Background. Aim. Design and setting. Method. Results. Conclusion. Keywords

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1 Research Ebun A Abarshi, Michael A Echtel, Lieve Van en Block, Gé A Donker, Luc Deliens an Bregje D Onwuteaka-Philipsen Recognising patients who will ie in the near future: a nationwie stuy via the Dutch Sentinel Network of GPs Abstract Backgroun Recognising patients who will ie in the near future is important for aequate planning an provision of en-of-life care. GPs can play a key role in this. Aim To explore the following questions: How long before eath o GPs recognise patients likely to ie in the near future? Which patient, illness, an care-relate characteristics are relate to such recognition? How oes recognising eath in the near future, before the last week of life, relate to care in uring this perio? Design an setting One-year follow-back stuy via a surveillance GP network in the Netherlans. Metho Registration of emographic an care-relate characteristics. Results Of 252 non-suen eaths, 70% occurre in the home or care home an 30% in hospital. GP recognition of eath in the near future was absent in 30%, an occurre prior to the last month in 15%, within the last month in 19%, an in the last week in 34%. Logistic regression analyses showe cancer an low functional status were positively associate with eath in the near future; cancer an iscussing palliative care options were positively associate with recognising eath in the near future before the last week of life. Recognising eath in the near future before patients last week of life was associate with fewer hospital eaths, more GP patient contacts in the last week, more eaths in a preferre place, an more-frequent GP patient iscussions about specific topics in the last 7 ays of life. Conclusion Recognising eath in the near future precees several aspects of en-of-life care. The proportion in whom eath in the near future is never recognise is large, suggesting GPs coul be assiste in this process through training an implementation of care protocols that promote timely recognition of the ying phase. Keywors eath; general practitioner; home care; primary care; recognition of ying phase; terminal care. INTRODUCTION Due to ageing an multiple progressive illnesses, patients facing the en of life at home are growing in number. 1 Regarless of isease, timely ientification of these patients is vital in the planning an provision of appropriate en-of-life care. 1,2 The complexity of using the ying phase in nonacute situations is such that it is often unclear when the en of life starts. Depening on the trajectory of non-suen ying, there coul be a short perio of evient ecline (cancer), a perio of longterm limitations with intermittent crises (organ failure), or a perio of steay ecline (frailty). By an large, patient nees iffer epening on which of these trajectories they encounter. 3 GPs can play an important role in ientifying when patients will ie. They are involve in home visits, treatment provision, treatment choices, an en-of-life ecisions concerning the place an type of care. Realising that a patient will ie in the near future has important repercussions for the care given, such as the control of aggressive iagnostic interventions, acceleration of comfort care, an alignment of care with patient wishes. 4 Given the EA Abarshi, MD, executive researcher; MA Echtel, PhD, senior researcher; BD Onwuteaka-Philipsen, PhD, professor of enof-life research, The EMGO Institute for Health an Care Research (EMGO+), Department of Public an Occupational Health, an Palliative Care Expertise Centre, VU University Meical Centre, Amsteram, The Netherlans. L Van en Block, PhD, senior researcher, En-of-Life Care Research Group, Ghent University an Vrije Universiteit Brussel, an Department of General Practice, Vrije Universiteit Brussel, Brussels, Belgium. GA Donker, MD, PhD, projectleaer CMR Sentinel stations NIVEL, Netherlans Institute of Health Services Research, Utrecht, The Netherlans. L Deliens, PhD, professor of public health an palliative care, The EMGO Institute for Health an Care Research (EMGO+), Department of Public an Occupational Health, an Palliative Care increasing incience of cancer, congestive heart failure, ementia, an other lifelimiting conitions in general practice, 5 7 GP care at the en of life is pivotal, 8,9 particularly for patients who choose to ie at home, 7 9 an many o. 10 Timely awareness of eath in the near future has been associate with fewer hospitalisations, more palliative care referrals, an better bereavement ajustment. 11,12 However, not much is known about GPs recognising the final phase in patients who ie at home, 13 especially among those with non-malignant iseases. 14 The ability to ientify patients in the final phase of life, accoring to Anersen s behavioural moel on access to meical care, is a behavioural trait or practice which coul be learne. 8,15 Also, previous literature suggests certain characteristics may influence recognition of patients eath in the near future. 16,17 However, relate stuies have been limite to specific settings, 16,18,19 iagnoses, 16,20,21 age groups, 17,21 an functional states. 17,22 To the best of this stuy s knowlege, this is the first nationwie stuy that examines the timing of an the factors associate with recognising eath in the near future from a general patient population. Expertise Centre, VU University Meical Centre, Amsteram, The Netherlans an En-of-Life Care Research Group, Ghent University an Vrije Universiteit Brussel, Brussels, Belgium. Aress for corresponence Ebun Abarshi, The EMGO Institute for Health an Care Research (EMGO+), VU University Meical Center, van er Boechorststraat 7, 1081 BT, Amsteram, The Netherlans. ebun.abarshi@vumc.nl Submitte: 2 September 2010; Eitor s response: 5 October 2010; final acceptance: 29 October British Journal of General Practice This is the full-length article (publishe online 31 May 2011) of an abrige version publishe in print. Cite this article as: Br J Gen Pract 2011; DOI: /bjgp11X e371 British Journal of General Practice, June 2011

2 How this fits in GPs can play an important role in the timely recognition of patients who will ie soon, but nationwie research exploring how often they o so is scarce. The results of this stuy show that cancer is still the main reason for recognising eath in the near future, an recognising eath in the near future precees several aspects of en-oflife care. The relatively large number of patients for whom eath in the near future is never recognise suggests that GPs can be assiste in this process by training or by implementing care protocols that promote timely recognition of the ying phase. In this paper, the timing an extent of recognising eath in the near future an its correlates are explore in those who ie non-suenly or unexpectely, using a nationwie representative surveillance network of GPs. The following three research questions are aresse: How long before eath o GPs recognise patients likely to ie in the near future? Which patient, illness, an care-relate characteristics are relate to such recognition? How oes recognising eath in the near future, before the last week of life, relate to care in uring this perio? METHOD Selection an proceure Between 1 January an 31 December 2008, ata of patients were collecte in a sentinel network of GPs, an epiemiological surveillance system that is representative by age, sex, geographic istribution, an population ensity of all GPs practising in the Netherlans. 23,24 The network covers close to 1% of the entire registere patient population. On average, it comprises GPs who work singly or in groups, within 45 practices nationwie. The current stuy is part of a series of stuies beginning in 2005 as a nationwie mortality follow-back stuy. 25,26 In 2008, a structure registration form was sent to all sentinel GPs, requesting them to provie information on all ecease patients age 1 year or oler in relation to the care they receive in the last 3 months of life. Of the 405 registere eaths, 129 suen an totally unexpecte patients were exclue, as well as six who ha spent most of their last year outsie home or care home, one with >70% values missing, an 17 who ie in a Dutch nursing home. In the Netherlans, GPs manage primary care for those at home an in resiential care facilities, but han over care once the patient is move to a Dutch nursing home. Data collection The ata-collection process was performe by NIVEL (the Netherlans Institute of Health Services Research), using a stanarise protocol. 24 Complete forms were sent by each sentinel GP to NIVEL, where the forms were scrutinise closely for errors an missing ata. When possible, missing ata were retrieve by telephone contact. Next, the forms were sent to the researchers for ata entry an analyses. Because the registration forms were not uniquely ientifiable, the researchers ha access to neither the patients nor the GPs ientities. More etails on this methoology have been publishe elsewhere. 26 Research instrument The 21-question registration form consiste of multiple-choice an open-response questions esigne to assess emographics, cause of eath, an the following patient an en-of-life care characteristics: involvement of a multiisciplinary palliative care team; number of hospital an/or intensive care unit (ICU) amissions in the last 3 months of life; GP home visits an personal contact (excluing telephone calls) mae in the last 3 months, last 2 4 weeks, an within the last week of life; GP home visits to family members an relatives after the bereavement; presence of ementia an/or coma in the last week of life; symptom frequency an istress in the last week of life using the Memorial Symptom Assessment Scale; 27 functional state in the last week of life using the Eastern Cooperative Oncology Group (ECOG) performance status; 28 the GP s awareness about the patient s preferre place of eath an/or other specific wishes; GP patient communication about iagnosis, prognosis, incurability of illness, an treatment options; an the timing of the GP recognising eath in the near future. The forms were teste rigorously for comprehensibility, an pilot teste among GPs in orer to ensure that the participating GPs unerstoo the items as intene. 1 The main question, How long before this patient s eath i you recognise that the patient woul ie in the near future?, was assesse as never recognise, versus recognise in the last week, the last British Journal of General Practice, June 2011 e372

3 Table 1. Characteristics associate with recognising/not recognising eath in the near future in patients who ie non-suenly at home/in a care home, n = 252 a Logistic regression b (os ratio Di not recognise Recognise eath [95% CI]) Patient an Total eath in the near in the near future Univariate Multivariate care characteristics % future (n = 72), % (n = 175), % analyses analyses c Age, years (0.4 to 1.8) (0.4 to 1.9) Sex Male Female (0.9 to 2.6) Eucation Elementary Seconary (0.9 to 2.6) Tertiary (0.8 to 5.4) Dutch nationality 1 parent parent (0.4 to 5.8) Cause of eath Cancer Not cancer (0.1 to 0.4) 0.18 (0.1 to 0.4) Dementia iagnose by a physician No Yes (0.4 to 2.3) Relate symptoms an functional state before eath Comatose No Yes (0.3 to 1.2) Lack of appetite No Yes (1.9 to 8.8) Lack of energy No Yes (1.3 to 10.6) Pain No Yes (0.7 to 2.8) Difficulty breathing No Yes (0.7 to 3.0) Anxiety No Yes (0.4 to 2.0) Low functional status capable of only limite self-care (ECOG score 4) e No Yes (2.5 to 11.5) 5.21 (2.3 to 11.7) ECOG = Eastern Cooperative Oncology Group. a Inclues five missing values; percentages of missing observations variables range between 0.4% an 5.6%. b Depenent variable: patients in whom GPs ever recognise eath in the near future, n = 175; reference group: patients who ie without their GPs recognising eath in the near future, n = 72. c Stepwise backwars logistic regression. Variables remove after three steps of the backwar analyses. Significant values are in bol. Not entere/retaine following multiple backwars logistic regression analyses. e ECOG scale weeks, the last 2 3 months, an before the last 3 months. Statistical analysis All analyses were one using SPSS (version 15.0). Descriptive statistics on relevant variables were erive. To analyse which patient an care characteristics are relate to recognition of eath in the near future, univariate an multivariate logistic regression analyses were performe. This was one looking at ever versus never having recognise eath in the near future (Table 1), an for recognising eath in the near future before the patient s last week of life versus in the last week of life or never (Table 2). For this last analysis, care characteristics that occurre before the last week of life were chosen as inepenent variables: amitte in hospital in the last month of life, palliative care initialisation before the last week of life, an the GP iscussing several en-of-life issues before the last week of life. To analyse which care characteristics taking place after recognising eath in the near future were relate to this recognition, logistic regression analyses were performe with recognising eath in the near future as the inepenent variable (Table 3; never versus ever recognise). Depenent variables were care characteristics that concerne the last week of life. Patients for whom eath in the near future was recognise in their last week of life were omitte from this analysis, to ensure that in the analysis the recognition took place before the care characteristic. These analyses were controlle for the two patient characteristics that were foun to be relate to recognising eath in the near future: cancer an the patient s functional state (Table 1). RESULTS Incience an timing of recognising patients with likely eath in the near future A total of 252 patients were stuie who ha ie non-suenly in Excluing the 16 patients who ha ie elsewhere, 70% of the registere eaths took place at home or in a care home, while 30% occurre in a hospital or acute setting. Death in the near future was never recognise by a GP in 30% cases, in less than one-fifth of home an care-home eaths, an in about two-thirs of hospital eaths. Death was recognise before the last month, within the last month, an in the last week of life, in 15% 19%, an 34% respectively. Before or within the last month, eath in the near future was recognise more among patients who ie at home (23%), compare to those who ie in both care homes an hospitals (6%). In the last 4 weeks, eath in the near future was recognise more among patients at e373 British Journal of General Practice, June 2011

4 Table 2. Characteristics associate with recognising/not recognising eath in the near future before the last week of life in patients who ie non-suenly at home/in a care home, n = 252 a Logistic regression b os ratio Di not recognise Recognise eath (95% CI) Patient an care Total eath in the near in the near future Univariate Multivariate characteristics % future (n = 154), % (n = 93), % analyses analyses c Age, years (0.5 to 1.8) (0.2 to 0.9) Sex Male Female (0.5 to 1.5) Eucation Elementary Seconary (0.8 to 2.7) Tertiary (0.8 to 4.1) Dutch nationality 1 parent parent (0.9 to 7.5) Primary cause of eath Cancer Not cancer (0.1 to 0.4)0.29 (0.2 to 0.5) Dementia iagnose by a physician No Yes (0.2 to 1.0) Amitte to hospital an/or ICU in the last 30 ays of life No Yes (0.6 to 1.7) Palliative care initialisation (before the last week of life) No Yes (0.1 to 1.0) GP patient communication prior to the last week of life GP iscusse the iagnosis No Yes (1.1 to 3.3) GP iscusse the prognosis No Yes (1.5 to 4.7) GP iscusse the incurability No Yes (1.5 to 4.7) GP iscusse palliative care options No Yes (2.1 to 6.5)2.37 (1.3 to 4.4) ICU = intensive care unit. a Inclues five missing values; percentages of missing observations variables range between 0.4% an 5.6%. b Depenent variable: patients in whom GPs recognise eath in the near future before the last week of life n = 93, reference group: patients in whom GPs i not recognise eath in the near future before or in the last week of life n = 154 c Stepwise backwars logistic regression. Variables remove after three steps of the backwar analyses. Significant values are in bol. Not entere/retaine following multiple backwars logistic regression analyses. home (24%) an in a care home (23%), than among patients in hospital (8%). Across all the care settings, eath in the near future was recognise most frequently in the last week of life. Altogether, eath in the near future was never recognise three times as often among patients with cariorespiratory (36%) an other (43%) illnesses, compare to cancer (12%) (Figure 1). Characteristics associate with recognising eath in the near future Of the variables explore, age, sex, eucation, ethnicity, level of consciousness, an mental state i not appear to be associate with recognising eath in the near future. On univariate analyses, recognising eath in the near future was positively associate with a iagnosis of cancer, lack of appetite, lack of energy, an limite functional status. Multivariately, recognising eath in the near future was positively associate with a iagnosis of cancer an low functional status (Table 1). Characteristics associate with recognising eath in the near future before the last week of life Age, iagnosis of cancer, an iscussing iagnosis, prognosis, incurability, an palliative care options with the patient before the last weeks of life were associate positively with recognising eath in the near future before the very last week of life univariately. Multivariately, cancer eath an iscussing palliative care options maintaine a positive relationship with recognising eath in the near future before the last week of life (Table 2). Similar results were obtaine when the analyses were repeate for the perio up to 1 month before eath (not shown). Care characteristics that are relate to recognition of eath in the near future On correcting for cancer an functional status, recognising eath in the near future up to at least 1 week before patient s eath was relate to fewer hospital eaths, more GP patient contacts in the last week of life, more eaths in a preferre place, an more frequent GP patient iscussions about possible complications, physical complaints, psychological problems, an palliative care options in the last 7 ays of life (Table 3). DISCUSSION Summary GPs i not recognise eath in the near future in about one-thir of the non-suen eaths, an one-thir of the patients who ie at home (Figure 1). Patients who ie in hospital (versus elsewhere) ha the largest proportion of non-recognition. Last week recognition of eath in the near future was commonest in care-home eaths. Recognition of eath in the near future was strongly associate with ying from cancer (versus other iagnoses), an having limite functional state. Recognising eath in the near future before the last British Journal of General Practice, June 2011 e374

5 Table 3. Relationship between recognising eath in the near future before the last week of life an care characteristics in the last week of life, (n = 165) a Never recognise Recognise eath in eath in the near the near future before future before patient patient s last week Os ratio ie (n = 72), % (n = 93), % (95% CI) b Place of eath: hospital No (0.06 to 0.4) Yes Total Initiation of palliative care services in the last week No (0.6 to 73.1) Yes 9 91 Total Number of GP patient contacts in the last week of life (2 or meian) No (4.2 to 31.0) Yes 9 91 Total Dying in a preferre place No (1.4 to 14) Yes Total GP patient communication on specific en-of-life issues in the last week of life Possible complications No (1.1 to 8.5) Yes Physical complaints No (1.9 to 10.3) Yes Psychological problems No (1.0 to 6.4) Yes Total Social problems No (0.8 to 5.5) Yes Spiritual/existential problems No (0.5 to 41.3) Yes 9 91 Palliative care options No (1.6 to 14.7) Yes Total Treatment burens No (0.6 to 5.1) Yes a Excluing 82 in whom eath in the near future was recognise within the last week of life an five missing values. Percentages of missing observations variables range between 0.4% an 5.6%. b Correcte for cancer iagnosis an ambulant functional state. Significant levels in bol. week of life was associate with cancer, younger age (<85 years), an the GP iscussing iagnosis, prognosis, incurability, an palliative care options with patient. Care characteristics in the last week of life relate to recognising eath in the near future before the patient s last week were: fewer hospital eaths, more GP patient contacts, more eaths in a preferre place, an more frequent GP patient iscussions about possible complications, physical complaints, psychological problems, an palliative care options (Table 3). e375 British Journal of General Practice, June 2011

6 Funing boy This stuy is part of the Monitoring En-of- Life Care through the Sentinel network of GPs (SENTI-MELC) stuy a collaboration between VU Brussels, University of Ghent, University of Antwerp, the Belgian Scientific Institute of Public Health, the Netherlans Institute of Health Services Research, an VU Meical Centre Amsteram. It was supporte financially by the Belgian Institute for the Promotion of Innovation by Science an Technology in Flaners (grant no. SBO IWT ), as a strategic an comparative research project. The sponsors playe no role in the esign or conuct of the stuy; collection, management, analyses, or interpretation of the ata; or in the preparation, review, or approval of this manuscript. The corresponing author, together with the co-authors, ha full access to all the ata use, an have the final responsibility for the ecision to submit this manuscript for publication. Ethical approval An ethical review was not require by the Dutch law, since ata were collecte after the eath of patients. However, the stuy complie with the protocol an anonymity proceures of the Netherlans Institute of Health Services Research, an more etails on this are publishe elsewhere. 25 Provenance Freely submitte; externally peer reviewe. Competing interests The authors have eclare no competing interests. Acknowlegements We thank all the sentinel GPs in The Netherlans for participating in this stuy an for supplying all the ata use; also, Marianne Heshusius of The Netherlans Institute for Health Services Research (NIVEL) for supervising the collection process; an Piet Kostense of the EMGO+ Institute, for his statistical avice. Discuss this article Contribute an rea comments about this article on the Discussion Forum: Total (252) Home (110) Care home (54) Hospital (72) Hospice an other (16) Place of eath Strengths an limitations To the best of this authors knowlege, this is the first nationwie population-base stuy that has examine GP recognition of eath in the near future in patients whose eaths were non-suen. To prouce reliable results, nationally representative GPs were enliste from an existing surveillance network with a ata-collection an quality-assurance protocol, to minimise incomplete ata an GP recall bias. The stuy selecte a general patient population, all of whom, in principle, coul benefit from planne terminal care. The inepenent variables were selecte in such a way that they precee the epenent variables, in terms of timing. A retrospective collection was avantageous because all the eaths were capture upfront, unlike in prospective stuies where patients are sought base on iagnosis (cancer) or certain characteristics (pain, breathlessness), an rop-out rates are often high. 13 Although the expecte an non-suen categorisations may have been better unerstoo in retrospect, this limitation is a reality of clinical practice. However, it is possible that some GPs provie socially esirable responses, given the self-reporting nature of the stuy. Altogether, the exclusion of Dutch nursing home resients from this stuy calls for some caution in interpretation an generalisation of the results. Comparison with existing literature Murray et al emonstrate palliative care nees accompanying the three main illness trajectories. 3,20 Patients at home are Cancers (95) Cariorespiratory illnesses (76) Others (81) Cause of eath No recognition before eath Recognition <7 ays before eath Recognition 1 4 weeks before eath Recognition 1 3 months before eath Recognition >3 months before eath Figure 1. Recognition of eath in the near future in patients who ie non-suenly, by place an cause of eath, n = 252 (inclues 5 missing values; percentages of missing observations variables range between 0.4% an 5.6%). increasingly ying from a combination of these illness trajectories. McKinley et al highlighte the nee for GPs to be able to ientify the terminal phase of iseases uring their care of patients with nonmalignant iseases, that is, organ failure (acute eterioration an recovery) an frailty (prolonge ecline), base on the notion that such patients receive less care, perhaps ue to non-recognition of their terminal status. 14 The present results, like McKinley s, 14 show that eath in the near future was (five times) less recognise in patients with non-cancer versus cancer. However, the present ata associate recognising eath in the near future with fewer hospital eaths; it is possible the GPs i not recognise eath in the near future in many of the hospitalise patients because they cease to be involve in their care following amission. In Belgium, Van en Block et al reporte the institutionalise nature of ying, even among GP-manage patients with palliative care treatment goals. 30 Death in the near future was recognise earlier (before the last month) in patients at home than those in a care homes, an last week recognition was more common in care-home than home resients. Regarless of isease, non-recognition of eath in the near future was more common in patients who ie in a non-preferre place, experience less GP contact, an were less informe about their illness an other relate en-of-life issues, than similar patients in whom eath in the near future was recognise at least 1 week prior to British Journal of General Practice, June 2011 e376

7 eath. It coul be argue that an earlier recognition woul be even more esirable in conitions like heart failure an chronic obstructive pulmonary isease that have no curative treatment, an ementia, which lacks an accurate scale for such recognition. The results of the present stuy show recognition of eath in the near future in the last 7 ays to be associate with having cancer, having a low functional status (ECOG 4), oler age (>85 years), an the presence of communication about en-oflife issues in or by the last 2 4 weeks of life. From research, it is known that patients with chronic cariorespiratory illnesses have unmet communication nees, 31 an it is possible that if their GPs were able to recognise eath in the near future, they may be able to better manage communication an care. Implications for research an practice Recognising eath in the near future is vital for planning en-of-life care, ecision making, an allocation of resources. The results of this stuy show this, an it may actually pre-empt the initiation of en-of-life iscussions. Across settings, eath in the near future was completely misse in almost 20% of all home eaths, an 80% of all hospital eaths (Figure 1). While it shoul be acknowlege that the ying phase will not always be iscernible, these results point to the fact that GPs may utilise salient triggers in the process of recognition, that is, by assessing palliative care nees more systematically. 20 Systematic assessment of nees can be aie by interventions such as the Gol Stanars Framework (GSF), which is a generic improvement tool, initially use for cancer patients, but currently evelope for any patient with a life-limiting illness, living in any setting. Unlike the Liverpool Care Pathway for the Dying (LCP), which aresses only the last ays of life, the GSF extens to a consierably longer perio before eath, 27 an is use increasingly alongsie the LCP. 32 e377 British Journal of General Practice, June 2011

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