Predictors of referral to specialised palliative care at a University Hospital: Towards purposeful commitment of a limited resource

doi:10.21203/rs.3.rs-1607931/v1

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Research Article

Predictors of referral to specialised palliative care at a University Hospital: Towards purposeful commitment of a limited resource

https://doi.org/10.21203/rs.3.rs-1607931/v1

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Purpose

Palliative Care (PC) can be divided into general PC (GPC) as an integrated part of patient care in all fields of medicine and specialised PC (SPC), which is usually provided within palliative care units (PCUs) by specialised PC physicians. To date, the criteria on which patients are selected for SPC or GPC are not standardized. Such information would be vital for increasing the efficiency of the limited resource of SPC. The present study aims at identifying criteria associated with the referral to SPC in a large University hospital.

Methods

This retrospective single-centre study evaluated the total of 704 PC consultation requests between March 2016 and August 2020 to examine characteristics of patients who were referred to SPC at a PCU compared to those receiving GPC. To analyse criteria correlated with referral to PCU, binary logistic regression was conducted. Significant variables were then incorporated into a multivariate logistic regression model.

Results

The total of 704 PC consultation requests included 374 requests for a referral to SPC and 330 requests for a PC consultation, only. Of the 374 patients for whom the treating physician requested a referral to SPC, 145 (38.8%) patients were actually referred. Statistically significant factors associated with referral to SPC were the need for pain management (OR = 2.3) and nutritional advice (OR = 4.4).

Conclusion

Indicated triggers requiring SPC included complex symptom burdens, particularly pain and nutrition problems. Further education regarding these findings could help to ameliorate targeted use of the limited resource SPC.

palliative care

end of life care

palliative consultation service

specialised palliative care

In a career as a medical practician it is far more likely to accompany patients after receiving the diagnosis of an incurable disease than to perform resuscitation. Nevertheless, palliative care (PC) is still a stepchild of medicine with very limited resources in comparison to the demand. In Austria, 10–20% from 90.000 dying persons per year are in need for PC. Data from the year 2020 show that there are 368 beds all over Austria on PC wards, which obviously does not cover the need (1). Therefore, patients receiving specialized palliative care (SPC) must be chosen wisely.

In medicine, treatment pathways or medical treatment scores help to standardize procedures and provide the optimum treatment for everyone. PC is defined through individuality and personalized treatment strategies. Studies have shown that provision of early PC benefits patients as well as their caregivers, while in clinical practice, PC is still often initiated late in the disease course (2). In Austria, the demand for SPC is mainly initiated by the treating physician while a PC team evaluates the suitability of SPC for the individual patient.

Concerning hospital-based PC, each unit must provide general PC (GPC), while PCUs deliver SPC and focus on complex symptoms and situations. In this study, GPC is defined as basic symptom management, goals-of-care discussions, and end-of-life care that can be provided by hospital units themselves or with the help of a PC consultation team. SPC is defined as the provision of complex symptom management and end-of-life care involving more intense care, as well as assistance with challenges for teams or caregivers. Due to an increasing number of hospitalised patients with chronic and advanced diseases, there is an increasing need for PC consultation services in hospitals (3). The analysis of a large database in Denmark including 31.139 patients revealed that referral to SPC did not differ between primary and secondary healthcare sectors and that similar symptoms led to the need for SPC (4).

If performed in an optimal manner, PC should be initiated at diagnosis of an advanced incurable disease as early as possible. PC may also be provided alongside disease-specific therapy to optimally adapt PC to the respective patients and their needs. PC can also be initiated after the end of disease-specific therapy. The realistic achievement of defined therapy goals, advanced care planning, coping with diseases, and the predominance of therapeutic advantages over possible disadvantages constitute the cornerstones of PC (5). There are many well-designed studies indicating that including PC in treatment improves quality of life without reducing survival (6–9). When providing optimal symptom alleviation, survival may even be prolonged. In 2010, a landmark study by Temel et al. compared standardised oncological therapy with and without additional early PC that was introduced after the initial diagnosis of stage IV lung cancer. Through early PC, the survival of the patients could be extended by up to three months. In addition, there was a significant improvement in the quality of life, accompanied by a reduction in anxiety and depression (10). Another retrospective study compared patients with advanced lung cancer. Those with early PC integration were admitted to the hospital less frequently, and only 33% died in hospital, whereas 48% of patients with PC initiated late in the disease course and 50% without PC died in hospital (11). In addition, PC can provide relief of distress and improve psychosocial symptom burden through prognostic disclosures (12). Aggressive treatments, increased hospital stays, and the number of visits to the emergency room can be counted as indicators of poor quality of life at the end of a person’s life (13). Ideally, this can be prevented through timely PC. Despite the abovementioned study results, PC consultation teams who can evaluate the need for SPC in hospitals are often called late and sometimes only in the last few days of life. Additionally, many studies do not differentiate between GPC and SPC, which makes it challenging to provide targeted concept.

Health care pathways vary from country to country, making it difficult to directly transfer existing study results from one country to another. In Austria, initiating referral to PC is an individual decision mainly of the respective treating physician. In order to optimize the use of the limited resources of SPC, a more standardized procedure for referral alongside an attempt for palliative care education would be beneficial. As a first step towards this goal, the present study investigates for the first time existing referral patterns and patient characteristics associated with both the request for a PC consultation and SPC referral in one of the largest hospitals in Europe. Furthermore, we examine predictors of referral to SPC, providing an evidence base for optimising and standardising current practice.

Patients

The present study sample included all patients receiving a PC consultation from March 2016 to August 2020 in the largest academic hospital in Austria, the General Hospital of Vienna. Reasons for exclusion were a lack of permission to inspect a patient file and missing written information about patients’ PC consultation. The study was approved by the ethics committee of the Medical University of Vienna (EK number:1333/2019).

PC consultation services at the Medical University of Vienna (MUW)

The PC consultation services at the Vienna General Hospital of the Medical University of Vienna (MUW) is provided by a multi-professional, interdisciplinary PC team. The Vienna General Hospital comprises about 1700 beds with an integrated comprehensive cancer centre and a PC unit covering 12 beds and providing SPC. The PCU has about 350 admissions per year. In recent years, the demand for the PC consultation service has continuously grown. In most cases, a PC physician together with a PC nurse undertake the consultation. A consultation assignment sheet must be completed by the treating physician, before being visited by the PC team.

The sheet includes a question regarding whether the patient should be referred to the PCU for SPC or the requesting unit just needs a consultation by the PC team (GPC). Possible reasons for consultation requests (multiple entries were possible) included pain, shortness of breath, nausea/vomiting, psychological problems, nutritional problems, social situation, relief for caregivers, care in the terminal phase, care problems, or ‘other´. Furthermore, the degree of care needed by each patient is assessed. It must also be specified whether a social worker has already been involved and whether the patient has been informed about the status of their current illness and the planned visit by the PC team. The consultation assignment sheet must be completed by the treating physician.

Data collection

A review of all PC requests and consultations occurring during the study period was conducted via the in-house computer information management system (AKIM) by screening patient records. Only authorised persons had access to the original data. Before evaluation, study-relevant data were pseudonymously compiled with a sequential pseudonymisation number.

Statistical analysis

Percentages were used to describe patient characteristics. To examine predictors for receiving SPC, first, a binary logistic regression was conducted to analyse criteria that correlated with a referral to the PCU. The dependent variable was admission to SPC (yes or no). The independent variables were age, gender, Karnofsky Index, ECOG score, diagnosis, reasons for referral request, and main purpose of request as indicated by the treating physician (SPC or consultation). Second, significant variables of the first analysis were included in a multivariate binary logistic regression model. Variance Inflation Factors (VIFs) indicated no multicollinearity between independent variables. The Statistical Package for the Social Sciences (SPSS) software, V.27 (SPSS Inc., Chicago, Illinois, USA), was used for all calculations.

Overall, 700 out of 704 patients requiring a PC consultation were included in the analysis. Three patients were excluded due to missing written information about the consultation and one patient due to the lack of permission to inspect the patient files. The median age was 65 years (range 18–97), and 368 (52.6%) patients were women. In our cohort, 374 (53.4%) patients were requested for a referral to the PCU for SPC via the consultation assignment sheet by the treating physician.

A total of 113 different advanced diagnoses were identified in the patient population. The most frequent malignant disease (n = 98, 14%), was lung cancer, of which 28 (19.3%) patients were referred to SPC. The second-most common were gynaecological malignancies, with 63 affected patients (9%). Of these, 15 (10.3%) were referred to SPC. Patient characteristics are shown in Table 1.

Of the 374 patients for whom the treating physician requested a referral to SPC, 145 (38.8%) patients were actually referred. Out of the 326 patients no referral request was made, i.e. patients primarily classified as not suitable for SPC by the treating physician, a total of 28 (8.59%) were nevertheless referred to SPC after evaluation through the PC team.

Patients receiving SPC were on average more often female and younger than patients receiving GPC. Patients who received SPC had a slightly lower mean Karnofsky Index (49.6 vs. 54.4). The most common reasons for requesting a referral to SPC were pain (65%), nutritional problems (50%), end-of-life care (30%), and a reduced general condition (30%) (Table 1).

Table 1

Characteristics of patients registered for PC consultation
Characteristics			Referral to SPC
		yes n (%)/ Mean (min-max)		no n (%)/ Mean (min-max)		total n (%)
Patients			145 (20.7)		555 (79.3)	700 (100)
Sex	Female		85 (58.6)		283 (51.0)	368 (52.6)
	Male		60 (41.4)		272 (49.0)	332 (47.4)
Age in years	18–35		10 (6.9)		12 (2.2)	22 (3.1)
	36–50		32 (22.1)		46 (8.3)	78 (11.1)
	51–65		46 (31.7)		167 (30.1)	213 (30.4)
	66–80		52 (35.9)		258 (46.5)	310 (44.3)
	81–95		5 (3.4)		69 (12.4)	7 (10.6)
	> 96		0 (0)		3 (0.5)	3 (0.4)
Diagnosis	Malignant
	Lung		28 (19.3)		70 (12.6)	98 (14.0)
	Gynaecological		15 (10.3)		48 (8.6)	63 (9.0)
	Head and neck		11 (7.6)		44 (7.9)	55 (7.9)
	Breast		18 (12.4)		36 (6.5)	54 (7.7)
	Colorectal		15 (10.3)		35 (6.3)	50 (7.1)
	Pancreatic		13 (9.0)		35 (6.3)	48 (6.9)
	Melanoma		3 (2.1)		35 (6.3)	38 (5.4)
	Upper gastrointestinal		5 (3.4)		26 (4.7)	31 (4.4)
	Liver		2 (1.4)		23 (4.1)	25 (3.6)
	Haematological		4 (2.8)		20 (3.6)	24 (3.4)
	Sarcoma		7 (4.8)		15 (2.7)	22 (3.1)
	Prostate		2 (1.4)		20 (3.6)	22 (3.1)
	Brain		2 (1.4)		17 (3.1)	19 (2.7)
	Others		5 (3.4)		11 (2)	16 (2.3)
	Bladder		0 (0.0)		12 (2.2)	12 (1.7)
	Myeloma		3 (2.1)		8 (1.4)	11 (1.6)
	Kidney		3 (2.1)		8 (1.4)	11 (1.6)
	Non-malignant
	Others		2 (1.4)		29 (5.2)	31 (4.4)
	Heart disease		4 (2.8)		24 (4.3)	28 (4.0)
	Lung disease		1 (0.7)		12 (2.2)	13 (1.9)
	Neurological disease		0 (0)		12 (2.2)	12 (1.7)
	Kidney disease		1 (0.7)		9 (1.6)	10 (1.4)
	Fractures		1 (0.7)		6 (1.1)	7 (1.0)
Aim of request
	GPC consultation		28 (19.3)		298 (53.7)	326 (46.6)
	Referral to SPC at the PCU		117 (80.7)		257 (46.3)	374 (53.4)
ECOG^* status
	0		0 (0.0)		8 (1.4)	8 (1.1)
	1		18 (12.4)		92 (16.6)	110 (15.7)
	2		75 (51.7)		197 (35.5)	272 (38.9)
	3		45 (31.0)		148 (26.7)	193 (27.6)
	4		7 (4.8)		96 (17.3)	103 (14.7)
	5		0 (0.0)		14 (2.5)	14 (2.0)
Karnofsky Index			49.6 (10–70)		54.4 (0–90)	46.3 (0–90)
Reason of request
	Pain		95 (65.5%)		195 (35.1%)	290 (41.4%)
	Dyspnoea		38 (26.2%)		115 (20.7%)	153 (21.9%)
	Nausea		18 (12.4%)		70 (12.6%)	88 (12.6%)
	Vomiting		8 (5.5%)		34 (6.1%)	42 (6%)
	Psychiatric problems		12 (8.3%)		65 (11.7%)	77 (11%)
	Nutritional problems		72 (49.7%)		88 (15.9%)	160 (22.9%)
	Social issues		4 (2.8%)		21 (3.8%)	25 (3.6%)
	Caregiver relief		6 (4.1%)		38 (6.8%)	44 (6.3%)
	End-of-life care		44 (30.3%)		165 (29.7%)	209 (29.9%)
	Care issues		5 (3.4%)		58 (10.5%)	63 (9%)
	Other problems		12 (8.3%)		91 (16.4%)	103 (14.7%)
	Reduced general condition		44 (30.3%)		118 (21.3%)	162 (23.1%)
^*ECOG, Eastern Cooperative Oncology Group

Factors associated with SPC referral

The following reasons for request were shown to be significantly associated with referral to SPC in the first regression analysis: pain, nutritional problems, other problems, reduced general condition, ECOG score, Karnofsky Index, and the aim of the request indicated by the treating physician. Including these aspects in a multivariate logistic regression analysis, we found that patients citing pain as the reason for their request had a 2.3 higher likelihood of being referred (p < .001). Furthermore, patients indicating nutritional problems as the reason for their request were shown to have a 4.4 higher likelihood of obtaining a SPC referral (p < .001). Patients for whom referral to the PCU was requested by the treating physician (compared to patients for whom only a PC consultation was requested) were shown to have a 4.5 times higher likelihood of being referred (p < .001). Borderline significance for SPC referral was shown by a ECOG score of 4–5. Results of regression analysis are depicted in Table 2.

Table 2

Predictors for admission to SPC based on multivariate logistic regression analysis
Variables	OR	95% CI		p
		Lower	Upper
Pain	2.28	1.47	3.54	< .001
Nutritional problems	4.44	2.81	7.03	< .001
Other problems	1.25	0.59	2.64	.56
Reduced general condition	1.60	0.99	2.59	.06
ECOG score
ECOG 2	2.21	0.17	28.44	.54
ECOG 3	4.10	0.66	25.45	.13
ECOG 4–5	3.48	0.99	12.20	.05
Karnofsky Index	1.01	0.97	1.05	.73
Aim of request (Referral)	4.51	2.79	7.30	< .001
*ECOG, Eastern Cooperative Oncology Group

In the current study, we were able to identify attributes of patients in need for a referral to SPC at the PCU. These included symptom burden with a focus on pain management, nutrition problems, end-of-life care, as well as a reduced general condition. Recognising these symptom-driven patterns might help to differentiate GPC from the necessity for PCU referrals and to better allocate the limited resources of PCU.

The study results underline the characteristics of patients receiving SPC, who were on average more often female and younger. A lung cancer diagnosis was the most common diagnosis in patients who required SPC. This might be explained by the fact that lung cancer is the leading cause of cancer-related mortality worldwide (14) and may cause a high symptom burden. The second-most common diagnoses in the present study were gynaecological malignancies, also comprising a high symptom burden (15). In addition, gender should be considered when requesting a PC consultation. A study found a less positive attitude toward PC in male patients, which could lead to disparities (16).

In the current study, 21% of patients who received a PC consultation were referred to SPC. This represents a realistic proportion of patients in need of SPC. In general, it should no longer be questioned whether PC should be offered but rather how it can be provided in an optimal and timely manner (17). PCUs are not primarily intended as a setting for dying patients in their final days, but instead are intended to offer targeted care and holistic symptom alleviation (18).

The prevailing attitude towards PC as end of life care entails late referral where high symptom burden increases the need for specialized care. If patients are referred to SPC shortly before death, there might be less time to improve the patients’ conditions or to alleviate prevailing symptoms. Organising the optimal means of care too late might lead to hospitalisation and death in hospital.

Pain and nutritional problems are demonstrably high concerning symptom prevalence in PCUs (19), which is in accordance with the results of this study. Due to the frequent need for PC knowledge, this should be taken as an indication that regular training should be offered at different hospital units to improve the alleviation of burdensome symptoms. In addition, timely referral to a PC team might improve awareness in differentiating between the need for GCP and SPC. One study showed that the median time from diagnosis to first referral to a PC institution was 1.5 years. Of a total of 391 patients with ovarian cancer, only 5% were referred to PC within eight weeks of diagnosis. Of 138 deceased patients, 38% were referred to PC less than 30 days and 17% less than 7 days before death (20). A recent study examining 153 cervical cancer patients showed that the median time from a PC consultation to death was 2.3 months, while a third of the patients was referred to a PC in the last 30 days of life (21). Another study including 515 patients with metastatic breast cancer showed that 20% of the patients were referred to a PC institution, while embedding PC increased referrals and improved end of life care (EOL care) (22). In a study with 992 patients, referrals to PC more than 90 days prior to death were considered early, and those less than 90 days prior to death were considered late. The group with early integration received less medical care, which led to improved quality outcomes and cost savings (23). Standardised referral criteria would help define referral criteria for SPC more clearly. Regular trainings in PC should be mandatory to improve patient care and disburden medical units. PC consultation visits require human resources and might improve patient care given that only a small proportion of patients can be referred to SPC. Therefore, the early integration of social workers seems necessary in determining the best place of care in conversation with the patients, their caregivers, and the medical team.

Data from patients in the United Kingdom who had either been referred to a hospice or a PCU were analysed. The median length of stay in a PCU was 20 days. It varied depending on the diagnosis of the patients. For those with a malignant disease the stay was 37 days, for those with a chronic life-limiting disease it was shorter, with a duration of 16 days (24). This underlines that the needs of care might differ between patients with malignant and non-malignant diseases. However, the underutilisation of PC should be avoided. ESMO guidelines recommend that PC services should be integrated based on evidence and should be dynamic and personalised. Ideally, PC should begin at the time of diagnosis and should be provided continuously through end-of-life or survivorship (25). As well, the American Society of Clinical Oncology (ASCO) provides a guideline for integrating PC into standard oncology care (26). Integrating GPC and SPC services into comprehensive cancer centres appears to be mandatory when providing PC to patients living with non-malignant diseases and remains a challenge (27).

When interpreting the current study results, limitations must be addressed. The study had a retrospective design and was a single-centre study. Therefore, the study results cannot be generalised. However, the goal of this study was to identify PC referral patterns and possible similarities of patients receiving SPC in Austria. With the Vienna General Hospital being the largest hospital in the country and one of the largest hospitals in Europe, our data can be regarded as valid and reliable for Austria and our targeted research goal.

When specifying the reasons for the PC consultation in the request form, physicians were able to enter multiple answers. Therefore, it is possible that some of the answers simply stated the most stressful symptoms but did not provide holistic information about the patients’ condition. This study did not examine the time between diagnosis and the first request for a PC consultation. Calculating the duration from diagnosis to first PC contact might be useful to identify factors that influence PC consultations.

Quality control and patient-reported outcome measurements are mandatory to map what kind of treatment various PC services provide, to assess treatment outcomes, and to further integrate PC into patient care (28, 29).

The present study identified the main difficulties end of life caregivers face in the treatment of patients in a PC setting and provides information about differing patient-centred needs concerning GPC and SPC when calling for PC consultation. In conclusion, the results of this study show that complex pain syndromes and nutritional problems often lead to excessive demands and that training and further education in PC are required here in order not to push the treating teams to their limits. The fact that the resources for SPC are scarce must be communicated to medical professionals in a clear manner. Then, the misconception of SPC regarded as “end of life care to everyone” might be transformed to a change of perspective where SPC is perceived as a solution-oriented discipline that not only deals with end of life care but with complex problems and patients’ quality of life. More targeted access to PC services would enrich the lives of patients and caregivers and has yet to be implemented in clinical practice to provide PC when needed and in a practice-changing manner.

Funding: The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.

Competing Interests: The authors have no relevant financial or non-financial interests to disclose

Author Contributions: All authors contributed to the study conception and design. Data collection and preparation were performed by Feroniki Adamidis and Noemi Baumgartner. Statistical analysis were performed by Feroniki Adamidis, Noemi Baumgartner and Claudia Fischer. The first draft of the manuscript was written by Feroniki Adamidis and Eva K. Masel. The research work was supervised by Eva K. Masel, Claudia Fischer, and Elisabeth L. Zeilinger. All authors commented on previous versions of the manuscript and contributed in revising the manuscript. All authors read and approved the final manuscript.

Ethics approval: This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of the Medical University of Vienna (EK number:1333/2019).

Consent to participate: Informed consent was obtained from all individual participants included in the study.

Consent to publish: Individual person’s data were not processed in this study nor will they be published.

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No competing interests reported.

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Predictors of referral to specialised palliative care at a University Hospital: Towards purposeful commitment of a limited resource

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Version 1

Abstract

Purpose

Methods

Results

Conclusion

Introduction

Patients And Methods

Results

Factors associated with SPC referral

Discussion

Strength And Limitations

Conclusion

Declarations

References

Additional Declarations

Status:

Version 1