Advance care planning and a structured palliative plan in primary health care decrease cancer deaths in hospital: A prospective controlled non-randomized intervention trial

doi:10.21203/rs.3.rs-3025464/v1

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Research Article

Advance care planning and a structured palliative plan in primary health care decrease cancer deaths in hospital: A prospective controlled non-randomized intervention trial

https://doi.org/10.21203/rs.3.rs-3025464/v1

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Background: Advance care planning (ACP) enables patients to define goals and preferences, reflecting a person’s wishes and current medical condition. Spending less time in hospital and not dying in hospital are advocated to be desirable outcomes in palliative care (PC). In 2015, 36% of cancer patients died in hospital and 13% died at home in Norway.

Method: From 2015 to 2022 this prospective controlled non-randomized intervention trial included and observed 151 cancer patients from the Romsdal region with or without an organized ACP conversation with a conclusive and structured palliative plan in primary health care (ClinicalTrials.gov Identifier: NCT02170168, June 23, 2014). The patients were identified through their contact with the local hospital, cancer outpatient clinic or hospital-based PC team.

Results: During the observation period, 135 patients died. Of these, 74 patients had a structured palliative plan (intervention (I) group) and 61 had not (control (C) group). Dying in hospital was significantly less common for patients in the I group compared to the C group (16.2% vs 34.4%; p=0.014; X² (1, n = 135) = 6.00). Patients with the intervention were more likely to die at home (33.8% vs 29.5%) or in nursing home (50.0% vs 36.1%). There were no statistically significant differences between the groups according to days at home, in nursing home, or in hospital during the last 90 days of life. Observed differences between the groups when it came fulfilment of preferred place of death (PPOD) and actual place of death (APOD) on 109 patients (42.2% in I group and 26.7% in C group) did not reach statistical significance (p=0.096).

Conclusion: Organized ACP conversations with a conclusive and structured palliative plan in primary health care decreased the number of cancer deaths in hospital in our study. A structured ACP approach integrating palliative care into oncology within primary health care, supports patients´ preferences by changing the current care profile to a more outpatient care and is feasible within the Norwegian health care system.

Advance Care Planning

Cancer

Palliative Care

Primary Health Care

Home Care

Place of death

Preferred place of death

Actual place of death

Advance care planning (ACP) is a continual process where a patients’ current medical condition and prognosis are reviewed, their preferences for information regarding their illness are elicited, and likely medical dilemmas are presented and options discussed (1). The answer to the question “which medical treatment is right for me?” depends upon the patients’ goals, values, and preferences, and it cannot be accurately predicted by the clinician, the family, or other decision-makers (2). ACP enables patients to discuss, define goals, and set preferences for future medical treatment and care together with family and health care providers, and to record and review these preferences (3). Using ACP in daily routine is often challenging, regarding to when, where and how to start, where to get all necessary information, how to document and how to involve all future health care providers both in primary and specialist health care (4). ACP definition and guidelines help to implement ACP on a system level (5). ACP is a complex intervention on individual level (6). The ACP process is iterative and builds on an existing and ongoing medical relationship (7). An ACP model within oncology treatment is feasible for community palliative care (PC) services (8) as well as hospital-based services (9). Specialist PC teams can successfully contribute to integration of oncology and PC (10). Limited hospital-based specialist PC resources meet a raising number of palliative cancer patients, living longer with modern oncology treatment (11). It has been shown that ACP conversations initiated by specialist health care mostly occurred in late-stage cancer, with providers other than oncologists (12). There have been growing calls to keep GPs engaged in end-of-life (EoL) care and to build capacity in providing a palliative approach to care in the primary care setting (13). It has been shown that where GPs were actively involved with home visits, ACP conversations and shared documentation of conclusions in a palliative plan, there was higher likelihood of home death for cancer patients (14). In many countries, community nurses play a leading role in initiating ACP conversations and conducting them with or without a physician present (15). In 2018 the World Health Organization affirmed that providing palliative care to patients, families, and communities is core to the role and identity of primary care clinicians (16). An international consensus supported by the European Association for Palliative Care, gave guidance for clinical practice regarding use of ACP and pointed out the role of trained non-physician facilitators to support the ACP process (3). To separate day-to-day care planning and ACP may be challenging, and ACP documentation may be scattered and difficult to find and use (12). There is always a right time and place for any conversation and there is no exception for the ACP conversation, which has resulted in an ongoing discussion between specialist and primary health care (17, 18).

Time spent at home is recognized as a valid outcome to assess the quality of EoL care and is in line with patients’ preferences (19, 20). Higginson et al. (21) concluded from a literature review that home care is the most common preference for place of care and death, with inpatient hospice care as second most common preference among advanced cancer patients. In a study covering all deaths in Norway in 2012 and 2013 (n = 83.434), 15% of deaths happened at home, being most frequent among patients with 'Circulatory diseases' and 'Cancer' (22). In Norway, the majority of cancer patients die in nursing homes and hospitals. With a proportion of 13% of cancer patients dying at home, Norway is at the bottom of the list of home deaths compared to other European countries (23, 24).

ACP conversations and a conclusive palliative plan were systematically implemented on system-level in our region in 2018 (25). The aim of the current study was to evaluate the effect of this intervention on an individual patient level. The study explores place of care prior to death and place of death for patients with incurable cancer who either did or did not have an organized ACP conversation and a documented structured palliative plan in a primary health care settings. We hypothesized that patients with an ACP conversation and a palliative plan in primary healthcare spent more time at home at the EoL and more often died at home.

Study design

The study was designed as a prospective controlled non-randomized intervention trial. Participants were recruited between 2015 and 2020 from nine municipalities with 67.000 inhabitants in Møre og Romsdal county, North-Western Norway.

Setting

Molde Hospital is a local hospital with an oncology outpatient clinic and a hospital-based PC team. The municipalities in the catchment area of Molde have between 3.000 and 25.000 inhabitants and collaborate with Molde Hospital. Community cancer nurses in the municipalities have expertise in PC and offered support to patients and family caregivers on top of the support from general practitioners (GPs) and home-care nurses, the patient normally gets, before, during and after the study period. All cancer patients have access to the hospital-based PC team on referral from hospital or primary health care, based on needs and symptom burden. The PC team performs home visits in the municipalities upon request and provides education and support for the patients and their families. The local PC team and cancer outpatient clinic collaborates with nurses from all municipalities within a PC network and undertake education conferences at least once a year. PC physicians from the hospital also collaborate with GPs through visits at the GP offices, common patient visits at home or nursing home and through bi-annual training courses within general PC. Since 2015, home care nurses, nurses at nursing homes and GPs in the municipalities can contact a hospital PC physician by phone 24/7. Before 2015, three municipalities had implemented “Last days of life” (former Liverpool care pathway (26)), a structured guidance in Norway for PC in the last days and hours of life (27). These three municipalities cover 20.000 inhabitants. There was no hospice in the region during the study period.

Participants

The current study included cancer patients who could read and write Norwegian and: 1) had advanced loco-regional cancer and/or metastatic disease, 2) were > 18 years of age residing in one of the participating municipalities, and 3) were able to comply with study procedures. Patients treated with curative intent were excluded. The patients were identified through their contact with the local hospital, cancer outpatient clinic or hospital-based PC team.

Patients for the control group were included from the participating municipalities from June 2015 to December 2017, before the systematic implementation of ACP conversations and a structured palliative plan. Patients for the intervention group were included from September 2018 to March 2020, after the implementation. Community cancer nurses informed the local PC team about all cancer patients who had an ACP conversation in primary health care and they asked the eligible patients if a study contact (BD) from the hospital could contact them to explain the current study.

Observation period was from June 2015 to March 2022 for all patients (FIG 1).

Implementation of organized ACP conversations and a structured palliative plan

In 2018, primary health care in Møre og Romsdal county started providing organized ACP conversations and a structured palliative plan to consider patients’ wishes and preferences towards future health care. The implementation strategy consisted of affiliation of ACP to primary health care, information, education and training, supporting tools and collaboration with specialist health care, and was based on a cooperation agreement between the municipalities in the county and Møre og Romsdal Hospital trust.

From January to June 2018, nurses and physicians in primary health care were trained in planning and organizing ACP conversations and documenting conclusions as a palliative plan. A standardized template for a palliative plan was made available in the electronic patient journal (EPJ), an ACP conversation guide and an information video were published on the related website (28). Physicians from the hospital-based PC team informed GPs through visits at the GP offices and through training courses within general PC. Community cancer nurses were trained during one day conferences within the established PC network and were responsible for spreading the information among home care nurses in their municipality. Information flyers for health care providers and patients were distributed, which helped to prepare and support ACP conversations and a structured palliative plan on individual patient level. Implementation procedures described how to summarize and document the palliative plan in the EPJ, including the possibility to send the plan electronically to any future health care provider involved in the treatment of the patient in our region (25).

The goal of the implementation process was that primary health care providers should offer an ACP conversation and a palliative plan to all patients with life-limiting illnesses like non-curable cancer. The local hospital-based PC team recommended ACP conversations and palliative plan in primary health care for all palliative cancer patients in discharge and outpatient summaries. The primary health care providers received necessary information about the patients, like medical status and prognosis, from specialist health care.

Intervention (I) group

Patients in the intervention group received an organized ACP conversation with a conclusive and structured palliative plan in primary health care setting.

The participants had information about the intention of the conversation. Confirmed conclusions were documented as a structured palliative plan in community EPJ with consent from the patient. Follow-up of ACP conversation was offered and the palliative plan was reassessed on demand when the patient’s medical condition changed.

Primary health care providers, mostly community cancer nurses but also home care nurses and GPs, decided if and when the patient should be offered an ACP conversation, and they were responsible for organizing and conducting it. They organized the conversation at the patients preferred place, proposing the possibility of having it at home (25).

Control (C) group

The control group consisted of cancer patients who did not have an organized ACP conversation with a conclusive and structured palliative plan in primary health care setting.

Data collection

Longitudinal data were collected through paper-based case report forms (patients’ self-report and health care providers’ report) as part of the data collected in the Orkdal Model Study (ClinicalTrials.gov Identifier: NCT02170168) in collaboration with nine community nurses and The Trial Office, Trondheim University Hospital. Additional data were extracted from hospital and municipality EPJ.

Information on patient demographics, cancer diagnosis and prognosis, place of care, quality of life and performance status was registered at inclusion and collected every four weeks during observation. Use of hospital services, admissions, use of community health care services, and date and place of death were recorded and verified, especially for the last 90 days of life for those patients who died within the observation period. Number of days the patient was not admitted to hospital or nursing home was counted as “days at home”. Whole day stays at outpatient clinics like the oncology unit were not included as hospital stays. Contact with the hospital-based PC team was verified by documentation in hospital EPJ.

The patients responded to questionnaires at inclusion, every four weeks for two years, and thereafter every six months or until death. Data on quality of life (QoL) were collected (EORTC QLQ C15-PAL last question rated 1 = very poor to 7 = excellent) (29). Furthermore, every 12 weeks the patients stated preferred place of death (PPOD). The question was formulated: “We know from experience that you might change your mind over time. We would like to get your opinion about the next questions again, independently of what you have answered earlier.” 1)”Many people, both healthy and ill, think about where they in time would like to die. When that time comes, and you yourself could choose, where would you prefer to die?” Last responses before death were used to analyse if PPOD was the actual place of death (APOD).

Data on cancer deaths and place of death for the Romsdal region were obtained from the Norwegian Cause of Death Registry (DÅR 18–0503) to get information about pre-study number of cancer deaths at home in our region.

Outcomes

Primary outcome was number of days spent at home during the last 90 days of life.

Secondary outcomes were the proportion of place of death in different settings (home, nursing home or hospital), PPOD and fulfilment of PPOD for those who died during the observation period, number of days at nursing home or in hospital and number of hospital admissions during the last 90 days of life.

Data analyses and statistics

Descriptive statistics were used to summarize gender, age, education, living together with partner (yes/no), physician-reported estimated survival at inclusion (between 1 and 6 months, between 6 and 12 months, more than 1 year, between 1 and 5 years), Karnowsky index, QoL 1–7, number of days at home, in nursing home or in hospital, PPOD and APOD, hospital admissions, ACP conversations and palliative plans in primary health care, GP home visits, and contact with the hospital-based PC team.

An independent two-sided t-test was used to examine differences in age, Karnowsky index at inclusion and follow up and number of days at home, in nursing home or in hospital, between the two groups. Comparison analyses between the groups according to gender, education, living together with partner, estimated survival time at inclusion, QoL 1–7, GP home visits, contact with the hospital-based PC team, PPOD and APOD were assessed by Pearson`s chi square test.

Logistic regression was performed to examine the effects of ACP and palliative plan on the likelihood that participants would die in primary health care, adjusted for age, gender, and education.

In all cases, two-sided p values < 0.05 were considered statistically significant. All statistical analyses were performed by using IBM SPSS Statistics version 28 (IBM Statistical Product and Service Solutions, Armonk, USA).

Ethics

The study was performed in accordance with the relevant guidelines and regulations from the Declaration of Helsinki and was approved by the Regional Committee for Medical and Health Research Ethics (ID 2014/212) and the Cancer Department at Møre and Romsdal Hospital Trust. All participants provided informed consent prior to participation in the study.

One hundred and fifty-one cancer patients were included in the current study, 82 patients in the intervention (I) group and 69 in the control (C) group (FIG. 1).

Seventy-six patients were included before systematically implementation of organized ACP conversation with a structured palliative plan in primary health care. Of these, seven patients got an ACP conversation and palliative plan after implementation and became part of the intervention group. Seventy-five patients were included after implementation, mean 24 days (SD 37) after they got their palliative plan.

Most of the 82 ACP conversations took place at the patients’ home (85%), in addition to at the GPs office (10%), in nursing home (4%) or in hospital (1%). Participants in the ACP conversations were patients (100%), relatives (90%), community cancer nurses (81%), GPs (55%), home-care nurses (33%) and hospital-based PC team members (28%). Twenty-seven percent of the ACP conversations took place without a physician present. All palliative plans were verified and confirmed by the patients’ GP. The 74 patients who died in I group had their palliative plan mean 236 days before death (SD 228). Patients with a palliative plan in primary health care had significantly more often home visit from their GP (p < 0.001, Table 1).

At inclusion, patients in the I group were significantly older, had shorter expected survival time, reported lower QoL and had a lower Karnowsky index score compared to patients in the C group. QoL and Karnowsky index score were not significantly different between the groups during follow up. There were no statistically significant differences between the two groups regarding gender, educational level or living together with partner. Among patients who died in the observation period the number of days from inclusion to death was significantly lower in the intervention group (Table 1).

Table 1

Patient characteristics
Patient characteristics	with ACP and Palliative Plan			Controls
	N=			N=			p
Age, mean years (SD)	82	71.3	(10.1)	69	67.9	(8.4)	0.027^a
Sex	82			69			0.688^b
Female		33	40.2%		30	43.5%
Male		49	59.8%		39	56.5%
Educational level	75			50			0.613^c
Lower than high school		27	36.0%		14	28.0%
High school		29	38.7%		23	46.0%
University		19	25.3%		13	26.0%
Living together with partner	81			51			0.832^d
Yes		57	70.4%		35	68.6%
No		24	29.6%		16	31.4%
Estimated survival time	82			69			< 0.001^e
between one and 6 months		30	36.6%		2	2.9%
between 6 and 12 months		23	28.0%		11	15.9%
more than one year		19	23.2%		13	18.8%
between one and 5 years		10	12.2%		43	62.3%
Karnofsky PS inclusion, mean score (SD)	82	75.9	(13.3)	69	88.0	(8.3)	< 0.001^f
Karnofsky PS last follow up, mean score (SD)	80	47.4	(18.4)	68	50.4	(22.8)	0.366^g
QoL 1–7 inclusion, mean score	77	4.5		52	5.0		0.037^h
QoL 1–7 last follow up, mean score	46	4.8		56	4.5		0.227ⁱ
GP home visits	82			69			< 0.001^j
Yes		64	71.9%		25	28.1%
No		18	29.0%		44	71.0%
Days from inclusion to death	74	309	(343.2)	61	468	(500.5)	0.029^k
^aIndependent two-sided t-test for differences in Age (t(149) = -2.24, p = 0.027, 95% CI (-0.687 – -0,042))
^bPearson chi square test for differences in Gender (X² (1, n = 151) = 0.161; p = 0.688)
^cPearson chi square test for differences in Educational level (X² (2, n = 125) = 0.987; p = 0.613)
^dPearson chi square test for differences in Living together with partner yes/no (X² (1, n = 132) = 0.045; p = 0.832)
^ePearson chi square test for differences in Estimated survival time at inclusion (X² (3, n = 151) = 49.66; p < 0.001)
^fIndependent two-sided t-test for differences in Karnowsky index at inclusion (t(149) = 6.55, p < 0.001, 95% CI (0.726–1.411))
^gIndependent two-sided t-test for differences in Karnowsky index last follow up (t(149) = 2.29, p = 0.366, 95% CI (-0.175–0.473))
^hPearson chi square test for differences in QoL 1–7 at inclusion (X² (6, n = 129) = 13.36; p = 0.037)
ⁱPearson chi square test for differences in QoL 1–7 last follow up (X² (6, n = 102) = 6.91; p = 0.227)
^jPearson chi square test for GP home visits, yes or no (X² (1, n = 151) = 27.08; p < 0.001)
^kIndependent two-sided t-test for differences in Days from inclusion to death (t(133) = 5.10, p = 0.029, 95% CI (0.038–0.722))

During the observation period, overall 135 patients died. Of these 135, 74 patients had an ACP conversation and a structured palliative plan primary health care (I group) and 61 had not (C group) (FIG. 1).

Primary outcomes

During the last 90 days of life, there were no statistically significant differences between the groups with or without the intervention regarding days at home (Table 2).

Table 2

Place of care last 90 days of life and place of death
Place of care and death	with ACP and Palliative Plan			Controls
	N=			N=			p
Place of care last 90 days of life	74			61
home, mean days (SD)		63.4	(24.8)		64.5	(26.8)	0.866^l
nursing home, mean days (SD)		15.1	(23.2)		11.0	(24.0)	0.320^m
hospital, mean days (SD)		11.5	(11.1)		14.4	(14.1)	0.183ⁿ
Place of death	74			61			0.014^o
home		25	33.8%		18	29.5%
nursing home		37	50.0%		22	36.1%
hospital		12	16.2%		21	34.4%
Hospital admissions last 90 days	74			61			0.363^p
Mean admissions (SD)		2.03	(1.47)		2.26	(1.51)
^lIndependent two-sided t-test for differences in days at home (t(133) = 0.255, p = 0.799, 95% CI (-0.295–0.383))
^mIndependent two-sided t-test for differences in days at nursing home (t(133) = − 0.998, p = 0.320, 95% CI (-0.512–0.167))
ⁿIndependent two-sided t-test for differences in days in hospital (t(133) = 1.337, p = 0.183, 95% CI (-0.109–0.571))
^oPearson chi square test for differences in dying in primary health care (home/nursing home) or hospital (X² (1, n = 135) = 6.00; p = 0.014)
^pIndependent two-sided t-test for differences in admissions in hospital (t(133) = 0.912, p = 0.363, 95% CI (-0.275–0.747))

Secondary outcomes

Data from the Norwegian Cause of Death Registry showed a pre-study average number of 154.4 deaths of cancer per year in the nine participating municipalities, the average proportion of death at home was 12.4% for cancer patients (DÅR 18–0503, years 2011–2015).

Table 2 and Fig. 2 summarize differences between I and C group in place of care and number of hospital admissions the last 90 days of life, and place of death. The proportion of APOD showed significant differences between the two groups (X² (2, n = 135) = 6.21; p = 0.045). Dying at home / nursing home was significantly more common for patients with the intervention (83.8% vs 65.6%, p = 0.014, Table 2). Patients without the intervention were more likely to die in hospital. The probability of dying in hospital for a patient without the intervention was more than two times higher than for a patient with the intervention; N = 135, RR = 2.123 (95% CI: 1.14–3.96).

Since a significantly higher proportion in the I group died at home or in nursing home, a logistic regression was performed to examine the effects of palliative plan on the likelihood that participants die in primary health care, adjusted for age, gender, education and living situation. The model explained 14.0% (Nagelkerke R²) of the variance in death in primary health care and correctly classified 82.0% of cases. An ACP conversation and palliative plan in primary health care had a significant impact on whether patients died in primary health care (Wald X² (1, n = 110) = 4.16; p < 0.041). Age (Wald X² (1, n = 110) = 0.19; p = 0.664), gender (Wald X² (1, n = 110) = 0.67; p < 0.415), education (Wald X² (2, n = 110) = 2.23; p = 0.229) and living together with partner (Wald X² (1, n = 110) = 0.92; p = 0.339) did not affect if patients died in primary health care or hospital.

Contact with the hospital-based PC team had 80 patients in the I group (97.5%) and 52 patients in the C group (75.4%). Contact with the hospital-based PC team did not affect if patients died in hospital or home / nursing home (X² (1, n = 135) = 0.92; p = 0.34). But patients who had contact with hospital-based PC team were significantly more likely to have a palliative plan in primary health care (X² (1, n = 151) = 16.79; p < 0.001). Sixty-nine patients (84%) in I group and 69 patients (100%) in C group had one or more oncology treatments at the local cancer outpatient clinic.

From 122 patients who stated a PPOD (last statement during observation), 75 (61.5%) wanted to die at home, 18 (14.8%) in nursing home, 18 (14.8%) in hospital and 11 (9,0%) at other places. There were no statistically significant differences between the two groups (I and C) (X² (3, n = 122) = 3.69; p = 0.297). We achieved a stated PPOD and APOD on 109 patients and observed differences between the groups in fulfilment of PPOD (last), 42,2% in I group and 26,7% in C group, but this did not reach statistical significance (X² (1, n = 151) = 2.77; p = 0.096). Among 109 patients who died and reported PPOD, 13 patients (12%) changed their preference during follow up (first and last PPOD).

In this prospective controlled non-randomized intervention trial, we evaluated the effect of ACP conversations and a conclusive palliative plan in primary health care on individual level for cancer patients. There was no difference between the groups regarding time spent at home last 90 days of life. However, having an ACP conversation and a palliative plan in primary health care had an impact on where the patients died. Patients in the intervention group more frequently died at home or in nursing homes and less frequently in hospital. Regarding fulfilment of preferred place of death, there was a tendency towards more frequent fulfilment for patients in the intervention group.

In literature, the chosen time frame for analyses of hospital utilization or time at home at EoL ranges between 180 and 30 days before death. The regional variation in the amount of time dying cancer and non-cancer patients in the United States spent at home during the last 180 days of life was between 120 days (67%) and 146 days (81%) (20). Costantini et al. (30) found that differences between groups with or without palliative home care teams were most marked in the last month of life were patients spent between 19% and 30% of their last days in hospital. In a former retrospective analysis we found that palliative cancer patients with an ACP conversation in primary health care spent more days at home the last 90 days of life (25). In the current study, cancer patients spent 70,4% (intervention group) and 71,7% (control group) of their last 90 days of life at home, and 12,3% ( intervention group) and 16,0% (control group) of their last 90 days in hospital. In contrast to our hypothesis, patients with the structured ACP intervention did not spend significantly more time at home the last 90 days of life compared to the control group. Launching the ACP project in 2015 with information of the local PC network and involvement of the hospital-based PC team may have contributed to more focus on the principles of ACP and home care as preferred place of care already before organized ACP conversations and a structured palliative plan were systematically implemented in 2018. All patients in the control group and the majority of patients in the intervention group got oncology treatment at the local cancer outpatient clinic. Nurses at the outpatient clinic knew and collaborated with all community cancer nurses in our region, which may have contributed to early access to community cancer nurses for patients in both groups.

In Norway EoL cancer care seemed to be hospital-centric with high expenditures and more hospital days the last 180 days of life (31). Assareh et al. (32) found that the majority of individuals aged 50 or older who received palliative care in hospital within 3 months to death, stayed in hospital until death. By establishing a home-based program, palliative care can successfully expand outside hospital walls to serve a high need patient population with lower costs in the last three months of life (33). A shift of care delivery from inpatient to outpatient and at home cares, and improved community care support may help reduce hospitalizations in EoL care (34, 35). A well-integrated ACP and cancer palliative care plan approach can be very effective in reducing the percentage of patients spending many days or dying in hospital (36, 37). The current study demonstrated a significant decrease of cancer deaths in hospital for patients with an ACP conversation and a structured palliative plan in primary health care. Patients with the intervention had significantly more often GP home visits. We believe that a key factor for less cancer deaths in hospital in this study is the affiliation of ACP and palliative plan to primary health care with involvement of the GPs.

Cohen et al. (23) compared six developed countries and found that the percentage of all cancer deaths in 2003 occurring at home was 12.8 in Norway, 22.1 in England, 22.7 in Wales, 27.9 in Belgium, 35.8 in Italy, and 45.4 in the Netherlands. In the current study, the proportion of home death among cancer patients is high (33,8% in intervention group and 29,5% in control group) compared to the pre-study period (12,4%) and compared to Norway in general (16% in 2021) (38). The overall high number of home deaths is most likely due to an established network within PC in primary health care developed over the last 12 years, and the ongoing collaboration with the hospital–based PC team in the Romsdal region during the whole study period. Individual patient support from the hospital-based PC team did not affect place of death but patients who had contact with the PC team were more likely to have a palliative plan in primary health care. By actively supporting a structured transition of care from hospitals to communities, specialist health care can contribute to a decrease in hospital deaths (39, 40).

Most patients express that they want to receive information on the disease process and they are willing to talk about what is important at the EoL, when they are asked (41). Meeting the preferences of patients is considered an important palliative care outcome (21). Most cancer patients prefer to die at home, more or less dependent on cultural influence (42–44). The APOD is often not at home, especially in Norway (22). ACP improved the fulfilment of patients’ PPOD in a randomised study of elderly patients with various diagnoses (45). In a RCT Skorstengaard et al. (46) found no significant differences in fulfilment of PPOD (52% vs 35%) between cancer patients with or without ACP but they found a significant difference in APOD favouring home death in the ACP group (40% vs 17%). The degree of congruence between the preferred and actual place of death is often unsatisfactory (47). We assume that decision making about best suitable place of care and death is easier with clarification of the patients’ preferences and appropriate and available documentation. Affiliation of the ACP process to primary health care helps to establish medical relationship in accordance with patients’ preferences. Recommendations for practical use helped to offer ACP to as many palliative cancer patients and their families as possible in our region (25). There might be a potential to raise the fulfilment of PPOD for cancer patients (42.2% in intervention group and 26.7% in control group in the current study) by focusing even more on the possibility for home as place of death, if wanted by the patient.

Appraisal of methods

A long observation period was important to be able to follow as many patients as possible through the whole course of disease. However, a long study period makes temporal trends more likely to occur (48). In the intervention group, health care staff in primary health care was working with a clear definition and practice guideline for organizing and conducting ACP conversations and documenting these within an electronically available palliative plan. In the control group patients and relatives might also have had conversations with community cancer nurses and their GP around preference for care and PPOD without summarizing conclusions within a palliative plan. In addition, patients included before implementation on system-level, later could get the intervention on an individual level. This resulted in cross-over to intervention group for seven patients.

Patients were identified independently of which cancer diagnosis they had. The patient cohort was drawn in a small local cancer population, which limits its generalizability to other populations, organizational systems, and communities.

A RCT or a cluster-randomized trial were not feasible due to small-scale conditions and the already established and ongoing medical relationship between patients, GPs and community cancer nurses. Primary health care providers decided if and when a patient was offered an ACP conversation, selection bias especially from community cancer nurses might have influenced the observed findings. Patients in the intervention group were more advanced in their course of disease at inclusion compared with the control group. However, the patients were included mean 309 days (intervention group) and 468 days (control group) before death. We assume that the proportion of place of care the last 90 days of life and place of death were not influenced by later inclusion in course of disease in the intervention group.

Implications for future work

In the current study we focused on the impact of an individual patient-centred systemic ACP intervention in primary health care. GPs and community nurses are often the health care providers that patients and families rely on when exploring their values and preferences (49). Beside the general recommendation to offer ACP to all advanced cancer patients, primary health care providers need practical guidance to overcome barriers in initiating the necessary communication and to use a routine approach with a flexible structure (15).

Future research should explore the implementation on system level and measure the impact of ACP by describing and analysing what has been done in “real life” ACP.

Early integrated palliative care in oncology treatment needs to address patients' preferences. Health care providers have the responsibility to help the patients to formulate their preferences based upon patients' own values to improve care consistency with care preferences. ACP may be a possible approach to reach a better fulfilment in terms of for example preferred and actual place of death, also for cancer patients. Larger scaled studies and research focusing on which components are important to meet cancer patients' preferences are needed.

This prospective controlled non-randomized intervention trial demonstrated that a well-integrated ACP and palliative care plan approach in primary health care decreased cancer deaths in hospital. The hospital-based PC team supported primary health care providers to initiate communication about ACP. Patients with the ACP intervention did not spend more time at home at the end of life compared to the control group.

The findings in this study provide important information on our way towards a home model within oncology palliative care by integrating PC into the framework of primary health care disease management.

ACP

Advance care planning

APOD

Actual place of death

Control

EoL

End-of-Life

EPJ

Electronic Patient Journal

General Practitioner

Intervention

Palliative care

PPOD

preferred place of death

Relative Risk

Ethics approval and consent to participate

The study was performed in accordance with the relevant guidelines and regulations from the Declaration of Helsinki and was approved by Regional Committee for Medical and Health Research Ethics (ID 2014/212) and the Cancer Department at Møre and Romsdal Hospital Trust. All participants provided informed consent prior to participation in the study.

Consent for publication

Not Applicable.

Availability of data and material

The dataset supporting the conclusions of this article and a detailed information about these data is included within the article as additional file.

Competing interests

The authors declare that they have no competing interests.

Funding

Implementation of ACP conversation and palliative plan in Møre and Romsdal county was funded by the Norwegian Directorate of Health. The attended scientifically evaluation was supported by the European Palliative Care Research Centre (PRC), St. Olavs’ Hospital Trondheim University Hospital, Møre and Romsdal Hospital Trust and Norwegian University of Science and Technology (NTNU). The funding sources were not involved in preparation of the article.

Authors' contributions

BD performed study procedures, analysis of data and was responsible for drafting and editing of the manuscript. ATB was responsible in the conception and design of the study, interpretation of the data, and took part in drafting and editing the manuscript. BTP participated in the conception and design of the study and revising the manuscript. TH participated in the analysis and interpretation of the data and revising the manuscript. KES participated in the conception of the study and revising the manuscript. All authors read and approved the final manuscript.

Acknowledgements

We would like to express our special thanks to the statistician from Møre og Romsdal hospital trust, Tor Åge Myklebust, for his expertise and assistance during analysis of data. We are grateful to the following study nurses at Molde Hospital and in the communities for their help in collecting data about ACP conversations and palliative plans; Randi Sunde, Liv Skjørsæther, Camilla Bugge Skåren, Camilla Søvde, Rita Skjegstad, Bente Winsjansen, Inger Anne Øyen, Marit Tangen Nautnes, Anita Støve and Ragnhild Eriksson. This project would not have been possible without the engagement of primary health care, including the GPs, within implementing ACP in our region.

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No competing interests reported.

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Advance care planning and a structured palliative plan in primary health care decrease cancer deaths in hospital: A prospective controlled non-randomized intervention trial

Status:

Version 1

Abstract

Figures

Introduction

Methods

Study design

Setting

Participants

Implementation of organized ACP conversations and a structured palliative plan

Intervention (I) group

Control (C) group

Data collection

Outcomes

Data analyses and statistics

Ethics

Results

Primary outcomes

Secondary outcomes

Discussion

Appraisal of methods

Implications for future work

Conclusion

Abbreviations

Declarations

References

Additional Declarations

Supplementary Files

Status:

Version 1