possibilities 28 [14]
   Psychosocial need 22 [11]
   Unspecified palliative care needs 21 [10]
   Advance care plan 11 [5]
Anti-cancer treatment after the integrated palliative care visit 197 [95]
   Oncologic drug therapy 135 [65]
   Radiotherapy 33 [16]
   Only hormonal therapy 25 [12]
   Surgical therapy 4 [2]

Data are presented as n [%] or median [range]. *, not reported (n=3).

During the first integrated palliative care visit, the most common interventions included adjustments to symptom control medication, which was made for 89 patients (43%), and a paracentesis, which was completed in 52 (25%) cases (Table 2). Discussion on an advance care plan took place in 69 (33%) cases. For 71 (34%) patients, either a call or a visit to the palliative care unit was agreed upon.

Table 2

Events during the first integrated visit and setting a decision to withhold treatment (n=207)

Event n [%]
Symptom medication modifications 89 [43]
Discussion about an advance care plan 69 [33]
Completed paracentesis 52 [25]
Arrangements for a visit to other health care professionals 21 [10]
A DNR order 33 [16]
A decision to withhold intensive care 26 [13]

DNR, do-not-resuscitate.

After the first integrated palliative care visit, 97 of the patients (47%) visited palliative care unit later again and 147 patients (71%) had either a call or a visit as a post-contact. The median number of post-contacts was 1 [interquartile range (IQR), 0–17]. The proportion of patients who visited the palliative care unit another time, were 56% in breast cancer, 49% in GI cancer, 47% in lung cancer, 43% in other cancer types and 35% in prostate cancer, respectively.

The median survival time from the integrated palliative care visit to death was 373 days [IQR, 95–not applicable (NA)] (Figure 1). Until the end of follow-up, 130 (63%) patients had died. Altogether 19 patients died at Tampere University Hospital, and an additional 19 patients within 2 weeks after their treatment at the hospital. Among patients who visited palliative care unit more than once, 15 (24%) received anti-cancer treatment within a month before their death, compared to patients who had only one visit, the amount was 26 (38%), P=0.09.

Figure 1 Kaplan-Meier estimate of survival of all 207 patients with incurable cancer who visited the palliative care unit while having planned or ongoing oncologic treatment between 2018–2021.

Characteristics of the patients who survived over 1 year or died during the first year after the integrated visit to the palliative care unit are shown in Table 3. There were no statistically significant differences found between the groups.

Table 3

Characteristics of patients divided into two subgroups according to their survival (n=207)

Characteristics Died during the 1st year, n [%] Survived over 1 year, n [%] P
Total 99 [100] 108 [100]
Sex 0.31
   Male 50 [51] 47 [44]
   Female 49 [49] 61 [56]
Age 0.97
   65 years or less 36 [36] 39 [36]
   Over 65 years 63 [64] 69 [64]
Reasons for referral* 0.16
   Symptom control medication modification 28 [28] 45 [42]
   Paracentesis made 31 [31] 29 [27]
   Limited anti-cancer treatment possibilities 18 [18] 10 [9]
   Psychosocial need 11 [11] 9 [8]
   Unspecified palliative care needs 6 [6] 6 [6]
   Advance care plan 5 [5] 6 [6]
Type of cancer 0.43
   Breast 17 [17] 28 [26]
   Prostate 10 [10] 13 [12]
   Lung 17 [17] 19 [18]
   Gastrointestinal 28 [28] 21 [19]
   Other 27 [27] 27 [25]
Another visit after the first visit 46 [46] 51 [47] 0.91

*, not reported (n=3).

Of the patients who died until the end of the follow-up, 80 (62%) received oncologic drug therapy. Of them, 26 (33%) received oncologic drug therapy during the last month of their life and 15 (19%) during the last 2 weeks of their life. Altogether 25 patients received radiotherapy. Five (20%) patients received radiotherapy during the last month and four (16%) during the last 2 weeks.

Discussion

Key findings

According to this registry-based study, a small percentage of all incurable cancer patients were referred to the palliative care unit in Tampere University Hospital during 2018–2021. Based on the data, palliative care integration does not appear to be systematic. During the oncologic treatment, the need for symptom control seems to be better recognized than the need for an advance care plan. Although the initial integrated palliative care visit occurred relatively early in the disease trajectory, a significant proportion of patients underwent anti-cancer treatments shortly before their death.

Strengths and limitations

The current study is grounded in a real-life context, and while it has certain limitations, it provides insights relevant to the clinical care of patients with incurable cancer. One notable attribute of the study is the considerable duration allocated to survey data collection. The collection of the data was carried out carefully by two researchers, which reduces differences in the interpretation of the data. However, it is important to acknowledge the possibility of systematic replication of potential deviations.

This was a retrospective single-center study, so the generalizability of the results to other nations and healthcare systems must be done with caution. With a registry-based study setting, it was not possible to assess, for example, the quality of life of patients. Furthermore, we did not have a control group. We were dependent on the notes made in the patient records. Since the patient information systems are separate, we were not able to check the patient’s end-of-life care path if the care had taken place elsewhere than in Tampere University Hospital. The overall study population remained quite small, so the statistical power to detect significant differences between groups was possibly too low. In addition, the representativeness of the data could be further increased by following all patients until death.

Comparison with similar research and explanations of findings

In our study, only a few patients with incurable cancer were referred to an integrated palliative care visit. In previous studies, models including systematic referral have seemed beneficial (2,9,19-21). With this registry-based study, we cannot profoundly find the reasons for the low referral rate. It is suggested in the literature that the timely integration of palliative care is more difficult now that new alternatives in oncology are available to patients who have not previously been able to receive treatment (22). Early integration of palliative care may initially feel confrontational to the patient when death and the end of life are first brought up (23), and this can also affect doctors. The challenge is that doctors and other medical staff often optimistically assess the patient’s life expectancy (24). Furthermore, while both basic medical training and specialist oncologist training include palliative care education in Finland (25,26), it is possible that the oncologists feel they can take care of their patients’ palliative care needs. A previous study found that oncologists who rarely referred their patients to palliative care did not consider palliative care as a priority or wanted to handle the situation by themselves (27). From an organizing point of view, lack of availability of palliative care resources, poor communication between medical staff, and uncertainty about referral instructions could be barriers to integrate palliative care visits to standard oncologic care (28).

The reasons for referral in this study were more often symptom-based rather than related to advance care planning or end-of-life issues. In two recent studies, pain and psychosocial or existential challenges (29) or no specific question/general counseling, or symptom control (30) were the main reasons for referral for integrated palliative care visits. In another study, many cancer patients lacked advance care planning (31). Nonetheless, according to an expert panel, end-of-life issues and advance care planning were considered the most important aspects of high-quality palliative oncologic care (32).

Most patients received only one visit to the palliative care unit. Regular follow-up has appeared beneficial in previous research (2,9,19-21). In a previous study, the patients’ issues could be resolved in the palliative care unit in 81% cases, but most of the patients required more than one visit (29). However, it is possible that the internationally viable model does not automatically fit into the Finnish health care system. The median time from referral to death could have made it possible to follow patients’ more regularly. However, with the resources available, it is not possible to organize longer follow-ups for all patients, although some patients would certainly benefit from it. It is also possible that the patient experiences simultaneous contacts to several outpatient clinics as a burden.

In this study, 19% of patients received anti-cancer treatment in the last 2 weeks of their life, against the quality criteria suggestions (17,18). This might be due to patients receiving treatments still in poor health, or their health deteriorating suddenly. It is also challenging to predict impending death, since the signs suggesting death are observed relatively infrequently and only in the last few days of life (33). In our study, we did not find any significant signs or differences between groups that could help identify patients dying within the next year. This highlights the difficulty of identifying patients with limited life expectancy. Patients and their closest ones might also insist on prolonging aggressive anti-cancer treatments (34). The study data suggests that patients who had a re-visit in palliative care unit had near-death anti-cancer treatment more seldom than others. The difference, however, was not statistically significant and should be examined in the future.

Implications and actions needed

In Tampere University Hospital, the referral guidelines are based on expert consensus and formed with local oncologists, as recommended (3). This seems not to be enough since, in real life, the referral rate is low. The implementation of the systematic referral policy should be strengthened. Oncologists training and closer cooperation between clinicians are needed to improve timely integration of palliative care in cancer care.

The identification of palliative care needs should be further developed to take a more comprehensive approach. Namely, the need for an advance care plan should be better identified.

In general, care should be developed so that palliative care is available to all patients with a fatal disease, not only cancer patients (35). All patients with severe illness deserve symptomatic relief and psychosocial support, as well as the opportunity to discuss their advance care plan (14).

Further research is required to enhance the integration of palliative care in Finland. Policies and operating models previously proven in international studies should also be studied and applied in the Finnish health care system. Prospective clinical research, preferably involving comparative groups, can potentially contribute to improving patient care outcomes, without compromising current treatments.

Conclusions

Based on the results of the study, the needs of palliative care might be unmet, since so few patients are referred to integrated palliative care. Emphasis should be placed on identification of palliative care needs and advance care planning. The follow-up models of outpatient clinics should be examined and developed to better meet the needs of the patients.

Acknowledgments

A poster of preliminary results was presented at the EAPC World Congress in June 2023 in Rotterdam.

Funding: None.

Footnote

Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-24-71/rc

Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-71/dss

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-71/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-71/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. For this study permission to access the patient records was obtained from the Pirkanmaa Hospital District, Tampere, Finland (No. R21582). According to Finnish law and research regulations, neither ethics committee approval nor informed consent from the patients was needed for this retrospective, registry-based study. This study was conducted according to national laws, regulations, and the Declaration of Helsinki (as revised in 2013).

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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Cite this article as: Jaakkola E, Piili RP, Lehto JT, Tolvanen E. Integrated palliative care visits of patients with incurable cancer in Tampere University Hospital 2018–2021—a retrospective study. Ann Palliat Med 2024;13(6):1353-1361. doi: 10.21037/apm-24-71

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