Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups

Annicka GM van der Plas; H Roeline W Pasman; Bart Schweitzer; Bregje D Onwuteaka-Philipsen

doi:10.3399/bjgp18X695753

Abstract

Background In PaTz (PAlliatieve Thuis Zorg, palliative care at home), modelled after the Gold Standards Framework, GPs and community nurses meet on a regular basis to identify patients with palliative care needs (the PaTz register), and to discuss care for these patients.

Aim To study the effects of the implementation of PaTz, and provide additional analyses on two important elements: the PaTz register and patient discussions.

Design and setting A pre- and post-evaluation among Dutch GPs (n = 195 before the start of PaTz; n = 166, 1 year after the start of PaTz). The GPs also provided data on recently deceased patients (n = 460 before the start of PaTz; n = 305 14 months after the start of PaTz).

Method GPs from all 37 PaTz groups filled in questionnaires. Pre- and post-test differences were analysed using multilevel analyses to adjust for PaTz group.

Results Identification of patients with palliative care needs was done systematically for more patients after implementation of PaTz compared with before (54.3% versus 17.6%). After implementation, 64.8% of deceased patients had been included on the PaTz register. For these patients, when compared with patients not included on the PaTz register, preferred place of death was more likely to be known (88.1% of patients not on the register and 97.3% of deceased patients included on the register), GPs were more likely to have considered a possible death sooner (>1 month before death: 53.0% and 80.2%), and conversations on life expectancy, physical complaints, existential issues, and possibilities of care occurred more often (60.8% and 81.3%; 68.6% and 86.1%; 22.5% and 34.2%; 60.8% and 84.0%, respectively).

Conclusions Implementation of PaTz improved systematic identification of palliative care patients within the GP practice. Use of the PaTz register has added value.

INTRODUCTION

Palliative care aims to improve the quality of life of patients and their families facing the problems associated with life-threatening illness.¹ Interprofessional collaboration may play a decisive role in the ability to provide comprehensive end-of-life care according to the preferences of patients and their informal carers, for instance to allow a patient to die at home.

To improve palliative care provision and collaboration between registered nurses working in the community and delivering care to patients at home (henceforth referred to as ‘community nurses’) and GPs in the Netherlands, the main providers of palliative care at home, PaTz groups were introduced. They are an adaptation of the Gold Standards Framework (GSF).²^,³ Fundamental to PaTz are the interprofessional meetings, generally six times per year, between GPs and community nurses working in the same area, with support from a palliative care consultant (a physician or nurse with formal training and experience in palliative care). One important element is the identification of patients with palliative care needs (for example, by using the surprise question: ‘Will I be surprised if this patient dies in the next 12 months?’) and consequently including them on the PaTz palliative care register. A second important element is the discussion of patients with palliative needs during PaTz meetings. The choice of patients that are discussed differs per group: some groups briefly mention all patients on the PaTz register and some groups discuss patients with urgent or complex issues. A focus group study with PaTz participants showed positive results on interprofessional cooperation and perceptions of participants regarding quality of end-of-life care.³ A review on the GSF also showed consistent and favourable results regarding these aspects.⁴

Research on the GSF and PaTz has mainly focused on process outcomes, such as uptake of the intervention (meetings and/or use of the palliative care register) and interdisciplinary communication, mainly using qualitative methods.³^,⁴ In this study, the authors took a quantitative approach to study the effects of PaTz on primary palliative care. Furthermore, they studied the added value of the use of the two important elements of PaTz — the PaTz register and patient discussions. The authors address the following questions:

What is the effect of PaTz on the organisation of GP provision of palliative care?
What is the effect of PaTz on patient care according to GPs?
Are there differences in palliative care provision between patients included on the PaTz register and patients not included on the register?
Are there differences in palliative care provision between patients who are discussed during PaTz meetings and patients who are not discussed?

How this fits in

Patients consider good collaboration between their GP and other professionals to be crucial to quality of care at the end of life. Both the Gold Standards Framework and PaTz (modelled after the Gold Standards Framework) improve interprofessional cooperation and quality of end-of-life care according to participants. In this study, more palliative care patients were identified after implementation of PaTz, and there was added value in the use of the PaTz palliative care register. Implementation of PaTz should be encouraged, and training or support should be provided within PaTz to use the PaTz register to identify palliative care needs in patients without cancer.

METHOD

Design and population

This is a pre- and post-evaluation using questionnaire data provided by GPs participating in PaTz groups. Through the GPs, the authors collected data on deceased patients and the care provided to them. Between September 2011 and October 2014, all 37 PaTz groups that were about to start that were known to the PaTz foundation were included in the study. Implementation was supported by oral and written instructions.

Procedure

Participating GPs were asked to fill in two questionnaires at two separate time intervals: one before the start of PaTz, and the second 14 months after the start. The first questionnaire was on characteristics of the GP and care provision. The second questionnaire was on the most recently deceased patient(s) who did not die suddenly and unexpectedly (for the post-test this could be patients who were or were not on the PaTz register, and who were or were not discussed), and dealt with the care the deceased patient received in the last 3 months of life. This questionnaire could be filled in for more than one patient (up to a maximum of five patients). The questionnaires were developed for and used in a pilot study among the first four PaTz groups (these pilot groups were not included in this study).³

Data analysis

Pre- and post-test differences regarding GPs (the first two research questions) were analysed in multilevel analyses to adjust for PaTz group. Both linear and logistic multilevel analyses were performed, according to the outcome variable. Pre- and post-test differences regarding patient questionnaires were analysed in multilevel analyses adjusted for PaTz group (research question 1) and for PaTz group, patient age, sex, and cause of death (cancer versus rest) (research question 2). To investigate differences in palliative care provision in patients included on the PaTz register or not (research question 3), the authors used multilevel analyses adjusted for PaTz group, patient age, sex, and cause of death. Differences in palliative care provision in patients discussed during the PaTz meetings or not (research question 4) were tested in logistic regression analyses adjusted for age and cause of death. Logistic regression analyses were performed using SPSS, IBM Statistics for Windows version 20.0; multilevel analyses were performed using MLwiN.

RESULTS

Characteristics of GPs and organisation of palliative care provision by the GP

A total of 37 PaTz groups were involved; the response rate was 59% before the start of PaTz, and 51% 1 year after it started. The mean age of GPs was 50 years, and half were female. Most GPs had a practice of >2000 patients, 41% of GPs worked full time, and 60% had received extra training in palliative care (Table 1).

View this table:

Table 1.

Characteristics of GPs participating in PaTz groups in pre- and post-measurement

Differences in organisation of palliative care provision before and after implementation of PaTz

Identification of patients with palliative care needs was done systematically for more patients after implementation of PaTz than before (not done 37.3% versus 23.8%: some patients 45.1% versus 22.0%: all patients 17.6% versus 54.3%) (Table 1). GPs’ ratings for continuity of care (7.7 versus 7.9), coordination of care (7.2 versus 7.5), and the competence of the GP to deliver palliative care (7.4 versus 7.7) improved after implementation of PaTz, according to GPs. There were no differences following implementation of PaTz compared with before in the use of a care plan, discussions with fellow GPs or community nurses, provision of palliative care after office hours, and information transfer to a locum.

Characteristics of patients and palliative care provision to patients

Age of the deceased patients for whom the GPs had filled in a questionnaire was higher (71.7 versus 75.2 years) after implementation of PaTz than before (Table 2). There were no differences in sex (female 52.7% and 48.9%) and cause of death (cancer: 72.2% and 69.8%) of these patients between pre- and post-test.

View this table:

Table 2.

Patient and care characteristics in pre- and post-measurement for deceased patients

When controlled for age, sex, and cause of death, no differences between pre- and post-test were found. At both times, a large majority of GPs was aware of the preferred place of death (90.7% and 93.6%), most patients died at home (62.2% and 68.2%), were not hospitalised in the last 30 days of life (64.1% and 61.0%), and GPs considered a possible death sooner (>1 month before death 84.4% and 85.5%). Of 11 topics relevant to palliative care, the incurability of the disease was discussed most frequently (78.7% and 82.2%), and spiritual issues were discussed least (33.8% and 29.3%) between GP and patient on both occasions (Table 2).

Differences between patients who were included on the PaTz register or not

Table 3 shows a comparison between patients who were or were not included on the register; 64.8% (n = 188) of patients were included on the PaTz register. Patients included on the register were younger (79.6 versus 72.4 years), and more likely to have died from cancer (52.9% versus 78.7%) compared with patients not included on the register. Controlled for these patient characteristics, preferred place of death was more likely to be known (88.1% versus 97.3%), GPs considered a possible death sooner (>1 month before death 72.5% versus 92.5%), and treatment was aimed at palliation earlier (>1 month before death 53.0% versus 80.2%) for patients included on the register compared with patients not included on the register. In addition, conversations on life expectancy (60.8% versus 81.3%), physical complaints (68.6% versus 86.1%), existential issues (22.5% versus 34.2%), and possibilities of palliative care (60.8% versus 84.0%) occurred more often, compared with patients not included on the register.

View this table:

Table 3.

Differences in patient and care characteristics of patients who were included on the PaTz register or not^a

Differences between patients who were discussed during a PaTz meeting or not

Of the 188 patients included on the PaTz register, 146 (78%) were discussed during a PaTz meeting. Patients who were discussed during a PaTz meeting were younger (71.4 years versus 75.8 years), whereas there were no differences for sex (female 45.9% and 40.5%) and cause of death (cancer 78.8% and 78.6%). Controlled for age and cause of death, differences in care characteristics were found for one variable — treatment was aimed at palliation earlier (>1 month 69.0% versus 83.4%), compared with patients who were not discussed (Table 4).

View this table:

Table 4.

Differences in patient and care characteristics of patients included on the PaTz register who are discussed during a PaTz meeting or not

DISCUSSION

Summary

Regarding the organisation of GP provision of palliative care, more palliative care patients were identified and GPs rated continuity of care and coordination of care higher after implementation compared with before. Also, they rated their own competence to deliver palliative care higher after implementation compared with before. However, this did not go together with positive results regarding patient care (for example, the number of hospitalisations, place of death). Further analyses showed that this might be related to underuse of the PaTz register, and not discussing patients on the register during the PaTz meetings. When these elements were used, place of death was more likely to be known (register), GPs considered a possible death sooner (register), and treatment was aimed at palliation earlier (register and discussions), and conversations on life expectancy, physical complaints, existential issues, and possibilities of palliative care occurred more often (register).

Strengths and limitations

This is the first quantitative study on the impact of PaTz on patient care. However, this study has some potential limitations. First, it was limited to the point of view of GPs. They may have another (potentially more favourable) opinion of the care they provided than patients and carers. Also, as the study was a pre-post design among PaTz groups starting in practice, and not a randomised controlled trial, it was not possible to control for potential confounders (for example, the level of palliative care provision before implementation). To have a better understanding of underlying mechanisms, future studies should include a control group of patients not receiving support from PaTz participants. Finally, this study was conducted in the Dutch healthcare system, in which the GP and community nurse are the main providers of palliative care within the community. The level of palliative care provision among GPs and community nurses may be higher compared with systems with a focus on specialist care provision. Notwithstanding these limitations, this pre-post comparison, and additional in-depth analyses on the two important elements of PaTz, gives insight into palliative care provision after implementation of PaTz.

Comparison with existing literature

Organisation of palliative care provision improved after implementation of PaTz. This was also demonstrated in research on the GSF.⁴ The differences before and after implementation in the GPs’ own ratings on continuity, coordination, and their own competence were small and, although statistically significant, may not be clinically significant. But the difference in systematic identification of patients with palliative care needs before and after implementation was substantial, particularly because identification of palliative care needs can be challenging.⁵ The improvement in organisation did not match with positive results regarding patient care (place of death and the number of hospitalisations). Admittedly, these do not necessarily go hand in hand. But because PaTz participants receive support from a palliative care consultant, and palliative care patients are systematically identified, the authors expected the number of hospitalisations to be lower after implementation and the preferred place of death known more often. It has been shown that the level of primary palliative care provision in the Netherlands is high,⁶^,⁷ so the level of palliative care provision may already be high before implementation of PaTz, leading to a ‘ceiling effect’. For instance, the knowledge on preferred place of death is already 91%, and the number of patients with no hospitalisations in the last 30 days is 64%, before PaTz is implemented. In the pilot study, performed by the authors in the first four PaTz groups in 2010,⁸ the level of palliative care provision of the PaTz GPs was lower before implementation of PaTz than in this study. The pilot yielded more positive results, for example, a decrease of hospitalisations in the last month of life (51% and 37%) and an increase in knowledge on preferred place of death (79% and 88%). The GPs in these first four PaTz groups (these pilot groups were not included in this study) were recruited by one of the authors, whereas the later groups enlisted through self-referral. Probably these participants were already more concerned with palliative care before implementation.

Use of the two important elements of PaTz, in particular patients being placed on the PaTz register, was associated with awareness of the need for palliative care, and with patient communication in line with this awareness. The authors have found no previous studies that investigated differences in palliative care provision and the use of a palliative care register and patient discussions. PaTz, like the GSF, endorses use of the ‘surprise question’ (‘Will I be surprised if this patient dies in the next 12 months?’) for identification of patients with palliative care needs. When the answer is ‘no’, patients should be included on the PaTz register. The authors cannot say whether this earlier recognition of palliative care needs was linked to use of the surprise question, or whether knowledge and awareness in general have improved. Previous research on the surprise question shows mixed results.⁹^–¹¹

PaTz was implemented to improve palliative care provision and collaboration between community nurses and GPs. The added value of the PaTz palliative care register may indicate that PaTz improves knowledge on palliative care. Unfortunately, the patient discussions and use of the PaTz register did not help to include more patients without cancer. Patients on the register were more likely to be patients with cancer (compared with patients not on the register). Recognition of palliative care needs, especially for patients without cancer, remains difficult.¹²^–¹⁴ Once a patient is ‘known’ as a palliative care patient, and care is provided accordingly, this can result in less hospitalisations, more congruence between preferred and actual place of death, and more end-of-life conversations.⁵^,¹⁵^–¹⁷

Implications for practice

Promotion of implementation of PaTz groups is advisable to further improve palliative primary care. Use of the PaTz register is a key element in this. A first recommendation for PaTz is therefore to stimulate and facilitate implementation of the PaTz register (for example, provide training to participants in the use of the PaTz register). A second recommendation is to give due attention to recognition of patients with palliative care needs. Palliative care for vulnerable groups, such as frail older patients and patients with organ failure, should be promoted. In addition, even when the patient is discussed during PaTz and is included on the PaTz register, some topics are often not discussed with patients (social issues, existential issues, burden of treatment). A final recommendation is that some additional training or support is provided within PaTz on how to discuss those topics with patients.

Notes

Funding

ZonMw (grant number 80-82100-98-128), PvF stichting. The funders had no role in data collection and analysis, selection of respondents, decision to publish, or preparation of the manuscript.

Ethical approval

Not applicable. Under Dutch law this study is exempt from approval by an ethics committee. Information is available from Centrale Commissie Mensgebonden Onderzoek [Central Committee on Research Involving Human Subjects] (www.ccmo.nl/en).

Provenance

Freely submitted; externally peer reviewed.

Competing interests

Two of the authors, Bart Schweitzer and Bregje D Onwuteaka-Philipsen, are board members of PaTz Foundation, which was established to further develop PaTz through evaluation, and to facilitate implementation of PaTz in the Netherlands.

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Received July 12, 2017.
Revision requested September 19, 2017.
Accepted November 20, 2017.

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Cited By...

Intended for Healthcare Professionals

[1] 1.↵
Sepulveda C,
Marlin A,
Yoshida T,
Ullrich A
(2002) Palliative care: the World Health Organization’s global perspective. J Pain Symptom Manage 24(2):91–96.
OpenUrl CrossRef PubMed

[2] Sepulveda C,

[3] Marlin A,

[4] Yoshida T,

[5] Ullrich A

[6] 2.↵
Mahmood-Yousuf K,
Munday D,
King N,
Dale J
(2008) Br J Gen Pract, Interprofessional relationships and communication in primary palliative care: Impact of the Gold Standards Framework. DOI: https://doi.org/10.3399/bjgp08X279760.

[7] Mahmood-Yousuf K,

[8] Munday D,

[9] King N,

[10] Dale J

[11] 3.↵
van der Plas AGM,
Hagens M,
Pasman HR,
et al.
(2014) PaTz groups for primary palliative care: reinventing cooperation between general practitioners and district nurses in palliative care: an evaluation study combining data from focus groups and a questionnaire. BMC Fam Pract 15:14.
OpenUrl

[12] van der Plas AGM,

[13] Hagens M,

[14] Pasman HR,

[15] et al.

[16] 4.↵
Shaw KL,
Clifford C,
Thomas K,
Meehan H
(2010) Improving end-of-life care: a critical review of the Gold Standards Framework in primary care. Palliat Med 24(3):317–329.
OpenUrl CrossRef PubMed

[17] Shaw KL,

[18] Clifford C,

[19] Thomas K,

[20] Meehan H

[21] 5.↵
Claessen SJ,
Francke AL,
Engels Y,
Deliens L
(2013) How do GPs identify a need for palliative care in their patients? An interview study. BMC Fam Pract doi:10.1186/1471-2296-14-42.
OpenUrl CrossRef

[22] Claessen SJ,

[23] Francke AL,

[24] Engels Y,

[25] Deliens L

[26] 6.↵
De Roo ML,
Miccinesi G,
Onwuteaka-Philipsen BD,
et al.
(2014) Actual and preferred place of death of home-dwelling patients in four European countries: making sense of quality indicators. PLoS One 9(4):e93762.
OpenUrl CrossRef PubMed

[27] De Roo ML,

[28] Miccinesi G,

[29] Onwuteaka-Philipsen BD,

[30] et al.

[31] 7.↵
Ko W,
Deliens L,
Miccinesi G,
et al.
(2014) Care provided and care setting transitions in the last three months of life of cancer patients: a nationwide monitoring study in four European countries. BMC Cancer 14:960.
OpenUrl PubMed

[32] Ko W,

[33] Deliens L,

[34] Miccinesi G,

[35] et al.

[36] 8.↵
Schweitzer B,
Duijsters M,
Van der Plas A,
et al.
(2013) Handleiding ten behoeve van de implementatie van PaTz. (Stichting PaTz, Amsterdam) [Manual for the implementation of PaTz].

[37] Schweitzer B,

[38] Duijsters M,

[39] Van der Plas A,

[40] et al.

[41] 9.↵
Haga K,
Murray S,
Reid J,
et al.
(2012) Identifying community-based chronic heart failure patients in the last year of life: a comparison of the Gold Standards Framework Prognostic Indicator Guide and the Seattle Heart Failure Model. Heart 98(7):579–583.
OpenUrl Abstract/FREE Full Text

[42] Haga K,

[43] Murray S,

[44] Reid J,

[45] et al.

[46] 10.
Moroni M,
Zocchi D,
Bolognesi D,
et al.
(2014) The ‘surprise’ question in advanced cancer patients: a prospective study among general practitioners. Palliat Med 28(7):959–964.
OpenUrl CrossRef PubMed

[47] Moroni M,

[48] Zocchi D,

[49] Bolognesi D,

[50] et al.

[51] 11.↵
Downar J,
Goldman R,
Pinto R,
et al.
(2017) The ‘surprise question’ for predicting death in seriously ill patients: a systematic review and meta-analysis. Can Med Assoc J doi:10.1503/cmaj.160775.
OpenUrl Abstract/FREE Full Text

[52] Downar J,

[53] Goldman R,

[54] Pinto R,

[55] et al.

[56] 12.↵
Thoonsen B,
Vissers K,
Verhagen S,
et al.
(2015) Training general practitioners in early identification and anticipatory palliative care planning: a randomized controlled trial. BMC Fam Pract 16:126.
OpenUrl PubMed

[57] Thoonsen B,

[58] Vissers K,

[59] Verhagen S,

[60] et al.

[61] 13.
Gadoud A,
Kane E,
Macleod U,
et al.
(2014) Palliative care among heart failure patients in primary care: a comparison to cancer patients using English family practice data. PLoS One 9(11):e113188.
OpenUrl CrossRef PubMed

[62] Gadoud A,

[63] Kane E,

[64] Macleod U,

[65] et al.

[66] 14.↵
Evans N,
Pasman HR,
Donker GA,
et al.
(2014) End-of-life care in general practice: a cross-sectional, retrospective survey of ‘cancer’, ‘organ failure’, and ‘old-age/dementia’ patients. Palliat Med 28(7):965–975.
OpenUrl CrossRef PubMed

[67] Evans N,

[68] Pasman HR,

[69] Donker GA,

[70] et al.

[71] 15.↵
Seow H,
Sutradhar R,
McGrail K,
et al.
(2016) End-of-life cancer care: temporal association between homecare nursing and hospitalizations. J Palliat Med 19(3):263–270.
OpenUrl

[72] Seow H,

[73] Sutradhar R,

[74] McGrail K,

[75] et al.

[76] 16.
Almaawiy U,
Pond GR,
Sussman J,
et al.
(2014) Are family physician visits and continuity of care associated with acute care use at end-of-life? A population- based cohort study of homecare cancer patients. Palliat Med 28(2):176–183.
OpenUrl CrossRef PubMed

[77] Almaawiy U,

[78] Pond GR,

[79] Sussman J,

[80] et al.

[81] 17.↵
Evans N,
Costantini M,
Pasman HR,
et al.
(2013) End-of-life communication: a retrospective survey of representative general practitioner networks in four countries. J Pain Symptom Manage doi:10.1016/j.jpainsymman.2013.04.008.
OpenUrl CrossRef PubMed

[82] Evans N,

[83] Costantini M,

[84] Pasman HR,

[85] et al.

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Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups

Abstract

INTRODUCTION

How this fits in

METHOD

Design and population

Procedure

Data analysis

RESULTS

Characteristics of GPs and organisation of palliative care provision by the GP

Differences in organisation of palliative care provision before and after implementation of PaTz

Characteristics of patients and palliative care provision to patients

Differences between patients who were included on the PaTz register or not

Differences between patients who were discussed during a PaTz meeting or not

DISCUSSION

Summary

Strengths and limitations

Comparison with existing literature

Implications for practice

Notes

Funding

Ethical approval

Provenance

Competing interests

Discuss this article

REFERENCES

In this issue

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